I've been floating around the thyroid board and someone suggested I pop over to this board for some advice. I've been feeling extremely tired for the last almost two years, at present I feel I can function but have had times when I've spent a week or so just on the sofa unable to do very much at all. Have also had symptoms of noticable hair loss, aches and pains all over my body, tingling hands/wrists/fingers and toes, bad headaches, stomach cramps and brain fog to name just a few.
I was recently diagnosed as anaemic and am now on ferrous sulphate 200mc x 2 daily and very recently advised to supplment Vit D, GP advised not deficient but low. I've had a long standing disagreement with my GP regarding my thyroid (this has fluctuated a lot and have TPO antibodies) but am now wondering whether my symptoms are all due to anaemia.
My last test results showed:
Serum ferrritin level 10ng/mL (13 - 150) -
TSH level 3.86 (0.25 0 5.0) previously this has been 6.5, 6.10 & 5.5
GP has dismissed pernicious anaemia due to current level of B12 but I understand that antibody tests should be taken for this to rule this out, is this right? Would really appreciate it if someone would have a quick glance at my results and advice if possible.
B12 deficiency is not an anaemia - but it sometimes produces the symptoms of anaemia.
B12 deficiency is a metabolic disorder which produces symptoms of neurologic disorder, some of which you have.
Pernicious anaemia is only a name attributed many decades ago when they thought the neurologic part of the illness was caused by anaemia rather than understanding, as they later learned, that the anaemia is a possible result of the metabolic disorder.
Hard to get your head round, I know, and even harder for you to believe that most doctors don't get it either.
You have high Red cell distribution width which can be indicative of b12 deficiency, and, since you are already being treated for an iron deficiency, then that can be ruled out.
Your neutrophils are heading toward the low end ie hypersegmented neutrophils which is another indication of b12 deficiency.
Your serum b12 tests come under the current 'normal' range which means, diddly. This is because the serum b12 test is not accurate.
take it to your GP and ask him for further tests in light of the information. He may well have seen it already, if he hasn't he should.
This tells doctors that b12 deficiency is not a blood disorder. It also explains that the serum b12 test is not reliable and gives them alternatives.
It may well be that your thyroid, or maybe something else, is the problem, but until you get b12 deficiency ruled out properly (preferably by trying effective treatment) then you can't move on to new ground.
Hi Ariesgerl ,
Firstly welcome here, anmd I am sorry to read you feel so unwell.
Your blood test results do show you are heading towards iron def anaemia, so good you are on iron tabs.
Hopefully that will make you feel a lot better in time!
If you are not supplementing with B12 then the best thing you could do is have the active B12 test, it is a good test to do if your serum B12 is not conclusive, see:
Patient SE, an 87 year old man, presented with shortness of breath and anaemia.
Hb was low, MCV was normal and TSH was elevated indicating hypothyroidism.
Total B12 level was 170pmol/L indicating sufficiency.
Normal RBC folate and serum folate indicated that Iron status was normal and the anaemia was presumed to be due to the hypothyroidism.
However, the Active-B12 concentration was only 4pmol/L indicating severe B12 deficiency.
Conclusion:
Although the Total B12 level was normal, the Active-B12 level was severely low showing that the patient was B12 deficient. Hypothyroidism patients can have this discrepancy between Total and Active B12 levels.
I see that your serum B12 is 323. In some countries this would be regarded as low (Gemany and Japan) But not in the U.K. This test is also unreliable. You need to have the ACTIVE B12 test (Spire Hospitals) called the Holocobalamin test,and also be tested for the antibody to the intrisic factor. Then you will know a whole lot more and be able to take it from there.
Unfortunately there isn't a definitive test for B12 deficiency - the Active B12 test is better than the serum B12 test but even so there are significant numbers of documented cases of clinical B12 deficiency even when Active B12 - let alone Serum B12 are in 'range'.
Guidance in the UK has changed over the last year as a result of this to be that you should treat on the basis of symptoms not test results
False normal B12 results and the risk of neurological damage
"In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
Interpret the results of the serum vitamin B12 test taking into account clinical symptoms and the following limitations:
The test measures total, not metabolically active, vitamin B12.
The levels are not easily correlated with clinical symptoms, although people with vitamin B12 levels of less than 75 picomol/L (approximately 100 nanograms/L) usually have clinical or metabolic evidence of vitamin B12 deficiency. In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L).
There is a large 'grey zone' between normal and abnormal levels and reference values (and units) may vary between laboratories.
Clinically significant vitamin B12 deficiency may be present even with vitamin B12 levels in the normal range, especially in elderly people.
Rare cases of false normal vitamin B12 results have been reported in the presence of high titres of anti-intrinsic factor antibody in people with megaloblastic anaemia or subacute combined degeneration of the cord. Therefore, the diagnosis of vitamin B12 deficiency should also include evaluation of the person's clinical state and other laboratory findings.
Testing for anti-intrinsic factor antibodies is therefore recommended in people with strong clinical features of B12 deficiency, such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal serum vitamin B12 level.
4. Effects of B12 deficiency: some other possibilities for diagnosis
B12 is used for cell replication, maintenance of nerve cells and, particularly in conjunction with folate (F9) to recycle some nasty products from other processes, eg MMA and homocysteine.
Because MMA and homocysteine will build up if the body doesn't have enough B12 high levels can be used to supplement B12 tests in the grey area in giving a diagnosis ... and by grey area we are talking about anything below 500
Because B12 is used for so many things there are a very wide range of symptoms and they don't occur in the same order - it is perfectly possible to have neuro and psychological symptoms without having deformed blood cells (and anaemia)
5. Causes of B12 deficiency
There are numerous potential causes including :
- Pernicious Anaemia (auto-immune response),
- lack of B12 in diet,
- changes in stomach acid levels(particularly as you get older - hence the reference to 'especially in elderly people' in 3 above, folate deficiency
- drug interactions (eg anti-acid treatments, metformin used to treat type 2 diabetes ....
Personally I'm not sure what the value is of looking for anti Intrinsic factor antibodies as this is only ruling out one possibility and the test is known to be really unreliable.
Reference to 'elderly' is unfortunate - it affects people of all ages but because it can take years and decades for a deficiency due to malabsorption to occur can creep up on people very slowly and be dismissed as just getting older. I might have been spared years of depression if GPs were more aware.
6. Supplementing - if you want a dignosis of B12 then don't supplement until after you have the diagnosis as it will affect levels in serum test and active test - though don't think it affects the anti-bodies tests.
For your results, the entry: "Red blood cell distribution width 15.9 (10.0 - 15.0) Above high reference limit", may indicate Macrocystic Anaemia (Large immature red blood cells), which also happens to be with what I was diagnosed. It is caused by a B12 deficiency because the immature blood cells do not divide correctly to produce mature red blood cells, which carry the oxygen to fuel your body.
Your B12, although it appears to be mid-range on the general scale, may be low for you. Here is the USA, some Diagnostic Laboratories add the following caveat to B12 results that are under 400. 10% of the population may exhibit neurological symptoms with reading under 400 pg/ml.
You have written that you have some neurological symptoms namely "aches and pains all over my body, tingling hands/wrists/fingers and toes, bad headaches, stomach cramps and brain fog" - I include stomach cramps due to the Vegas nerve which controls the stomach.
Have you been tested for heliobactor pylori infection in your stomach?
Have you have any stomach surgery in the past 20 years? It took 14 years after my stomach surgery to be diagnosed with B12 deficiency.
Also do you take antacid medications?
Also after diagnosis, I became Gluten intolerant. (Who knows which actually came first!) Have you looked into Gluten (breads) and/or Casein (milk) Protein issues?
I would highly recommend that you keep a diary or log book or your symptoms, your meds and food items, the time is the important item to record in order to sort out what causes a symptoms. Food items can take 24 hours to manifest as a symptom. For example, for your stomach aches, ask yourself what did you eat yesterday? Who can remember that? Hence the log book, especially if you are having brain fog.
Other symptoms recur following your medications. Knowing which symptoms are new from the recurring ones will help you sort out what works and what doesn't for you.
Also be aware that neurological symptoms take a long time to repair so be patient. Even as a prevention, take B12 supplements and keep on your Dr (show him/her your logbook) regarding your symptoms with the goal of getting B12 injections (frequently enough for you) to eliminate the problems.
Also be aware that the Dr's initial response will probably be to diagnose you with Anxiety disorder. Anti-depressant medication causes it's own symptoms and because it doesn't actually correct neurological damage, it can aggravate the situation. This happened to me and I ended up with Tinnitus as well.
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blood results Back after GF diet 
? Pernicious anaemia with normal B12 and no anaemia?
Pernicious Anaemia - Fibromyalgia 
mental health and pernicious anaemia
