My hyperparathyroidism's worsening it seems. Surgery ahead?

Posted by musicbart @musicbart, Feb 17 10:56pm

I'm a 76.7 years old guy living alone. In Dec. 2022, a blood study indicated that more info/data were needed to know about suspected hyperparathyroidism in me. In 2023 a number of tests were done along with a bone scan which was done in July 2023 and found my bones to be in the middle of the range for osteopenia. The endocrinologist told me last year I really should have surgery for my primary hyperparathyroidism. After reading a bit about this medical problem last year, it seemed to me that there's too much guess work by MDs who try to figure out which of the 4 tiny glands has gone haywire and has to be excised. I told the endocrinologist that I'd like my levels followed over time to see what changes. Well, after blood calcium scores in Dec. 2022 and in 2023 running from 10.9 (Dec. 2022) to 10.2 to 10.6 (in 2023) and just 5 days ago now 10.5, and with my PTH scores in 2023 from 89.9 (Jan. 2023) to 71.1 (late Aug. 2023) and just 5 days ago shooting all the way up to 104.2, I'm getting scared and hope to meet with the endocrinologist very soon. The only physical symptom I have is very stubborn, severe constipation (but even though I like water, I'm never thirsty and forget to drink the required 3.7 liters for men every day-- maybe my failure to drink adequate water accounts for the awful constipation- I don't know).

I did have kidney stones in the very early 2000s but none for years which is a mystery to me. [When I had my 1st one ~ 2001 or 2002, I was given a special funnel strainer to catch the stone on its way out of me. I did catch it, brought it in, and was told that the lab found it to be the standard, common calcium type kidney stone. But none after that 1st and 2nd one long ago.]

Any other men here with scores scary as mine seem to be to me?

Has anyone here gone to that self-declared top parathyroid surgery place in Tampa, FL? How were surgical outcomes there?

I'm worried about parathyroid surgery causing bad injuries to the nerves serving the vocal cords-- this is a known risk. I read that one really has to find a tip-top, very experienced surgeon to do one's parathyroid surgery. I live alone and have no one to speak for me in case I can't speak.

Tell me what you can. Thanks, musicbart

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

@barbfdh

I am posting about parathyroid issue. I noticed I typed hyperthyroid instead of hyperparathyroid. I have been hypothyroid for almost 20 years but went to hyperthyroid after Covid vaccine. Took almost 3 years of adjusting levothyroxine and adding back liothyronine to finally get me back to good numbers. When I was hyperthyroid, my symptoms were mind racing, tremor, heart palpitations, kind of like your body & mind being in hyperactive mode. Now at hyperthyroid, my body & mind have slowed down & hard to lose weight. I was really hoping it was hyperparathyroidism, because so many of my symptoms are the same. Chronic fatigue, general feeling of "illness" and "feeling bad" that can be hard to describe, anxiety, osteoporosis, bone pain, difficulty sleeping, gastric acid reflux, high blood pressure, frequent headaches. Hard to know what support group I should be in. Stroke, chronic pain, thyroid, osteoporosis. I don't think doctors know what to do with me. I am now in therapy at age 75 where I talk about my health because this is what my personality revolves around now.

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Sorry I typed hyperthyroid when I meant hypothyroid.

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I'm glad that even though I've not helped anyone here (yet, perhaps), my thread has started a number of people writing about their experiences with hyperparathyroidism.

A very strange thing happened to me last Nov. on 3 consecutive days, a Monday, Tuesday and Wednesday. I had to go to the ER on the Monday and the Wednesday due to this mysterious medical thing that hit me. On each of those 3 consecutive days I, out-of-the-blue, would *suddenly* be extremely nauseous which never led to vomiting. These bizarre "spells of incredible nausea" would only last under a minute or maybe as long as minute, then end. This happened about 4 or 5 times on each of those 3 days. Another very strange aspect about this: immediately after each "nausea spell" ended, I couldn't recall the simplest of things I otherwise always know. These are basic things in my life such as where I have something stored, etc., etc. On the Wednesday, when I drove home from the ER, I couldn't figure out how to get the powered garage door open to park under my apartment building. I sat there, at night, in the car for some seconds before I happened to look up to the car's right side sun visor where I saw an object. I grabbed it, pushed the button on it, and the garage door went up. Other things I suddenly forget in those 3 days of "spells of the worst possible nausea" took many hours to I think a few days to come back to me. Now when I was in the ER on that Monday and Wednesday I never thought to mention my hyperparathyroidism but even though this ER place has all my medical records, the young MDs I'm always made to see (since it's a teaching hospital which I dislike so much) no young MD could explain why I suddenly would become SO nauseous for such a short "spell" repeated a number of times each of those 3 consecutive days.

After leaving the ER on that Wednesday I thought the nausea might have been caused by a terrible abdominal surgical outcome I had 10 years ago. For bilateral hernia repairs (only the LEFT groin was painful- the RIGHT groin one was painless but found by an eminent radiologist I had to consult in a distant state-- he's famous for finding hernias that other MDs fail to diagnose and he did find both of mine when my local MDs just couldn't properly detect the very painful LEFT side one), I was blown up as if I was a balloon. This inflation of my ab directly caused my linea alba to be wrecked. Every one on Earth has a key linea alba which runs down the midline of the ab, running from the end of the sternum to the center of the pubic bone. When it reaches the belly button, it splits to go around it but hugs the belly button snugly. The linea alba keeps LEFT side ab muscles tied nicely to the RIGHT side ab muscles with both sides meeting on the key linea alba which I figure is Latin for 'white line' since in anatomical illustrations it's shown as a whitish, ligament or tendon-like band. When the linea alba's wrecked, the permanent medical problem is called diastasis recti which often occurs in women due to pregnancy. Years after this happened to me I read on the Internet that men who have abdominal surgery can wind up with ugly diastasis recti. Nothing can be done for this. I'm forced to wear an ab binder which is a rather wide band running around me-- I reduced the width of mine and my former MD said I'm at the limit for the reduction of the ab binder. Anyway, I thought that the ab binder had stretched out, something I couldn't detect. But I tightened it up after that Wednesday and never had that horrible nausea again. Therefore, I suppose that those 3 consecutive days of unbelievable nausea might have been due to a stretched out ab binder and not to my hyperparathyroidism. I'll have to tell this though to a parathyroid surgery to see what that MD thinks about those 3 days last November. [But in the ER those 2 days I also never mentioned the possibility of the ab binder become a bit too loose on me. You see this only occurred to me *AFTER* the last ER visit on that Wednesday.]

In Aug. 2021 I nearly died from what turned out to be a 99% blocked key LAD artery ("the widow maker") over the heart. Fortunately, I listened to the ER triage RN who told me to get to the ER which I did. Treponin and other parameters were studied in the ER and I was hospitalized at once. More testing soon done in the hospital and a single stent was put into my LAD and that's why I'm here today telling you about my hyperparathyroidism. I do wonder though if my LAD artery was so, SO close to becoming 100% clogged/blocked (causing death) due to unrecognized but existing hyperparathyroidism in me. My blood calcium scores have been awful for many, many years but no one was concerned about this 'til Dec. 2022 when an MD suspected I might have hyperparathyroidism and that Dec. 2022 suspicion led to proper testing. In US medicine, there's always way too much unacceptable neglect, indifference, blasé and non-chalant attitudes along with the incompetence and ignorance of one thing or another. Too many MDs see us as walking, talking meat. [I noticed in the online Norman Parathyroid Ctr form (to fill out for desiring to be a patient there) that there was a question on a stent having been put into one's body. This probably or must mean that hyperparathyroidism's connected to some heart troubles. Right?]

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@cehunt57

Hi Laurie, @roch. Looking forward to when “Volunteer Mentor” will be added to your handle and to meeting you in our zoom meetings. I mainly hang out in the Diabetes & Endocrine System group. Of the topics covered there parathyroid is the thing I know least about. In your post here you are talking about supplements and meds that may affect thyroid test. Did you mean parathyroid? I’m confused. It doesn’t help that they have similar names, are located in the same vicinity and are both part of the endocrine system! Trying to learn a bit more. Thanks.

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Cheryl, Volunteer Mentor | @cehunt57

Thyroid disease vs Parathyroid (PTH) Disorders
I am sorry if my comment about supplements / vitamins affecting testing of thyroid levels (TSH, T3 and T4) caused any confusion. My experience is with Hashimoto's thyroiditis (hypothyroidism). Parathyroid Disorders is different than Thyroid disease and involves different testing.

Not sure if when diagnosing PTH they also test thyroid hormones. There have been some studies that show patients with PTH have a high prevalence of thyroid disease, especially in postmenopausal women.

Did some reading up on topic and this article from George Washington Univ explains the difference thyroid / parathyroid diseases.
https://www.gwhospital.com/conditions-services/ears-nose-throat/thyroid-parathyroid-disorders

Laurie

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@danny5

i started with Hyperthyroidism back in 1974 i think. but somewhere it flipped to Hypothyroidism. it wasn't till later i was informed about it.

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@danny59 I get what you said about hyperthyroidism flipping to hypothyroidism. I’m there too (not quite) but my Dr. warned me about it and is keeping watch.

My concern here with this discussion is that it is about parathyroid issues. It seems that some folks are mixing up

thyroid and
parathyroid.

I also am seeing a misuse and mix up between

hyper - too much and
hypo - too little

It is difficult to respond to members when it is unclear what they are referring to.

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@cehunt57

@danny59 I get what you said about hyperthyroidism flipping to hypothyroidism. I’m there too (not quite) but my Dr. warned me about it and is keeping watch.

My concern here with this discussion is that it is about parathyroid issues. It seems that some folks are mixing up

thyroid and
parathyroid.

I also am seeing a misuse and mix up between

hyper - too much and
hypo - too little

It is difficult to respond to members when it is unclear what they are referring to.

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yes i agree. i've had both done in my lifetime. it is very confusing. they need to slow down reading this. and then read again before commenting.

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@roch

Cheryl, Volunteer Mentor | @cehunt57

Thyroid disease vs Parathyroid (PTH) Disorders
I am sorry if my comment about supplements / vitamins affecting testing of thyroid levels (TSH, T3 and T4) caused any confusion. My experience is with Hashimoto's thyroiditis (hypothyroidism). Parathyroid Disorders is different than Thyroid disease and involves different testing.

Not sure if when diagnosing PTH they also test thyroid hormones. There have been some studies that show patients with PTH have a high prevalence of thyroid disease, especially in postmenopausal women.

Did some reading up on topic and this article from George Washington Univ explains the difference thyroid / parathyroid diseases.
https://www.gwhospital.com/conditions-services/ears-nose-throat/thyroid-parathyroid-disorders

Laurie

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@roch Hi Laurie. I just finished reading the link you posted from gwhospital regarding thyroid-parathyroid disorders. It was very informative. Thanks.

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@musicbart

I'm glad that even though I've not helped anyone here (yet, perhaps), my thread has started a number of people writing about their experiences with hyperparathyroidism.

A very strange thing happened to me last Nov. on 3 consecutive days, a Monday, Tuesday and Wednesday. I had to go to the ER on the Monday and the Wednesday due to this mysterious medical thing that hit me. On each of those 3 consecutive days I, out-of-the-blue, would *suddenly* be extremely nauseous which never led to vomiting. These bizarre "spells of incredible nausea" would only last under a minute or maybe as long as minute, then end. This happened about 4 or 5 times on each of those 3 days. Another very strange aspect about this: immediately after each "nausea spell" ended, I couldn't recall the simplest of things I otherwise always know. These are basic things in my life such as where I have something stored, etc., etc. On the Wednesday, when I drove home from the ER, I couldn't figure out how to get the powered garage door open to park under my apartment building. I sat there, at night, in the car for some seconds before I happened to look up to the car's right side sun visor where I saw an object. I grabbed it, pushed the button on it, and the garage door went up. Other things I suddenly forget in those 3 days of "spells of the worst possible nausea" took many hours to I think a few days to come back to me. Now when I was in the ER on that Monday and Wednesday I never thought to mention my hyperparathyroidism but even though this ER place has all my medical records, the young MDs I'm always made to see (since it's a teaching hospital which I dislike so much) no young MD could explain why I suddenly would become SO nauseous for such a short "spell" repeated a number of times each of those 3 consecutive days.

After leaving the ER on that Wednesday I thought the nausea might have been caused by a terrible abdominal surgical outcome I had 10 years ago. For bilateral hernia repairs (only the LEFT groin was painful- the RIGHT groin one was painless but found by an eminent radiologist I had to consult in a distant state-- he's famous for finding hernias that other MDs fail to diagnose and he did find both of mine when my local MDs just couldn't properly detect the very painful LEFT side one), I was blown up as if I was a balloon. This inflation of my ab directly caused my linea alba to be wrecked. Every one on Earth has a key linea alba which runs down the midline of the ab, running from the end of the sternum to the center of the pubic bone. When it reaches the belly button, it splits to go around it but hugs the belly button snugly. The linea alba keeps LEFT side ab muscles tied nicely to the RIGHT side ab muscles with both sides meeting on the key linea alba which I figure is Latin for 'white line' since in anatomical illustrations it's shown as a whitish, ligament or tendon-like band. When the linea alba's wrecked, the permanent medical problem is called diastasis recti which often occurs in women due to pregnancy. Years after this happened to me I read on the Internet that men who have abdominal surgery can wind up with ugly diastasis recti. Nothing can be done for this. I'm forced to wear an ab binder which is a rather wide band running around me-- I reduced the width of mine and my former MD said I'm at the limit for the reduction of the ab binder. Anyway, I thought that the ab binder had stretched out, something I couldn't detect. But I tightened it up after that Wednesday and never had that horrible nausea again. Therefore, I suppose that those 3 consecutive days of unbelievable nausea might have been due to a stretched out ab binder and not to my hyperparathyroidism. I'll have to tell this though to a parathyroid surgery to see what that MD thinks about those 3 days last November. [But in the ER those 2 days I also never mentioned the possibility of the ab binder become a bit too loose on me. You see this only occurred to me *AFTER* the last ER visit on that Wednesday.]

In Aug. 2021 I nearly died from what turned out to be a 99% blocked key LAD artery ("the widow maker") over the heart. Fortunately, I listened to the ER triage RN who told me to get to the ER which I did. Treponin and other parameters were studied in the ER and I was hospitalized at once. More testing soon done in the hospital and a single stent was put into my LAD and that's why I'm here today telling you about my hyperparathyroidism. I do wonder though if my LAD artery was so, SO close to becoming 100% clogged/blocked (causing death) due to unrecognized but existing hyperparathyroidism in me. My blood calcium scores have been awful for many, many years but no one was concerned about this 'til Dec. 2022 when an MD suspected I might have hyperparathyroidism and that Dec. 2022 suspicion led to proper testing. In US medicine, there's always way too much unacceptable neglect, indifference, blasé and non-chalant attitudes along with the incompetence and ignorance of one thing or another. Too many MDs see us as walking, talking meat. [I noticed in the online Norman Parathyroid Ctr form (to fill out for desiring to be a patient there) that there was a question on a stent having been put into one's body. This probably or must mean that hyperparathyroidism's connected to some heart troubles. Right?]

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Hello Bart, yes there is a connection between elevated calcium and heart disease. I had surgery a few weeks ago at the Norman center in Tampa and was very pleased with them. To be honest, at this point I think you need to talk to your doctor about your episodes of not being able to remember how to get into your garage or where things are stored. Pretty scary . Good luck!

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Glad to hear your surgery went well! Were you at the brand new Norman Hospital?

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@riflemanz64

Glad to hear your surgery went well! Were you at the brand new Norman Hospital?

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Yes, pretty impressive

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I am 64yo female and just had surgery 1 week ago for primary hyperparathyroidism. 2 of 4 glands were excised and the surgeon was unable to locate the other 2. My left thyroid lobe and a large substernal goitrous mass was also removed. My recurrent laryngeal nerve had adhered to the mass and required repair intraop. I do have Hope nerve repair was successful. I’m still recovering but one immediate effect from surgery is very obvious to me albeit hard to explain. My head is just much clearer and level headed making it easier to focus and just feels like a veil has been lifted. Bone pain is gone too.
I hope you choose the appropriate path for your healing

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