[Debra]

#1018894

My husband was originally diagnosed with Grave’s Disease back in 1993. He was treated with radioactive iodine about 6 months later. He never responded appropriately to replacement therapy. No matter how much levoxythorine he took, there was never enough. Eventually our doctor determined he was resistant and not converting the T4 replacement to T3 properly. Several combinations were tried and numbers improved but were still not normal. He had gained a significant amount of weight over about 10 years time. Then suddenly he started putting on a lot more. Across ten years he had gone slowly from about 185 to 260. then in a matter of about 2 months, he went from 260 to 285. His blood pressure (borderline already) shot up and became difficult to control even with meds, cholesterol numbers were bad, creatinine levels too high, liver enzymes off, then his testosterone dipped way low. Our doctor (an internist) decided he was in over his head and put together a referral package for a new endocrinologist, who said he had Cushing’s. No adenoma was ever found (even with postoperative pathology), but they verified it was his pituitary overproducing ACTH through supression testing and sinus sampling. After his pituitary issue was corrected by transphenoidal surgery, we are finally able to get his thyroid numbers in line (though still just barely) with a combo of cytomel and levoxytorine. However, he still has all kinds of problems. We have been unable to resolve the low testoerone. Cushing’s symptoms are returning (even after a return treatment with Gamma knife in ’05), he is now diabetic, and another doctor has suggested the possibility of hyperparathyroid, as well. A recent neck ultrasound shows he has no residual thyroid tissue remaining, which we already suspected because without replacement he has no detectable amount of T4 or T3. Is it possible that a pituitary problem is actually responsible for all? Are there other possible connections here? I just can’t believe that he could have virtually every endocrine gland in his body malfunctioning and it not be somehow connected… But we have not yet found any answers. ideas where to look next? Anyone else go through something similar?

Thanks,
Debra

[Ski]

#1067724

Hi Debra,

This is certainly a complex mix of issues for your husband, and these are great questions for his medical team ~ I’ve never seen any case this complicated mentioned here, and of course we are not experts on anything except our own Graves’ experience and some of the facts related to the symptoms and treatment of Graves’. The only thing I can really say for sure is that if his pituitary is malfunctioning, the feedback loop involving your husband’s thyroid hormone levels may well be interrupted, and the doctor would have to judge your husband’s thyroid hormone levels by purely T4 and T3 blood levels, rather than TSH levels. That’s up to the doctor to figure out, of course. The pituitary is involved in MANY feedback loops in the body, so if it’s malfunctioning, they could all be out of whack and things could get a bit crazy.

Keep on the doctor and make sure you get everything tested that is recommended. If I were you, I’d get a handle on all of this with some good paperwork (keep a binder of his test results, educate yourself as to what all the aberrant levels mean, etc. etc.). You and your husband are most certainly more interested in all of this than the doctor (interesting as it may be, the doctor doesn’t have the time to devote that you do), so delving into the details of what’s been happening can only be to your benefit.

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