Hi everyone, I've been reading through various forums hoping to find an answer to my symptoms (aren't we all!) so given how kind and informed you all seem to be (from hard-won experience dealing with medics I'm guessing) I'm hoping you can offer me some guidance.
I've had many, many tests, but I'm hoping some of you may be able to express an opinion on things I should pursue (as getting anything out of my doc is impossible)
I don't have much of a blood test history, but here are the pertinent ones (I think):
(aug 17)
B12 183 ng/L range > 140
folate 15.1 ug/L range > 4.0
MCV (most recent Jan 18) 95 fL ramge 77 - 101 fL
Thyroid Jan 18
T3 4.4 range 3.8 - 6.00 pmol/L
Free T4 10.8 range 8.00- 18.00 pmol/L
TSH 4.243 mU/L range 0.34 to 5.60 mU/L
Apparently the thyroid test my rheumy did in February shows 'raised TSH' according to my spinal consultant but I don't have the details as I can't see the rheumy until May. Plus apparently my albumin and leukocytes were flagged up to.
A bit of background: I'll cut a very long story short(ish). Until 2 years ago I was incredibly fit and well, active job, studied part time, climbed mountains and hiked 20 odd miles most weekends. Only annoying health niggle was having to stop running with a mystery hip injury that wouldn't heal.
Then suddenly my toes started to burn, in both feet, out of the blue. within 3 weeks I had to stop working. had all the tests, steroid injections, orthotics... not real answers. Then the orthotics seemed to upset my hips, my back went (slipped disc discovered but spinal surgeon doesn't think its significant), I started to get really bad dizzy spells, low blood pressure, days here and there when the pain of everything was too much I could only rest completely.
Then my hands started to burn randomly throughout the day, sometimes with really bad aches up my arms too. Rheumatologist says its Raynauds (even though it can happen when they haven't been cold), although I have also developed a ridiculous sensitivity to the cold when I was always the one out in all weather in short sleeves.
My periods have gotten ridiculous - cycles ranging from 19 days to 39, despite normal FSH levels (so presumably not perimenopause) plus can be of any thing, up to 11 days, not to mention much more painful. And I'm now on my third coarse of ABX to try to get rid of a UTI.
I wouldn't say I was suffering from bad 'fog' or fatigue but I really really don't have the energy I used to (but I'm kind of scared to admit that in case it all just gets put down to CFS or fibro, which seems to be the way my rheumatologist is heading)
I also have spells where it feels like my whole body is vibrating inside, and spells when my hands shake badly. And some days the muscles in my legs feel over sensitive to bumping into things. My physio says my glutes are surprisingly weak too, given my hill climbing background.
All in all I'm a broken woman! I've had to quit work, and my volunteer position, and I'm still desperately trying to study for a science degree, but it is painfully slow progress.
If you've got to the end of this, thank you! You've got more patience than me!
Written by
Cghkent
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The Reference range there shows 200 – 800ng/L. and indicates you may have a deficiency. Of course different labs have different standards so it's confusing.
I cannot comment on the other test results as I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
GPs generally do not have sufficient knowledge of B12 deficiency and may have considered your B12 test normal or borderline but the fatigue, tremors, vibration and burning feet you have described could be neurological symptoms of B12 deficiency, especially as you may possibly have a thyroid problem developing, another autoimmune condition which often coexists with PA/B12def. (see BCSH guidelines in pinned posts at the r/h side of this forum).
As you can see from the latest BMJ research summary only below, (GP should be able to access full document behind a paywall), there is no gold standard test for B12def. and symptoms are paramount so your neurological symptoms should be treated with injections as per British National Formulary, "every other day until no further improvement", without delay as, the sooner you are treated, the quicker you will recover and avoid permanent damage:
"Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features.
Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features, and risk of cardiomyopathy. However, 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.4 13"
Page 3 "Neurological features
"Neurological impairment includes motor disturbances, sensory loss, abnormal balance and reflexes, cognitive impairment, and memory loss. Extreme cases may present with stupor or psychosis. An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible."
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Here is another link with more information and templates for writing to your GP. It would also be a good idea to take someone close with you for extra support at your next appointment to ensure your symptoms are treated seriously.
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