I posted on here early January and got great advice. I've been back to my GP and now have the results of latest blood tests. Both myself and my Dr are flummoxed. She has mentioned M.E. as a possible explanation and would treat it with anti depressants. I still have the numb arms hands and legs, fatigue going up stairs, throat, glands up. all recurring for last four years.
The nurse did forget to do ferritin, but here are the rest of them:-
B12 - 591 - next injection late March.
Folate - 10.5
Haemoglobin 138
Thyroid T4 - 13.4 and TSH 1.5
Rheumatoid factor - negative
Sugars - 3.6
Kidney, Liver and Calcium all normal levels
CRP - up - 39 and ESR up 25 ( I do have a throat infection at mo)
They will repeat CRP and ESR in two weeks and do Ferritin then.
Really flummoxed - any suggs on what I do beyond the follow up blood test?
Thanks in advance.
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toby57
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All the latest guidelines for B 12 deficiency with neurological involvement indicate that you should be treated with B12 injections according to symptoms and not tests. At the very least, with neurological problems, the injections should be every two months in accordance with NICE guidelines below.
Your GP should also be aware of the recommendations in BCSH guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
Autoimmune thyroid problems, B12 and D deficiencies are usually interlinked (my sister was diagnosed with ME but it turned out to be severe B12 def. & we both have autoimmune thyroid disease). They impact on all the systems of the body, especially the thyroid - it is more than possible that adequate B12 treatment could see your thyroid becoming more normal. Here are some helpful links:
If you are not able to get more frequent injections, I would ask to see a specialist (haemotologist or neurologist) or, failing that, supplement in other ways, sublingual methylcobalamin sprays, tablets, or injecting yourself. This is what we have had to do as neurological damage is permanent if not treated urgently.
Thanks for all this advice, I will gently suggest that two months B12 is a NICE guideline. My doctor is adamant that I have plenty of B12 and felt going down the road of more injections was not required as I have plenty with a level of 591.
She is a great doctor, very pragmatic and tough to move off course.
Sorry Toby but your GP doesn't get it ! You have serious neurological symptoms (as does my sister (whose GP told her that her numb and tingling toes had nothing to do with B12 def ! ). These symptoms can be irreversible if not treated adequately and this is probably already what has happened to my sister, even though her test results were over 1000 with supplementation. The test result is not relevant and, in any case, here is more info from "The B12 Deficiency Survival Handbook", written by Dr Aqsa Ghazanfar, and "Could it be B12" that both have information on tests - an extract from the latter:
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
Numbness and pins and needles in feet, arms and legs are strong neurological symptoms of serious B12 deficiency and should be treated urgently. it might be worth just pointing out to GP the summary points of the latest research document Cmim BMJ- A.A. Hunt B12 :
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Please don't be fobbed off!
Hi toby57,
re: "CRP - up - 39 and ESR up 25 ( I do have a throat infection at mo)", how is your white blood cell count? Has Glandular fever been excluded? Do you have any other problems, gastric problems? All seems to imply inflammation and being negative for Rheumatoid factor does not exclude RA. But trying more frequent B12 injections is a simple safe and cheap thing to do, if at all possible.
The doctor did mention Glandular Fever, so I think the next bloods will check that. She is adamant that B12 is up and fine. Won't consider injections more than every three months. No gastric problems. thanks for your insights. Will check the other things on next blood tests.
What are your blood ranges for the FT4 and TSH, Toby57 ? (Thyroid bloods)
Usually your FT4 needs to be in the top half/top third/top quarter/top fifth of the FT4 blood range for you to feel well. Yours looks lowish, but I cannot see the blood ranges to compare the result with.
Many have been told by their Doctor they are OK or Normal due to their FT4 blood reading 'within range.' But many are still unwell and suffering when their FT4 is showing 'low' but still 'within the FT4 blood range.'
You mentioned antidepressants, go careful as antidepressants if there is a thyroid problem will make you fall further, there are video's on You tube showing you diagrams about why this happens.
T3 treatment is a fairly new treatment for depression, (not sure many Doctors will know of it,) it is also a thyroid treatment which works far quicker for some and will help if you do have depression and a thyroid problem.
Also ME, CFS, (Chronic Fatigue Syndrome,) and Fibromyalgia can all be down to an under treated' or not 'optimally treated' Thyroid.
Thanks for the info on antidepressants. I don't know what my FT4 is and the blood ranges. My doctor wouldn't give me a print out, but was happy for me to jot down the results. Only things I have for Thyroid are T4 - 13.4 and TSH 1.5. Should I request more blood tests for FT4 and info when I see her next? I'm due a further blood test for ferritin, glandular fever and repeat of CRP and ESR in two weeks. Not able to see doctor until two weeks later when she is back in work.
I am wary of antidepressant route so thanks for the advice re this.
Both my Hubby and Daughter's FT4 bloods were low (within range,) and they were feeling tired even after rest, Daughter brain fogged, (not depression, which can be mistaken,) Brain fog is where you cannot concentrate for long on one thing or forgetfulness, etc.,) Hubby also had muscle aches.
Unfortunately even though they were both ill and going down hill fast, they had no help from their Doctors as their Thyroid bloods were showing within range.
See the website STTM (Stop the Thyroid Madness.) Many are being left ill by their Doctors.
Also B12 Deficiency and Thyroid mimic each other.
We have since self treated hubby and daughter and both have lost their tiredness, are more energetic and Daughter no longer has Brain fog.
An idea might be to phone the receptionist at your Doctor surgery and say the Doctor gave you the blood results, but forgot to give you the blood ranges. You cannot read the bloods without the important blood ranges, Your Doctor must have known that, even they need the ranges to read them ???
We all have a right to our blood results and many patients regularly do that now, I do with all my family.
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