Really confused and need some advice please :(

Hi all,

I have posted on here before regarding my borderline tsh. Just to recap i had a baby in sep 13, in feb 14 tsh 2.27, dec 14 (tested due to feeling very unwell) tsh 5.13. In march tsh 5.22, was also found as low vitamin d of 34. Just had both retested and vit d is 51 within range as its 40-110 i think or could be 50-110. Tsh is now 2.2!

These latest blood tests followed yet another consultation where my gp adamently refused a trial of thyroxine, refused t3 rt3 or any other antibody tests (she has done tpo) which was normal.

She believes its not my thyroid and this latest result proves her right i feel so fed up. I still feel awful. If its not my thyroid what could it be, this does not feel like my usual symptoms from my chronic conditions.

I even asked her for an iodine test and she refusef. So i suggested i pay privately for the full lot of them and she said od be wasting my money as someone with a mid range tsh and normal t4 is completely impossible to have any other abnormalities. She said this is all caused by stress.

I could cry :(

Thanks for reading.

9 Replies

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  • Maxandme, What is your FT4 with the lab ref range please? It's entirely possible that someone should have TSH and FT4 within range and FT3 below range. Happened to me on 125mcg Levothyroxine.

    Negative TPO doesn't rule out Hashimoto's, which is the usual cause of TSH fluctuations, but it's possible your pregnancy hormones may have raised TSH earlier. It might be worth having a private thryroid panel to check FT4, FT3 and thyroglobulin antibodies. You won't get treatment until TSH is >5 or 6, whatever your ref range is, even if antibodies are positive or until FT4 or FT3 are below range.

    You need to continue supplementing vitD until it is 75-200. 100 is usually good for most people.

  • Hi clutter thank you for replying,

    That's really useful to know. Do gps just plain lie or do they not know better? I feel so angry.

    tsh is ref range 0.3 - 4.2 measured in mu/l and t4 is 12 - 22 pmol. My vit d was tested and despite being on prescribed vit d and calcium it was 34 reference range 50 - 120 mmol. I have long history of vit d deficiency, i usually feel awful around 20-30 and better around 100. Coming towards the end of my 12 week course of 3,500iu pd plus my a combined fit d and calcium pill.

    So

    Feb 14 tsh 2.27 t4 14.8

    Dec 14 tsh 5.19 t4 14.3

    March 15 tsh 5.22 t4 13.8

    June 15 tsh 2.20 t4 I forgot to ask. But I can get.

    I still feel really unwell even though tsh seems to have dropped a lot. I am gaining weight, extremely tired, palpitations worsened (I have pots), dry itchy skin, hair changes, achiness and worsened carpal tunnel syndrome. I need to convince my gp to keep me on the higher dose vit d as I think it's going to take a while to get up to 100.

    Thank you

  • Maxandme, FT4 is a quite low but will be a bit higher now your TSH has dropped. Your symptoms sound very hypothyroid but it could take a long time for bloods to be abnormal enough to get treatment. This is why so many people end up self medicating.

    Once vitD is around 50 NHS will probably stop prescribing. D3 is freely available without prescription and isn't expensive. 5,000iu daily should be enough to boost and maintain your levels.

  • Hi,

    Im so angry my gp has left me in such a state. I still feel dismally ill even though tsh is back down to 2.20.

    I cant work out whats made it drop back. Is this classic of hashimotos? Or could it have been stress or due to other illnesses temporarily raising it? She seemed to think my t4 was fine but i see like u say its on the lower end.

    I just dont know what to do right now. Do you have any recommendations for a lab and what tests to get please?

    Thanks x

  • Maxandme, non-thyroidal illness can raise TSH which is why treatment doesn't usually commence until the 2nd high TSH.

    Did you have the blood tests at the same time of day? TSH is highest early morning and lowest around 13.00. Have your next thyroid blood draw early in the morning before any food and drink other than water.

    You can order private thyroid tests from Blue Horizon and Genova thyroiduk.org.uk/tuk/testin...

  • Hi clutter, ive had 2 previously raised tsh tests and this third one was lowered again. She would not treat based on that and those two raised ones were 4 months apart. The others were earlier in the day than this last one it was around 12.45/1pm.

    The most annoying thing was i had a blood test the week before this last attempt and the lab refused to process it as it hadnt been labelled.

    I might go for them thank you for the info. Do they take the blood aswell? Is non thyroidal illness any kind of illness?

    Thank you x

  • 'Mid range TSH'!!! at 5ish? That's ridiculous. Most healthy people have a TSH of under 2.5. In some countries you would be treated at TSH over 3. The NHS tries to save money by not treating until someone gets a TSH of 10 or over, which might be where her 'mid range' comment comes from, but quite a lot of doctors will treat at TSH=5.5, or at least admit that you are borderline underactive, particilarly if you have symptoms, which you do. She should have started you on 50mcg a day of Levothyroxine, or 25mcg if you are over 65 or have heart problems, then retested you after 6-8 weeks, increasing your dose until your TSH dropped to around 1, or lower if your symptoms persist and your T4/T3 readings are within range.

    If it was me I would consider self treating.

  • Hi eeng,

    Im so so fed up and feel so ill even though its dropped down to 2.20 now so now theres definitely no leeway to get thyroxine and i dont know if i need it even. Im so confused about what my body is doing and so let down by my gp whom i thought was understanding b4 this. After reading so much about gps being similar to mine with so many people it makes me wonder if its because they dont want people to go on thyroxine coz once you are you always get free prescriptions? Is that still the case? I wonder if its a cost cutting thing.

    I am so sick of feeling this way. I feel like going down that route of self treating but im scared to as im breastfeeding and without med supervision id be worried about my son.

    She knows i have pots and knows i would feel the effects of small changes in thyroid function whereas perhaps some previously healthy people might not. She told me this but refused to help and now its in range ive got no chance at any help :(

    Thanks for reading and replying x

  • Maxandme, I don't think thyroid hormone replacement will affect breast milk.

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