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EndocrineWeb Community Advice

I had RAIU in 1999 after (apparently) many years of undiagnosed hyperthyroidism (which my doctors said was pretty much as high as they'd ever seen). Thyroid function thereafter plummeted and I was utterly miserable with debilitating muscle spasms, massive hair loss, 15 lb weight gain despite eating under 600 calories a day, and failing asleep at my desk and while driving. It took my docs at least year to get me normalized after gradually adjusting the dose upward and then downward before I finally landed at levothyroxine 150 mcg. That dosage is where I've been for almost 18 years.

Meanwhile, in 2002, I was dx with TED in both eyes and had an orbital decompression and muscle surgery on the more severely affected eye. Fast forward to 2013, I was dx with breast cancer and started Tamoxifen, which I still take. I also underwent a bilateral salpingo oophorectomy and hysterectomy. Fast forward again, and I moved to another state and therefore lost my wonderful doctors. Several months ago, I was dx with beginnings of osteoporosis in one limb, which my prior onco told me would likely develop as a result of surgical and medication induced menopause.

Here's the problem. I now have a PC doc who doesn't like my undetectable TSH despite my normal T4 (he hasn't run any other lab) and despite the fact my TSH has been below lab norms or undetectable in almost every test I've had since 2000. Moreover, I have no clinical signs of overactive thyroid (i.e. no rapid heartbeat etc.). I believe my early osteoporosis is tied to 5 years on Tamoxifen and 4 years without ovaries. With this hx and solely based on the TSH, my PC now wants to reduce my dosage to 137 mcg, which is what I was on when experiencing the miserable symptoms described above. Because he is refusing to continue my present dosage, I asked for a referral to an endocrinologist (despite having a PPO, apparently in non-patient-oriented Michigan, specialists won't see patients without referrals). The endocrinologist "declined" to see me, apparently because she feels the PC can manage my meds.

Because it is so stinking difficult to get into either a PC or specialist in Northern Michigan (lower peninsula), I feel I must get involved directly in my care. Can someone help me determine what additional labs should be done to see if I am actually hyperthyroid and/or whether a reduction in medication is indicated given the totality of circumstances (and why)? Also, can someone explain what else can effect TSH that does not translate to a dx of acquired hyperthyroidism due to overmedication?

Thank you so much,

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1 Response

Is this good advice?

I’m not a doctor but it’s your right to request and /or ask for any test, after all you are the patient.
You should ask your doctor to research Scleroderma Disease and do bloodwork specific for Scleroderma Disease diagnosis.
Scleroderma is considered a very rare disease that most doctors don’t even know about. Im not convinced that it’s as rare as thought to be. Scleroderma is thought to be somehow related to thyroid diease / autoimmune diease with symptoms that mimic Arthritis and/or Lupus. Normal lab work to detect Lupus or Rheumatoid arthritis Will Always show a negative results... There is special DNA lab done that can be done to detect Scleroderma.
Most Rheumatologists Know about Scleroderma Diease and tests required for a positive diagnoses including the specific type of DNA blood test required.
My Grandmother, Mother, Aunt, and I all went undiagnosed for many years because this disease is so rare.

My mother lived to the age of 81 with
TYPE 1 SCLERODERMA (TYPE-1 Does Not affect on the organs ie:; lungs, kidney, heart, or gastrointestinal organs).

My Gramother only lived to be 63 and my Aunt 53 years old, with TYPE 2 SCLERODERMA ( TYPE-2 Does Affect the internal organs). I was very young when they both past away.
My mother unable to read or write didn’t even remember the cause other than the final cause of death listed as Heart Failure. It was just a 3 years ago before my mother passed away I found some family documents that revealed both my grandmother and my aunt suffered from Type-2 Scleroderma Diease and this disease ultimately lead to heart failure for both. After some research on Scleroderma I immediately knew my mother and I had both gone undiagnosed for many years, her with Type-1 and I just recently had new strange symptoms that reflected not just type-1 but these new strange symptoms were the signs of Type-2. I immediately had the special DNA blood work done on mother and myself, we both tested positive. Type-1 can allow someone a full life, Type-2 not so much... 3-5 years. Type -1 can progress to Type-2 many years later and most don’t even know they have type-1 because “it is so rare”, and no cure.

**NOTE; Most cases 1 or 2 usually starts with the thyroid disorder / autoimmune disease.
***NOTE; Thyroids are not part of any routine blood-work ordered by doctors. It’s considered to be a “Special” blood work request/order.

I’d complained to my Primary Dr. and suffered with thyroid problems for years without knowing before a new GYN doctor recognized possible thyroid problems and order a Thyroid panel, with results showing my cholesterol 329... (me @ 135 lbs and 5’5”) (Ideal weight/size) and then a confirmation of Hashimoto’s Thyroiditis Diease...
Followed by another 1&1/2 years of still complaining to my doctors of alway feeling tied, having got shingles, got Double Pneumonia, having multi unexplained itching episodes some with rashes, muscle aches, muscle spasms, joints hurting, my waking up many mornings with my fingers stuck in a claw position, trouble standing and walking after a long day, my feet and hands swelling to the point they would crack open, looking like I had small cuts on my hands and feet.

FINALLY... from the result of my finding some family medical history and some research... the diagnoses of scleroderma.