[vickyhashley]

#1060650

Hi. I am trying to help my daughter who is having some health issues which I think is due to her Graves disease. When she was 16 she developed a goiter and lost a ton of weight, had rapid heart rate and hadn’t yet begun having periods. She was tested and found to have Graves…no family history and had her thyroid radiated. She has taken replacement since but has had many issues such as hair loss, extreme tiredness, bad depression, no energy, weight gain and menstral problems ! She recently had blood work done and everything was deemed OK…no change in Rx. I don’t see how this can be as clearly something is going on. She has never been seen by a Endo just her MD
and I’m just not sure MD knows what is going on. MD has her on Lithium for the depression and thinks she is Bipolar which is definitely isnt and thinks the menstral issues are due to Polysystic Ovarian Syndrome, which again she clearly isn’t. I think her thyroid is messed up and her hormones so out of whack that she is suffering ALOT and is miserable. She is 29 yrs old and weighs probably #160 and is 5’6. Thanks for any thoughts. I also know Lithium isn’t good for thyroid and if she was Bipolar being on it for over a year should have helped her moods but hasn’t. She also takes Zoloft and Ritalin…unsure why the Ritalin tho

[Kimberly]

#1183911

Hello and welcome – I’m sorry to hear about your daughter’s issues, but I”m glad that you found us. We are fellow patients here, not doctors, but here are a few thoughts that will hopefully be helpful…

For patients who are post-RAI and are feeling well, and MD is fine for periodic level checks and monitoring. But since your daughter clearly isn’t feeling well, getting an expert opinion from an endocrinologist would be helpful. The “Looking for a Doctor?” thread in the announcements section of the forum has several options where you can search by city/state/zip. In particular, it would be good to have an endo look at all the meds your daughter is taking, whether different meds in a similar class might be more effective (as you mentioned, Lithium can induce hypothyroidism) and whether some of these meds might be interacting.

It would also be helpful for your daughter to get a hard copy of her labs. TSH testing is fine for patients who are feeling well, but given her many symptoms, it would be good to see where her Free T4 and T3 are compared to the “normal” range.

Some patients also feel better on combination T3/T4 therapy (for example, Synthroid + Cytomel), although this is somewhat controversial in the medical community.

Wishing you and your family all the best!

[npatterson]

#1183912

Vicky,
I just sent you a private message. Your daughter needs an endocrinologist who SPEIALIZES in thyroid disorders…sometimes they are hard to find, depending on where you live. Take care,

Nancy

[npatterson]

#1183913

Vicky,
I was able to reach the specialist at the University of Michigan. I will see her at the meeting in Orlando (in fact, she is one of the speakers at the patient forum sponsored by the international thyroid committee). We will be in touch about referral information. I just wanted you to know that we ARE here for you.
Take care,
Nancy

[tiredofitall]

#1183914

npatterson,

This sounds just like me.

I had RAI 17 years ago and almost immediately (within 10 days) began the same problems Vicky has (hair loss, extreme tiredness, bad depression, no energy, weight gain) plus a few other problems.
Originally, I saw an endo and he gradually had me (“weaned”) down to almost no Synthroid. I never felt any better.

For the last 15 years, my PCP has taken care of my thyroid monitoring. He has me on a much higher dosage than the endo had me on, but there’s no difference in the way I feel. He always says that I’m within the correct range. No use to try tweaking. The end.

My PCP has pretty much eliminated any other problems. I have given up looking for help and have just resigned myself to living this horrible way-of-life. I have given up on ever feeling any way near normal.

From what you said to Vicky, you seem to be saying that a good endo might be able to help me. How do i find a “good one” in my area? I can’t take another doctor only leading to a dead end.

Thanks

[Liz1967]

#1183915

Tiredofitall,

“Tweaking” the Synthroid dose within normal range has made a huge difference for me. If TSH is at high end, I feel awful. Keeping TSH around 1, low end of normal, and I feel fine. As long as FT 3 and FT 4 are in normal range, I ignore them.

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