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    Old 12-31-2008, 03:38 PM   #1
    robine27
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    Hasimoto's-now parathyroid hormones high

    Hello,
    I am new to the Board, though have been reading posts for a while but having trouble getting in with first password.
    I have a lot of autoimmune issues including hashimoto's, celiac, addison's, ITP, multiple allergies. Thyroid numbers are good on Levoxyl 50mcg. Synthroid has lactose so wasn't good for me due to a true dairy allergy. TSH 0.35 (Range 0.35-4.94), T3 Total 64 (Range 58-159) My endo wants my TSH below 1.0.
    Now my parathyroid hormone Intact is high-84 (Range 8.7-79.5). Calcium is 9.4 (Range 8.5-10.3). Vitamin D-25 Hydro is 73.4
    (Range 30.0-100.0 Because Calcium and Vitamin D are in very good range, PTH Intact should not be up as it will pull all the calcium out of my bones (already have osteoporosis and kidney stones). Will have another test in two weeks just to be sure the first one was accurate, then if PTH high some more tests to find out which of the 4 pararthyroid glands are producing too much hormone, then surgery to remove gland or glands affected. I do not take any calcium orally as I cannot tolerate it, but do have a vitamin/mineral IV including calcium every two weeks for the nutrients I was low on due to celiac. I have been getting IV's for three years. The blood work was done 10 days after the Intravenous vitamins and minerals. I have been on 50,000 of Vitamin D weekly, plus 2000 daily for one year. No vitamin D was taken for two days before the labwork. Endo wants Vitamin D between 75 and 100.
    I am also on hydrocortisone 30mg daily(10, 10, 10), fludrocortisone 1mg daily (o.5, 0.5) and DHEA 50mg daily (25, 25) for the adrenal insufficiency.
    Has anyone had problems with the parathyroid glands? Any ideas or suggestions?
    Sometimes all the medical issues can be so overwhelming. My two daughters have started with hasimoto's and one also has celiac and addison's.
    Thanks for any help with this. I know pararthyroid is different than thyroid, but not sure where to ask.

    Robine in MA

     
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    Old 12-31-2008, 08:50 PM   #2
    Audrey-B
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    Re: Hasimoto's-now parathyroid hormones high

    Hi robine27 - i recently did a heap of research on high PTH (parathyroid hormone) as my dad's test results where highlighted as high on the lab report and his doctor didn't even take it into account.

    Interestingly enough, my dad also has very low Vitamin D levels and among other things high PTH can be a symptom of Vit D deficiency as PTH works with Vit D to maintain healthy bones.

    PTH can be higher in people with hyperparathyroidism, chronic renal failure and malabsorption syndrome too.

    I showed my dad's test results to my thyroid doctor and he said the PTH ought to even out once my dad's vitamin D elevates.

    So if you haven't already, maybe you ought to start with getting your Vit D tested. Your Vit D should be at the high end of the maximum range, not the low or middle section.

     
    Old 12-31-2008, 11:07 PM   #3
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    Re: Hasimoto's-now parathyroid hormones high

    My friend had two para's removed Oct. 29 & she had had quite a struggle with calcium (low.) I know that the body can only absorb so much calcium at a time so I'm wondering how the IV calcium works to keep your calcium levels up.

    She has to take a lot of calcium on a daily basis so if you already have trouble with your stomach & calcium then this would be an issue to discuss with your Dr. A 2nd opinion would be a good idea.

    Fam

     
    Old 01-01-2009, 05:26 AM   #4
    robine27
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    Re: Hasimoto's-now parathyroid hormones high

    Hi Audrey,

    I was the same as your dad one year ago-high PTH, Vitamin D below 20. Vitamin D was added at a high dose and has been checked three times. Last time mid December was 73.5 (range30-100), but at that time the PTH had gone up to 84 (range 8.7-79.5) not down as it was expected to. Also I am losing a lot of calcium in the 24 hour urinalysis. It was 248 (Range 50-300) but blood calcium is still good-9.4 (range 8.5-10.3) Kidney function is very good. I don't eat any dairy due to true allergy, so where is the calcium coming from? This was also done 10 days after IV calcium. Vitamin D helps absorb Calcium so I shouldn't be on the high end of normal in urine calcium with a much higher Vitamin D of 73.5.
    I also read that PTH is higher first thing in the morning and my last labs in December were at 5PM at the endos office so it seems it might have been even higher early in the morning. Next test in two weeks to confirm so I will be sure to go at 7AM or so.

    Thank you for your response.
    And Happy New Year.

    Robine

     
    Old 01-01-2009, 05:38 AM   #5
    robine27
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    Re: Hasimoto's-now parathyroid hormones high

    Hi Fam,

    Due to celiac and malabsorption, I have trouble absorbing calcium thus the IV calcium bypasses the intestines. I also get a lot of other vitamins and minerals in that iv every two weeks. That is a good question to discuss with my doc-how to get calcium and how often if parathyroids need to be removed.
    Will be repeating the testing in two weeks so will wait for those results and another chat with my endo. She would not be doing the surgery. I assume it would be a Boston doc.

    Thanks for your concern.
    Happy New Year.

    Robine

     
    Old 01-01-2009, 10:08 AM   #6
    dcr8888
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    Re: Hasimoto's-now parathyroid hormones high

    Hi Robine,

    You may have developed a secondary hyperparathyroidism due to a chronic low vitamin D levels. If you treat your malabsorption syndrome with a gluten free diet and take enough vitamin D to get your blood level up, you should achieve homeostasis and your endocrine system should return to balance. You may also find you vitamin A level low too given your history.

    There are fabulous vitamin D and endocrine experts at Boston University, I suggest you contact them.

    All the best in 2009, I hope it is a year of healing for you.

    DCR

     
    Old 01-02-2009, 07:34 AM   #7
    robine27
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    Re: Hasimoto's-now parathyroid hormones high

    Hi DCR,

    Thank you for your reply.

    Malabsorption is much better than it was 5 years ago when I lost 30 pounds in two months going down to 92 pounds eating all day long, however still have trouble absorbing dense and hard to digest foods, some minerals and some vitamins, some fats, some proteins.
    Vitamin D has gone from below 20 one year ago to 73.5 (range 30-100) in December 2008 with oral Vitamin D of both kinds-50,000 weekly and 2000 daily.
    PTH Intact has gotten higher however and it now 84-was 79 last time (range 8.7-79.5)
    24 hour urine calcium 248 (range 50-300)
    Magnesium at times is slightly high
    Potassium at times is slightly low
    Blood calcium always okay at 9.2 or 9.4 or so.
    Osteoporosis numbers lower in January 2008 than the previous bone density.
    I have been on a strict gluten free, soy free, dairy free, yeast free diet for 5 years and weight is up to 115 pounds.

    Does it take awhile for things to go back to normal after chronic low Vitamin D? Everything else is slowly improving and I am much better than a few years ago, but still have fatigue, muscle vibrations and spasms, much milder concentration and minor memory problems, mild depression, occassional tummy troubles but soo much better, and constipation. Compared to symptoms a few years ago when I probably had a list of 50 symptoms this is actually minor, but still would like to feel better.
    I have so many autoimmune issues that it is difficult to know which symptoms are from which autoimmune disease so it has been a slow process getting things back where they should be. (celiac, hasimoto's, addison's, ITP) Are parathyroid issues ever from an autoimmune condition?

    Thanks again for your thoughts. The knowledge of the folks on this board is incredible!

    Robine

     
    Old 01-03-2009, 01:22 PM   #8
    dcr8888
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    Re: Hasimoto's-now parathyroid hormones high

    Hello Robine,

    To answer your question, parathyroid problems are often secondary and casued by a long standing low vitamin D blood level.

    Autoimmune disorders are often the expression of a seriously and chronically low vitamin D level.

    Go to the vitaminDcouncil.org and the UVFoundation.org to learn more about vitamin D and the benefits of keeping you blood level in the upper range.

    Do to your GI issues you might also want to add a good, wholesome, more natural multi-vitamin and multi mineral complex.

    All the best, DCR

    Last edited by dcr8888; 01-03-2009 at 01:23 PM.

     
    Old 01-04-2009, 04:22 AM   #9
    robine27
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    Re: Hasimoto's-now parathyroid hormones high

    Quote:
    Originally Posted by dcr8888 View Post
    Hello Robine,

    To answer your question, parathyroid problems are often secondary and casued by a long standing low vitamin D blood level.

    Autoimmune disorders are often the expression of a seriously and chronically low vitamin D level.

    Go to the vitaminDcouncil.org and the UVFoundation.org to learn more about vitamin D and the benefits of keeping you blood level in the upper range.

    Do to your GI issues you might also want to add a good, wholesome, more natural multi-vitamin and multi mineral complex.

    All the best, DCR
    Hello DCR,

    Thank you for the information on Vitamin D, autoimmune disorders, and secondary parathyroid problems. I will check out the sites.

    All my vitamin and mineral levels were below the lowest range a few years ago. I have been tolerating a really good easy to absorb multivitamin (no gluten, soy, dairy, or yeast) recommended by my nutrition doctor plus extra supplements recommended by the same doc for quite a while now. Most levels have come up with the exception of the ones I am given intravenouly twice a month. I am hoping this year to space out the IV's a little more and see how things go. I will wait until the parathyroid issues are resolved as don't like to try too many changes at the same time.

    It has been a bit like a puzzle-fit in one piece at a time, see how it looks and then work on the next piece. Along the way some pieces do not seem to fit anywhere. At he present it is the parathyroid, Vitamin D, Calcium piece. Eventually with a little work and insight a clearer picture appears. I welcome any ideas to help me see the big picture.

    Best wishes,
    Robine

     
    Old 01-07-2009, 06:36 PM   #10
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    Re: Hasimoto's-now parathyroid hormones high

    I also have normal calcium readings BUT, high Parathyroid readings (90-118) and very low Vitamin D. (8-19) I am a rare case they say as they will not do surgery on a suspected parathyroid tumor UNLESS the calcium goes over 10 as 7 calcium levels have all been between 8.8 and 9.5. Sestamibi nuclear scan (best test to find the parathyroid adenoma) does show a problem with my lower right Parathyroid gland but again four experts will not do surgery. I also have taken 50,000 units of vitamin D weekly and sometimes bi-weekly and it barely brings up my vit. D levels and does nothing to help with my high parathyroid levels. Elevated Calcium levels is the key, I was told by the MD's and the green light for surgery. Celiac disease can play havoc on all of this. Treat the Celiac and see how you do. Good Luck.

    Last edited by MacyMaid; 01-07-2009 at 06:39 PM. Reason: spell error

     
    Old 01-08-2009, 12:18 AM   #11
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    Re: Hasimoto's-now parathyroid hormones high

    Hi MacyMaid, I also have low Vitamin D (have been taking 50,000IU twice a week for a few months). I have managed to get my levels up but not high enough yet. I just wanted to let you know that elevated calcium is not always the key. I have had elevated calcium 10.9 (8.5-10.5), elevated ionized calcium 1.42 (1.17-1.32) but inappropriately normal PTH 25 (15-65) and a negative sestamibi scan. My doctors (GP and Endo) just keep telling me not to worry....that the calcium is not high enough!

     
    Old 01-08-2009, 04:45 AM   #12
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    Re: Hasimoto's-now parathyroid hormones high

    Good morning Hopalong. If I had calcium numbers like you do I would be sooo happy as then I would know that what they are seeing in the scan is truly a parathyroid tumor and not just a shadow off the right sided thyroid adenoma's. My Intact Calcium is low...My serum calcium seen on a comprehensive metabolic test is very very normal. My TSH is terrible...running around 6.0. I have been on so much Synthroid and Levoxyl and nothing is bringing the TSH down. Have you visited Dr. Norman's site? He indicates that the key is elevated calcium and not all people have high PTH levels and not all people show a tumor on a Sestamini scan as he said many do not know how to do these correctly or read them correctly. I have all the symptoms of Primary Hyperparathyroidism yet....still fall under secondary due to low Ionized and very normal serum calcium. Dr. Normal has a chart that shows people's variations that come to him. I am in the bottom 2 which drives a doctor crazy in trying to figure us rare breeds out. I went theru kidney scans and a cysto in October and all is good. I have had in the past two Oxylaye Calcium kidney stones removed. My Dexa bome scan in October was worse than 2003. Still classed as Osteopenia. I have calcification in my heart arteries and my Parotid gland. I have LVH and up and down high blood pressure. I have severe gerd. I am the Queen of the Moans ands Groans with Stones...(-: Yet, I am untouchable due to not high calcium readings. Dr. Norman said any kind of high calcium reading (and it does not have to be that high) indicates a parathyroid adenoma. He is suppose to be the GuRu in this. I want all this put to rest before it puts me to rest....)-: Thanks for writing. I wish you the best.

     
    Old 01-11-2009, 08:15 AM   #13
    robine27
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    Re: Hasimoto's-now parathyroid hormones high

    Hi Macy Maid and Hopalong Too,

    Thank you for your replies. In checking previous labs, one year ago my Calcium level was 8.6 (range 8.5-10.3) I am wondering if as the malabsorption issues improve, my numbers will also go up. March 2008 Calcium was 9.2, and December 2008 Calcium was 9.4.

    I asked my allergy doc this week what he thought, and he said if the PTH stays high with Vitamin D also in good range at 73.4, eventually the Calcium would go up high.
    Next week I will have a repeat of many of the labs, then will be talking to my endocrinologist who has just added another endocrinologist from Boston's Mass General Hospital to her practice.

    My oxylates are also high and I have a history of kidney stones, so now need to watch oxylate intake.

    The last year I have had more trouble with muscle spasms and pain but had attributed that to electrolytes being abnormal at times-potassium, sodium, and magnesium.
    Osteoporosis has also advanced in spite of better absorption. Endo is having trouble deciding on an osteoporosis drug due to parathyroid issues so is waiting for next labs and a possible sastamibi scan. Fosamax was discontinued due to increased muscle spasms. Evista is out due to it is remarkably similar to soy protein and I am highly allergic to soy.

    What does the sastamibi scan involve?

    Thanks to all for your interest and helpful information.

    Robine

     
    Old 01-11-2009, 11:34 PM   #14
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    Re: Hasimoto's-now parathyroid hormones high

    Robine27 - a few posts back you mentioned your digestion. I have Hashi's and a stool analysis test showed that i was not digesting protein all that well due to lack of pancreatic enzymes, however, i was digesting my fats and carbs well. My thyroid doctor told me that undigested protein particles stayed in my system and fermented causing inflammation of the thyroid. It also led to me not absorbing protein efficiently and who knows what other nutrients. Since then i've done a lot of research on digestive enzymes and malabsorption and basically undigested food particles of any type can lead to a host of other issues. It's worth doing a bit of research on this topic on the net if you have time.

    It appears virtually everybody on the thyroid board has low Vit D and either celiacs or gluten intolerance. At any rate, most of us have very similar issues and it can't simply be a coincidence. I'm surprised more doctors haven't cottoned on to this fact!! I can't wait for the day when they do.

     
    Old 01-12-2009, 12:46 AM   #15
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    Re: Hasimoto's-now parathyroid hormones high

    Quote:
    Originally Posted by Audrey-B View Post
    I have Hashi's and a stool analysis test showed that i was not digesting protein all that well due to lack of pancreatic enzymes, however, i was digesting my fats and carbs well. My thyroid doctor told me that undigested protein particles stayed in my system and fermented causing inflammation of the thyroid.

    It appears virtually everybody on the thyroid board has low Vit D and either celiacs or gluten intolerance. At any rate, most of us have very similar issues and it can't simply be a coincidence. I'm surprised more doctors haven't cottoned on to this fact!! I can't wait for the day when they do.
    Audrey, what stool test did you have? I would like to have it, too!

     
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