Hi, I posted a few weeks ago as have lots of symptoms which suggested thyroid problems so decided to have a blood test. I originally put this in posts, but really it's a question as to whether anyone thought B12 was a bit low ...
spoken to gp receptionist who said most have come back 'normal', but I needed an urgent appointment for a couple(but seemingly not thyroid related). When asked for figures she first said she didn't understand them as not medical, but after gave me a couple and seems they are within the norm?
T4 - 15
TSH - 1.58
the only other one I could get her to give me figure for was:
B12 - 245. Could this be a bit low?
The result I think I am having to make appointment for is cholesterol and Serum (something), I think she may have said folate.
So would seem I don't have a thyroid problem, which I know is good news, but means I am no closer to finding out what is wrong.
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Kaz12345
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You are right, your B12 is very low but as you are "in range" your doc will probably tell you you're "normal". Sounds like you have low folate as well, did you have iron and ferritin tested? If you did, these could be low or low normal as well.
Since your thyroid results look OK I think you should investigate Pernicious Anaemia / B12 deficiency. Contrary to what your doctor might say, you can have this disorder without any signs of macrocytic anaemia (enlarged red blood cells), and with a normal serum B12 result. The range is set way too low and the test is flawed anyway, as only a small proportion of serum B12 is in the active form. It also tells you nothing about what is going on at tissue level. If your low folate is treated by your doctor without addressing your low B12, this would actually correct any macrocytosis, whilst neuro damage from the low B12 continues untreated.
I would recommend you go here, do you have any of these symptoms?
If you think this might be your issue post again, I have lots of good links on PA. It is very important that you don't self supplement whilst you are trying to get a diagnosis, as this messes up any future blood tests.
What you need to do is get the reference ranges for your blood tests as each laboratory has slightly different ones. With the lab that does mine for instance TSH is something like 0.5 to 4.5 and T4 is 9 to 21.
If your lab ranges are something like these and you have symptoms then you could do with a medication increase. Your T4 wouldn't even be over half way in that reference range. Most people feel better when their T4 is in the upper part of the reference range and then the TSH is around 1 or lower.
If you need evidence to show your GP I suggest getting the booklet "Understanding Thyroid Disorders" by Dr Anthony Toft. It's produced in association with the British Medical Association.
It's a small booklet but the most useful bit is at the patients questions at the end where he answers a question about a patient wanting to take more T4 than their GP was advising.
Kaz, I got the impression from your question that you are not currently being treated for a thyroid condition? You mentioned getting the blood tests done for "symptoms which suggested thyroid problems". Hypo symptoms and PA symptoms are very similar.
Apologies if you are already on Levo or similar, as Totoro says ideal T4 and TSH levels are different when you are already being treated for hypothyroidism. However, it wouldn't change my comments regarding PA as the 2 conditions are closely linked.
Hi, thank you for your responses. hampster, you are correct, I am not being treated at the mo, I was considering I could be hyper. I have developed a bit of anxiety, bruise really easily, itchy skin, swollen tongue, reddened eyes, pulsatile tinnitus, I could go on.
Pernicious Anaemia and folate deficiency sound very possible given your list of symptoms. If you have a read of the "My Story" section on the PAS forum, you will see lots of cases like yours (you can read it without being a member, but you need to join to post). Link here:
Stomach problems are common in PA, but we tend to put up with them for years before seeking medical help, I know I did. Associated stomach issues are atrophic gastritis, H Pylori infection, low stomach acid etc. The sore swollen tongue is called glossitis - you can get this with B12, folate or iron anaemia. Anxiety is very common - from what I've read people with PA are often diagnosed with depression before they get the correct diagnosis. And tinnitus is mentioned a lot, although I personally didn't have it!
The Patient UK articles on B12 and folate deficiency are here:
Hi H, thanks again. very useful information. I am waiting for stool sample test results and then will make appointment. Am sure he won't be concerned about the B12, as its in normal range, so will have to see. I may be coming back as to where to go next! Appears folate is 5.2, so that is 'normal', but have high homocysteine levels, and on quickly researching this understand this can be corrected somewhat with B vits, so sounds as if B12 could help me. If I get nowhere with gp, as I suspect that will be the end of it, I will pay for the active b12 test kit. Would supplementation with B12 tablets be useful after that or should I seek out another doctor (apologies, I am not sure what specialism of doc I may need to see). thank you again.
It's not called "the forgotton disease" for nothing! Finding a doctor who understands PA is like winning the lottery. It also crosses over lots of different specialists, the most commonly seen are neuros and gastros. And they are often clueless as well! With your IBS type symptoms you could ask your GP to refer you to a gastro, they can test for the things I mentioned previously - gastritis, H-Pylori, etc. and they can do the gastric antibody tests. Also Coeliac disease needs to be discounted.
You don't give the range, but your folate looks too low to me. A better test is red cell folate. You already know you have high homocysteine, this is a red flag for B12/folate deficiency. I'm curious, why did your GP test homocysteine?
If you live anywhere near London it might be worth getting your GP to refer you to St Thomas. There are 3 tests that give you the best indication of B12 deficiency, they are Active B12, MMA and homocysteine. This is a good explanation here:
You can phone or email St Thomas (number in the previous link I posted for Active B12 test), I hear they're very helpful.
I would exhaust all avenues before self supplementing, just my opinion but I think we should be properly diagnosed and treated for our ailments. B12 treatment is usually lifelong, a costly undertaking if you are never properly diagnosed, but I accept the only option for some people.
Thanks again H. Not sure why he tested for homocysteine. I will ask for a copy of tests when I go. receptionists just say Im not medical so can't read it, or, it's normal. I do have kidney disease, so should also look into if poss B12 deficiency, high homocysteine is related, but GP didn't seem to think my 'symptoms' were kidney related, as I mentioned, I was thinking poss hyperthyroid. I did have acne when young and took isotretinoin for a couple of months only, but in one of your links I read thus could also affect B12 and folate (although this was many years ago).
Thanks again for taking the time to respond, you've been really helpful.
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