Asking for help

Been feeling pants for over a year. Have had various autoimmune things over the years; erythema nodosum, lichen planus and now hypothyroid. Went through the "depressed therefore antidepressants' route and still felt pants so went to see an endo on BUPA. TPO at above 1100 (0-100). No action except to repeat TSH screen that had been normal 3 months earlier. When those results back in May TPO now over 3000, TSH 36.8 (0.35-5.5) and FT4 7.2 (10-19.8). Started on 50 Levo and went back after 6 weeks. Went on the Atkins diet and lost 1.5 stone. Still feeling Pants so GP upped the dose to 75. Had some more blood tests and asked for more tests. TSH now 1.8 and FT4 16.90 (ranges the same as previously). Vit B12 297 (211-911) Folate 9.15 (greater than 5.38) Ferritin 87.3 (10-291) Vit D3 56.3 and Vit D2 less than 5 (range for d2+d3 30-50). TPO still over 3000 Still feeling pants and GP has no suggestions except to go back and see Endo. Any suggestions lovely people?

6 Replies

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  • I expect you have been told you have Hashimotos - which is another auto-immune condition. Sometimes those of us with Hashi's have problems converting T4 into the ACTIVE T3 hormone - one that is needed in every cell of your body. Your B12 is also very LOW and needs to be nearer the top of the range. Many symptoms of B12 deficiency cross over with being Hypo... Your dose is still quite low - the FT4 looks almost where it should be - but it would be helpful for you to know what the FT3 reading is....

    b12deficiency.info/signs-an...

    Many of us with Hashi's also benefit from going gluten free - as most auto-immune conditions can start with the gut and LGS - Leaky Gut Syndrome. This also causes the deficiencies.

    I have Hashi's and Crohns and in the past had erythema nodosum ...

    Please ask more questions and I am happy to provide more information - didn't want to send you into information overload with books and websites. Maybe you already have them....

  • Marz. Thanks for the reply. Send me 'Everything'. I don't have a label for my diagnosis and am fed up with feeling cr@p. any suggestions at all gratefully received. Will defo look at gluten free as an approach Interested in your comment re B12 and will look at the link. I don't think I have had a FreeT3 test - will get one sorted.

  • Books: Hope for Hashimotos - by Dr Alexander Haskell - website by the same name....

    Hashimotos The Root Cause - by Izabella Wentz ....also a website with Newsletter. A fellow sufferer....

    Auto-immune Thyroiditis - Hashimotos - is the most common thyroid condition worldwide - even with all those poor people who have not had their anti-bodies tested :-(

    Website :- stopthethyroidmadness.com is very good with an excellent book which has been updated. The latest one written by Docs in the US who think outside the box....

    Book: The Thyroid and How to Keep it Healthy - by Dr Barry Durrant-Peatfield is a good book to have to hand for everything thyroid related....a great read.

    It's best to think of yourself as having an auto-immune issue and work on that - rather than a thyroid problem. Of course take the medication but there is so much support work that needs to be done....

    You can take a peep at the edited version of my profile if you have time - yes it can be a journey :-)

  • Thanks Marz. Some research to do here.

    Have ordered the dissolving B12 dots to see if they make a difference.

  • One suggestion which worked for me getting my TPO antibodies down is to go Gluten Free - totally and utterly. My antibodies went from over 700 to 30 within 6 months of stopping all gluten. I am currently not feeling well at all but I think that is due to my Ferritin being through the floor (if I try to eat any more liver I shall scream) - I have a blood test Thursday to see - and I believe the Levo doesn't work too well if iron is low - time will tell. Whilst your ferritin level isn't as bad as mine tends to be (same reference ranges and mine was 49) it may be that you would feel better if that were higher - liver sandwich anyone??I am about to start an elimination diet - I will either feel better in a few weeks or I will have disappeared completely!!

  • Thanks Loobs39. I have stopped eating anything with wheat - pasta, bread, cake, biscuits. Think I need to consider a further lock down on that! But I won't be eating liver - cannot abide the stuff! Thanks for the tips.

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