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EndocrineWeb Community Advice

Should I switch Endo's, go to a rheumatologist or am I crazy?

From: rdubs_nyc - 2 years 20 weeks ago

I recently let my endo whom I have been seeing for over 6 months that many symptoms are returning like tingling hands and fingers, exhaustion and shortness of breath, some are not going away like fatigue mid day and sleepless nights, and new ones are appearing like tingling feet and brain fog.
I JUST had labs done, and she said "since my thyroid levels are normal, I may want to consult my primary Dr."

Isn't my endo supposed to care for my Hashi symptoms? Should I go back to my Rheumatologist who diagnosed me?

My primary always advises I go to a specialist. I live in NYC, so I can switch Dr.'s, am I wrong in thinking she was the one to care for me and her response was odd?

Do you find this discussion helpful?

4 Responses

Is this good advice?

In my personal experience, just because your thyroid levels are normal in the last labs, doesn't mean they will stay that way. My endo doc checks mine every 3-4 months (for many years) and we adjust my meds up or down as needed. I would see another doc, and see how you like him or her, then switch or find another. You need to have confidence in your doc. Your primary care guy will likely not know nearly as much about how to handle your ongoing care.


Is this good advice?

I just got diagnosed with Hashimoto's, and my thyroid hormones (TSH, T3, adn T4) are in the normal range; my TSH always has been, the others were never tested before. I was diagnosed somewhat accidentally, because nodules were seen on my thyroid in an MRI of my neck for a pinched nerve. Nobody ever tested if I had antibodies to my thyroid, not even now. That is in spite of the fact that both autoimmune disease and thyroid disease run in my family,and I have been complaining about most of the symptoms of Hashimoto's for the past couple of years and some of them for decades.

So, I think that most of the symptoms are due to my immune system attacking my body in general, not just attacking my thyroid. I do not have hair loss, weight gain, constipation, or trouble swallowing. I have fatigue and sleepiness, cold intolerance, memory loss, times when my whole body swells and face and hands get puffy, joint pain and stiffness, tendonitis, carpal tunnel, increasing cholesterol, and one spot in my throat which is recurringly itchy or sore (which I asked a GP to check out and he wouldn't) which happens to be where my thyroid gland is.

My doctor who did the ultrasound and fine needle aspirate of my thyroid to diagnose Hashimoto's is an endocrine surgeon with a fancy new robotic surgery machine, so of course he wants to do surgery since I have nodules and he kept asking if I have trouble swallowing, which I don't. He did not discuss all the symptoms that are due to Hashimoto's. He did not say anything about treating the cause, which is my immune system attacking my body. As if it would stop once he removed half of my thyroid gland... I know from my family history that it will continue to attack the rest of my body, but he did not talk about the auto-immune aspect at all.

So, I plan to go to a rheumatologist/immunologist and just keep going until they at least try to treat the root of the problem. Hashimoto's is not on the list of disorders that are treated by rheumatologists where I go, but it should be, and I will bug the bejeezus out of them until they do.

Is this good advice?

Oh, and I should mention that I have a family history of HYPERthyroidism. This could be why my thyroid hormones are normal when more than half of my thyroid is damaged and not functioning. I think if I my immune system had not destroyed most of my thyroid, I would be hyperthyroid like my brother and mother. So I am probably a strange case that would allow doctors to see which symptoms of Hashimoto's are caused by hypothyroidism and which are caused by the immune system attacking other parts of your body (if they cared enough to think about it).

Is this good advice?

If it were me I would I
see another endocrinologist first. Take any medical records, so he doesn't have to repeat tests that were just done. Yes, your endo doc should be the main one treating your hashish symptoms and routine monitoring. Some docs are just better than others. IMHO


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