Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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Need help for a friend

malbers
malbers
A friend had RAI five years ago, since then life has been hell for her. Her TSH is 13.77 she did not have the results of her FT3&4 yet. I am guessing range would be close to the same as mine 0.4 - 4.5. She is only 107 -115lbs and takes a whooping 175mcg levo. She is again increasing the dose to 200mcg starting in the a.m. Hypo symptoms are really bad, muscles aches and the overall feeling of death!! Many of us understand that feeling. Her TSH has jumped around from 0.02 to 44.21 This poor woman needs some guidance. I have suggested Hashimoto but not sure about that either. She is having an ultrasound soon and has not had antibody tests recently. Any suggestions on getting the TSH LOWER.
mmztcass
mmztcass
Malbers:

Your friend may not be converting the T4 into T3 very well to have this excess TSH. If that is the case, she could benefit from taking something like Cytomel?

I find that if either my Free T3 or Free T4 are low, the TSH will rise.

{{{hugs}}}
malbers
malbers
MM, all is she told me is that her FTs are usually good and they are dosing just on TSH....UGH!! If she is not converting wouldnt her FT3 be low, like mine? I think she is done fighting. She asked last night for the name of my surgeon. She has be to a few different docs and is really frustrated. When I asked for cytomel they told me I would have to go back to the endo...I said no thank you
mmztcass
mmztcass
Okay. Any chance of your friend posting her labs any way? She still may not be at the 'right' places for her with the Free Ts. Even if she is done fighting and goes for surgery, she still has to learn how to manage thyroid disease from the TT perspective.

But then she may be having big problems from the RAI and the erratic antibodies. Antibodies stay high from the RAI for quite some time. If you follow Elaine Moore, she had her RAI 23+ years ago and still suffers from high antibodies.

Getting frequent labs are a must after a TT and finding out where she feels her best with the Free Ts, how to dose properly with the replacement meds, how to avoid Soy, don't take the replacement med so close to Calcium, Iron, etc.

{{{hugs}}}
mmztcass
mmztcass
P.S. Another possibility to consider if the replacement med doesn't work for her, consider taking something like Armour which is both a T3 and a T4 med. Maybe it'll work better?

{{{hugs}}}
bransnana
bransnana
Yes, I agree with MM. I'm willing to bet her Free T-3 is low and they're not testing it. Elaine Moore has said after 5 or 6 years almost all who've had RAI need additional T-3.
malbers
malbers
I agree, it just seems really odd that her dose is sooo high and her TSH wont stabalize. She just cant keep feeling this way. She takes her meds properly no food for an hour or supplements for 4. I will post the FTs as soon as she gets them back. The FT3 always takes longer to get back, must be different testing procedures. Stangely she feels hyper most of the time.
bransnana
bransnana
She probably needs to switch to a natural replacement or a t-3 med. That dose is high and her tsh is still way up there. Elaine says 5 or 6 years after RAI people usually need a t-3 med too.They just keep raising the T-4 med based on her tsh which is high but it could be because her t-3 is low. She needs the numbers.