hyperthytoid & hyperparathyroid

[limestonefactory]

I have had a lump (small goiter) on the right side of me neck ever since I can remember and it hurts off and on.  I have also had a whole slew of symptoms that I now know are related to Hyperparathyroidism and despite complaining to God only knows how many health professionals about the symptoms for the past 16 years, was just diagnosed with Hyperparathyroidism (PTH 73.8) in the last 2 months, because I was passing a kidney stone.  I have now found out that I also have mild Hyperthyroidism (all my blood tests are normal, but 6 hour I-123 uptake is 19.7 and 24 hour is 32.6).  I was actually looking forward to Parathyroid surgery, but my surgeon sent me to see an endocrinologist because all the scans and blood tests indicate that I don't have an adenoma, only thyroid nodules.  I have read that often these sestamibi scans are misread because of lack of experience.  I went to the Endocrinologist yesterday and pretty much found out that I AM DOING TOO MUCH RESEARCH ON MY OWN and not to worry about any of the questions I asked him.  When I asked him shy my thyroglobulin levels are 376 instead of the <20 that's normal, he told me not to worry about it.  Right not I'm Extremely frustrated and confused and am trying to figure out my next step or at least what all this means.  How do I find a doctor that knows how to make sense of all this?

[jrcaleb]

Check out Dr. Norman in Tampa, FL.  Tampa General Hospital.  He has a website - Supposedly does 10-15 of these surgeries three times a week.  Hope this points you in the right direction.  

[Mark Lupo, M.D.]

Was the "mild hyperthyroidism" based on the uptake study? This is not the right way to make the diagnosis.  The TSH, T4 and T3 blood levels determine if you are hyperthyroid.  The positive Tg-antibody may be related to chronic inflammation in the the thyroid which may be associated with the nodules.  

With kidney stones and a high PTH (I assume your calcium is high normal or high) - you need parathyroid surgery.  Just b/c they cannot find the adenoma on scans does not mean you don't have the problem -- that is a very common mistake in parathyroid evaluations.

Would suggest finding an experienced parathyroid surgeon (look at parathyroid.com -- they do the most parathyroid surgery of anyone in the country).

Either have the thyroid nodules biopsied (if >1cm) now or a good surgeon could do this during surgery to prove they are not cancer.

[Mark Lupo, M.D.]

the high normal calcium, high PTH and excessive urine calcium with stones is indicative of parathyroid disease -- but this is subtle and some docs may miss it.  The key is finding a good surgeon -- ask your endocrinologist who to use.  Dr. Norman is expensive, but he does the most parathyroid surgery probably in the world....

by the way, the thyroid levels are normal.

[limestonefactory]

Thank you for your reply.  Here are some more numbers for you.  

Calcium 9.8 (normal range is 8.6 - 10.20)  I did the 24 hour urine collection 3 years ago and found out that i have excess calcium in my urine.

TSH 1.01 (normal range 0.34 - 4.82
Free T4 1.4 (normal range 0.77 - 1.61
I thought they did a T3 test, but I can't find it on any of the lab test result sheets.

I don't know what the rest of these mean
ESR 32 (normal range 0.00 - 15)  
MCH 32 (normal range 27 - 37)
%NEU 64.2 (normal range 38 - 63)
%LYM 25.5 (normal range 33 - 38)

I have looked at parathyroid.com and I would love to have Dr. Norman perform my surgery, but I live in Oklahoma and like everyone, funds are scarce at the time.  Dr. Norman charges nearly $1000 for records and consultation.  Do you have any other suggestions for finding an experienced parathyroid surgeon.  Now that I know why I've felt just blah for so many years, I can't wait to get this fixed.

Thank you for all your help :)

[limestonefactory]

Thanks for your second reply.  I didn't think i had hyperthyroid since I'm overweight.  Anyway, I went to another surgeon today who supposedly specializes in thyroid/parathyroid surgery.  He seemed to know more about thyroid problems than the endocrinologist I just saw that pretty much told me not to worry about anything and made me feel like a hypochondriac.  He did an ultrasound of my thyroid as well as a a needle biopsy of a nodule and said that I have some type of thyroiditis.  He politely told me not to worry about my parathyroid yet, because my calcium is too low at the moment and he did not think I needed surgery yet.  He did order repeat blood tests (PTH, calcium, phosphorus, and vitamin D). I do like this doctor and I am greatful that he is atleast investigating my problems, but I think that I'm going to have to keep feeling BLAH for a little longer so I can save up enough money to see Dr. Norman.  It just sucks to know what's wrong with me and have to continue feeling this way because Dr. Norman is the only one that can help and he's in Florida.  At least I know that there is someone out there that can help.

Thanks again Dr. Lupo :)