B12 and under active thyroid

Hi all

Does anyone have an under active thyroid and is self injecting b12 or being treated by dr? I'm on 125 levo and have raised antibodies, I take selenium , magnessium , b complex and Spatone. Have been self injecting for 2 months now every other day. I thought I was feeling 50% better but now id say 20%. . The dr gave me a form for a full blood count yesterday full thyroid and vitamin plus 9 am cortisol ( she suspects CFS) I feel low, tired , aches and pains and out of breath, feel like it could be thyroid as my t4 has been dropping gradually. Is this why b12 isn't working? I'm making all this effort and feel I'm not getting anywhere. 2 months in I thought I'd feel better. We would like another baby ( at least try) but how can I!! I had no problems before my daughter was born. My health is awful now :(

Any words of wisdom or advice :) :) r

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42 Replies

  • How are your T3 levels ? How is your VitD ?

  • T3 4.58

    VitD 122 these were in October

    Then 1 week later my dr did thyroid and my tsh had risen to 1.45 from 0.9 and t4 had dropped from 17.64 to 11.00.

    I think I'm getting it all sorted and now I feel drained again

  • Have noticed you have also posted on TUK - so will join the thread there :-)

  • not an expert on thyroid but have seen a number of people over the last few years comment that their thyroid meds need adjustment when they start treatment for B12.

    However, given all that you are supplementing it could be a number of things going on.

    would see what results come back from the tests.

    if B12 is very high then could be a functional B12 deficiency kicking in.

  • What does functional B12 deficiency mean? Thank you :)

  • lots of B12 in your blood but not getting through to cells where you need it.

    strictly speaking it applies if you B12 levels are above normal range but medics can refer to functional B12 deficiency if levels are normal but someone is symptomatic of B12 deficiency

  • And so what do you need to do? Should I be injecting every other day?

  • the recommendation on loading shots is every other day until symptoms stop improving and from what you say you seem to be beyond symptoms improving. you could try stopping for a while but that may not resolve the situation re functional deficiency, if that is part of the problem.

    see what comes back in the test results and try to work with your GP

  • Do you just take B12? Are you taking folate as well?

    What about your ferritin levels?

  • I'm taking a b complex with 400 mcg folate in with it. Ferritin was 63 when I started injecting B12 so I've been taking spatone . :)

  • I'm not an expert so hoping someone else will see this and comment - but if you're injecting B12 every other day I'm not sure whether that's enough folate.

    What sort of B12 are you taking?

  • Hydrox 1 mg every other day, I was taking 5 mg folic acid but I queried it on here , same reasons and decided it was too high 🤔

  • Watch Dr. Ben Lynch talk about Folic Acid?

  • 400mcg should be sufficient for most people

  • I am doing the same (being treated for uat and self-injecting b12) but I'm not sure I can offer any wisdom really.

    Would your doc offer you a trial of t3? I take a little t3 and it makes a big difference. I don't have an obvious conversion problem so I'm not sure why it helps so much but a lot of my physical symptoms improved w the addition of only 10mcg.

  • That's exactly what I was prescribed and took myself of it as I was getting weird symptom which now I realise were B12 deficiency. What time of day do u take it? I might try it again depending g on results next week . How often do u inject?

    I can't really talk to the dr as she doesn't know I'm self injecting in between my monthly. Yes I'll stick to the 400 mg in the B complex.

    Thank you everyone x

  • I did a loading dose of b12 and then monthly injections but now I'm trying fortnightly as I feel rough and am trying anything in an effort to improve.

    I take my t3 in the morning w my levo. I set my alarm to take it at least an hour before I get up.

    Just a thought, if you were prescribed t3 and stopped it, is it possible you've gone very hypo? 10mcg t3 is roughly equivalent to 30-50 levo, so if you stop taking it you're on a lot less medicine than you are meant to have.

  • Well I stopped it in July while on 125 levo and my levels have gradually changed after 2 tests. So yes I never thought of it like that. But the weird thing is I was only on 100 levo a year ago and my levels were fine, t4 sitting at 20. Now it's 11!! I have raised antibodies now so wondering if that's the problem but the Drs aren't concerned about that 🤔

  • That's not uncommon. Levels can fluctuate. Some people find they need more levo in the winter. If ADs are high you may have a flare going on.

    If your t4 is 11 you have to wonder how low your t3 has gone. That can make you feel very rough indeed.

  • I feel rough as ever. You make sense. Yes exactly, my endo said he'd like t4 at 20 to feel good, I suppose he means then converting to t3. I feel angry, tired and tearful, my legs ache too. People don't realise how rubbish it is , thank u :)

  • Well if it helps that all sounds like you are currently suffering because you're no longer taking the correct amount of meds.

    Doctors who say stuff like this (that your t4 should be high in range to feel good) are like gold dust, most just go by tsh. Why not tell your doc what has been going on, return to your usual dose of meds incl t3 and give it a few weeks and see how you feel when both your thyroid and b12 are a bit more robust?

    How long were you on t3 before you stopped it? In all likelihood your t4 will drop and will never be near 20 once you start taking t3 but it won't matter much because the t3 will be supplemented separately.

  • Hi I was on t3 for 9 months, before I went on it my Tsh was good and t4 was 20! over Christmas 2015 I went very hypo as he reduced my levo to 50, through the new year into spring I stayed on t3 and 125 levo ,I'll try it though thank u :)

  • In what way do you feel rough? It's so hard when u have both conditions deciding what it what !

  • Mainly just very very tired, brain-foggy, generally symptomatic and I seem to get every bug going (had a fluey virus in Nov and then again in Dec). I was undertreated for a while last year but back on a higher dose now, last blood tests looked pretty good so should be fine.

  • Yes, and Coeliac as well. Have you been tested for that? That affects absorption of thyroid meds and Vitamins and affects fertility.Only the upper bowel test biopsy is accurate. Blood tests can be wrong. I also have Adrenal Insufficiency which is the 9 am cortisol test. Are you seeing an Endo? Only endos can help Adrenal Insufficiency. You need a day Synacthen Test... it's a fatal disease and rapidly so if you are not treated in time. CFS is just a waste bin diagnosis...sorry. You need a proper dr.

  • I'm having the 9 am test Tuesday and she put coeliac on the form too, she is very keen to help . I know what u mean re CFS, I'm already on antidepressants from post natal depression. That was 2 years ago, I will ask to be referred depending on results.

    What is day synacthen test? :)

  • Synacthen Test is for Adrenal Insufficiency. They test baseline cortisol and ACTH, and inject and then test an hour later to see if your adrenals are working or not. The blood test for cortisol is a guide only. The ADSHG has the best info on this.

  • Will it show on the 9am? Then they follow up with that? My poor 4 year old daughter was telling me she'll look after me 😥 it shouldn't be like this. I want to be up dressed and functioning before she gets up. It never happens. So frustrating x

  • The 9am may indicate it but it is a guess. The only accurate test is the Synacthen Test which is the next stage and an Endo .

  • I looked up Addison in the end and, UAT is common with it! Mmm!! I do get stressed easily, god knows why I don't work, well I'm a mummy and have lots to do at home with all the animals we have!! I'm a perfectionist and they are notorious for being stress heads 😊 that's me lol

  • What is UAT ? ADSHG has the best info and help if you look that up. Try to rest up. And see what Tuesday brings..

  • Under active thyroid . Yep! My MIL has agreed to have my little girl tomorrow and gonna get early night zzzzzzz thank u for today x

  • Remember the blood test for Coeliac is not 100% accurate. You need the upper bowel biopsy even if blood test is normal and you have symptoms - you need the biopsy.

  • Remember that Adrenal Insufficiency is a fatal and often rapidly fatal disease. Do not neglect this if it is suspected.

  • I simply feel dreadful today, out of breath just walking a few metres and pushing a wheel barrow, I'm crying and have no energy . I'm only 41 and I can't imagine this feeling for much longer, I'm so envious of other mums. Doing fitness classes.I'm so sad :(

  • You need to go to ER if you worsen. There are many reasons you could be Short of breath. But yes I did feel like this before my Adrenal Insufficiency / Addisons was dxed. Then within 30 mins I was into a coma.

  • Gosh really. That is serious . Are u better now? On medication ?

  • I have PA and Hashimoto's disease, recently learned my Ferritin levels had been dropping since 2012 but had not been treated until very low (12) despite treatment for both these illnesses, low iron was causing symptoms easily confused with both PA and Hashimoto's. Iron absorption can be affected by PA and I think Hashimoto's. Thyroid UK recommend a ferritin level of 90 to properly metabolize thyroxine, some symptoms definitely improved with medication for low ferritin, do you know what your level is or if your GP has checked this, mine ignored my falling levels for 4 years and I wasn't seeing test results myself.

  • My ferritin was 63 in October but I've been injecting since November so the possibility is that it has dropped, I tried F sulphate but it made me have head aches so I've been on Spatone for 2 wks, has yours risen now? What supplement are you taking? Thanks :)

  • My GP prescribed Ferrous Fumarate 210mg, I've been taking it for quite a few months and Ferritin level had risen to 50 in December. Waiting to hear result of blood test taken last week. Hope things get better for you soon.

  • Thank u, I'll be posting my blood results I'm sure! X

  • I've posted my results up thanks guys :)

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