I am losing hope. Anyone out there?: TT 9 months... - Thyroid UK

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I am losing hope. Anyone out there?

5 Replies

TT 9 months ago due to Graves’ disease. I have been at a TSH under 1 and asymptomatic for 2 weeks in 9 months. I feel absolutely horrible. My weight hasn’t changed, I’m extremely compliant in medication and administration. I take brand name synthroid only. Why aren’t my labs stabilizing? Why have I been undertreated for so long? I AM MISERABLE. I actually feel like I’m dying.

34 yo F. 117 lbs. Graves’ disease for 10 years. My weight has fluctuated between 116-119 post op. I’m Probably 5 lbs of edema. TSH suppressed to 0 for 10 years. TSH became lab measurable 4 months post op.

Started at 88, then 100, then 112. 112 too much, in 7 days I was shooting out of my chair. Dropped to 100/88 split dose. Worked for 2 weeks, TSH 0.58. TSH went up

To 1.5. Went to 100 full time. TSH went up to 2. Stayed between 1.7-2.3 the past 8 weeks on 100.

Started alternating 112/100 this week.

100 didn’t work, then less then 100 did, then 100 doesn’t? What is wrong with me? I want relief. I am painfully swollen and ice cold, bradycardic and hypotensive. My muscles cramp non stop.

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5 Replies
Lora7again profile image
Lora7again

You might need T3 as well as T4 or NDT which contains both. Can you post your recent blood tests? We need TSH, T4 and T3. Also any vitamin results you have we need B12, Iron and ferritin, Vitamin D and Folate. All these need to by optimal for the Levothyroxine to work. I have had Graves' disease for 12 years now and I have no intention of having RAI or having my thyroid removed because I know women who have struggled afterwards because they don't get the support or treatment from the NHS.

in reply toLora7again

I am low FT3.

I became extremely intolerant to anti thyroids by the 10th year. All other blood work good.

Lora7again profile image
Lora7again in reply to

Do you have any results with ranges? Just the TSH is not a good indication of your thyroid levels. My TSH is 0.38 and I am on no drugs at the moment and I feel well because I am on my second remission because I am one of the lucky ones. Also your Doctor should be testing your T4 and T3. Has he done that?

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Lora7again in reply toLora7again

I am sorry you have left. I hope you are still reading this because there are a lot of people on here who can help and support you. There are women without thyroids and they would be able to tell you what works for them. I am where I am now because of a lot of kind helpful ladies on sites in the USA and UK helped me. The reason this site exists is because we are not being helped by Doctors or the NHS.

If you don't return join Elaine Moore's site in the USA, she helped and advised me a lot.

Here is the link

elaine-moore.com/

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