Hi - I have just had my blood tests back from the Doctor. I have had the following symptoms for 5 years which have been deteriorating.
numbness tingling, pin and needles, cramp, twitching, muscle pain in arms and legs
calf pain and muscle tightness
low resistance to infections pneumonia last year
Shortness of breath palpitations - comes and goes over the year
Yeast infections
My B12 is 276, Ferratin 27 Folate 9.77
My heaomtricit is 0.386 slightly low , neutrophil 1.6 and creatinine raised at 82.
I have had tests for RA, Diabetes and PA. The Doctor says my B12 is fine within normal range and unlikely to be causing any of my symptoms. I am so frustrated as I can't find a solution to my problems but I feel my B12 and some other levels are low!
Any advice would be appreciated.
Written by
redberry989
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Definitely sounds like B12, what additional tests did the doctor do, and did you get copies? You can test negative for IF antibodies and still have PA, it only picks up 50% of cases. You can have B12 deficiency for many other reasons as well. Here is an explanation of better tests plus lots more info on the website:
If active B12 is <25 you are deficient, 25 - 70 is a grey area and they will automatically test MMA, >70 is replete.
You can have a functional B12 deficiency with normal serum B12 and normal active B12, for example with methylation cycle defects or transport defects. This type of deficiency can only really be picked up by MMA and homocysteine tests, or all the tests can be "normal", there is no gold standard. Pacholok & Stuart (Could It Be B12?) peg uMMA as the most sensitive test, but obviously it's cheaper to go down the St Thomas' active B12 route.
The best and cheapest test of whether or not you have a deficiency is a trial of B12 injections to see if you respond, Dr Chandy's treatment protocol might be useful in this regard:
Thank you for your reply. I asked for a second opinion with another GP at the surgery today. He feels that I am suffering from stress and anxiety and has suggested anti depressants. I have asked about a private referral and he has said no. He said I have had endless tests and they are all normal. I have had thyroid and antibodies but I don't have the levels for those.
I would like to try injections but I don't know if there is any way without my GPs referral. I live 4 hrs drive from London in Devon so I am quite remote to get to private clinics.
I am thinking of sending off for the active B12 test from blue horizon medicals to see if this can give me more information to go back to my Doctor.
You can post a sample for the active B12 test to St Thomas', it's cheaper than the Blue Horizon test and you benefit from the grey area MMA test (BH don't recognise a grey area).
If you'd prefer to just get a private test I would go straight for uMMA or serum MMA rather than Active B12.
You could try lobbying your doc for a trial of injections using Dr Chandy's protocol, or see this topic if you want to go it alone:
Would recommend joining the PAS or the Facebook page for support and advice if you're thinking of doing this. You can also contact Dr Chandy through the B12d.org charity.
And I would also request copies of all the test results you have had done so you can see for yourself what's been tested and what hasn't. It's amazing what can be missed or ignored.
• in reply to
Can you post up your other FBC results - particularly MCV, MCH, RDW, eosinophils. x
Thank you for all the information. I think I will try the private blood tests first, the cost is probably less than the humiliation of convincing my doctor I am not mad. I previously found Dr Chandys site and sent all the links to my Doctor in discussion with another Dr at the surgey they say there is no way I fall into this category,. I have tried very hard to convince them.
Hi these are my other results. The doctor did point out that my red blood cell count is fine and that I don't have any sign of anemia but I have read that folate or ferratin can interfere with the result?
white blood count 4.9 (4-10) range
red count 4.57 (3.8-5.5)
Haemoglobin 132 (120 - 150)
Haematrocit (0.38 (0.37 - 0.47)
MCV 84 (80.00 - 100.00)
rcdw 11.5%
eosinophil 0.2 ( 0 - 0.4)
basophil (0.1 (0-01)
platelet 359 (150 - 400)
serum alkaline phosphatase 30 (30 - 130) - just noticed this was quite low (bone profile)
sodium 137 (133-146)
potassium 4.8 (3.5 - 5.3)
creatinine 81 (44-80)
GFM (71 (60 - 150)
I had this done a few weeks ago and trying to analyse the lows and highs did lead me to the B12 idea as I had never even considered this before so really hoped it could be a link to all my problems.
Well, as you probably know you can have B12 def in the absence of anaemia, unfortunately most doctors are completely ignorant of this fact. It's well referenced in research though.
Also low iron can make FBC results appear normal. In fact your ferritin is quite low and that's reflected in bottom of the range MCV. You should supplement iron, try and get ferritin up to 70 or 80.
Have you had vit D tested, as well as calcium and phosphate?
(If you answer using the yellow reply button I'll get a notification email, thx :-))
Hi - yes bone profile were all higher end calcium 2.42. The only one that seemed odd is the alkaline phospatase as that is at the lowest point. I haven't had vit D tested. Just to mention also I am 43 with average height, weight at high end of ideal weight with a good diet which made me think of a possible absorption problem.
I would try and get vit D tested. Also minerals - some if not all of your symptoms can be attributable to things like magnesium, zinc and copper deficiencies. Just another angle to explore.
If your GP hasn't done a test for thyroid gland problems, ask for a full thyroid function test. Get a print-out of them but they must have the ranges for members to comment. Labs throughout the country differ.
Magnesium is great for alot of your symptoms especially twitching, muscle pain, . But you Ferritin is way low. My dr saids you should be around 70 range. Add in iron supplements or eat more iron riched foods. Did they not test free thyroid levels? One last thing have you had your adrenals checked?
My father-in-law is having very similar symptoms, his GP diagnosed peripheral neuropathy, May be worth asking your GP about this, because this is a thyroid forum we tend to focus on thyroid symptoms but the fact is that many symptoms of thyroid disorders are what are termed "non-specific" and the same list of symptoms can be common to many other disorders. Of course, once we are told we are hypothyroid we look up the symptoms and say "why has it taken so long to diagnose-I have all the symptoms?" but if we were told it was X or Y instead we could look out the exact same set of symptoms and wonder why it took so long to be diagnosed with that condition
I just thought I'd mention that my haemotcrit has dropped to 0.36 (range 0.37 - 0.47) I had another red blood count with my B12. Neutrophils have also dropped to 1.5 (1.5 - 4.00).
I was advised on the PA page to come over to thyroid as there is a lot of knowledge on blood results.
I looked up low heamotricit and this also points to anemia. Doc still says I'm fine no need to treat anemia
Hi redberry, can I just add that I've been chasing answers re: my fatigue and found that ferritin levels should be 70 or above. Apparently they have to be at 40 to stop hair loss and at 70 to grow new hair. In Australia anybody with a level under 70 gets an iron infusion. An article published in the May 2003 British Medical Journal showed that patients with low ferritin, but normal haemoglobin and haematocrit, have fatigue, that is reversed by iron treatment.
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