Advice please!!: Hi all, I posted prev about my... - Thyroid UK

Thyroid UK

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Advice please!!

louise52 profile image
5 Replies

Hi all,

I posted prev about my thyroid issues. After 14yrs on Eltroxin/Levo my thyroid has gone crazy in the last 2 yrs 10mths after having my 3rd child. I have Hashi hypo as well as autoimmune alopecia. This all started as i missed a couple of periods and was dx with Primary Ovarian Insufficiency. I went to my gynae as only symptoms i had was prolapse and was put on hrt which i couldnt tolerate. Came off after 3 mths and my periods and thyroid issues resolved for a further 6 blissful mths. Last feb it all went haywire again and has been for the last 14mths. It was only in Jan that my bld tests were consistently skewed and i feel the real root of my prob has come to light. My blds consistently read high TSH as in 14 , high FT4 just over upper range and am not sure of FT3. I was taken off meds but had to go bk on 50mcgs after 2 wks. Im coming into 5th wk of 50mcgs and get bkds tmrw. My prob is my endo believes im dev simultaneously TSAbs and TBabs!! If this is the case she can only try to manage my symptoms. Im concerned as ive asked re vit and iron levels and she waived that off. I havent had any done and have been supplementing myself as my ferritin has always been low 20s. I asked about adrenal reserve but was tested for Addisons and Cushings but not fatigue. Im afraid that i will be left in this state. Im 42 with 3 young kids and have been out of work since this started with my elderly parents helping with kids. Its a living nightmare and i refuse to believe 'this is as good as it gets'. Anyone have a swinging hypo/hyper thyroid???

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louise52 profile image
louise52

Oh since off hrt last 3 mths ive had a bleed so she doesnt think ive primary ovarian insufficiency anymore. Id like to try ndt but if my adrenals/vits etc low im afraid i wont get desired effect. Ive read Dr Peatfields book but just dont know where to start helping myself as it seems that might be the way forward for me

Clutter profile image
Clutter in reply tolouise52

Louise52,

If your TSH remains high and FT4 remains high your endo should be investigating resistance to thyroid hormone or TSHoma which is a benign hormone secreting pituitary adenoma.

thyroidmanager.org/algorith...

If you switch to NDT and start self medicating before you sort this out you will end up muddying the waters.

louise52 profile image
louise52 in reply toClutter

Thank you Clutter once again. I agree with the NDT aspect just now. Im just so frustrated with the whole process as ive been so unwell for along time and i guess i dont place much faith in gps/endos and i refuse to think this is it for me. She did mention TSHoma previous to this and thyroid hormone resistance which is why she took me off meds and is restarting slowly to see how things go. I will look up that link now. Im just so scared as ive seen there is not much you can do. Im v angry i wasnt told about it being Hashis yrs ago and told about my autoimmune issues other than heres a pill you will be fine!!!!! I could have changed my diet and lifestyle then and maybe wouldnt be in this mess now. Its so frustrating!!!!

Clutter profile image
Clutter in reply tolouise52

Louise52,

The link won't explain TSHoma or resistance to thyroid hormone (RTH). You'll have to Google those for explanations. If it is TSHoma surgical removal of the adenoma will cure that. I'm not sure how RTH is treated.

louise52 profile image
louise52 in reply toClutter

Yes i saw that!!! Tks!!

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