Undiagnosed advice and thoughts

Undiagnosed advice and thoughts


Recently joined the thyroid page , due to UAT , my levels are good. Decided to get a private blood test as we would like another baby but my thyroid antibodies are raised and I have symptoms. Want to be healthy for TTC.

Anyway I was adviced on the thyroid page to get this panel of tests done.

I have fatigue , dizzy when standing, headaches and eye pain, and just a general fuzzy feeling, put things in the fridge that I shouldn't! U get the gist !

Please tAke a look.

Thank u in advance 😊

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26 Replies

  • You have Hashimotos disease, ie autoimmune thyroiditis. Your TSH and t4 look good, the T3 is lower than it should be for you to feel well, but drs will not treat you yet.

    many if not most of your symptoms will be due to your low B12, it is needed for thyroid function as well as much else.

    It is quite common to have autoimmune gastritis as well as Hashis.

    Are you vegan or vegetarian, ie, is your diet v low in b12?

    The experts on b12 here will comment, but they will also suggest you read the pinned posts on the page.

  • I was diagnosed with Hashimotos back in 2005. High anti- bodies - however the TSH FT4 FT3 were all in range. So I was started on Levo/T4.

    My Greek GP said it was to support the thyroid whilst under attack ! Guess if I was still in the UK I would have remained undiagnosed and untreated - sleeping 4 hours after lunch - whilst they stick rigidly to the TSH results 😢

    Being gluten free can help to heal the gut if yours is sensitive and so reduce anti-bodies.

    Hope all goes well ......

  • Thanks Marz , been gluten free now for nearly 2 weeks, going ok. Once I've sorted b 12 think I'll try adding back my t3 or adding a little levo.. like u say the drs aren't great here st looking at bigger picture. What are your anti bodies and what are they now?

  • Back in 2005 when I was diagnosed in Crete they were in the 1000's. They remained high for years. Went GF almost 4 years ago and they are now around the 300 mark. I also have Crohns - hence no Terminal Ileum for over 40 years. I now live with what I now realise/think is B12 damage ....

  • I eat really well lots of fish eggs cheese, fruits salad and veg.

    Yes I've read bits and bobs , sometimes it's nice to here from people who have been through and come out.

    I went to my doctor yesterday and he was not interested in the antibodies , and wants to re test b12. He couldn't say whether I need Injections and says my tiredness isn't Thyroid or b12 related . Someone pretending to be a doctor maybe.!!! I've read it's the top symptom... what do we know hey!!

    Thank u 😊

  • sounds like a typical GP - referral to a specialist may not be any better - he's probably looking at IFA test in relation to B12 but please be aware that a negative result doesn't rule out the possibility of the cause being B12 as the test produces false negatives about 50% of the time.

    He's probably thinking that the tiredness has to be caused by anaemic effects of B12 and you aren't showing any actual abnormality in your blood cells ... There are a lot of processes in the body that use B12 - including the ones that release energy in muscles - so could be that totally independently of anaemia.

  • Excuse the intrusion Gambit62 I am wondering if you could explain the connection with B12 and muscles.

    I am away on a City Break in Vienna celebrating my Birthday. The walking is so painful and all my leg muscles feel as if I have run a marathon. This happens with any walk over say an hour and has worsened in the last couple of years

    I wear a back belt - wear Vionic shoes and today used my Flipstick - a pink one - for the first time. Wow that was amazing as I felt so stable but still left with badly behaving muscles. They barely recover overnight.

    I take Magnesium capsules but forgot my Spray Oil. Had a B12 injection 9 days ago and am taking the 5000 B12 lozenge daily.

    Thanks for reading ....

  • hi - probably couldn't get back to the reference but it appears that it is involved somehow in mediating the ATP to ADP process (adenosine tri-phosphate to adenosine di-phosphate process) which is used to release energy in muscles - remember looking at it many, many years ago when I was at school - must have been about 12 at the time! certainly didn't have any mention of B12 at that because it was purely about changing ATP to ADP but the process has always stuck with me which was why reading about B12 having a role in the last few months sticks in my memory - it's there as a process that goes on in the background rather than being directly involved - sorry but definitely not a biochemist.

    Know that my back muscles were a lot weaker when I was B12 deficient and have seen others with similar experience.

    Really sorry to hear that the aches and pains are impacting on your holiday and hope they aren't impinging too much on your birthday celebrations.

  • Thank you so much. Will read up when I return home and see if there is anything I can do. Always good to learn new things.

    Having a great time in spite of .....

  • Yes, so frustrating that GPs often think it is all about anaemia and totally fail to realise just how many systems are affected by B12 deficiency. The body is just so amazingly complex and finely balanced.

  • So true ! I am also a Hashi's gal with Crohns. Had back surgery too and still have a Spondylolithesis - so there is a lot going on ! Only joined up the dots re B12 in the last few years and still so much to learn when the brain allows.

    Thank you .....

  • The dephosphorylation of ATP is the body's means of providing energy at the point of need for just about everything in the body. So if a B12 deficiency did interfere with that process then it would affect huge numbers of biochemical reactions.

    Could explain why such a deficiency has wide-ranging effects on the body.

    I must investigate further.

    Damn. I wish I'd kept my biochemistry books (although they're probably all out of date now).

  • would really like to know what you come up with

  • Hi fbirder, Gambit62, Marz and Ndobbins. I also suffer with the exactly the same muscle problems described by Marz, and getting slowly worse over time. Will watch out for any information that pops up on the forum.

    And a big thank you to anybody who looks...and I'll try looking too 😀

  • Not sure whether it helps but this paper on FM/ME/B12 connection makes interesting reading Marz, and may throw light on muscle pain generally, though perhaps not while on holiday in Vienna!

    (page 14)


    "The basis of such tenderness was once revealed by electrophysiological experiments when succeeding pain stimuli evoked a sensitization of neurons in the dorsal horn of the spinal cord, which suggested an involvement of the NMDA (N-methyl-D-aspartate) receptor [14]. This may be of special interest because NMDA receptor dysfunction can be related to homocysteine and its metabolite (see Question 5). Moreover, there appears to be a growing body of evidence supporting the role for central sensitization also in ME [15]."

    I hope the pain doesn't spoil your break and you have a great time.

  • Thanks Polaris

    Will wait until I am on the PC 😊

  • Thanks for posting this Polaris ...saving for a 'treat' read tomorrow.

    Take care x

  • Sorry, hadn't realised you are on 125 levo already.

  • Not going to comment on thyroid as it really isn't something I know much about at all but on the B12

    The serum B12 test is one where you really can't go by the numbers - it tells you about the amount in your blood but gives no pointers as to what is going on at the cell level. People vary a lot in how they respond to B12 and whilst some people would be fine at the level you have others really are extremely ill ... and it does sound as if you are in that category. The thing that really counts with B12 is the symptoms


    there is a huge overlap with thyroid symptoms which is likely to be one problem dealing with GP but given what others are saying about hashis they might be more willing to listen - but it is likely you will need to get lots of materials to support you - so go through the pinned posts.

    Doubly important that you get B12 sorted out if you are planning to have a child - studies show that low B12 can impact on fertility, but more importantly a lot of B12 will be needed by the foetus.

    Your folate level is quite high - guessing that you may be supplementing. That isn't a problem but it is a circumstance in which macrocytosis from B12 deficiency can be masked ... though personally I think the tendency to focus on this as an indicator of B12 deficiency is ill advised - about 30% of people present first with neurological symptoms - which could include the balance problems you mention - long before anaemia starts but delaying treatment can lead to permanent nerve damage.

    Not trying to alarm you - just trying to give you some ammo to throw at GP in arguing that you need treatment.

    as aspmama says - deficiency can be dietary - caused by lack of B12 in diet because you eat next to no meat/dairy/fish. However, this is quite rare and an absorption problem is much more likely. Most B12 is absorbed in the ileum and there are various things that can cause problems and stop this working - most common is PA in the true sense - an autoimmune response - particularly likely if you have hashimotos by virtue of the fact that auto-immune diseases tend to occur in clusters. Normally large amounts of B12 are stored in the liver and released for reabsorption back into the ileum but if the ileum isn't absorbing the B12 then most of it is just going to pass straight through your gut and your reserves are going to deplete - so it can take a very long time for an absorption problem to actually become a deficiency - years or even decades - depending on how bad the absorption problem is.

    Generally an absorption problem means that you will need life-long treatment with a way of getting B12 into you that doesn't involve the ileum - and the standard treatment is injections.

  • Thank u :)

    I did marry up the raised antibodies and the b12 issue too. Seems strange both have cropped up in this last 6 months . No Im not suplimenting folate . I do eat really healthy which leads me more to PA. blood test Tuesday so go from there. While I was pregnant with my daughter I was so healthy, none of these issues. 6 months after till now just gone down hill.. we won't try for number 2 until sorted which is why I'm finding as much out as possible.. plus I'm to tired !! Ones enough ATM .

    You have helped a lot thank u X

  • "While I was pregnant with my daughter I was so healthy, none of these issues. 6 months after till now just gone down hill."

    Did you have gas and air as pain relief during birth? Gas and air contains nitrous oxide. Nitrous oxide can inactivate b12. See link below


    There is also a chapter in the book "Could it be b12" by Sally Pacholok and Jj, Stuart that mentions the effect of nitrous oxide on b12.

    Other causes of B12 deficiency




    Have you looked at lists of b12 deficiency symptoms?


    pernicious-anaemia-society.... click on Symptoms checklist

    My understanding is that in UK people who are symptomatic for b12 deficiency should be treated even if b12 levels are within normal range.

    Google "BCSH Cobalamin and Folate Guidelines" .It was published in 2014.

    Page 29 is a diagnosis flowchart that shows the recommended process UK doctors should follow with someone who might be b12 deficient. It mentions when to order an IFA (Intrinsic Factor antibody) test and also amkes it clear that it is still possibelt o ahve PA with a negative IFA test.....Antibody Negative PA.

    Page 8 gives details of UK B12 treatment. if you have B12 deficiency with neuros ymptoms teh treatment shoudl be more intensive. I say shoudl be becuase so amny on thsi froum with b12 deficiency ahve a real fight

    It's possible that your GP is unaware of this document and may be following local NHS B12 deficiency guidelines instead. I gave my Gps a copy of teh BCSH Cobalamin Guidelines. Some of these local NHS B12 guidelines have not been updated for several years.

    A recent BMJ B12 article

    bmj.com/content/349/bmj.g5226 See 5th summary point.

    Lots of useful B12 info in pinned posts on forum. I found the summary of mainly UK B12 documents fbirder compiled helpful. Link to summary in third pinned post or on his profile page.

    UK B12 websites

    PAS (Pernicious Anaemia Society)


    PAS tel no 01656 769 717

    Do you have any blood relatives with PA? pernicious-anaemia-society....




    B12 books

    As well as "Could it be B12" by sally pacholok and JJ. Stuart

    I found Martyn Hooper's latest book helpful and gave a copy to my GPs. its up to date with current UK guidelines

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    I have had many years of trying to get doctors to consider the possibility that my problems were due to B12 deficiency. B12 deficiency does not seem to be well understood by some GPs and consultants. I would suggest you try to read as much as you can about b12.

    Other blood tests


    I can't see results for a full blood count (FBC) on your results sheet. A Full Blood Count may have useful clues as to whether or not b12 deficiency or folate deficiency may be an issue. High MCV and high MCH on the FBC can indicate the possibility of macrocytosis (enlarged red blood cells).




    Sadly sometimes having one auto-immune condition increases the chances of having another. I'm surprised you haven't had an IFA test.

    Copies of blood test results

    I learnt to always do this as sometimes results I was told were normal were not normal on the copies. I track results over a period of years. Have you had b12 tests in the past? I assume you would have had B12 tested while you were pregnant. You should be able to get copies of these or may be able to view them online.


    Another thing I would do if I had someone willing, is to take someone with me to appts where I was likely to query GPs decisions as long as they were supportive, well-informed about b12 and willing to speak up for me.

    I am not a medic just a person who has struggled to geta diagnosis.

  • Tested for coeliac last year and was fine, but my b12 was over 500 last year! I'll check my blood tests, yes paid to have all them since 2013.. I'm determined to get through to him. Miserable dr too...! Or I'll change

    What is IFA test? :)

  • Intrinsic factor anti-body - antibodies to one part of the mechanism used in the ileum to absorb B12 - there is another antibody test - attacks Gastric Parietal Cells - which some still do but the BCSH doesn't recommend as it is so prone to be inaccurate - and think that can be inaccurate both ways - false positives and false negatives.

  • "Tested for coeliac last year and was fine"

    Hope your GP is aware that it is possible to still be Coeliac even if Coeliac antibody test is negative. People who are IgA (an immunoglobulin) deficient will not make coeliac antibodies. See link below for more info.



  • I just wanted to say a massive thank you for all this information, it's a lot to take in but I feel more confident now,thank u so much for your advice and support xx

  • Have you ever had a test for Coeliac disease? It can affect the gut and lead to deficiency in some nutrients eg b12.


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