PINS AND NEEDLES

[OAT1]

Hi there, 6 weeks ago I got diagnosed with over active thyroid. I saw an Endo on Friday and I told her that at the same time as my thyroid symptoms started I also got pins and needles in mainly my right arm but occasionally on my feet. She has told me that the pins and needles are nothing to do with my thyroid. I have my B12 blood test of which I am 383 which is within the normal range. I will go and see my gp next week but has anyone else had the same?

[Gambit62 Administrator]

Unfortunately many GPs are unaware that people can be highly symptomatic of B12 deficiency with levels well into the normal range. ie your experience is far from being unusual

You may find the following useful:

alert on not using B12 serum levels as only diagnositc tool - symptoms count as much if not more

ukneqas-haematinics.org.uk/...

BCSH guidelines

bcshguidelines.com/document...

see summary p2 and treatment regime on p9

People vary a lot in how much B12 they need and how they respond to B12 - so much so that 'normal' which is based on statistical averages - is problematic as a measure. GPs need to treat individuals as individuals not on the basis of artificially constructed average people.

[OAT1 in reply to Gambit62]

Thanks for that. Going to the doctors next week and see what they say. Do you have to go to a neurologist to get diagnosed with B12 deficiency? Also what are the other symptoms that go with being B12 deficient?

[Gambit62 Administrator in reply to OAT1]

you can find symptoms here

pernicious-anaemia-society....

they are very varied and cover a load of specialisms - including neurology, psychaitarty and haematology. Unfortunately specialists are just as prone to be unaware of the range of symptoms of b12 as GPs.

NIVE guidelines focus on haematology in trying to get to the bottom of the reason for the deficiency but personally I don't think that is very helpful.

Suggest you go back to GP with list of symptoms and the guidelines above and see if that is enough to get them to trial B12 for you - if not then post again and take it from there. It may be that your GP is one that isn't closed off to treating you on clinical symptoms rather than numbers.

[matty220]

383 is in what they call the 'grey area'.

Mine was 284 so still apparently 'normal'. I persuaded my doc to give me B12 tablets but he prescribed 50mcg and it was cyanocobalamin, so not high enough and not the best kind.

I decided, after reading lots of info on here and posting questions, to get some 5000mcg methylcobalamin, sublingual and after 8/10 weeks my B12 was 1600 and the pins and needles had gone and lots of other symptoms as well. I feel 10 years younger!! I'm going to maintain on 1000mcg per day for a while.

Give it a go, they're not expensive and sometimes you have to take your own health into your own hands. Doctors are governed by the big Pharmas and they only think in terms of Levothyroxine

[OAT1]

That's great info thank you. Can you get hold of that easily?

[clivealive Forum Support]

Hi OAT1

I'm not a medically qualified person but the following two extracts might help you "identify yourself" within them.

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

On page 11 in the same book talking about the Serum Vitamin B12 Test it says:-

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission

I wish you well for the future.

[OAT1 in reply to clivealive]

Hi Clive alive thank you so much . This forum has been a real eye opener for me. I'm going to the doctors tomorrow and see what they say. I will definitely buy the book.

Thanks