Still don't feel quite right

Since I complained to the doctor I didn't feel right I have had my dosage upped by 50 mcg and my tsh has gone from 4.07 to 0.012 (0.35-5.5)

But my ft 4 has only changed from 14.6 to 15.5 (10-22.7)

And my ft3 is 4.6 which hasn't changed at all (3.5-6.5)

I am at a loss where to go with it all everytime I see the doctor I see a different one I explain my symptoms and they all say why would you think it was your thyroid.

Er because when I felt fine they weren't there.

I have been going to the docs for 1year now about tingling in my face so far I have had a link to an course for anxiety and this time I was prescribed voltarol.

I can't face going back just to e fobbed off I need to do something but have no idea what I should be asking the doctor for,as it seems unless you know the problem you can't rely on them to diagnose it.

24 Replies

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  • Have you had everything else checked, such as Vit B12 and D levels, iron, ferritin, folate and others that those more knowledgeable than me will tell you? I think tingling can also be a symptom of low B12.

  • I agree with rosetrees. B12 deficiency can cause tingling and nerve pain. It can also cause your TSH to be lower than is representative of your T4 and T3 levels. It is definitely worth looking into. If you are not taking a B12, you might benefit from taking at least 1000mcg methylcobalamin. I currently take 5000mcg as I was fairly sure I had a deficiency (high MCV in blood tests). It has helped a lot.

    Iron is also extremely important for your cells to use the thyroid hormones. If you haven't already, please get the tests that rosetrees suggested.

    I hope you find the answers soon!

    Carolyn x

  • Thank you ladies my b12 is a bit of a contentious issue it was 226 this time last year which the doctor said was fine I was advised on here to take a supplement which I did but forgot to stop taking it before my next test and the doctor freaked out at how high it was and got me to do it 2 weeks later when it was 352.

    Had stopped taking supplement when it was next tested and it was 634 so not sure how good the b12 test is as it went from 352 to 634 without me supplementing and I don't really eat a lot of red meat.

    Sorry Carolyn what is high MCV?

    The tingling is worse when I'm stressed.

    I will get those tests done x

  • The B12 test isn't that great but is an indication of whether to supplement. There is a private active B12 test you can get that is much more accurate.

    It is interesting that the tingling is worse when you are stressed. I wonder if you have a cortisol problem. That can also cause a lower TSH than is representative of your actual thyroid function.

    MCV is mean corpuscular volume. It is the average size of your red blood cells. If they are too large, it can be because of too little B12 or folic acid. You may have had this done with your haemaglobin and full blood count.

    I hope you get somewhere with this!

  • My range lower limit was 145 and that is not far below your lowest reading. What range do they use for you?

    In any case freaking out on it being high is odd when they ignore a low reading which is much more detrimental. I don't know that B12 is a problem when high- it can cause problems in growth of existing cancers, I've read.

    Also, for these vits, regular testing is needed so why don't Docs care more about your needs [& less about being censured by managers,stopped by Lab 'guidelines' or even sued-whatever] and do treatment and tests with some chance of improving you?

    The whole NHS culture is wonky!

  • Can I just add to the comments by saying that B12 deficiency / Pernicious Anaemia is not just a small side consequence of a thyroid condition. It is a serious autoimmune medical condition in it's own right that is massively under-diagnosed and under-treated. There are many people on this forum who have some level of success with self supplementing high dose sublingual B12, but this does not work for everyone. The standard treatment for PA is IM injections of B12 for life, with varying frequency depending on how good or bad your doctor is. All my answers on this forum are about this, and I really really wish people would try and get properly diagnosed before they start self supplementing. Sorry for the rant, I do have a thyroid condition. But the PA came first by at least 6 years, maybe 10. And I respect anyone who self treats because their doctor won't listen, or because it works for them.

    So if you would like to discount PA as a possible reason for your symptoms, you need to stop any supplements for at least 1 month (maybe 2) and seek out the following tests:

    Active B12 / MMA / Homocysteine (available at St Thomas' in London, need a referral letter from GP and have to pay for the tests, link to this on the Thyroid UK main website).

    Antibody tests:

    Anti-intrinsic factor (highly specific, positive = PA, negative means you might still have it)

    Anti-parietal cells (Positive is not automatically diagnostic of PA, but something like 90% of PA sufferers test positive).

    Lots more info on B12d.org and pernicious-anaemia-society.org

    In answer to your question about the range and the serum B12 test, it is very unreliable and the range is set too low. Once you are on any sort of replacement B12 high levels are irrelevant. If you have a very high level of B12 prior to any treatments or supplements, other serious medical conditions must be discounted, info on that is here:

    ncbi.nlm.nih.gov/pubmed/234...

    However your initial level of 200ish is indicative of a deficiency if you go by the likes of Dr Chandy at B12d.org and Sally Pacholok/Jeffery Stuart in the book Could It Be B12? Your doctors reaction to your levels increasing with supplementation is depressingly typical and demonstrates how little they understand about this disorder.

    Sorry Thyroid UK, I'll stop now.

    Hampster

  • Too right! Pernicious anaemia is an awful condition! Please don't apologise. As PA isn't our area, we appreciate input like yours to educate us all in these matters :)

    Some hypothyroid patients, however, just have a deficiency due to low stomach acid causing absorption issues. I suppose if they got better quickly (like me - my MCV improved very quickly too) on taking B12, it is unlikely to be PA but if they don't it should definitely be checked out. Thanks for highlighting the relevant tests and research to help :)

    I am assuming that the B12 test just measures what is in the blood and not what's getting into the cells. Is this correct? My GP refused to test B12 let alone do the tests for PA. What should people do then (assuming the don't have the option for seeing another GP for whatever reason)? Does patient experience suggest the literature you linked to helps persuade GPs to do the test? If so, I'll try again with the GP (changing shortly - hopefully this one will be better anyway :) )

    Thanks again for your input on this. I don't pretend to understand everything about this condition so response is greatly appreciated.

    Carolyn x

  • That should say "your response". Admin functions are flaky again so can't edit :(

  • Hi Carolyn, thank you, I sometimes feel like a mad person, must be the hormone/vit/mineral imbalances ;-) And I have learned a great deal from this site about everything really! I try not to be too myopic but it goes that way some days.

    As you say, low stomach acid is the co factor between thyroid patients and PA. Does this ever get better in Hashi's and Graves? I suspect not, I suspect we will always have issues absorbing our key vits and minerals. I can't even say if I have been properly diagnosed, because I'm negative for IF antibodies, and doctors seem to have been taught that that is all they look for, even though it only has a 50% hit rate. I do have parietal cell antibodies which attack my parietal cells. Parietal cells make IF, so if I'm not making any IF, why would I have any IF antibodies? It is a difficult conundrum for doctors and patients.

    They other common thing on this forum are people on other drugs that deplete B12 or interfere with absorption, the main ones around here being PPI's and metformin. There are many others. Not to mention those people who have had surgery on their thyroids using nitrous oxide based anaesthetic, which literally inactivates all the B12 in your body.

    If you've read any of my other posts you may know that I was treated 6 years ago, but halfheartedly, and wasn't offered maintenance jabs for life, or at all. When I developed Graves last year my B12 was low normal. My symptoms accelerated this year, my Endo did the MMA test and antibody tests for me privately, and my B12 treatment was reinstated. I take supplements inbetween jabs and they do prop me up, but the jabs have the biggest effect.

    In answer to your questions, high MCV is a big giveaway of B12/folate deficiency, but neuro symptoms can be present with no blood changes whatsoever, as in my case. Haematological changes are actually believed to be a late stage of the disease.

    As you say, serum B12 blood levels are no indication of what's happening at tissue level. MMA and homocysteine are better indicators for this. Also, only about 20% of serum B12 is in the active form, the rest travels around doing nothing.

    Finding a GP that understands the diagnosis and treatment of B12d is quite literally like winning the lottery. The only thing you can do is educate yourself and try and educate your doctor. Many are willing to listen, but others are not, even within the same GP practice. I really don't know the answer, it's extra impossible when you feel so ill, as many people do.

    You might already know that there is a petition on PA with the Scottish Government at the moment, some people print this out and post it to their GP. Let me know if you'd like the link, it's been lodged by the PAS and is under consideration.

    H x

  • Please do post the link. Can it still be signed?

    I did have neurological symptoms too and probably have permanent peripheral nerve damage in my toes. At least my fingers work properly now!

    I had a high MCV for years and the GP said it was nothing to worry about because my haemoglobin was fine! I found out about a high MCV myself, which is not good, but was then told they wouldn't test B12 because I'm not vegetarian! I was shocked and decided to treat myself with sublingual methylcobalamin. It seems to have worked but I bet injections would be better. I was even referred to a neurologist who suspected my nerve problems were because of an old neck injury and the problems with my lower spine. I disagree because they have mostly resolved since dealing with the B12.

    This is such a complicated subject and seems to get a similar degree of care from doctors as thyroid disease :( I need to do some serious reading around this subject! I have joined the PA forum on HU but there doesn't seem to be a great deal of activity, probably because it is so under-diagnosed! I also didn't realise the test was so unreliable! It's like the lyme disease test :(

    I will try and remember to mention PA as a possible issue as well as the low stomach acid thing. If I forget, feel free to pick me up on it :)

  • You can almost forgive a GP, but it's so depressing when the so-called specialists are also clueless. If the sublinguals work for you then you may as well stick with them. I just tend to worry about people that can't afford to commit to a lifetime of financing their own B12 treatment, these things aren't that cheap. It's worth taking a B-complex as well, and extra folic acid if low on folate.

    The HU forum is quiet, I think most people are over on the PAS forum. You can read the PAS forum without joining, you don't have to post anything.

    If you haven't already done so you must read "Could It Be B12?". You'll see B12d in about 50% of the people you know after that!!! To add to all the people you are sure have a thyroid condition!!!

    The petition is here:

    scottish.parliament.uk/Gett...

    And the response:

    scottish.parliament.uk/parli ... 3&mode=pdf (starts halfway down page 227 - print pages 1 and 8-11)

  • Many thanks :)

  • Hi Hampster,

    I have been reading your posts about B12/PA and find them really helpful, I am having pins and needles in lips hands and feet and have stopped supplementing in view of doing a private test as you mention, (all symptoms coming back now).

    Can I ask if you think/know your PA caused your thyroid problem or vicaversa ?

  • The burning question! I have a maternal family history of autoimmune thyroid disease and PA, of which I've only recently found out. So could just be genes. Although if my PA had been treated properly, maybe the Graves would have stayed away...or maybe not.

    So so sorry VanessaB for hijacking your question! Hopefully it's useful info to you too.

  • Hampster - I'm so glad you posted this and I agree with you 100%. I just replied to a post from someone who says they have been taking folic acid for over a week to help the tingling and it hasn't worked. I pointed her to PAS and suggested she get tested for B12 and warned that folic acid can mask the tests for B12 while the nerve damage can continue.

    My sister was an inpatient in a 'world class' pain clinic. One of the first symptoms she went to the doctor with was a strange nerve type back pain and pins and needles. This pain clinic tested folates and she was very low so they prescribed and she was on them for over a year. It wasn't until I managed to get copies of all her records and joined PAS that I found older B12 results and they were right at the bottom of the normal range. Her red cell distribution width or was it MCV? was way over range and then I found intrinsic factor antibodies positive!

    Those test results were completely ignored. I could not get a soul to take any notice of this and all they would say was it doesn't show in her results now so it must be ok and she didn't need treatment. Of course it wouldn't show - masked by the long term use of folic acid. It makes my blood boil. I arranged a course of B12 infusions privately and she had two which helped with some of her symptoms. But she has trust issues and because everything did not resolve quickly she would not continue.

    I think the treatment and diagnosis of B12/PA is even worse than we get for thyroid conditions and the ignorance of the medical profession is staggering. God only knows how many deaths are caused by this - I doubt it would even be recognised.

  • Totally agree, your sister's case is shocking but mindbogglingly typical. Every day someone new posts their story on PAS, and it is always incredulous what people have been through.

    H x

  • I supplement with sublingual B12 as I'm demi veg 25 years [small amount of fish a week] and am low normal serum B12.My Folate was over the top limit -so I figured some B12 won't hurt for now.

    I read that it's hard to overdose on it anyway. 1000ug daily is not uncommon though the RDA looks out of kilter due to low absorption [IF,as known]

    The main danger seems to be taking Folic Acid, which then can mask PA - but, on advice here, I checked my HCV results as well as Density/vol. to see if OK and on the lower side, at least.

    It's good that people on here have pet subjects and can stay on the case-that is at least a 'constant' that counteracts the other constant- 'lack of awareness' in GPs -about far too many issues.

    I hope some read here -and blush on occasion!

    [Not that I would like to be one in the current climate]

  • Hi Tegz,

    I think that you can't get too much as it is a water soluble vitamin and excess will be excreted in urine. Some people can be sensitive to the added ingredients, i.e. fillers and flavourings. I take 5000mcg daily and get the jabs (every 2 weeks at present, stretching it out slowly, and I'm still standing)! Start-up symptoms are also common, i.e. when your body finally gets the B12 it needs you often feel worse before you feel better. Often people will stop treatment because of this, which is a shame.

  • I gather that the body stores about 6 years usage worth of Vit B12, optimally.

    It's so important that a store is kept topped up -but when low it takes a while to build back up.

    Small changes in diet are thus accomodated but long term shortfall ,as in Veggie Diet if not attended to, can be hidden in low normal numbers on testing.[Yes- that old problem-Japan min. for age >60yrs = 500]

    The other thing to note on starting B12 is that all the B vits need each other- I think B6 is a lead item for B12 takeup.

    It's better known now, that the Methylcolbamin is the better B12 to use for effectiveness.

    Blood tests are not the whole picture -but they help in checking progress.

    Good that B12 is not a problem on supplementing, overmuch.

    I think, like folate, it can be a problem in fast growing tissue -like in tumours etc, if existing.

  • I've not come across that evidence in relation to B12 (I've seen the folate stuff)? Would be interested if you have a link to it. I've read that they're actually testing very high doses as cancer treatment, it's mentioned in this extract from the B12d.org website, subsection entitled "Is B12 Safe?"

    b12d.org/book/export/html/1762

    Would be very interested to see that research paper when/if it's published.

    Regarding the body stores of B12, that's a much debated issue over on the PAS forum. Depending on your reasons for having a deficiency in the first place, you might not actually be able to access these stores. If your insides are working as they should be and you have a pure dietary deficiency then, yes, topping up your body stores might be enough. However, if the pathway is broken, as in autoimmune PA or other genetic defects of transport, then we don't know if those body stores can actually be utilised. This is discussed here if you are interested:

    pernicious-anaemia-society....

  • I think the actual evidence on B12 aiding cancer is mostly anecdotal.

    This report of a Professor commenting on the general case seems to illustrate this view:

    pernicious-anaemia-society....

    My suspicion was when posting was that as Folate is closely involved with B12 uptake and known to connect with polyp growth then B12 would not be far out of the picture, on a bad day.

    I do take heart from the B12 being safe overview but err on the side of caution with regard to oversupplementation of any product without adequate monitoring.

    Normally, the effect seems to be to make the body lazy and give up the effort- like with thyroid meds and other hormones. Vit C cessation can have a rebound effect even to the point of scurvy, [worst case] I've read a while back -which I did find surprising at the time..

  • Thanks tegz, an interesting link. Just wish there was an easy way of knowing what just the right amount is, versus too little or too much. Sigh.

  • My broad approach is to take the advice I read this site that if Blood Haema: MC Vol, Concentration and level = low and thus no hints of megoblastic anaemia present then a fair wind holds good for not making things worse.

    This entails having these in depth results already to hand.

    No certainty that one hasn't got a 'nasty' lurking on the 'growths' front- but B12 is so important [and also generally low] that ,on average, some supplementing can do good esp. in cases of UAT and under its treatment.

    My intention is to take up to 1000ug daily; sub lingual [or tablet] for a month or two- and then get another blood test to see result.

  • And I'll just keep going on how I feel/symptoms, given that I had neither haemo changes nor below range serum B12 to begin with.

    And if I have to keep logging on to this site every time I want to post something, and search for half an hour for posts I've made and responses, I might just explode in a ball of flames before any cancer or lack of B12 can get me!!!

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