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Troubles with new doc and suppression guidelines

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Old 08-29-2013, 06:22 AM   #1
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reneeh63 HB User
Angry Troubles with new doc and suppression guidelines

My old doc retired due to health reasons so I had to find a new GP. I have a 25 year history of Grave's followed by papillary cancer at age 30, TT, and RAI.

She latched on to my (over)suppressed TSH's of .005-.01 and started lowering my dosage from 100mg. levothyroxine with 10 mcg. liothyronine (T3) down to 93 mg. then to 88mg and then also dropping off the liothyronine.

She was doing this every 4 weeks (not enough time in my opinion to evaluate any changes in my labwork). Now my TSH is up to .33 which I thought was right at the lower guideline for my history of low-risk papillary cancer from 20 years ago. But she is not satisfied and wants me to go down to 75 mg. She ONLY does labs for my TSH, not FT3 or FT4 and I actually haven't had my thyglobulin checked in 5 years.

I told her I would not go down to 75 mg. until she waited for me to stabilize and she was very skeptical and I could tell she was really humoring me by waiting another 30 days. She actually said she wanted me to be slightly hypo (!) because of the risk of osteoporosis and atrial fibrillation. Yes, I just turned 50 and perimenopausal.

I feel I have no choice but to switch to an endo who is hopefully more sympathetic to my lethargy, brain fog, and overall lack of energy. Is there any other advice for me or in finding a new doc? Thanks everyone!

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Old 08-29-2013, 06:41 AM   #2
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Re: Troubles with new doc and suppression guidelines

How long ago was your thyroid cancer? If it was many years ago (more than 10) you might not have to worry as much about suppression any more, but you may be due for a thyroglobulin and a neck ultrasound before anything.

My endo. is obsessed lately with lowering my dose and I'm still under 50---he doesn't understand anything at all about menopause and being on the pill or anything---so he's very focused on bone loss lately. So I understand your issue.

If this is a gp--can you switch? Can you find another doctor, or an endocrinologist---she is obviously ignorant of thyroglobulin so I would think you could go to a specialist for this purpose?

Being hypo can cause bone loss as well, and heart issues. I wouldn't use this doctor---I would travel far if I had to and avoid using her for this purpose if at all possible. I would try a university hospital and find an endo there.

Old 08-29-2013, 08:22 AM   #3
Join Date: Nov 2006
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reneeh63 HB User
Re: Troubles with new doc and suppression guidelines

You're was more than 10 years since the cancer..which is why I've grudgingly given in from suppressing down to "undetectable" in favor of the new 0.3 TSH guideline. But how far do I have to go? My latest lab shows I'm not technically even suppressed now since I am in the low normal range.

It seems the medical field latches on to the latest study and all prior concerns are then out the window. I would like a balance between cancer regrowth and the POSSIBILITY of osteoporosis/atrial fib. I mean, they can at least test my bone density again - wouldn't that be reasonable instead of blindly following a GUIDELINE that is not customized to anyone's specific situation? Yes, you can tell I am exasperated! ha

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ft3, ft4, papillary thyroid carcimoma, suppressive therapy, tsh level

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