Thoroughly confused about B12

[Catleighcat]

Hi all

I would be very grateful for some help please.

I am diagnosed with severe Fibromyalgia (diagnosed by a consultant Rheumatologist), Chronic Fatigue Syndrome, an underactive thyroid and severe depression and anxiety. Over the last few months I have been feeling even more unwell. I felt so bad, and to be honest have lost so much faith in the NHS, that a couple of months ago I paid for a private blood test. When I got the results they were -

Vitamin B12 195 pmol/L

Serum Folate 5.91 nmol/L

Ferritin 291 ug/L

TSH 1.21 miu/L

My GP prescribed Folic Acid tablets 5mg once per day which I have been taking for 2 months. I had a repeat blood test today. Results were -

Serum B12 201 ng/L

Serum folate level 17.2 ug/L

Serum ferritin level 206 ug/L

TSH 1.11 miu/L

The GP has reviewed my results and says no further action is needed. He only gave me 2 months worth of the Folic Acid tablets and has not said whether I need to keep taking them.

The thing is, I still feel really unwell. I am in a lot of pain (tissue, muscle and bone pain), am experiencing numbness/pins and needles in my hands and feet, am exceptionally tired all the time, irritable and depressed and my short term memory is not great. My sleep is very poor (has been for over 20 years) but even after sleep I never feel refreshed, in fact I wake up with numb hands and feeling like I drunk a bottle of whiskey the night before. The worst thing in the pain in my bones. Not just my joints but right in my bones. The pain is a deep throbbing that just radiates out from the middle.

I've felt so unwell for such a long period of time that I despair. I just dont know where, if anywhere, I go from here. I dont know about others but the doctors just seem to be willing to label every symptom as being Fibromyalgia and seem reluctant to consider other possible causes. I feel stuck and miserable and would appreciate any advice others might be able to give please. Im sorry for the long post - thank you so much for reading

Best wishes

Claire

[clivealive Forum Support]

Hi Catleighcat do I take it that despite your neurological symptoms your doctor is not treating your low B12 levels?

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Catleighcat in reply to clivealive]

Thank you very much for thie I joined the B12 Wake Up group on Facebook and they have said the same. I have written to my doctor and am awaiting his response. Thank you for taking the time to help me - I really appreciate it.

[cdragin]

I'm in the US so not dealing with NIH, but when I was first tested my level was 211; since the cutoff for deficiency (in that office...it seems to vary wildly) was 210, my doctor tested my MMA, homocysteine, and IF antibodies and lo and behold, I had PA, and started on injections immediately. I was lucky in that my GP was aware that people can by symptomatic even at the low end of "normal". It seems that at 195 they should be testing you further.

[Marz]

Way back in 2000 I was diagnosed with Fibro and struggled after years of illness/surgeries. I retired to Crete in 2004 & was diagnosed with Hashimotos in 2005. My journey to wellness has been about being optimally treated for the thyroid - B12 - VitD and other important supplements.

Like so many poorly people your thyroid test is inadequate and tells you very little. TSH - FT4 - FT3 & Thyroid anti - bodies also need testing TPO & Tg. Sadly the NHS rarely do all the tests. Are you able to have tests done privately through Thyroid UK ? There is a Thyroid UK Forum here on HU where you will be made most welcome.

Raised Ferritin may suggest inflammation as in Hashimotos. I have Hashimotos and a B12 issue ....

[Catleighcat in reply to Marz]

Thank you so much for this. When I was first diagnosed with an underactive thyroid I was given Levothyroxine and told it would make a significant difference. It never has but the GP insists my levels are fine. Like many, I have had to fight just to get this far and I get very anxious about challenging the doctors. They clearly dont like it even when done in a polite and respectful way. Im 42 years old in September and never ever imagined that life would be like this

[Marz in reply to Catleighcat]

Yes - if I had a dollar for every time a Doc says results are fine - I would indeed be a very rich woman Have you managed to pop over to Thyroid UK here on HU ? - over 80,000 plus people - many of whom are struggling just like you. Lots of well informed members who are able to help and support you with great knowledge. I have been on the Forum for almost 7 years and have gained so much knowledge. You can click onto my Username and in a couple of minutes you can read my journey

You do not have to challenge your Docs - you can have finger prick testing done in the comfort of your own home - results by e-mail. At least that way you will discover the complete story and can start to build from there .... see link below.

thyroiduk.org.uk/tuk/testin...

The above link takes you to the Private Testing companies and Medichecks have Special Offers on Thursdays - so just in time. 1000's use the facility due to the inadequate testing protocol within the NHS - keeping people unwell.

I retired to Crete in 2004 and was diagnosed with Hashimotos in 2005 and so my journey to wellness began - after endless surgeries for Gut TB - Crohns and more ! I am now hurtling towards 72 and teach yoga twice a week - swim miles in the summer - and generally enjoy a life free from illness. Of course like so many I do have the odd day when things are not so good.

You are legally entitled to have all your copies of blood test results so you can monitor your OWN health and see what has been missed .... Here we keep all our own records and results and can go to anyone with them ... Did you know you can Sign Up with your surgery so you can view your results on-line ?

Happy to help