B12 deficiency?: This is an important link by an... - Thyroid UK

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B12 deficiency?

shaws profile image
shawsAdministrator
15 Replies

This is an important link by an expert on B12 deficiences. I think, particularly if someone has Pernicious Anaemia, which should be optimally medicated, I also know, in UK an injection is every three months? Is this sufficient? I don't think so.

youtube.com/watch?v=xPpWHoQ...

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shaws
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15 Replies
Happysmile profile image
Happysmile

This is the first time I’ve seen discussion around B12 affects on muscle pain and spasm. As soon as I started alternate day injections, my years of muscle pain stopped. I couldn’t find an explanation for it anywhere. Thank you for sharing this.

BadHare profile image
BadHare

My effective sublingual B12 supplement Is vegan, as is my B complex, & the kefir I have daily would provide me with >800% RDA if I could absorb it! :-/

endomad profile image
endomad

My vitamin testing tuesday, iv left 2 weeks off all to check my levels and I can feel the difference and Im fairly sure its the B12 missing. Will start again right after test. I am deff more tired than usual.

Stourie profile image
Stourie in reply to endomad

To get a true B12 reading do you not have to be off supps for about 4 months. Please correct me if I'm wrong. Jo xx

endomad profile image
endomad in reply to Stourie

probably but as i supplement its just to give me an idea that i am in the right vicinity B12 wise x

colleenofminster profile image
colleenofminster

very interesting stuff but sadly in the UK unless you are lucky enough to be financially able to use private testing and healthcare finding out if you are B12 deficient or indeed other necessary testing is like seeking the holy grail. 😞

endomad profile image
endomad in reply to colleenofminster

My GP does annual B12, D, folate, ferritin, full bloods and female hormones. Plus the usual MOT bloods, diabetes markers cholesterol, urea, sodium & potassium. I am forceful but he is happy to do it on NHS.

colleenofminster profile image
colleenofminster in reply to endomad

Hi endomad. It could be the luck of the draw for what healthcare trust an individual comes under or you are fortunate in your GP. My GP practice refuses to do many tests that I have requested. From reading on this site and similar I believe that I am not alone in this problem. It's a frustrating fact of life for many of us but sadly somewhat to be expected I suppose with the demands now on the NHS. Different trusts prioritize their funding to different areas of healthcare.

endomad profile image
endomad in reply to colleenofminster

That is very true and definitely my experience 6 years ago, where i was treated like an annoying child and patronised every time, however once they realised they dropped the ball with me (they forgot my thyroid was removed and also believed once it was removed i would be fine with no replacement meds at all) nothing seems too much trouble now. My GP is unsure how to read female hormone tests so has them done for me to interpret, my vits B12, D, ferritin, folate etc were so low when finally tested 4 years ago, they test every year in case. The only thing left to sort out is my seriously low cortisol which my GP & endo know nothing about 2015 105 (150-550) last year 95 (150-550) i have endo appt today and this year will insist on a referral to someone who can handle this. Everything to do with thyroid seems and argument and i think many are just left untreated, under treated, left hanging with only half the info and many having to self treat, it is not a good state of affairs. x

shaws profile image
shawsAdministrator in reply to endomad

I have no idea why some doctors seem to be unaware that if the thyroid gland is removed that the patient needs more consideration and help to ensure that both FT4 and FT3 are at an optimum level for them to, at least, feel well with relief of symptoms. It is incredible that their training seems to miss many of the of the most common of conditions - especially amongst females. Also they may prescribe 'other' prescriptions for symptoms rather than the necessary, optimum, hormones.

colleenofminster profile image
colleenofminster in reply to endomad

My thyroid gland was not removed. However the point is still valid that we are often looked upon by our GP's as neurotic and or menopausal women (Men too minus menopausal obviously). In the words of one consultant who I saw regarding my hysterectomy when writing to my GP about me "she is a very difficult woman and will make a meal out of her hysterectomy". This was because I had insisted and harassed him for the operation for over a year as I had suffered with heavy painful periods since i was 11 years old (I had my operation at 41). I was very anaemic and had in that year alone had three hospital stay having blood transfusions for several days. Since my hysterectomy I became more unwell with chronic fatigue and pain with no explanation as to why. My weight shot up and nothing I did could stop it. My GP apparently was baffled. I saw an article on under active thyroid and realised my symptoms matched. My GP did a blood test my levels were "on the lower end of the range" apparently. I had no idea it this time about the range. My GP prescribed 25mcg of levothyroxine. Of course i did not improve. Because I was working and had the financial ability I sought help from a private specialist who was more.then willing to involve my GP and finally I had some acknowledgement. I think even back then around 15 years ago my GP was grateful for someone else to direct him on my treatment as he was under a lot of stress workwise. I believe years of severe anaemia has left me with several chronic conditions ie fibromyalgia and under active thyroid along with depression and anxiety. All of.these conditions put people, in the eyes of doctors, often under the "difficult/hypochondriac" label. I avoid my doctors surgery unless i really have no choice.

I'm sorry for going off the original point which was Yes the article was very interesting and I do wish that in the UK we all had the chance/opportunity to have proper blood tests and other tests done. I believe that in the long run the NHS spending that money on proper diagnoses in the beginning thus accessing correct treatment of the patient would save money compared to the time and treatments required when much further down the line they have a chronic multiple list of problems to treat (weight problems, depression, anxiety, stronger pain relief, inability to work anymore) the list goes on.

shaws profile image
shawsAdministrator in reply to colleenofminster

I also believe the following :

fibromyalgia and under active thyroid along with depression and anxiety.

are hypothyroid conditions, especially caused by low T3 in our bodies.

The link below is by one of our deceased Advisers who was also a scientist but resigned his licence so that he could treat people without interference. For Fibro and CFS he stated this was due to insufficient T3 in our cells. I have also read the 'new' disease were 'named' about ten years after the introduction of blood tests and levothyroxine. (CFS, Fibro and M.E.) Before that we were diagnosed upon symptoms alone and given a trial of NDT. If we improved we were hypo and stayed on NDT. If not they looked elsewhere

web.archive.org/web/2010103...

UrsaP profile image
UrsaP in reply to colleenofminster

I think you are right, I thought I had Fibro but most of Fibro type symptoms went when I stopped T4 for T3 only. I think T3 is vital for so much more than thyroid. Not rocket science when the thyroid affects just about everything.

colleenofminster profile image
colleenofminster

That was very interesting to read and how sad that 20 years on from his work not much has changed in attitudes from the medical world (in my experience anyway). Thank you for that link Shaw.

UrsaP profile image
UrsaP

There is a book by Sally M Pacholok, about B12, and her fight to get it recognised and treated properly. Called - Could it Be B12. It was made into a film of the same name and is available on YouTube to watch. Well worth watching, about her fight to get the seriousness of B12 deficiency recognised, to see all the things that B12 can cause. And highlights the dreadful attitude to the need for proper treatment.

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