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Thyroid Cancer, Nodules & Hyperthyroidism (Expert Forum)
Evolving autoimmune problem from Hashimoto's?
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida
Sarasota - FL
Questions in the Thyroid forum are answered by Mark Lupo, MD. Topics covered include Goiter, Graves Disease, Hyperthyroid, Parathyroid/Calcium Problems, Thyroid Cancer, Thyroid Nodules/Cysts, Thyroiditis, Thyroid & Pregnancy, Thyroid Stimulating Hormone (TSH), Thyroid Tests, and Thyroid Surgery.
Evolving autoimmune problem from Hashimoto's?
by frootbar, Jul 08, 2007 12:00AM
Dear Dr. MAL
I am a 50 yr. old male, for past 14 yrs. have had hashimoto's.
My current meds, Synthroid, 125mcg., and Cytomel 12.5mcg.
per day. I have developed a bewildering array of symptoms
I have for about a yr. and a half now, had an elevated CK, the
reading is typically between 450 and 800ish, (canadian values).
My sed rate was 19, now 40. My iron
tests show a level of 33. My internist/endo says that's too low. I take iron, but it makes my
joints pain alot. (I think it's the iron?). I had a hilar adenopathy, subsequent CT showed tiny liver cysts, no adenopathy.
I just developed a tumour in my left arm, took only 4 days.
with lots of lymphatic fluid in the arm at that time, it took
weeks to see the lymph fluid go away, it burned.
Six years ago I had a negative ANA, now I have a "weak positive".
A Neuro-muscular team found I had an eleveated PTH, it was 9.6
and almost low plasma Carnitine. Neurologists
determined I had very mild nerve damage in my toes.
I also have a laundry list of other oddities, like red patchy
rash on knuckles, came and went, on nose, face, sometimes, joint
pain, muscle pain sometimes unbearable,
and spider veins that mostly come and go, hemmoragic rash on feet, comes and goes, shortness of breath, fullness in stomach,etc.
Internist/Endo once said I probably have MCTD, Leukemia, Lymphoma
and 100% chance of diabetes and likely Lupus.
Thank you thank you for any guidance.
I am a 50 yr. old male, for past 14 yrs. have had hashimoto's.
My current meds, Synthroid, 125mcg., and Cytomel 12.5mcg.
per day. I have developed a bewildering array of symptoms
I have for about a yr. and a half now, had an elevated CK, the
reading is typically between 450 and 800ish, (canadian values).
My sed rate was 19, now 40. My iron
tests show a level of 33. My internist/endo says that's too low. I take iron, but it makes my
joints pain alot. (I think it's the iron?). I had a hilar adenopathy, subsequent CT showed tiny liver cysts, no adenopathy.
I just developed a tumour in my left arm, took only 4 days.
with lots of lymphatic fluid in the arm at that time, it took
weeks to see the lymph fluid go away, it burned.
Six years ago I had a negative ANA, now I have a "weak positive".
A Neuro-muscular team found I had an eleveated PTH, it was 9.6
and almost low plasma Carnitine. Neurologists
determined I had very mild nerve damage in my toes.
I also have a laundry list of other oddities, like red patchy
rash on knuckles, came and went, on nose, face, sometimes, joint
pain, muscle pain sometimes unbearable,
and spider veins that mostly come and go, hemmoragic rash on feet, comes and goes, shortness of breath, fullness in stomach,etc.
Internist/Endo once said I probably have MCTD, Leukemia, Lymphoma
and 100% chance of diabetes and likely Lupus.
Thank you thank you for any guidance.
Doctor's Answer
by Mark Lupo, M.D., Jul 08, 2007 12:00AM
, Jul 08, 2007 12:00AM
Dermatomyositis may expalin this...not my specialty, but a good possibility. This is sometimes a tough diagnosis to make but there are antibodies associated with it.
So the repeat CT showed clearing of the hilar adenopathy? Was the L arm tumour biopsied?
The high PTH -- was the calcium high or low or normal? Would test vitamin D levels.
I'm sure B12 has been tested.
Not sure what to make of the plasma carnitine.
Of course, make sure the thyroid is controlled -- ie TSH around 1.0.
I don't see any mention of glucose levels, so '100% chance of diabetes' is confusing -- this diagnosis is made only on glucose levels, not evidence of nerve damage.
So the repeat CT showed clearing of the hilar adenopathy? Was the L arm tumour biopsied?
The high PTH -- was the calcium high or low or normal? Would test vitamin D levels.
I'm sure B12 has been tested.
Not sure what to make of the plasma carnitine.
Of course, make sure the thyroid is controlled -- ie TSH around 1.0.
I don't see any mention of glucose levels, so '100% chance of diabetes' is confusing -- this diagnosis is made only on glucose levels, not evidence of nerve damage.
I have no idea why the intern/endo says what he says.
My TSH is around 5.69 currently, which is way too high for me.
Calcium has been high normal. B-12 is always high, I take supplements.
Nobody has been willing to biopsy the tumour, I was told it may cause problems? I'm awaiting an MRI to determine more info about it. They said
it's likely a Neurofibroma, Lipoma, or Fibroma, but it appears atypical for those
from ultrasound.
Glucose is always 5 for me. Ha1C is perfect.
My TSH has fluctuated from .05 to 12. They never treat me unless it's
over about 6 or 7. It's frustrating.
Thank you. Will ask for the D vitamin test.
Out of curiosity, my antibodies are, TPO about usually 80, and anti-thyroglobulin (hope I got those right) is typically 5000. I'm told that is
a massive amount of antibodies. Is that accurate anyone? Thanks so much.
With a high PTH and calcium this may be primary hyperparathyroidism which could cause many, but maybe not all, of the symptoms. It could account for nerve damage and there is an unusual tumour called a "brown tumor" that is associated with long-standing hyperpara that occurs in the arm.
I still would pursue the dermatomyositis question -- it is not associated with thyroid antibodies and a rheumatology specialist would be the person to see.
The TSH should be kept around 1.0, but the symptoms are beyond that of a slightly abnormal TSH during hypothyroid treatment.
(My previous post never showed up, though my name did. I'll try again.)
I have been checked somewhat for lupus and rheumatoid factor, etc.
It's been I guess, so far, inconclusive?
The hilar adenopathy disappeared, after two months of intensive natural
therapy regimen. I did this, with the possibility it could be NHL or Leukemia,
according to internist's comments.
Upon subsequent CT, the hilar was gone. I would have nixed any suggestion
at a biopsy of a hilar, unless it was clearly shown to be of importance.
I have had the suggestions the tumour is a 1. fibroma, 2. neurofibroma,
or 3. lipoma.
However, the radiological dr. said the tumour is atypical for any of these,
he suggested it is benign, but of unknown origin. He said it was odd, and
an odd place to be located.
Thanks for all the input!
FB.
I just wanted to also say, that while I rarely pay for healthcare here, with
out system, you are often bound by the constraints of who you get.
Where I live, we have a terrible doctor shortage, and I cannot easily change
my family doc, she's pretty good, but is stubborn. She does not see a TSH
of 11 as a problem, no joke here. I have to repeatedly show up and say how
awful I feel to get results, and I don't like being a pest, so I struggle with this.
The Endo I have is baffling. He's told me a whole host of things I "may" have,
and he's said I have "active" disease, etc. etc. He also will not treat a TSH
unless it's about 6 or 7 or so. He feels my almost non-existent DHEA is ok,
and my PTH is fine, I guess because it's not massively elevated?
My free Testosterone has at times been almost not there, he's ok with that!
I'm not. But I have to kind of gently force the hand of the family doc to get
another specialist, and I could end up with someone just the same. I hate
to be critical of highly trained individuals, and I try and have respect for their
chosen profession, but my God, sometimes I do wonder what is going on
in their head!
My neurologists have been the most helpful to be honest, and Dr. Lupo here.
This is the first logical assessment I have had I think.
I have one Neurologist, she's been around for awhile, she took my calcium
right away, but not the PTH. The other one did the PTH. My Endo did neither!
He was obsessed with my antibodies, and to his credit, did provide some
decent data that is useful. He ordered a thyroid scan/ultrasound, and I am
in the 20% who have no nodules and was clear, that surprised them all actually.
I have muscle spasms and muscle pain, joint pain now is unreal, in small
bones, and massive fatigue but not always, and my TSH just got worse I
think, so maybe someone will do something so I don't have to self-medicate.
I'm putting on weight again, and crave sweets like I have no control, and
my stress/anger is kinda bad, i'm not an angry person, but when my TSH
is off, I get touchy.
Anyway, thanks again, I can put all this info here to use I think and maybe
someone here will get on the ball and help me.
FB
I'm in Canada, I think it's a good system mostly, but it has it's issues of course. I'm not loaded with cash, so, it is a problem for me to seek
out of country help, but perhaps phone consult with U.S. expert is possible.
In the city where I am, docs tend to be conservative in my opinion. They stick
to the "standard of practise", and take change poorly, not all, but many.
I have not found anybody who is accepting of TSH of 1, or even 2.
I take 125mcg. synthroid/12.5 Cytomel daily. I've increased my synthroid
myself, it's the only option I have right now, so I added a 1/4 of my synthroid
tablet. Right now, I feel rather horrible at a TSH of about 7.
I did try natural thyroid, but was allergic. It was not pleasant. I think that Dr.
Lupo has provided info that I will take up with my family doc monday, and
see if she's in a receptive mood. I have to admit, I am flustered at the way
they have all fluffed off my horrendously low DHEA and high TSH's, and low
ACTH and Test. No exaggeration, my DHEA is almost not readable, that
can't be good! Anyway, I shouldn't plug up this area, maybe use the other
thyroid forum, so see you there? I hope, and thanks so much. I start to lose
my marbles at high TSH's and I really appreciate the support and help, it
is of tremendous benefit.
FB.