Another B12 question

My b12 result was 241 my vit D was 33 my dr has written no action on my results

I feel awful joint pain ,aching all over very anxious

I had TT nearly five years ago and on 100 thyroxine my tsh is 0.01 so he won t give me a rise In medication .don t know how to approach him about my b12 and vit d last time he told me vit d was being over egged in the press.

I believe he thinks all my symptoms are in my head! My anxiety is now preventing me from doing things I feel since I had my TT (due to multi modular goitre) I have aged so much

Any thoughts greatly appreciated

Piedo

9 Replies

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  • Piedo Your GP wont do anything because they are 'in range' but they are very low, but not low enough to be classed as deficient, which is 30nmol/L in the UK.

    NICE guidelines cks.nice.org.uk/vitamin-d-d...

    However, at 33 you come within the Insufficient range mentioned in the guidelines. This will be responsible for your joint aches and pains.

    You will probably have to supplement yourself, and that is a good thing because you will most likely get a better quality supplement.

    I would suggest you buy some D3 softgels 5000iu (Doctors Best are good) and take 10,000iu daily for 6-8 weeks then reduce to 5000iu daily. Retest in the Spring and if you've reached the recommended level of 100-150nmol/L reduce again to 5000iu alternate days as a maintenance dose. It's recommended to retest once or twice a year when supplementing.

    When taking D3 we also need it's important co-factors which you can read about here - vitamindcouncil.org/about-v...

    Vit D aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth rather than arteries and soft tissues. As D3 and K2 are fat soluble they should be taken with the fattiest meal of the day. Keep D3 away from thyroid meds by 4 hours. Healthy Origins K2-MK7 is a good one.

    Magnesium comes in different forms, check to see which is most suitable for you and as it's calming it's best taken in the evening

    naturalnews.com/046401_magn...

    Your B12 is very low at 241. Anything under 500 can cause neurological problems. Recommended level is very top of range, even 900-1000. Was folate tested? They work together and if folate is very low you would be best taking advice from the Pernicious Anaemia Society forum here on Health Unlocked and you might find that they suggest being tested for Pernicious Anaemia by your GP.

    healthunlocked.com/pasoc

    If your folate is not too low then you could supplement your B12 with Solgar or Jarrows methylcobalamin sublsingual lozenges 5000mcg daily and when the bottle is finished (60 nuggests if Solgar) change to 1000mcg daily as a maintenance dose. When taking B12 we need a B Complex to balance the B vits. Thorne Basic B is a good one.

    But I would suggest getting a folate test (or result if alread done) and taking advice from the PA Society first if that is low as well as the B12. Don't take any supplements for either before any testing or taking advice.

  • And remember folate is best tested fasting.

  • Seaside Susie

    Thank you so much for your detailed reply

    I have started taking d3 supplement but it is only 10mcg

    Plus I have started a b12 1000ug spray plus vit B complex tablets

    My son has sourced me a years supply of t3 but I m frightened to self medicate my dr keeps on about AF if I have too much thyroxine

    I've been trying to get an appointment with my dr for three weeks

    But I know he will offer me antidepressants for my anxiety which I don t want if I can help it

    Since I ve had my TT I have only seen encrinologist once when I asked for a raise in throxine she gave me a lecture about heart damage if I had too much and that was it.

    I have seen rheumatologist about my joints she was nice but ruled out rheumatoid arthritis ( which my sister has) )

    Just feel really fed up the thought of being like this for rest of my life

    Piedo

  • Piedo As your GP wrote 'No action required', I assume you bought the D3 yourself. 10mcg is 400iu and wouldn't help a sunburnt flea. 3 months ago you wrote a thread asking for suggestions about dosage for those Vit D and B12 levels. I replied with the same information given here so I don't understand why you didn't take note of the suggestions given then. No way are you going to raise your D3 level with 400iu so your joint aches and pains will just continue.

  • Seaside suspect

    Thank you for your reply I did note yourrecommendations three months ago but suppose I thought the aches and pains would go away on normal dosage I tried to get sublingual B12 from my local health shop and Holland and Barrett's but they didn t have 5000 dosage so I decided on 1000 spray

    Vit d I have started doubling the dose

    I suppose it's all about confidence to self medicate I was brought up in generation that doctors know best it's not until you have a chronic condition that you realise they don t

    I have always carried on as that is what I was brought up to do .my sister is a doctor but even she doesn't t understand the problems that thyroid patients go through

    I apologise if I have annoyed you by not acting on your advice last time!

    Piedo

  • It's not my place to get annoyed Piedo , those of us that offer suggestions are doing just that - suggesting. It's up to the other member whether they follow those suggestions, ignore them or do their own research (always a good idea).

    The link to the NICE guidelines shows what doctors should do.

    The Vit D Council recommends a level of 100-150nmol/L or 40-60ng/nl. Your level of 33nmol/L is 13.2ng/ml. They have charts which show how much you need to supplement to reach a given level based on your current level. From the charts you'll see your level is 'Between 10-20ng/ml' and to reach 40ng/ml you need to take 3200iu daily, to reach 50ng/nl you need to take 4900iu daily and to reach 60ng/ml you need to supplement 7000iu daily.

    vitamindcouncil.org/i-teste...

    So doubling your Vit D from 400 to 800iu daily isn't going to help you.

    And take note of the important co-factors. As mentioned, Vit D aids absorption of calcium and K2 directs that calcium to bones and teeth where it is needed, rather than arteries and soft tissues where it can get deposited and cause calcification of the arteries, kidney stones, etc.

    It's not a good idea to use Holland & Barrett own brand, or any supermarket own brand or even Boots. They use cheap ingredients, often the wrong form, so are cheap for a reason. Decent brands with good bioavailability are the ones to go for, which I've given above, and are available on the internet. Most you can get from Amazon but you can do price comparisons to get the best deal.

    Check your B12 spray to see if it contains Methylcobalamin. Don't use Cyanocobalamin

    naturalnews.com/032766_cyan...

    It's up to you whether you take the advice about testing folate and if it's low, along with your B12, to take further advice from the Pernicious Anaemia forum

  • Piedo you have my commiserations in that you have had your thyroid gland removed and only given levothyroxine. I don't know how you are coping and have since your op 5 years ago.

    Forget blood tests, it is how we feel that is the priority.At the very least he should have offered some T3 to a reduced T4. You can always try to source some T3 yourself but you would have to ask for a private message be sent to you as we don't put details on the open forum. They are too fixated on the TSH instead of how the patient is improving or not.

    I am not medically qualified but could not get well on levo alone but felt an improvement with the addition of some T3. One of our Advisers and his team have had a Research Paper accepted which shows that some people have to have T3 along with T4.

    You also need your B12 to be towards 1,000 and the Vit D high as well. These two are pro-hormones and are also necessary to be at an optimum level. B12 to avoid dementia/alzeimers as well as all other things in our body. Vit D as well for bones etc.

  • I just want to mention that the form of B12 needed for each individual is different - I have tested my DNA (spit) with 23andme (you can do this through FTDNA and Ancestry DNA) and then downloaded my raw data to Livewello website - I found that Methylcobalamin is not the correct form for me and would give me further anxiety as my detox and methylation cycles would not deal with the byproducts/toxins produced. This is of course very individual - I can only tolerate the adenosyl and hydoxy forms. Also low dose trace element Lithium helps to transport the B12 to the cells. I use products from Dr Amy Yasko's HoliticHeal website.

  • since you had a TT you need a rather more relaxed and sympathetic doctor

    if the TT was for Graves then he needs to realise that Graves patients bodies are so sensitised to such high levels of thyroid hormone they simply cannot ever be managed on "normal " levels

    they must only be managed on symptoms and free t4 and free t3 at or even over the top of their ranges TSH simply cannot be used to manage things

    Also TT patients tend to do far better on NDT because its natural and contains t1 t2 t3 t4 and calcitonin

    It was dear Prof Lant who explained the above when he was treating my husband who had gone through hell with undiagnosed hypo well into myxodeama madness for 6 yrs after a TT for Graves

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