I'm debating different courses of action following recent blood tests, and would very much appreciate your experienced input, if you can spare the time, as to the best one.
I've had a range of symptoms (summary below), some for over a decade, but no abnormalities in blood & reflex investigations, so GPs have insisted that it must be psychological.
After receiving cognitive behavioural therapy, I stopped asking GPs to help me, & have been working on improving diet & fitness. But I'm still in constant excruciating pain & very tired each day. Concentration is all over the place & I’m forgetting words & how to spell, which is a problem because I earn my living by writing.
My most recent blood tests [22.02.17, FBC + thyroid function, requested because Mum was diagnosed with underactive thyroid & wanted to check mine is ok] showed:
Ferritin 158 ug/L [10 - 291ug/L]
Haemoglobin 140 g/L [115 - 165g/L]
Serum free T4 level 15.4 pmol/L [10 - 22pmol/L]
Serum TSH level 3.3 mU/L [0.1 - 4mU/L]
MCHC 332 g/L [320 - 360g/L]
MCV 97.7 fL [76 - 100fL]
MCH 32.4 pg [27 - 32pg]
So, all but MCH "in range". Both MCV & MCH have been right at the top of range for every FBC I have on record, and a trend line through the results shows them increasing. So I googled them, and consequently learnt about B12 deficiency on the NHS, PAS & British Journal of Haematology websites, along with some forum anecdotes from sufferers.
It felt rather like fireworks going off, because the descriptions of B12 deficiency very accurately match what I've been experiencing. [In the forum anecdotes, right down to odd little details like my right little finger being permanently numb, and not getting immunity from my measles vaccinations].
So I went back to GP.
She said would be v surprised if it's B12 because haemoglobin's ok, & got a bit miffed when I mentioned that BJH said symptoms more important than blood tests, but sent me for B12 & folate tests anyway.
These have come back today:
Serum B12 372 ng/L [180 - 910ng/L]
Serum folate 9.1 ug/L [> 5.4ug/L]
So, well within range, and the note says "no action required". The BJH best practice flowchart on here onlinelibrary.wiley.com/doi... has me outside the reference range for another b12 check in a couple of months.
But several reliable sources online [ie., peer reviewed & not trying to sell me supplements or a book] say that <400ng/L can still cause symptoms.
My questions for you:
1) I've found sources online that say the serum B12 test should've been a fasting blood test, but I was told at the surgery that I didn't need to fast. Which is correct?
2) with your experience of UK GPs, would you recommend I either
hold off supplementation and asking for another b12 serum test in 1-2 months [NB: I feel pretty desperate because of the pain] and
supplement with sublingual high dosage just to see if it makes any difference to the symptoms, then returning to GP if it does, saying "look 'ere missus", and asking for more tests/injections
ask my nurse friend to teach me to inject, buying ampoules from Germany & seeing if that makes any difference
accept that I’m barking up the wrong tree with b12?
I am very fed up indeed with being in pain and unable to concentrate on work, and it’s very embarrassing/disheartening to keep asking the NHS for investigations when nothing looks abnormal to them; it's fair enough, since there’s nothing in their guidelines to say they should keep looking, based on tests so far. So it's deeply tempting to stop asking them, and self-treat. I suspect they'd prefer if I did that, too!
However, I don’t know what I’m doing re dosage, interactions, contraindications, what else I need to take with it, and how long I should treat before giving it up as a red herring. Self-treatment would also all be off-record - not ideal if anything goes wrong in the future. If it does work, it won't help other people who approaches the GP with similar symptoms. If it doesn’t, I’m back to square one, with a lot less money in the bank.
Thank you very much.
[Summary of all main symptoms, regardless of what they might mean!
Constant: muscle & joint pain, burning sensation (particularly feet to mid thigh, hands to mid bicep, spine & neck; pins & needles (feet, hands, face, tip of nose); muscle spasms (thighs, back, face); weakness (esp arms & hands - carrying plates is a problem); exhaustion; breathlessness; confusion, forgetfulness (intent, names, words, what the hell I was saying mid-sentence); poor concentration; dermatitis; back-to-back ENT & chest infections; trouble tasting/smelling; thinning hair; trouble losing weight (I manage 5 miles total gentle walking a week, so may just be more calories in than out). Frequent: tinnitus & whooshing sounds; palpitations & audible heartbeat; headaches & migraines; blurring vision, lights in vision; dizziness & unsteadiness (esp when going down stairs, dressing); diarrhoea & sudden urgency, bowel pain (lower left - has been ultrasounded with nothing untoward seen). History of depression, now well managed via CBT & meditation. ]