Diagnosis

[Sinclair12]

In July I was feeling unwell with extreme fatigue, dizziness, pins & needles, breathlessness & palpitations. Blood tests showed B12 137 n190 - 660 folate 3.7 n 3.9 - 26.8

24 hour ECG showed first degree heart block. I had to wait 3 months to have B12 rechecked & IF antibodies checked.

In October the B12 was 171 & IF not done because GPC was negative folate was 5.9. I was asked to go for another B12 blood test & went within the next week which showed B12 206 & folate 3.7.

GP says my B12 is normal now so I should take oral supplements probably for life. I still have many symptoms even with a level of 206 - smooth tongue that feels swollen, mouth ulcers, short term memory problems, pins & needles around my mouth & cheeks & difficulty walking

In 2013 I had two blood tests that showed B12 171 & 179 normal range at that time was 246 - 911 folate was 4.2 with n. 5.4 - 20 but I was never offered any treatment. To be fair at that time I didn’t realise the seriousness of the long term low levels.

I also have had positive Rheumatoid Factor in 2009 & 1995 & have been diagnosed with rheumatoid arthritis osteoarthritis carpel tunnel, raynauds syndrome & IBS over the years.

What should I do? I was very low in my mood in July & the GP wanted me to take antidepressants. I didn’t take them but when I complained of being exhausted today the GP suggested I take the antidepressant prescribed in July. I think she thinks I am a hypochondriac.

Is it normal for levels to swing within a week? Do you think I should start the oral supplements or antidepressants. I am already on hydroxychloraquine for my arthritis & low dose amitriptyline for fatigue I have been on those drugs for many years!

Also could first degree heart block be caused by long term low B12 levels? I am due to see a cardiologist on 16th of December about this finding.

[Gambit62 Administrator]

sorry you are having such a struggle with something that sounds particularly stupid.

This is just a quick response

The serum B12 test is only accurate to within 20% - so the variations in the tests are unlikely to mean anything.

Serum B12 also has a huge range and people tend to maintain levels at a particular point in that range - so false logic to say you are okay because most people are okay at those levels.

B12 deficiency can cause cardio-vascular issues - it's used in a lot of processes that go on in cells including some that will result in high homocysteine and high cholesterol levels if your cells don't have enough B12 for processes to run effectively.

[Sinclair12 in reply to Gambit62]

Interesting because I also have high cholesterol 6.4 it’s been over 6 for several years & I don’t seem to be able to get it down with diet.

Do you think I should discuss my concerns about low B12 levels with the cardiologist may be he may have more understanding?

My other thought was to pay for a private MMA test but worried about going back to tell GP if it comes back high! Would she even understand the significance?

[Gambit62 Administrator in reply to Sinclair12]

you could discuss with cardiologist but there's a high probability they won't know much if anything about B12.

suggest you try with the guidelines that fbirder posted

[fbirder]

These are the guidelines used by Hull and East Yorkshire. hey.nhs.uk/wp/wp-content/up...

They have a treatment routine for people like you, whose B12 is intermediate but have symptoms of a deficiency (the right-hand arm of Figure 1). Their guidelines say that you should be started on a course of injections and be tested for Intrinsic Factor antibodies. If you test positive for the antibodies or if your symptoms improve then you stay on injections for life.

Print it out. Send it to your doctor in a letter asking why they cannot use the same reasoning in your case.

[Sinclair12 in reply to fbirder]

Thank you so much that is really helpful. I will print that & send it to the GP.

[Sinclair12 in reply to Sinclair12]

Another question if my GPC is negative I assume my IF would be negative too because the lab wouldn’t test it? I assume that wouldn’t change?

[fbirder in reply to Sinclair12]

If the GPC antibody test gives a negative result then it means that you very likely don't have PA. But that doesn't mean that you definitely don't have it. Or that you don't have a B12 deficiency caused by something else.

[Sinclair12 in reply to fbirder]

Ok thank you

[greenlord in reply to fbirder]

Hi, dont hold your breath with the Hull and East Yorkshire guidelines, i am in this area and first went to gp with what i now know are classic b12 def. symptoms, with neuro ones as well. Initial bloods was told by GP B12 was just in deficient range, but was sent for more blood test as GP thought may be problem with thyroid. Next results thyroid ok and B12 up out of deficient range. (Had started oral spray)

5 months on and still off work not even a mention of B12 thearpy from Gp.

[Sinclair12 in reply to greenlord]

Did the oral spray make any difference to your symptoms? I have to say I am worried that if I start oral supplements & it doesn’t help there is no chance of me ever getting a diagnosis.

It’s all so frustrating I hate going to see my GP she doesn’t want to listen & makes me feel stupid.

[greenlord in reply to Sinclair12]

Hi,

Sorry late reply, there has been improvement since taking oral spray, but this might also down to being off work.(12 hour shifts). Still getting days when feel back to square one though! I would suggest you do not take additional B12 until the Doctor has completed all there tests, or if you do tell your Doc.

I was advised by mine to stop taking it for a week before further blood test, which i did, and symptoms started getting worse again.

Also according to posts on here a week is not long enough as you can get elevated reading for months .

[Sinclair12 in reply to greenlord]

Yes I’m struggling to work too. Thanks for your advice. You have confirmed what I was thinking all along but my GP seems to think my B12 is back to normal now & GPC is normal so no further tests needed. I think I may write to her like others have suggested.

I wish you all the best & hope you get your diagnosis soon.

[greenlord in reply to Sinclair12]

Many thanks and hope you get sorted soon.