December 8, 2023 • 54 mins
Ever felt like you're shouting into the void when it comes to your health concerns? Well, we have a tale to share about a personal experience with hyperparathyroidism, a lesser-known condition that made us question everything we thought we knew about healthcare. This journey, filled with skepticism, frustration, and eventual relief, proves that the patient's voice is invaluable in their treatment.
We navigate the intricacies of the endocrine system, the complexities of a diagnosis, and the challenge of finding a proper treatment for a parathyroid tumor. There's a valuable lesson here about advocating for your health and making sure you're an active participant in your healthcare journey. We talk about the dangers of blindly trusting medications and share our sigh of relief when the correct diagnosis arrived, marking a clear path forward.
With a diagnosis finally in hand, we tackle the logistical aspects of heading towards recovery. From navigating insurance to choosing the right place for surgery, every step is crucial. Highlighting the expertise of the Norman Parathyroid and Endocrine Center in Tampa, Florida, we discuss the minimally invasive surgical options and the vital importance of post-surgery rest. Wrapping up, we share resources for mental health support, reminding you that this journey might be tough, but you're not alone. Get ready to redefine what you know about taking charge of your health.
Thank you for joining our podcast today. If you have any questions, or comments, or would like to share your own experiences with aromatherapy, please feel free to reach out to us. You can connect with us on social media, or visit our website for additional resources and information.
Don't forget to subscribe to our podcast to stay updated with our latest episodes, and if you enjoyed today's content, please consider leaving us a review on your favorite podcast platform. Your feedback is greatly appreciated, and it helps others discover the valuable insights shared in our series.
We look forward to having you back with us for our next episode, where we'll continue to explore the wonderful world of aromatherapy and its role in promoting mental and emotional well-being. Until then, take a deep breath, relax, and be well. I hope to hear from you soon. Your feedback is most welcome.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Dr. MJ (00:01):
I keep thinking about the words of the phlebotomist in
the ER room that evening.
Her words were simple butprofound you are responsible.
Eventually I learned that thecalcium wasn't just important to
keep my teeth straight, to keepthem from falling out, but it
(00:24):
was important also for my bonehealth, essential for my brain
health, nerves, muscles, heartand blood.
The parathyroid exists to helpto regulate the calcium, and
when the calcium doesn't getwhat it needs, then the
parathyroid steps in.
If the calcium rises too high,the parathyroid stops making PTH
(00:47):
, which helps your body decreasecalcium to a normal level.
When the parathyroid doesn'tstop making PTH, that's when the
calcium rises and theoveractivity of the PTH gland
begins.
What are the problems?
(01:10):
Well, in general you haveoverstimulation, and this
overstimulation leads toincreasingly more and more and
more calcium.
So now I am armed withinformation.
(01:32):
after talking with thephlebotomist in the ER.
I'm unstoppable.
Now I'm doing the research, I'mgetting the information, I know
a little bit about whathyperparathyroid is, what
primary hyperparathyroid is,secondary and tertiary, and I'm
pretty sure that I have primaryhyperparathyroidism.
My doctor was not cooperative.
(01:55):
She did not give me the teststhat I needed to confirm it.
She didn't give me a reason why, other than she didn't think
that it was necessary.
Now these tests don't cost themanything to run, especially if
the insurance is going toreimburse.
And I felt pretty sure that theinsurance would not only
authorize but reimburse,especially with my particular
(02:16):
insurance.
I didn't need authorization forthis test, just like,
eventually, I would learn that Ididn't need authorization for
the surgery.
They were going to cover itbecause of the kind of insurance
that I had.
So what do I know?
I know that calcium isimportant, not just to keep
these beautiful teeth straightand keep them from falling out
of my head, but for my skeletalsystem, to keep my muscles from
(02:41):
weakening, to keep me fromhaving bone fractures and bone
breaks, bone thinning whichcauses pain and great discomfort
.
It's essential for brain health, nerves, muscles, heart and
blood flow.
The parathyroid exists to helpthe regulation of calcium.
If the calcium rises too high,the parathyroid stops making PTH
(03:03):
, the parathyroid hormone, whichhelps our bodies decrease
calcium to a normal level.
When the parathyroid doesn'tstop making PTH, then the
calcium rises and it'soveractive, becomes overactive
the PTH and the calcium and itleads to so many problems when
(03:29):
you have elevated parathyroid,low vitamin D and high calcium,
according to conventional wisdom, you have a tumor.
Well, some people think thatyou'd be able to see it if you
(03:50):
felt around the neck, that you'dbe able to feel it, but the
truth is you can't.
Looking for a parathyroid thatshould be the size of a grain of
rice.
As it grows to enormous size,you would think you would be
able to see it or feel it.
(04:10):
I definitely did.
Now, I'm not talking about agoreter, because a goreter you
can see and sometimes there arethings or tumors or cysts, if
you will in the thyroid that youmight be able to feel.
But remember that parathyroidsits behind the thyroid.
(04:32):
It's the size, normally, of agrain of rice.
Nobody's going to feel that.
But I have seen humongous tumorsand in my own experience mine
was only about two centimetersbut I felt it.
So no wonder I was frustratedwhen I had doctors feel for it
(04:52):
and they didn't feel what I felt.
They didn't have the sameexperience.
Of course that went to theirevaluation.
Of course that went to theirdiagnosis.
Of course they didn't see orfeel what I did, so they
couldn't diagnose me withanything and I was even told
that this was all in my head.
(05:12):
How frustrating is that.
Well, what else do we know?
We know that the tumors aregenerally benign, but sometimes
they are cancerous and,according to the Norman
parathyroid and endocrine center, the only way to solve this
problem is by surgery.
(05:33):
If the calcium is raised over aperiod of time along with the
parathyroid raised, a tumor isthe only with the tumor.
So I kept thinking about thewords that the phlebotomists in
the ER that day.
(05:54):
I was so grateful for her.
She lit a fire under me.
She told me you are responsible.
What did that mean?
It meant that I wasn't done yetdoing the research.
I didn't have a right to throwup my hands in frustration just
because I didn't hear what Ithought that I should hear from
a doctor that I was responsiblefor doing the heavy lifting and
(06:17):
I needed to keep up the job thatI was doing.
Sometimes, when you feel likenobody is listening, you can
become very discouraged.
Rest if you must, but justdon't quit.
So I did the research and I didit in a way that many of you
(06:38):
are able to do.
For some of us, it's just partof the course.
We go on to YouTube, we go onto Google, we talk to people, we
read magazines, and my researchwas little more than that, but
just in doing so, I found outinformation that was so rich and
so helpful.
(06:58):
The biggest help, though, washaving dumb the whole body scan
at First Baptist DuncanvilleChurch in 2016, because that's
where nodules or cysts wereoriginally found in the scan.
I took them to myendocrinologist at the time, and
she would be my thirdendocrinologist.
(07:19):
She agreed with what she saw,but she said, hey, these are so
small that I don't think theinsurance is going to do
anything about it.
Let's watch and wait.
In my research ofhyperparathyroidism, that's a
message that you hear a lot overand over and over again.
Many patients say that theirdoctor wasn't worried about it
(07:40):
and determined that they neededto watch and wait.
While the patient trusts theirdoctor, and this thing continues
to grow and grow and grow.
Many doctors will know a littlebit about the thyroid and how
it works and the impact of thatthyroid on your endocrine system
(08:00):
, but many doctors won't know athing about the parathyroid and
how it functions and theimportance and the link between
high calcium and highparathyroid hormone.
And my goodness, in my mind, Ionly realized during my research
(08:23):
that there are multiplehormones.
So when we say that we havehormonal difficulties, that's a
wide area to kind of trollthrough.
I had no idea of the endocrinesystem and how intricate it was.
I had no idea that it wasnecessary for not just bone
(08:45):
health, but that if yourparathyroid and calcium are not
functioning well, that it couldlead not only to achiness in
your bones and your bonestructure but it could lead to
osteoporosis or osteopenia.
Had no idea that it could leadto high blood pressure or high
(09:06):
cholesterol or high glucose andthat you can have wide swings in
these areas.
And all they're going to do, ifthey are not knowledgeable, is
not give you the test or notjust not test you, but they're
going to give you medicationafter medication after
medication, and for some peopleit becomes too much and they try
(09:29):
themselves to live anaturopathic lifestyle, adding
supplement after supplementafter supplement, and they don't
even know what's going on andfor some of them they're doing
dangerous things.
We are doing dangerous thingsto our body and we're making the
situation worse.
What are we supposed to do?
(09:49):
Doctors are supposed to workwith us, they're supposed to be
our biggest advocates, but weneed to work together.
We need to be able to takenotes on what's happening time,
date, duration, frequency,intensity and then be able to
take that into the doctor'soffice and say you know what?
These are the things that arehappening to me.
This is what I'm going through.
(10:09):
Have you seen this before?
And the doctor's responsibility, if they have not seen this
before, is to refer you to anexpert.
But sometimes what we'll hear isyou know what?
Your symptoms are, so generaland they are that we just need
to do this, or I think you havea metabolic disorder.
(10:30):
I don't want you to hang yourhat on these other things that
you think is going on.
Why don't we give you more ofthis medication?
Or why don't we try thismedication?
And I can't tell you how muchtoday.
That irks me, because whenthey're trying a brand new
medication, it really is becausethey've got some, yes, new
(10:51):
research that might show thatthis might be, this new medicine
might be efficacious to theproblem of the day.
But, just like with some brandnew medications that are on the
market today, helpful initiallyto accomplishing a goal they
will not tell you that we do notknow the long-term consequences
(11:12):
of some medications, but theypromote it anyway.
Well, big Pharma is doing thehappy dance as this is going on,
because they're not able totell you, but they are able to
tell you that the research ispositive and will give us good
outcomes for the problem thatwe're facing.
(11:33):
You're going in blind and couldbe risking your very life.
So when the woman said, whenthe flabotomist said, you are
responsible, she wasn't justsaying go in there in blind
faith and make a decision.
What she was saying is it's myresponsibility to do the
research and if I am before adoctor and they're making a
(11:54):
suggestion and it's notsomething that I want to do
because of whatever reason, butthey insist you're in the wrong
house.
Brothers and sisters, this isyour care and you are
responsible.
You should be able to have aconversation with your doctor
about your concerns.
You should be able to belistened to.
(12:15):
That was not the case with me,and so what I had to do was find
a doctor, or find multipledoctors, who would not only
listen to me, but who would testme and give me the specific
tests that I needed, because bynow, I believe that this tumor
in my neck had grown to thepoint where it was going to kill
me.
My breathing was impacted.
(12:37):
It was difficult for me to laydown in a certain way because of
how the tumor was situated inmy throat.
It was difficult because theheadaches sometimes were so bad
I couldn't pick my head up offmy pillow and I knew it was
because of this thing growing inmy neck, but it was difficult
(12:59):
for her to make the decision tolet me have imaging so she could
see hey, there's somethingreally wrong.
When I told her about the bodyscan that I had in 2016 and told
her that there were two nodulesthat were seen there that were
suspicious, she said or asked mewell, how do you know?
(13:19):
They're still there?
To which I responded wherewould they have gone?
She just muttered under herbreath.
This was an opportunity for herto teach me.
I'm not saying that theywouldn't disappear, but why
would they is a question that Ithought was pretty legitimate.
If I was wrong, it was a placefor her to teach me, and she
(13:43):
didn't.
She reluctantly gave me thetests, or rather, she ordered a
TSH test, but not to look at theparathyroid.
When I got back to theradiologist, the tech told me
she didn't order to look at thePTH, only the thyroid.
I explained to the tech doingthe imaging exam please let the
(14:08):
radiologist know I desperatelyneed my parathyroid exam as well
as my thyroid.
There are two different organsand they do two different things
, and I believe my problem iswith the parathyroid.
She said I'll talk to theradiologist, and she did, and
(14:28):
she looked at it and she sawexactly what was there.
She went to talk with theradiologist and while she was
there, I asked God to help me tofind answers.
That day Before she left, though, I asked her if she was a
(14:49):
praying woman, and she said yes,you know God.
Yes, and I said well, I needyou to be praying for me when
you go back to talk to theradiologists.
I don't want to leave herewithout an answer or a way
forward today, and I know thatwe made a connection because she
came back and told me theradiologist understood it that
(15:10):
he would do the imaging not onjust the thyroid but the
parathyroid, and when theresults came back in the my
chart, it did indeed show asuspicion for primary
hyperparathyroidism.
What a relief we could now puta name on what was happening to
(15:31):
me.
What a relief I now could havedirection and feel confident in
the way that I was proceedingand not just shooting arrows in
the dark.
What a relief.
The journey of a thousand miles, it seemed like, was over and
(15:52):
now it felt like I had only afew more miles until I reached
the finish line where I couldhave a treatment plan.
Because now I knew from theresearch that only surgery could
take care of this problem forme, but that after surgery you
could be cured.
What a relief.
(16:16):
The tumors in parathyroidism areusually benign, but some can be
cancerous.
So again, this is veryimportant to take care of.
I realized that some people arenot situated to be able to just
walk in a doctor's office andsay I want this test or that
test, because they don't havethe money.
And we know that there aredemographic issues as well.
(16:40):
Women more than men are goingto be diagnosed with this.
Three out of four, a hundredthousand people a year, are
diagnosed with this, and we knowthat that's under reported
because doctors are not askingthe right questions and some of
them are downright refusingcertain tests.
So how would we know what thetrue number is?
(17:01):
We know that whites are morelikely to be diagnosed and
treated and experiencedsuccessful outcomes, but that
blacks are diagnosed with thisway more than the white
population, and the impact isgrossly inadequate.
(17:23):
One of the other symptoms thatthis disease can cause are
kidney stones, which are verypainful, and it may end up in
renal failure as well.
Sit back and think about thepeople that you know that are on
dialysis, who are told thatyou're here because of your
(17:49):
diabetes, which is because ofyour genetics or the way you
have been eating, or the factthat you are obese and we've
been talking about that a lot inthe news Obesity, obesity,
obesity, and we've got to getthe weight down.
We've got to get the weightdown, which is a whole other
subject altogether, because howcan you do that when, everywhere
(18:10):
you turn, it's fast food andunhealthy food?
Even if you go to the grocerystore and you shop on the
outside perimeter of the grocerystore, sometimes the very food
that you pick up that you thinkis healthy is dead.
It's dead, it has no nutrientsbecause of all of the poisons
that they are spraying on ourfood, and we blindly pick it up
(18:33):
and we blindly consuming it,thinking that we are doing a
great thing and we are doing thebest we can with what we have.
But again.
It's just like talking with thedoctors, with big pharma
walking in.
This is blind faith.
We're trusting that everythingthat they tell us is the truth
and we walk out of that officefeeling empowered, feeling that
(18:54):
we're on the road to healthyrecovery, when the truth is
they've handed us another poisonpill that is slowly killing us.
What are we supposed to do?
We need to think diligentlyabout the things that we're
putting in our bodies.
We need to think diligentlyabout the conversations that
(19:16):
we're having with the doctorsthat we have.
We need to think diligentlyabout the conversations that
we're having in our family.
We don't generally tend to talkabout these particular issues.
We talk about everything, buteven politics.
But one of the things that I wasable to do is look back in my
(19:38):
mind to see what else was goingon around me.
What were people talking about?
Did I ever hear anything thatwould have led me to do more
investigation?
Stories are important.
Listing is important, and it'sbecause I listened to the women
(20:02):
at first Baptist Dunkevillebecause I listened to Annette
Gumpert and because I listenedto the other women who say hey,
we do this whenever we get anopportunity, whenever the
opportunity presents itself, wetake this information and we
take it to our doctors and thatcan be the foundation for a
discussion and that discussioncould lead to a treatment plan
(20:26):
for whatever is ailing us.
It's just another tool.
If I hadn't been listening andpaying attention because I will
tell you that I thought tomyself.
You know what.
This does not make any sense.
I know that I'm not going tobenefit from this at all.
This is a waste of my money.
The exam usually was two orthree times what I actually paid
for.
I brought my daughter along aswell, because we usually do
(20:48):
things together and we did thetest and then forgot about it.
But when I started experiencingcomplications in the
symptomology and I didn't haveanswers, I remembered that I had
that test done.
And because I had that testdone and had those scans and
(21:09):
imaging ready for the doctor toreview, even though she wasn't
sure what to do with them at thetime it did help me eventually
to come and get a diagnosis,because when I said to the
primary I was seeing at the time, hey, I have these tumors, this
is hormonal and there may besomething we can do she could
(21:33):
have just ignored it.
I thank the church for havingthese people there when they
were there, and I thank God forthe wisdom that he has given me
(21:54):
in doing this research.
It helped me to land andfinally make a decision to have
the surgery, because surgery isthe only cure for this disease.
And, as I said, I realized thatfor some people this is
difficult and I will readilyadmit that I don't have all of
the answers.
(22:14):
Another tool was not just theimaging and the wisdom of the
ladies of Duckville's firstBaptist church, but also support
groups like hyperparathyroidismsupport group on Facebook.
I just never knew how helpfulthose groups could be, but it
really helped to save my life.
(22:35):
There are so many questionsthat people had and in the
questions there were so manypeople who had been through this
before.
They had multitudes of answersand sometimes just hugs over the
way the airwaves online, if youwill.
I've dated myself Love thatsent, support that sent.
(22:57):
It's always there and peopleare always present to respond to
you.
And that is such a big deal,especially when you've been told
that your symptoms are sogeneral, or when you've been
told it's all in your head, orwhen you've been told, hey,
we've spent a million dollarsand we still can't find what's
wrong with you when you've beentold maybe you need to lose some
(23:18):
weight and even after you losethe weight, maybe you need to
lose some weight push back fromthe table because they don't
know and they're not seeking toknow.
They are doctors, are woefullyundereducated on this issue and,
as the phlebotomist said, weare responsible.
Wherever you find anopportunity to talk about this,
(23:40):
if you're impacted by this or ifyou're doing your due diligence
and you believe that this issomething that is impacting you
but you don't have specificdiagnosis yet, talk to your
doctors.
Show them the research that youhave had.
Talk to other people.
Make it a part of the regularconversation.
(24:02):
Ask them questions.
A lot of times we're havingthese things go on and we've had
people to dismiss us and notrespond appropriately, and so we
stop talking about it.
We just suffer in silence andsuffer alone, and then the
disease wins.
It wins because it doesn't havea voice, and I discovered a
(24:23):
long time ago sometimes if youare not that voice, it will not
be heard.
So I have promised myself onthis particular issue, if
nothing else, that people willknow and it's the reason that
I'm doing this podcast today onthis particular subject, because
I am responsible Be persistentif they won't pursue the tests
(24:50):
that you need, which we haven'ttalked about, I think.
What tests do you need?
The DEXA test.
Dexa will test your bones tosee if you have any weakening in
this structure.
If the calcium is being pulledfrom these bones, which are the
(25:10):
reservoir for calcium into thebloodstream, your body is
supposed to flush it out in theurine, which attributes to the
frequent urination that weexperience with
hyperparathyroidism.
And one sign is of the frequenturination.
Another sign, if you will, isdehydration, because you go to
(25:34):
the bathroom all the time andyou constantly need to replace
those electrolytes.
So for some people that haveproblems with keeping up with
that they don't understand why,and they're diabetic it might be
that your sugars are out ofwhack.
Well, if they look and they sayyour sugars are out of whack,
they're just going to adjustthat medication and then give
you a lecture on what you eat.
(25:54):
But the truth might be that allof that is happening because of
hyperparathyroidism.
I am telling you it is profoundhow the hyperparathyroidism
impacts everything else.
It's like because doctors don'tknow.
It's just sitting thereundercover and all they know to
(26:18):
do is what they do every singleday when somebody walks into the
office with these symptoms andthey're a part of a certain
class, because what they've seenindicates to them that because
you are of a certain class,because you have a certain
history, because you havecertain genetics, this must be
(26:39):
the issue, and they only lookthere.
They don't look globally atwhat might be happening.
We have to help them with that.
So we talked about the DEXA, andthat's different.
You don't go in there and askfor just a bone density test.
The DEXA is the gold standardwhen we're looking at diagnosing
(27:00):
hyperparathyroidism.
So you need the DEXA exam, youneed a calcium exam.
They need to test your calcium,they need to test your
hyperparathyroid and they needto test your vitamin D.
Now, many of us struggle withlow vitamin D anyway, and there
are links between low vitamin Dand cancers, which is again why
(27:23):
I say that we can't just saythat, oh, the majority of time
that this disease, this tumor,is benign, we don't know that
the one that we're walkingaround with is benign, so we
shouldn't be sitting backthinking, you know that it isn't
going to be us.
It's like playing Russianroulette, and I don't know about
you, but I don't want to loseat that.
Okay.
(27:43):
So we need the DEXA, we needcalcium, we need parathyroid and
the vitamin D tested.
Now I had other tests done aswell, because I was very sure,
because of other symptoms that Iwas having, that this thing had
really done a number on me.
So not only the regular teststhat they ran I asked them to do
(28:05):
again, but I asked them to lookat, you know, my kidney
function.
I asked them to look at myliver function.
I asked them to look at vitaminK.
I want to know what mypotassium level was, what my
phosphorus level was, my sodiumlevel.
I needed to know all of thosethings because I knew that this
thing had impacted my liver, mykidney, my pancreas.
(28:28):
I knew that there wasinflammation and swelling in
response not just to what I waseating, but this, this disease.
And again, talking to otherpeople who are not familiar,
they want to put this together.
So don't frustrate yourself bytrying to have these
conversations with people whoare not prepared to have the
conversation.
(28:48):
Talk to the experts andsometimes the experts don't have
MD after their name and be okaywith that, because they can
help you to advance your goalsand accomplish your purpose,
which is diagnosis.
So let's talk about the commonsymptoms.
I mentioned those earlier.
But just to put it all together, I want you to have a picture
(29:11):
that might help you tounderstand that what you're
feeling isn't just all in yourhead, even though it is general
Common symptoms, fatigue, justfeeling unwell.
You don't know what's going on,but you don't feel good okay,
and you can't explain itInsomnia, frequent urination,
(29:33):
depression, anxiety,restlessness, agitation, poor
concentration and memory loss.
And sometimes they'll say youknow, this is just a part of
getting older, or get some moresleep.
They are not ready, if you arenot a certain age, to go there
(29:53):
with a discussion of dementia orlike diagnosis.
They think it's just everyone'sgetting older and as they age,
there are certain things thatjust happened and dulling of the
memory is one of those.
But if you don't want to besatisfied with that answer and
at 53 I didn't you got to dosome more investigation.
(30:18):
Body aches, pains, bone pains inmy case the pain was searing.
Sometimes it will wake me upout of my sleep and sometimes it
was difficult to get up off acouch or to get out of the
recliner, to go walking, to walkup the stairs and I had just a
few stairs when I was workingfull-time at a treatment center
(30:40):
in Grand Prairie.
But, man, every time I got towalk it up those stairs I really
had to ready myself for that.
I had to prepare my mind forgoing up and down the stairs or
up and down the hallway.
It just became so burdensome.
Maybe you were experiencing thattoo Increased thirst, and we
(31:03):
talked a little bit about that,because your body is putting out
so much of the calcium and itcan't hold all of that, so it
pushes it out, so you flush itout in your system and that's
why you experienced thedehydration.
And with dehydration comesheadaches and just drinking
water is not going to handle orspeak to the issue of
(31:26):
dehydration.
We think that that is the case.
But when our electrolytes areoff, we need to replace those
electrolytes.
Some people might say gatedraid or pedialyte or you know a
non-sugar form of that.
If that's what you've got,that's what you've got, okay.
Another warning before we go onwith the the symptom list if you
(31:50):
are taking a high bloodpressure medicine and it has
hydrochlorothiazide, htz, Ibelieve that causes, the whole
purpose of the HTZ is for you toexcrete more water to keep
so-called swelling down.
And when they do that that iscausing dehydration.
(32:13):
And so what I went to my doctorand told her was that I needed
a change in my medication, andthe first change we needed to
make was that I wanted amedication that didn't have the
HTZ.
And after much wrangling anddiscussion, eventually she's she
(32:34):
did prescribe the medicationwithout that, and I have no
swelling and haven't had anyswelling for a year, aside from
the hyperparathyroidism.
But she never thought, say, hey, we've been on this HTZ for
years.
Have you ever tried beingwithout it?
What's it?
(32:55):
What do you?
What is it?
Let's see what it would be likeif you don't take it.
And I haven't had a negativeimpact since.
So there you go again, justbeing an advocate for yourself.
Other symptoms of headaches, thehigh blood pressure or
heartburn reflux.
We talked about osteopenia,osteoporosis, bone fractures,
(33:18):
kidney stones, kidney failure,heart palpitations, cardiac
arrhythmia, inflammation, notjust in your feet.
It could be around your heart,it could be in your intestines,
it could be anywhere around yourliver, around your kidneys,
around your pancreas, anywhereit could be inflammation in your
(33:38):
body, and our body doesn't dowell with inflammation.
Weight gain, I'm telling you, Icould do really good throughout
the day.
It was the evenings that I hadthese tremendous cravings for
sweets.
You, if it was one o'clock inthe morning, sometimes I would
have these outlandish desiresfor things that I knew I should
(34:01):
not be putting in my mouth, butI was just craving it so bad,
you know.
So the weight game came andsometimes, even when you're
eating right, you're gonna gainweight.
Muscle cramping where your toesare curling up, or your the back
of your, your legs, are hurtingso bad.
(34:23):
They may tell you to takemagnesium.
But again, if you just take apill, does that speak to the
symptom or does it give you adiagnosis as to what's going on?
And again, you might.
They might tell you to stretchmore, exercise more, and that'll
go away.
Or they may give you musclerelaxers.
You know when they could tellyou to just take magnesium,
(34:46):
because that's another nutrientthat our body needs that many of
us are woefully lacking in.
It's easier to give you aprescription than to tell you to
take something that's naturallyoccurring in nature.
You need to ask more questions.
Okay, that that sounds good,this is a new pill and all.
(35:08):
Maybe we can, maybe we can trythat, but are there things in
nature that I can do first?
Are there other things that Ican do to decrease this
bothersome symptoms?
Like you know, drink this teaor that tea, or take this
supplement or rub this oil onthat's naturally occurring in
nature.
Most of them are not going tosupport that.
(35:33):
Functional medicine doctors.
Will Functional medicinedoctors really focus on finding
a solution?
You're going to present themwith the information and they're
not necessarily going to handyou appeal.
They're going to give you abattery of tests.
These doctors you talk aboutexpensive.
They are indeed expensive.
Most of the tests they run arenot covered by insurance.
(35:56):
But faced with desperation orif you are able to do so, you
may get to diagnosis a lotfaster dealing with functional
medicine doctor than you willdealing with an everyday doctor
that only specializes in onething or another, or primary
care doctor, meaning that theyknow a little bit about a little
(36:19):
bit generally.
If you're a woman, most doctorsthink it's because you're
getting older when you presentwith some of these symptoms,
that it's related to menopauseor some metabolic issues related
to cholesterol hypertension orhigh glucose levels, and we
(36:39):
talked about how it's importantreally not to just accept that
this is the case when you havethis cluster of things going on,
and they've already explainedthat they feel like it's general
.
And if that's the case, thenhow can you give me a specific
diagnosis with general symptoms?
You need to ask more questions.
Who is most impacted by thisdisease?
(37:03):
We've talked about that alittle bit.
Both men and women arediagnosed with this disease, but
100,000 people a year arediagnosed with
hyperparathyroidism and we knowthat that number is woefully
under reported, so that thisnumber is just not accurate.
(37:25):
But after today, we're going todo better in that area, because
you're going to start talkingabout hyperparathyroidism.
You're going to start talkingto your doctors and your family
members and having thisdiscussion around the dinner
table about what they're feelingand experiencing, and I'll tell
you why before we end today.
Very important to hear thestories of others that may lead
(37:48):
us to answer some questions thatwe don't even have yet, but
very important to stick it inyour back pocket for reference
later on.
Women are diagnosed more oftenthan men and why it's so more
apt to be tested for and receivetreatment for this disease
compared to black or Hispanics.
(38:09):
Insurance may or may not coverthese things, but sometimes,
when you talk to the people atthe hospital, they may be able
to work some things through foryou.
I do know that some Medicaidcovers the surgery and the exams
(38:30):
, and other insurances as wellmay cover some but not all.
So you will need to be prepared, really in your mind, that
finding or walking this pathwill be a process.
For some people.
It won't be walking into thedoctor's office and having them
say yes, yes, yes to all ofthese things, and you may need
(38:51):
to see multiple doctors toaccomplish this task I did.
When one doctor told me theywouldn't do a test, I went to
another.
When the other said I'm notsure what's going on here, I
asked for a referral, and it'sjust a habit with me to ask for
a referral.
I keep I need to keepremembering or reminding myself
that with my insurance I don'tneed a referral.
But it may be that they do haveto call to get permission to do
(39:18):
this thing or that, but I'venever had a problem with this.
What insurance is it?
I know a lot of people ask methat and sometimes I'm read as
in to say, but it is the TriCareChamp VA insurance and then the
secondary insurance is the same, and the reason that is is
because my husband is 100%disabled veteran and so I, as a
(39:43):
dependent, am on that insurance.
I have a copay.
I can't do dental on thatinsurance or vision, and so I
have secondary insurance forthat as well, which is I didn't
mention the vision changes asanother symptom Of this disease
as well, and it could be becauseof what's happening with the
(40:05):
blood flow in your brain and thepressure that you feel from the
migraines that you get.
So every insurance is different, so we all have to approach
this issue from you know things,the tools that we have
personally, and the things inthe resources that are available
to us that we can make use of,and just prepare yourself to get
(40:29):
those ducks in a row as a partof your research, as a part of
the discussion for the healingjourney.
And I needed to do all of thosethings to see what I could and
could not do.
When my doctor came to an endof what she was willing to do, I
just started referring myself.
I referred myself to the NormanPerrithiroid and Endocrine
(40:51):
Center in Tampa, florida,because they didn't need a
referral, and the reason theydidn't need a referral in
general was not because of myinsurance, but because they
realized that doctors are noteducated enough and many times
patients know what's going onwith them and they figured it
(41:14):
out long before their doctorshave.
So if you're thinking about theNorman Perrithiroid Endocrine
Center, get those tests wetalked about earlier, the DEXA.
The vitamin D, your potassiumand phosphorus are some that are
good to have.
They really just need to threethe Perrithiroid and the calcium
and, I would say, over at leasta few months period or six
(41:38):
months period to give them someidea.
They will give you a permanentdiagnosis or an official
diagnosis, and from that theywill determine if they will do
the surgery, and most times theywill.
I will tell you that in myresearch that some people are
having biopsies on these, these,these adenomas and I knew the
(42:04):
one disqualifying thing forNorman was having had a biopsy
on that particular area theywon't do a surgery.
If that has been the case,there are other doctors that
have been talked about or othercenters that have been talked
about as really good places tohave the surgery.
(42:26):
When you get to having thesurgery, I chose a minimally
invasive surgery, and so my scaris.
It's probably smaller than thetumor itself, it's about a
little longer, I think, than aninch, and it's.
(42:47):
It's fading, it's healing andit looks pretty.
It looks pretty good for beingcut on a little over a month, or
a month and a couple of daysago.
The other thing is that thehealing time with a minimally
invasive surgery is not monthsand you know months and months
(43:10):
down the line.
One person that had thissurgery had it like on a
Saturday and was back at work onthe Monday afterward.
It's good to listen to yourbody and to take your time.
Everybody's healing journey isgoing to be very different.
(43:30):
The testing to see if you haveother parathyroid problems,
because sometimes people aretaking not just one but multiple
out and some people are takingthree and a half out.
Remember you have the fourparathyroids, one around each
side.
The size of a grain of rice iswhat it should be.
(43:52):
But sometimes this disease hasreally gone to be very
overactive and those glands andthe tumors just grow, grow and
grow.
And so with the Normanparathyroid center they will
test each one of the otherparathyroids to see if they have
(44:13):
been impacted and if they aresick then they take those out.
They leave at least a half onethere because if not, then
you'll have problems with lowcalcium and other issues, which
is just as complicating as highcalcium.
They leave you with somethingto help with some degree of
(44:34):
regulation for the endocrinesystem in general.
We talked about your downtime atthe Norman parathyroid center.
The surgeon himself is going togive you a number for you to
contact him whenever you need tocontact him, and I think I
(44:54):
called him once and he told methat what I was experiencing was
natural.
I went back to the roadmap thatthey gave, because they have an
app and on that, when youdownload that app, it tells you
everything that you need to knowand what to anticipate in the
days after.
But your doctor, who gives youyour diagnosis, is the doctor
who's going to do your surgery.
(45:15):
He's going to do your follow upand he's going to be available
for you if you have anyquestions, for you and your
family.
So that was very helpful andthe surgery itself took less
than 30 minutes to do.
They thought that my parathyroidtumor was complicatedly well,
we'll not say just that, butthey thought it was inner woven
(45:39):
into my thyroid and that'sprobably why it appeared on the
imaging in the full body scan astwo nodules the way it did.
But there was nothing thereexcept for that one offending
parathyroid tumor and so theywere able to remove that.
(45:59):
They're going to give you apicture at the Norman
parathyroid center center whichI keep looking at.
It, for me, is mesmerizing.
The reason that it is isbecause this thing caused me so
many problems and it has a facenow, even though it is a thing,
I can look at it as the reasonfor all of this.
When people were telling methis was all in my head, it
(46:22):
wasn't in my head, it was in myneck and I call this tumor
Freddie.
Imagine why, if you stay ingeneral in that area at the
hotels that they suggest the,they will pick you up from the
hotel and take you to thehospital back and forth, and so
(46:46):
it was wonderful, and then thehotel itself will take you to
the airport.
I mean, what kind of service isthat?
Y'all?
So that was very helpful.
Can you do this?
Can you do this by yourself?
There are people that fly downthere and they fly back home and
they're by themselves.
So this is totally doable Ifyou choose the Norman
parathyroid center and I'm notaffiliated with the Norman
(47:08):
parathyroid center other thanthe honey they touched me, okay,
and help to make my life whole.
But I will say look, this was awonderful experience.
I'm not talking about manyproblems that I had.
I can remember the name ofeveryone who touched me before
(47:29):
and during that surgery.
I could never do that before.
That's how immediate the changewas.
The bone pain went awayimmediately, the headaches went
away immediately.
I am still struggling with somethings because the vitamin D is
so low that it is impactingagain my my bones, and so I'm
(47:53):
working on that.
Also, the anemia I don't haveanemia, but I have issues with
the iron levels, and so I'mhaving to take iron infusions
because I can't take iron pills.
My body doesn't tolerate that.
But that's important becausemost people, after have this
(48:15):
cure from hyperparathyroidism,think that they won't continue
to have any struggles whatsoever.
But remember, sometimes we'redealing with comorbidities,
meaning that we might have morethan one diagnosis, but when we
remove one, these symptoms fromthe other come to the fore, and
then that we have to deal withthose.
We've got to learn how to copewith those.
(48:36):
So it's important to understandthe physical dynamics of what
you're experiencing and knowthat this is a tool towards
whole body health.
Okay, so I'm taking care of nowthese things as a part of my
(48:57):
everyday regimen, my healthregimen.
I'm journaling, I'm seeingevery day how I feel, what are
the changes that I see.
It doesn't mean that I pick upthe phone and call a doctor
immediately.
Sometimes after the surgery,people's calcium is still high
and it takes a little while forthe other parathyroids to wake
(49:21):
up and start doing their job.
So some people will experiencea little lag in time in their
healing.
But remember, everybody'sjourney is a little different.
Some people gain a few pounds.
Remember, sometimes there'sinflammation, that's there, or
something else is happening, andso you want to continue to look
at what's happening everysingle day, but not down to
(49:45):
conclusions that this surgerydidn't work.
The group that I'm in, thehyperparathyroid support group
on the Facebook.
If you are experiencing this oryou suspect that you are
struggling withhyperparathyroidism, especially
primary hyperparathyroidism,then this is a good place to
flesh out any questions that youmight have.
(50:07):
I expressed gratitude to so manypeople earlier on.
I just want to again take thetime to thank the Norman
Parathyroidist Center and DrRhodes there, who did my surgery
, and all of the staff there.
They were wonderful.
Annette Guppard, kathyManders-Anden was helpful.
(50:30):
Also thank Larry.
I want to give you your lastname, but Larry, you know who
you are at DFBC, who has alwaysshown my family so much love,
and I just thank you and Ann andeveryone, just thank you so
(50:51):
much for being present in thelife of the Jeffersons.
You are so consistent and Ijust wish God's blessings for
you.
I know this is a lot ofinformation, but you don't have
to fight this battle alone.
Use this podcast as a referenceto go back over and over and
over again as you need to getthat information.
(51:12):
Use the Facebook support group.
Go on to YouTube, which is whatI went to YouTube University
and initially my family was likewhat is she doing?
But we got to the place wherethey learned to just sit there
while I went through my process.
There was no complaints.
They knew mama is doing herthing and if I hadn't done, I
(51:37):
would not have gotten theseanswers.
And you can do it.
We're here for you at theComing Home Podcast, the
Warriors Purse.
In case you have any additionalquestions, just contact us at
connect1atwarriorspursecom orMHFA or mental health first aid
(52:02):
at warriorspursecom, and I hopethat this has been very
beneficial for you.
I hope that if you findanything that intrigues you
concerning yourself and what youmight be going through, that
you can use this information tohelp you build a foundation
(52:23):
toward better health.
I love you, and there ain'tnothing you can do about it.
Until next time, welcome home.
In case you haven't heard it,god bless.
I keep thinking about the words of the phlebotomist in
the ER room that evening.
Her words were simple butprofound you are responsible.
Eventually I learned that thecalcium wasn't just important to
keep my teeth straight, to keepthem from falling out, but it
(00:24):
was important also for my bonehealth, essential for my brain
health, nerves, muscles, heartand blood.
The parathyroid exists to helpto regulate the calcium, and
when the calcium doesn't getwhat it needs, then the
parathyroid steps in.
If the calcium rises too high,the parathyroid stops making PTH
(00:47):
, which helps your body decreasecalcium to a normal level.
When the parathyroid doesn'tstop making PTH, that's when the
calcium rises and theoveractivity of the PTH gland
begins.
What are the problems?
(01:10):
Well, in general you haveoverstimulation, and this
overstimulation leads toincreasingly more and more and
more calcium.
So now I am armed withinformation.
(01:32):
after talking with thephlebotomist in the ER.
I'm unstoppable.
Now I'm doing the research, I'mgetting the information, I know
a little bit about whathyperparathyroid is, what
primary hyperparathyroid is,secondary and tertiary, and I'm
pretty sure that I have primaryhyperparathyroidism.
My doctor was not cooperative.
(01:55):
She did not give me the teststhat I needed to confirm it.
She didn't give me a reason why, other than she didn't think
that it was necessary.
Now these tests don't cost themanything to run, especially if
the insurance is going toreimburse.
And I felt pretty sure that theinsurance would not only
authorize but reimburse,especially with my particular
(02:16):
insurance.
I didn't need authorization forthis test, just like,
eventually, I would learn that Ididn't need authorization for
the surgery.
They were going to cover itbecause of the kind of insurance
that I had.
So what do I know?
I know that calcium isimportant, not just to keep
these beautiful teeth straightand keep them from falling out
of my head, but for my skeletalsystem, to keep my muscles from
(02:41):
weakening, to keep me fromhaving bone fractures and bone
breaks, bone thinning whichcauses pain and great discomfort
.
It's essential for brain health, nerves, muscles, heart and
blood flow.
The parathyroid exists to helpthe regulation of calcium.
If the calcium rises too high,the parathyroid stops making PTH
(03:03):
, the parathyroid hormone, whichhelps our bodies decrease
calcium to a normal level.
When the parathyroid doesn'tstop making PTH, then the
calcium rises and it'soveractive, becomes overactive
the PTH and the calcium and itleads to so many problems when
(03:29):
you have elevated parathyroid,low vitamin D and high calcium,
according to conventional wisdom, you have a tumor.
Well, some people think thatyou'd be able to see it if you
(03:50):
felt around the neck, that you'dbe able to feel it, but the
truth is you can't.
Looking for a parathyroid thatshould be the size of a grain of
rice.
As it grows to enormous size,you would think you would be
able to see it or feel it.
(04:10):
I definitely did.
Now, I'm not talking about agoreter, because a goreter you
can see and sometimes there arethings or tumors or cysts, if
you will in the thyroid that youmight be able to feel.
But remember that parathyroidsits behind the thyroid.
(04:32):
It's the size, normally, of agrain of rice.
Nobody's going to feel that.
But I have seen humongous tumorsand in my own experience mine
was only about two centimetersbut I felt it.
So no wonder I was frustratedwhen I had doctors feel for it
(04:52):
and they didn't feel what I felt.
They didn't have the sameexperience.
Of course that went to theirevaluation.
Of course that went to theirdiagnosis.
Of course they didn't see orfeel what I did, so they
couldn't diagnose me withanything and I was even told
that this was all in my head.
(05:12):
How frustrating is that.
Well, what else do we know?
We know that the tumors aregenerally benign, but sometimes
they are cancerous and,according to the Norman
parathyroid and endocrine center, the only way to solve this
problem is by surgery.
(05:33):
If the calcium is raised over aperiod of time along with the
parathyroid raised, a tumor isthe only with the tumor.
So I kept thinking about thewords that the phlebotomists in
the ER that day.
(05:54):
I was so grateful for her.
She lit a fire under me.
She told me you are responsible.
What did that mean?
It meant that I wasn't done yetdoing the research.
I didn't have a right to throwup my hands in frustration just
because I didn't hear what Ithought that I should hear from
a doctor that I was responsiblefor doing the heavy lifting and
(06:17):
I needed to keep up the job thatI was doing.
Sometimes, when you feel likenobody is listening, you can
become very discouraged.
Rest if you must, but justdon't quit.
So I did the research and I didit in a way that many of you
(06:38):
are able to do.
For some of us, it's just partof the course.
We go on to YouTube, we go onto Google, we talk to people, we
read magazines, and my researchwas little more than that, but
just in doing so, I found outinformation that was so rich and
so helpful.
(06:58):
The biggest help, though, washaving dumb the whole body scan
at First Baptist DuncanvilleChurch in 2016, because that's
where nodules or cysts wereoriginally found in the scan.
I took them to myendocrinologist at the time, and
she would be my thirdendocrinologist.
(07:19):
She agreed with what she saw,but she said, hey, these are so
small that I don't think theinsurance is going to do
anything about it.
Let's watch and wait.
In my research ofhyperparathyroidism, that's a
message that you hear a lot overand over and over again.
Many patients say that theirdoctor wasn't worried about it
(07:40):
and determined that they neededto watch and wait.
While the patient trusts theirdoctor, and this thing continues
to grow and grow and grow.
Many doctors will know a littlebit about the thyroid and how
it works and the impact of thatthyroid on your endocrine system
(08:00):
, but many doctors won't know athing about the parathyroid and
how it functions and theimportance and the link between
high calcium and highparathyroid hormone.
And my goodness, in my mind, Ionly realized during my research
(08:23):
that there are multiplehormones.
So when we say that we havehormonal difficulties, that's a
wide area to kind of trollthrough.
I had no idea of the endocrinesystem and how intricate it was.
I had no idea that it wasnecessary for not just bone
(08:45):
health, but that if yourparathyroid and calcium are not
functioning well, that it couldlead not only to achiness in
your bones and your bonestructure but it could lead to
osteoporosis or osteopenia.
Had no idea that it could leadto high blood pressure or high
(09:06):
cholesterol or high glucose andthat you can have wide swings in
these areas.
And all they're going to do, ifthey are not knowledgeable, is
not give you the test or notjust not test you, but they're
going to give you medicationafter medication after
medication, and for some peopleit becomes too much and they try
(09:29):
themselves to live anaturopathic lifestyle, adding
supplement after supplementafter supplement, and they don't
even know what's going on andfor some of them they're doing
dangerous things.
We are doing dangerous thingsto our body and we're making the
situation worse.
What are we supposed to do?
(09:49):
Doctors are supposed to workwith us, they're supposed to be
our biggest advocates, but weneed to work together.
We need to be able to takenotes on what's happening time,
date, duration, frequency,intensity and then be able to
take that into the doctor'soffice and say you know what?
These are the things that arehappening to me.
This is what I'm going through.
(10:09):
Have you seen this before?
And the doctor's responsibility, if they have not seen this
before, is to refer you to anexpert.
But sometimes what we'll hear isyou know what?
Your symptoms are, so generaland they are that we just need
to do this, or I think you havea metabolic disorder.
(10:30):
I don't want you to hang yourhat on these other things that
you think is going on.
Why don't we give you more ofthis medication?
Or why don't we try thismedication?
And I can't tell you how muchtoday.
That irks me, because whenthey're trying a brand new
medication, it really is becausethey've got some, yes, new
(10:51):
research that might show thatthis might be, this new medicine
might be efficacious to theproblem of the day.
But, just like with some brandnew medications that are on the
market today, helpful initiallyto accomplishing a goal they
will not tell you that we do notknow the long-term consequences
(11:12):
of some medications, but theypromote it anyway.
Well, big Pharma is doing thehappy dance as this is going on,
because they're not able totell you, but they are able to
tell you that the research ispositive and will give us good
outcomes for the problem thatwe're facing.
(11:33):
You're going in blind and couldbe risking your very life.
So when the woman said, whenthe flabotomist said, you are
responsible, she wasn't justsaying go in there in blind
faith and make a decision.
What she was saying is it's myresponsibility to do the
research and if I am before adoctor and they're making a
(11:54):
suggestion and it's notsomething that I want to do
because of whatever reason, butthey insist you're in the wrong
house.
Brothers and sisters, this isyour care and you are
responsible.
You should be able to have aconversation with your doctor
about your concerns.
You should be able to belistened to.
(12:15):
That was not the case with me,and so what I had to do was find
a doctor, or find multipledoctors, who would not only
listen to me, but who would testme and give me the specific
tests that I needed, because bynow, I believe that this tumor
in my neck had grown to thepoint where it was going to kill
me.
My breathing was impacted.
(12:37):
It was difficult for me to laydown in a certain way because of
how the tumor was situated inmy throat.
It was difficult because theheadaches sometimes were so bad
I couldn't pick my head up offmy pillow and I knew it was
because of this thing growing inmy neck, but it was difficult
(12:59):
for her to make the decision tolet me have imaging so she could
see hey, there's somethingreally wrong.
When I told her about the bodyscan that I had in 2016 and told
her that there were two nodulesthat were seen there that were
suspicious, she said or asked mewell, how do you know?
(13:19):
They're still there?
To which I responded wherewould they have gone?
She just muttered under herbreath.
This was an opportunity for herto teach me.
I'm not saying that theywouldn't disappear, but why
would they is a question that Ithought was pretty legitimate.
If I was wrong, it was a placefor her to teach me, and she
(13:43):
didn't.
She reluctantly gave me thetests, or rather, she ordered a
TSH test, but not to look at theparathyroid.
When I got back to theradiologist, the tech told me
she didn't order to look at thePTH, only the thyroid.
I explained to the tech doingthe imaging exam please let the
(14:08):
radiologist know I desperatelyneed my parathyroid exam as well
as my thyroid.
There are two different organsand they do two different things
, and I believe my problem iswith the parathyroid.
She said I'll talk to theradiologist, and she did, and
(14:28):
she looked at it and she sawexactly what was there.
She went to talk with theradiologist and while she was
there, I asked God to help me tofind answers.
That day Before she left, though, I asked her if she was a
(14:49):
praying woman, and she said yes,you know God.
Yes, and I said well, I needyou to be praying for me when
you go back to talk to theradiologists.
I don't want to leave herewithout an answer or a way
forward today, and I know thatwe made a connection because she
came back and told me theradiologist understood it that
(15:10):
he would do the imaging not onjust the thyroid but the
parathyroid, and when theresults came back in the my
chart, it did indeed show asuspicion for primary
hyperparathyroidism.
What a relief we could now puta name on what was happening to
(15:31):
me.
What a relief I now could havedirection and feel confident in
the way that I was proceedingand not just shooting arrows in
the dark.
What a relief.
The journey of a thousand miles, it seemed like, was over and
(15:52):
now it felt like I had only afew more miles until I reached
the finish line where I couldhave a treatment plan.
Because now I knew from theresearch that only surgery could
take care of this problem forme, but that after surgery you
could be cured.
What a relief.
(16:16):
The tumors in parathyroidism areusually benign, but some can be
cancerous.
So again, this is veryimportant to take care of.
I realized that some people arenot situated to be able to just
walk in a doctor's office andsay I want this test or that
test, because they don't havethe money.
And we know that there aredemographic issues as well.
(16:40):
Women more than men are goingto be diagnosed with this.
Three out of four, a hundredthousand people a year, are
diagnosed with this, and we knowthat that's under reported
because doctors are not askingthe right questions and some of
them are downright refusingcertain tests.
So how would we know what thetrue number is?
(17:01):
We know that whites are morelikely to be diagnosed and
treated and experiencedsuccessful outcomes, but that
blacks are diagnosed with thisway more than the white
population, and the impact isgrossly inadequate.
(17:23):
One of the other symptoms thatthis disease can cause are
kidney stones, which are verypainful, and it may end up in
renal failure as well.
Sit back and think about thepeople that you know that are on
dialysis, who are told thatyou're here because of your
(17:49):
diabetes, which is because ofyour genetics or the way you
have been eating, or the factthat you are obese and we've
been talking about that a lot inthe news Obesity, obesity,
obesity, and we've got to getthe weight down.
We've got to get the weightdown, which is a whole other
subject altogether, because howcan you do that when, everywhere
(18:10):
you turn, it's fast food andunhealthy food?
Even if you go to the grocerystore and you shop on the
outside perimeter of the grocerystore, sometimes the very food
that you pick up that you thinkis healthy is dead.
It's dead, it has no nutrientsbecause of all of the poisons
that they are spraying on ourfood, and we blindly pick it up
(18:33):
and we blindly consuming it,thinking that we are doing a
great thing and we are doing thebest we can with what we have.
But again.
It's just like talking with thedoctors, with big pharma
walking in.
This is blind faith.
We're trusting that everythingthat they tell us is the truth
and we walk out of that officefeeling empowered, feeling that
(18:54):
we're on the road to healthyrecovery, when the truth is
they've handed us another poisonpill that is slowly killing us.
What are we supposed to do?
We need to think diligentlyabout the things that we're
putting in our bodies.
We need to think diligentlyabout the conversations that
(19:16):
we're having with the doctorsthat we have.
We need to think diligentlyabout the conversations that
we're having in our family.
We don't generally tend to talkabout these particular issues.
We talk about everything, buteven politics.
But one of the things that I wasable to do is look back in my
(19:38):
mind to see what else was goingon around me.
What were people talking about?
Did I ever hear anything thatwould have led me to do more
investigation?
Stories are important.
Listing is important, and it'sbecause I listened to the women
(20:02):
at first Baptist Dunkevillebecause I listened to Annette
Gumpert and because I listenedto the other women who say hey,
we do this whenever we get anopportunity, whenever the
opportunity presents itself, wetake this information and we
take it to our doctors and thatcan be the foundation for a
discussion and that discussioncould lead to a treatment plan
(20:26):
for whatever is ailing us.
It's just another tool.
If I hadn't been listening andpaying attention because I will
tell you that I thought tomyself.
You know what.
This does not make any sense.
I know that I'm not going tobenefit from this at all.
This is a waste of my money.
The exam usually was two orthree times what I actually paid
for.
I brought my daughter along aswell, because we usually do
(20:48):
things together and we did thetest and then forgot about it.
But when I started experiencingcomplications in the
symptomology and I didn't haveanswers, I remembered that I had
that test done.
And because I had that testdone and had those scans and
(21:09):
imaging ready for the doctor toreview, even though she wasn't
sure what to do with them at thetime it did help me eventually
to come and get a diagnosis,because when I said to the
primary I was seeing at the time, hey, I have these tumors, this
is hormonal and there may besomething we can do she could
(21:33):
have just ignored it.
I thank the church for havingthese people there when they
were there, and I thank God forthe wisdom that he has given me
(21:54):
in doing this research.
It helped me to land andfinally make a decision to have
the surgery, because surgery isthe only cure for this disease.
And, as I said, I realized thatfor some people this is
difficult and I will readilyadmit that I don't have all of
the answers.
(22:14):
Another tool was not just theimaging and the wisdom of the
ladies of Duckville's firstBaptist church, but also support
groups like hyperparathyroidismsupport group on Facebook.
I just never knew how helpfulthose groups could be, but it
really helped to save my life.
(22:35):
There are so many questionsthat people had and in the
questions there were so manypeople who had been through this
before.
They had multitudes of answersand sometimes just hugs over the
way the airwaves online, if youwill.
I've dated myself Love thatsent, support that sent.
(22:57):
It's always there and peopleare always present to respond to
you.
And that is such a big deal,especially when you've been told
that your symptoms are sogeneral, or when you've been
told it's all in your head, orwhen you've been told, hey,
we've spent a million dollarsand we still can't find what's
wrong with you when you've beentold maybe you need to lose some
(23:18):
weight and even after you losethe weight, maybe you need to
lose some weight push back fromthe table because they don't
know and they're not seeking toknow.
They are doctors, are woefullyundereducated on this issue and,
as the phlebotomist said, weare responsible.
Wherever you find anopportunity to talk about this,
(23:40):
if you're impacted by this or ifyou're doing your due diligence
and you believe that this issomething that is impacting you
but you don't have specificdiagnosis yet, talk to your
doctors.
Show them the research that youhave had.
Talk to other people.
Make it a part of the regularconversation.
(24:02):
Ask them questions.
A lot of times we're havingthese things go on and we've had
people to dismiss us and notrespond appropriately, and so we
stop talking about it.
We just suffer in silence andsuffer alone, and then the
disease wins.
It wins because it doesn't havea voice, and I discovered a
(24:23):
long time ago sometimes if youare not that voice, it will not
be heard.
So I have promised myself onthis particular issue, if
nothing else, that people willknow and it's the reason that
I'm doing this podcast today onthis particular subject, because
I am responsible Be persistentif they won't pursue the tests
(24:50):
that you need, which we haven'ttalked about, I think.
What tests do you need?
The DEXA test.
Dexa will test your bones tosee if you have any weakening in
this structure.
If the calcium is being pulledfrom these bones, which are the
(25:10):
reservoir for calcium into thebloodstream, your body is
supposed to flush it out in theurine, which attributes to the
frequent urination that weexperience with
hyperparathyroidism.
And one sign is of the frequenturination.
Another sign, if you will, isdehydration, because you go to
(25:34):
the bathroom all the time andyou constantly need to replace
those electrolytes.
So for some people that haveproblems with keeping up with
that they don't understand why,and they're diabetic it might be
that your sugars are out ofwhack.
Well, if they look and they sayyour sugars are out of whack,
they're just going to adjustthat medication and then give
you a lecture on what you eat.
(25:54):
But the truth might be that allof that is happening because of
hyperparathyroidism.
I am telling you it is profoundhow the hyperparathyroidism
impacts everything else.
It's like because doctors don'tknow.
It's just sitting thereundercover and all they know to
(26:18):
do is what they do every singleday when somebody walks into the
office with these symptoms andthey're a part of a certain
class, because what they've seenindicates to them that because
you are of a certain class,because you have a certain
history, because you havecertain genetics, this must be
(26:39):
the issue, and they only lookthere.
They don't look globally atwhat might be happening.
We have to help them with that.
So we talked about the DEXA, andthat's different.
You don't go in there and askfor just a bone density test.
The DEXA is the gold standardwhen we're looking at diagnosing
(27:00):
hyperparathyroidism.
So you need the DEXA exam, youneed a calcium exam.
They need to test your calcium,they need to test your
hyperparathyroid and they needto test your vitamin D.
Now, many of us struggle withlow vitamin D anyway, and there
are links between low vitamin Dand cancers, which is again why
(27:23):
I say that we can't just saythat, oh, the majority of time
that this disease, this tumor,is benign, we don't know that
the one that we're walkingaround with is benign, so we
shouldn't be sitting backthinking, you know that it isn't
going to be us.
It's like playing Russianroulette, and I don't know about
you, but I don't want to loseat that.
Okay.
(27:43):
So we need the DEXA, we needcalcium, we need parathyroid and
the vitamin D tested.
Now I had other tests done aswell, because I was very sure,
because of other symptoms that Iwas having, that this thing had
really done a number on me.
So not only the regular teststhat they ran I asked them to do
(28:05):
again, but I asked them to lookat, you know, my kidney
function.
I asked them to look at myliver function.
I asked them to look at vitaminK.
I want to know what mypotassium level was, what my
phosphorus level was, my sodiumlevel.
I needed to know all of thosethings because I knew that this
thing had impacted my liver, mykidney, my pancreas.
(28:28):
I knew that there wasinflammation and swelling in
response not just to what I waseating, but this, this disease.
And again, talking to otherpeople who are not familiar,
they want to put this together.
So don't frustrate yourself bytrying to have these
conversations with people whoare not prepared to have the
conversation.
(28:48):
Talk to the experts andsometimes the experts don't have
MD after their name and be okaywith that, because they can
help you to advance your goalsand accomplish your purpose,
which is diagnosis.
So let's talk about the commonsymptoms.
I mentioned those earlier.
But just to put it all together, I want you to have a picture
(29:11):
that might help you tounderstand that what you're
feeling isn't just all in yourhead, even though it is general
Common symptoms, fatigue, justfeeling unwell.
You don't know what's going on,but you don't feel good okay,
and you can't explain itInsomnia, frequent urination,
(29:33):
depression, anxiety,restlessness, agitation, poor
concentration and memory loss.
And sometimes they'll say youknow, this is just a part of
getting older, or get some moresleep.
They are not ready, if you arenot a certain age, to go there
(29:53):
with a discussion of dementia orlike diagnosis.
They think it's just everyone'sgetting older and as they age,
there are certain things thatjust happened and dulling of the
memory is one of those.
But if you don't want to besatisfied with that answer and
at 53 I didn't you got to dosome more investigation.
(30:18):
Body aches, pains, bone pains inmy case the pain was searing.
Sometimes it will wake me upout of my sleep and sometimes it
was difficult to get up off acouch or to get out of the
recliner, to go walking, to walkup the stairs and I had just a
few stairs when I was workingfull-time at a treatment center
(30:40):
in Grand Prairie.
But, man, every time I got towalk it up those stairs I really
had to ready myself for that.
I had to prepare my mind forgoing up and down the stairs or
up and down the hallway.
It just became so burdensome.
Maybe you were experiencing thattoo Increased thirst, and we
(31:03):
talked a little bit about that,because your body is putting out
so much of the calcium and itcan't hold all of that, so it
pushes it out, so you flush itout in your system and that's
why you experienced thedehydration.
And with dehydration comesheadaches and just drinking
water is not going to handle orspeak to the issue of
(31:26):
dehydration.
We think that that is the case.
But when our electrolytes areoff, we need to replace those
electrolytes.
Some people might say gatedraid or pedialyte or you know a
non-sugar form of that.
If that's what you've got,that's what you've got, okay.
Another warning before we go onwith the the symptom list if you
(31:50):
are taking a high bloodpressure medicine and it has
hydrochlorothiazide, htz, Ibelieve that causes, the whole
purpose of the HTZ is for you toexcrete more water to keep
so-called swelling down.
And when they do that that iscausing dehydration.
(32:13):
And so what I went to my doctorand told her was that I needed
a change in my medication, andthe first change we needed to
make was that I wanted amedication that didn't have the
HTZ.
And after much wrangling anddiscussion, eventually she's she
(32:34):
did prescribe the medicationwithout that, and I have no
swelling and haven't had anyswelling for a year, aside from
the hyperparathyroidism.
But she never thought, say, hey, we've been on this HTZ for
years.
Have you ever tried beingwithout it?
What's it?
(32:55):
What do you?
What is it?
Let's see what it would be likeif you don't take it.
And I haven't had a negativeimpact since.
So there you go again, justbeing an advocate for yourself.
Other symptoms of headaches, thehigh blood pressure or
heartburn reflux.
We talked about osteopenia,osteoporosis, bone fractures,
(33:18):
kidney stones, kidney failure,heart palpitations, cardiac
arrhythmia, inflammation, notjust in your feet.
It could be around your heart,it could be in your intestines,
it could be anywhere around yourliver, around your kidneys,
around your pancreas, anywhereit could be inflammation in your
(33:38):
body, and our body doesn't dowell with inflammation.
Weight gain, I'm telling you, Icould do really good throughout
the day.
It was the evenings that I hadthese tremendous cravings for
sweets.
You, if it was one o'clock inthe morning, sometimes I would
have these outlandish desiresfor things that I knew I should
(34:01):
not be putting in my mouth, butI was just craving it so bad,
you know.
So the weight game came andsometimes, even when you're
eating right, you're gonna gainweight.
Muscle cramping where your toesare curling up, or your the back
of your, your legs, are hurtingso bad.
(34:23):
They may tell you to takemagnesium.
But again, if you just take apill, does that speak to the
symptom or does it give you adiagnosis as to what's going on?
And again, you might.
They might tell you to stretchmore, exercise more, and that'll
go away.
Or they may give you musclerelaxers.
You know when they could tellyou to just take magnesium,
(34:46):
because that's another nutrientthat our body needs that many of
us are woefully lacking in.
It's easier to give you aprescription than to tell you to
take something that's naturallyoccurring in nature.
You need to ask more questions.
Okay, that that sounds good,this is a new pill and all.
(35:08):
Maybe we can, maybe we can trythat, but are there things in
nature that I can do first?
Are there other things that Ican do to decrease this
bothersome symptoms?
Like you know, drink this teaor that tea, or take this
supplement or rub this oil onthat's naturally occurring in
nature.
Most of them are not going tosupport that.
(35:33):
Functional medicine doctors.
Will Functional medicinedoctors really focus on finding
a solution?
You're going to present themwith the information and they're
not necessarily going to handyou appeal.
They're going to give you abattery of tests.
These doctors you talk aboutexpensive.
They are indeed expensive.
Most of the tests they run arenot covered by insurance.
(35:56):
But faced with desperation orif you are able to do so, you
may get to diagnosis a lotfaster dealing with functional
medicine doctor than you willdealing with an everyday doctor
that only specializes in onething or another, or primary
care doctor, meaning that theyknow a little bit about a little
(36:19):
bit generally.
If you're a woman, most doctorsthink it's because you're
getting older when you presentwith some of these symptoms,
that it's related to menopauseor some metabolic issues related
to cholesterol hypertension orhigh glucose levels, and we
(36:39):
talked about how it's importantreally not to just accept that
this is the case when you havethis cluster of things going on,
and they've already explainedthat they feel like it's general
.
And if that's the case, thenhow can you give me a specific
diagnosis with general symptoms?
You need to ask more questions.
Who is most impacted by thisdisease?
(37:03):
We've talked about that alittle bit.
Both men and women arediagnosed with this disease, but
100,000 people a year arediagnosed with
hyperparathyroidism and we knowthat that number is woefully
under reported, so that thisnumber is just not accurate.
(37:25):
But after today, we're going todo better in that area, because
you're going to start talkingabout hyperparathyroidism.
You're going to start talkingto your doctors and your family
members and having thisdiscussion around the dinner
table about what they're feelingand experiencing, and I'll tell
you why before we end today.
Very important to hear thestories of others that may lead
(37:48):
us to answer some questions thatwe don't even have yet, but
very important to stick it inyour back pocket for reference
later on.
Women are diagnosed more oftenthan men and why it's so more
apt to be tested for and receivetreatment for this disease
compared to black or Hispanics.
(38:09):
Insurance may or may not coverthese things, but sometimes,
when you talk to the people atthe hospital, they may be able
to work some things through foryou.
I do know that some Medicaidcovers the surgery and the exams
(38:30):
, and other insurances as wellmay cover some but not all.
So you will need to be prepared, really in your mind, that
finding or walking this pathwill be a process.
For some people.
It won't be walking into thedoctor's office and having them
say yes, yes, yes to all ofthese things, and you may need
(38:51):
to see multiple doctors toaccomplish this task I did.
When one doctor told me theywouldn't do a test, I went to
another.
When the other said I'm notsure what's going on here, I
asked for a referral, and it'sjust a habit with me to ask for
a referral.
I keep I need to keepremembering or reminding myself
that with my insurance I don'tneed a referral.
But it may be that they do haveto call to get permission to do
(39:18):
this thing or that, but I'venever had a problem with this.
What insurance is it?
I know a lot of people ask methat and sometimes I'm read as
in to say, but it is the TriCareChamp VA insurance and then the
secondary insurance is the same, and the reason that is is
because my husband is 100%disabled veteran and so I, as a
(39:43):
dependent, am on that insurance.
I have a copay.
I can't do dental on thatinsurance or vision, and so I
have secondary insurance forthat as well, which is I didn't
mention the vision changes asanother symptom Of this disease
as well, and it could be becauseof what's happening with the
(40:05):
blood flow in your brain and thepressure that you feel from the
migraines that you get.
So every insurance is different, so we all have to approach
this issue from you know things,the tools that we have
personally, and the things inthe resources that are available
to us that we can make use of,and just prepare yourself to get
(40:29):
those ducks in a row as a partof your research, as a part of
the discussion for the healingjourney.
And I needed to do all of thosethings to see what I could and
could not do.
When my doctor came to an endof what she was willing to do, I
just started referring myself.
I referred myself to the NormanPerrithiroid and Endocrine
(40:51):
Center in Tampa, florida,because they didn't need a
referral, and the reason theydidn't need a referral in
general was not because of myinsurance, but because they
realized that doctors are noteducated enough and many times
patients know what's going onwith them and they figured it
(41:14):
out long before their doctorshave.
So if you're thinking about theNorman Perrithiroid Endocrine
Center, get those tests wetalked about earlier, the DEXA.
The vitamin D, your potassiumand phosphorus are some that are
good to have.
They really just need to threethe Perrithiroid and the calcium
and, I would say, over at leasta few months period or six
(41:38):
months period to give them someidea.
They will give you a permanentdiagnosis or an official
diagnosis, and from that theywill determine if they will do
the surgery, and most times theywill.
I will tell you that in myresearch that some people are
having biopsies on these, these,these adenomas and I knew the
(42:04):
one disqualifying thing forNorman was having had a biopsy
on that particular area theywon't do a surgery.
If that has been the case,there are other doctors that
have been talked about or othercenters that have been talked
about as really good places tohave the surgery.
(42:26):
When you get to having thesurgery, I chose a minimally
invasive surgery, and so my scaris.
It's probably smaller than thetumor itself, it's about a
little longer, I think, than aninch, and it's.
(42:47):
It's fading, it's healing andit looks pretty.
It looks pretty good for beingcut on a little over a month, or
a month and a couple of daysago.
The other thing is that thehealing time with a minimally
invasive surgery is not monthsand you know months and months
(43:10):
down the line.
One person that had thissurgery had it like on a
Saturday and was back at work onthe Monday afterward.
It's good to listen to yourbody and to take your time.
Everybody's healing journey isgoing to be very different.
(43:30):
The testing to see if you haveother parathyroid problems,
because sometimes people aretaking not just one but multiple
out and some people are takingthree and a half out.
Remember you have the fourparathyroids, one around each
side.
The size of a grain of rice iswhat it should be.
(43:52):
But sometimes this disease hasreally gone to be very
overactive and those glands andthe tumors just grow, grow and
grow.
And so with the Normanparathyroid center they will
test each one of the otherparathyroids to see if they have
(44:13):
been impacted and if they aresick then they take those out.
They leave at least a half onethere because if not, then
you'll have problems with lowcalcium and other issues, which
is just as complicating as highcalcium.
They leave you with somethingto help with some degree of
(44:34):
regulation for the endocrinesystem in general.
We talked about your downtime atthe Norman parathyroid center.
The surgeon himself is going togive you a number for you to
contact him whenever you need tocontact him, and I think I
(44:54):
called him once and he told methat what I was experiencing was
natural.
I went back to the roadmap thatthey gave, because they have an
app and on that, when youdownload that app, it tells you
everything that you need to knowand what to anticipate in the
days after.
But your doctor, who gives youyour diagnosis, is the doctor
who's going to do your surgery.
(45:15):
He's going to do your follow upand he's going to be available
for you if you have anyquestions, for you and your
family.
So that was very helpful andthe surgery itself took less
than 30 minutes to do.
They thought that my parathyroidtumor was complicatedly well,
we'll not say just that, butthey thought it was inner woven
(45:39):
into my thyroid and that'sprobably why it appeared on the
imaging in the full body scan astwo nodules the way it did.
But there was nothing thereexcept for that one offending
parathyroid tumor and so theywere able to remove that.
(45:59):
They're going to give you apicture at the Norman
parathyroid center center whichI keep looking at.
It, for me, is mesmerizing.
The reason that it is isbecause this thing caused me so
many problems and it has a facenow, even though it is a thing,
I can look at it as the reasonfor all of this.
When people were telling methis was all in my head, it
(46:22):
wasn't in my head, it was in myneck and I call this tumor
Freddie.
Imagine why, if you stay ingeneral in that area at the
hotels that they suggest the,they will pick you up from the
hotel and take you to thehospital back and forth, and so
(46:46):
it was wonderful, and then thehotel itself will take you to
the airport.
I mean, what kind of service isthat?
Y'all?
So that was very helpful.
Can you do this?
Can you do this by yourself?
There are people that fly downthere and they fly back home and
they're by themselves.
So this is totally doable Ifyou choose the Norman
parathyroid center and I'm notaffiliated with the Norman
(47:08):
parathyroid center other thanthe honey they touched me, okay,
and help to make my life whole.
But I will say look, this was awonderful experience.
I'm not talking about manyproblems that I had.
I can remember the name ofeveryone who touched me before
(47:29):
and during that surgery.
I could never do that before.
That's how immediate the changewas.
The bone pain went awayimmediately, the headaches went
away immediately.
I am still struggling with somethings because the vitamin D is
so low that it is impactingagain my my bones, and so I'm
(47:53):
working on that.
Also, the anemia I don't haveanemia, but I have issues with
the iron levels, and so I'mhaving to take iron infusions
because I can't take iron pills.
My body doesn't tolerate that.
But that's important becausemost people, after have this
(48:15):
cure from hyperparathyroidism,think that they won't continue
to have any struggles whatsoever.
But remember, sometimes we'redealing with comorbidities,
meaning that we might have morethan one diagnosis, but when we
remove one, these symptoms fromthe other come to the fore, and
then that we have to deal withthose.
We've got to learn how to copewith those.
(48:36):
So it's important to understandthe physical dynamics of what
you're experiencing and knowthat this is a tool towards
whole body health.
Okay, so I'm taking care of nowthese things as a part of my
(48:57):
everyday regimen, my healthregimen.
I'm journaling, I'm seeingevery day how I feel, what are
the changes that I see.
It doesn't mean that I pick upthe phone and call a doctor
immediately.
Sometimes after the surgery,people's calcium is still high
and it takes a little while forthe other parathyroids to wake
(49:21):
up and start doing their job.
So some people will experiencea little lag in time in their
healing.
But remember, everybody'sjourney is a little different.
Some people gain a few pounds.
Remember, sometimes there'sinflammation, that's there, or
something else is happening, andso you want to continue to look
at what's happening everysingle day, but not down to
(49:45):
conclusions that this surgerydidn't work.
The group that I'm in, thehyperparathyroid support group
on the Facebook.
If you are experiencing this oryou suspect that you are
struggling withhyperparathyroidism, especially
primary hyperparathyroidism,then this is a good place to
flesh out any questions that youmight have.
(50:07):
I expressed gratitude to so manypeople earlier on.
I just want to again take thetime to thank the Norman
Parathyroidist Center and DrRhodes there, who did my surgery
, and all of the staff there.
They were wonderful.
Annette Guppard, kathyManders-Anden was helpful.
(50:30):
Also thank Larry.
I want to give you your lastname, but Larry, you know who
you are at DFBC, who has alwaysshown my family so much love,
and I just thank you and Ann andeveryone, just thank you so
(50:51):
much for being present in thelife of the Jeffersons.
You are so consistent and Ijust wish God's blessings for
you.
I know this is a lot ofinformation, but you don't have
to fight this battle alone.
Use this podcast as a referenceto go back over and over and
over again as you need to getthat information.
(51:12):
Use the Facebook support group.
Go on to YouTube, which is whatI went to YouTube University
and initially my family was likewhat is she doing?
But we got to the place wherethey learned to just sit there
while I went through my process.
There was no complaints.
They knew mama is doing herthing and if I hadn't done, I
(51:37):
would not have gotten theseanswers.
And you can do it.
We're here for you at theComing Home Podcast, the
Warriors Purse.
In case you have any additionalquestions, just contact us at
connect1atwarriorspursecom orMHFA or mental health first aid
(52:02):
at warriorspursecom, and I hopethat this has been very
beneficial for you.
I hope that if you findanything that intrigues you
concerning yourself and what youmight be going through, that
you can use this information tohelp you build a foundation
(52:23):
toward better health.
I love you, and there ain'tnothing you can do about it.
Until next time, welcome home.
In case you haven't heard it,god bless.
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