1. < Diabetes & Endocrine System

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

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Mentor
Laurie, Volunteer Mentor | @roch | Feb 20 5:23am
In reply to @raybey "Does diet and fasting effect lab results? Sometimes, depending on what I eat or don't, prior..." + (show)
@raybey

Does diet and fasting effect lab results? Sometimes, depending on what I eat or don't, prior to labs can impact the numbers. This has been true for blood pressure, sugar monitoring, or medications taken. Just curious since my thyroid is new area of concern.

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raybey | @raybey
One supplement that may affect thyroid test is biotin, which can be found in some multi-vitamins. Biotin use can result in falsely high levels of T4 and T3 and falsely low levels of TSH. You may want to stop taking biotin for at least 2 days before thyroid testing to avoid the risk of having a misleading test.

Also, if taking thyroid meds (levothyroxine); iron, calcium supplements and antacids can lower your body's ability to absorb levothyroxine, so should be taken 4 hours before or after.

Laurie

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2 replies
riflemanz64 | @riflemanz64 | Feb 20 6:40am
In reply to @danny5 "i had the surgery for Hyperparathyroidism a few years back. they did blood work and found..." + (show)
@danny5

i had the surgery for Hyperparathyroidism a few years back. they did blood work and found out that's what i had. but before they did that. the gave me Iodine to see which one of the 4 was bad. they took it out and i have about a 3-4 inch scar on my throat. you really can't see it if you don't know where to look. and i've been doing fine since then.

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My wife went to the Norman Center in Florida and had 3 removed thru a incision less than 1".

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raybey | @raybey | Feb 20 8:32am
In reply to @roch "raybey | @raybey One supplement that may affect thyroid test is biotin, which can be found..." + (show)
@roch

raybey | @raybey
One supplement that may affect thyroid test is biotin, which can be found in some multi-vitamins. Biotin use can result in falsely high levels of T4 and T3 and falsely low levels of TSH. You may want to stop taking biotin for at least 2 days before thyroid testing to avoid the risk of having a misleading test.

Also, if taking thyroid meds (levothyroxine); iron, calcium supplements and antacids can lower your body's ability to absorb levothyroxine, so should be taken 4 hours before or after.

Laurie

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Thanks for the info and I will keep in mind. Schedule for biopsy and may be prescribed meds. I can be mindful of interactions and side effects. Very helpful. Be well.

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barbfdh | @barbfdh | Feb 20 11:16am
In reply to @fluoride "You should read the Calcium Pro app from the Norman Center. Your calcium should be below..." + (show)
@fluoride

You should read the Calcium Pro app from the Norman Center. Your calcium should be below 10! Even though the range of calcium of 10+ is rated normal, the surgeons at the Norman center point out that is too high for someone over 50. Your calcium combined with your PRH levels clearly puts you in hyperparathyroid territory. There is also a center in San Francisco that does many cases. Your expenses may be tax deductible if you fly to another state for surgery. It is important to see someone who does a lot of the procedure. But please don’t delay, the damage high calcium causes continues to take its toll. Good luck.

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Thank you for your response. I just got back results of 24 hour urine catch and calcium levels were normal. So my endocrinologist wants to keep an eye on my PTH levels. This is so frustrating! It is so discouraging to feel like crap every single day and test after test and doctors not really helping.

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1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Feb 20 11:50am
In reply to @roch "raybey | @raybey One supplement that may affect thyroid test is biotin, which can be found..." + (show)
@roch

raybey | @raybey
One supplement that may affect thyroid test is biotin, which can be found in some multi-vitamins. Biotin use can result in falsely high levels of T4 and T3 and falsely low levels of TSH. You may want to stop taking biotin for at least 2 days before thyroid testing to avoid the risk of having a misleading test.

Also, if taking thyroid meds (levothyroxine); iron, calcium supplements and antacids can lower your body's ability to absorb levothyroxine, so should be taken 4 hours before or after.

Laurie

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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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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Feb 20 12:27pm
In reply to @barbfdh "Anyone had a high PTH level and normal calcium levels.? My PTH was at 122.7 and..." + (show)
@barbfdh

Anyone had a high PTH level and normal calcium levels.? My PTH was at 122.7 and calcium level 10. I did a urine catch and calcium levels normal. But I seem to have most of the symptoms of hyperthyroidism, along with a diagnosis of osteoporosis. I do have hypothyroidism, which went into hyperthyroidism after receiving Covid vaccine in 2021. Took over 2 years to get it back to hypothyroid mode. After genetic testing, I found out I had the MTHFR gene variation (T/T) and started taking methylated vitamins. They made me feel a little better. I looked into Dr. Norman but I live in Montana. I also have chronic pain from stroke in '98 and spinal fusion in '17. I just want to feel better. It is so discouraging to feel rotten every single day. Any ideas? I will turn 75 next month.

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@barbfdh I’m so sorry you feel rotten every single day! I’m confused. Are you posting about a parathyroid or a thyroid issue? I don’t know much about or have much experience with parathyroid. I have a history and was treated for hyperthyroidism (Grave’s disease). My Dr. told me that the condition sometimes flips to the opposite, or hypothyroidism. Hyper—- means too much. Hypo—- means too little. My Dr. monitors my levels in case this starts happening to me. Does this sound like anything similar to what you are experiencing? Could you share more about your diagnoses and symptoms?

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2 replies
marceen | @marceen | Feb 20 12:32pm
In reply to @SusanEllen66 "@musicbart hi there I went to Dr Norman in Tampa for my surgery 2008. I did..." + (show)
@SusanEllen66

@musicbart hi there I went to Dr Norman in Tampa for my surgery 2008.
I did have a vocal cord issue afterwards that took about 2 months to heal.
However, having the surgery done was the only decision I could make because I was feeling awful. My blood calcium level was 11.1 and my body was making me sick. I had a brain bleed too because of the high calcium level.

The day after the surgery, I felt so much better. It was as if a blanket was lifted off me and I was alive again!

The Norman group was great. I have to believe that they are not the only game in town. There are ENTs who also perform that surgery.

Good luck to you!

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I like your comment "a blanket was lifted off"..............after 4 years of "wait and watch" with my portland endo doc...............finally "I made the decision" based on the blood work, etc, etc. Also the OHSU medical library was informative. I did go to the normal clinic this spring time.

But, less than 1 week after the operation I felt like myself again!!!. I can't even see the scar and in my case they only identified one bad parathyroid gland...........gone is good. I had a surgeon from Yale and an assist surgeon from Harvard and I even had dinner the night when I got back to the hotel.............The driver of the shuttle was even chatting and exchanged pictures of our excises gland. Ha. What other doctor would even show a non-doctor a picture..............?? Big comment is finding the bad one.........watch the video (utube) which is on the norman web site..................

Marceen

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fluoride | @fluoride | Feb 20 12:34pm
In reply to @barbfdh "Thank you for your response. I just got back results of 24 hour urine catch and..." + (show)
@barbfdh

Thank you for your response. I just got back results of 24 hour urine catch and calcium levels were normal. So my endocrinologist wants to keep an eye on my PTH levels. This is so frustrating! It is so discouraging to feel like crap every single day and test after test and doctors not really helping.

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I think you should answer the questions on the app I mentioned and it will give you an idea of what you should do. My endocrinologist was also keeping an eye on things and I my kidney function and osteoporosis only got worse. The MDs at Norman emphasize that variations in calcium are normal but if serum calcium is elevated and PTH is also, then clearly there is a problem. Good luck!

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danny67 | @danny5 | Feb 20 3:17pm
In reply to @cehunt57 "@barbfdh I’m so sorry you feel rotten every single day! I’m confused. Are you posting about..." + (show)
@cehunt57

@barbfdh I’m so sorry you feel rotten every single day! I’m confused. Are you posting about a parathyroid or a thyroid issue? I don’t know much about or have much experience with parathyroid. I have a history and was treated for hyperthyroidism (Grave’s disease). My Dr. told me that the condition sometimes flips to the opposite, or hypothyroidism. Hyper—- means too much. Hypo—- means too little. My Dr. monitors my levels in case this starts happening to me. Does this sound like anything similar to what you are experiencing? Could you share more about your diagnoses and symptoms?

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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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1 reply
barbfdh | @barbfdh | Feb 20 5:21pm
In reply to @cehunt57 "@barbfdh I’m so sorry you feel rotten every single day! I’m confused. Are you posting about..." + (show)
@cehunt57

@barbfdh I’m so sorry you feel rotten every single day! I’m confused. Are you posting about a parathyroid or a thyroid issue? I don’t know much about or have much experience with parathyroid. I have a history and was treated for hyperthyroidism (Grave’s disease). My Dr. told me that the condition sometimes flips to the opposite, or hypothyroidism. Hyper—- means too much. Hypo—- means too little. My Dr. monitors my levels in case this starts happening to me. Does this sound like anything similar to what you are experiencing? Could you share more about your diagnoses and symptoms?

Jump to this post

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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