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B12 level in normal range but still exhausted

ickyrocket profile image
8 Replies

Recently diagnosed with PA (with positive IFA). Completed loading dose injections 8 weeks ago. Prior to loading dose my b12 was 192 (180-2000) and folate 4.7 (2.8-20).

8 weeks after loading dose injections my results are b12 758 (180-2000) and folate 5.1 (2.8-20). I have my first three monthly b12 injection on 1May.

My question is can I still feel total total fatigue as a result of the new readings above.? I am struggling with this level of tiredness, it is having a big impact on my life and work.

My Graves' disease and iron are both within normal range, I've recently had an iron infusion. All other bloods are normal.

Two separate GPs over the last couple of years have diagnosed M.E/CFS but I'm finding that diagnosis difficult to accept given the stigma around it.

Grateful for anyone's thoughts. Thank you.

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ickyrocket
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8 Replies
Nanc72 profile image
Nanc72

Your folate range seems very low! In the US ours starts at 5.4 - 24.8. I thought folate should be in the upper part of the range? I am not a Dr or nurse, but that was my understanding.

ickyrocket profile image
ickyrocket in reply toNanc72

Thanks Nanc72, I will try and find out what an optimum level would be.

Gambit62 profile image
Gambit62Administrator

after loading doses the results of serum B12 test are extremely difficult to interpret - and they are difficult enough to interpret before loading shots. As you will see on some other posts significant numbers of people find that they need much higher levels of B12 after loading doses - mine need to be permanently off the top of the measurable scale and I am not alone in that.

So, in answer to your question - yes it is perfectly possible to feel and be B12 deficient with that level of serum B12. Serum B12 just measures the amount of B12 in your blood - it doesn't tell you what is going on in your cells where the B12 is used and the relationship between serum B12 and everything being okay in your cells can be very different after loading doses. By far the most effective way of managing B12 is to listen to symptoms and they will tell you what the frequency of injections is for you. Unfortunately, most GPs are a long way from being aware of this and it can be very difficult to find one that will listen.

If your GP is open to learning about B12 and improving the treatment of their patients then they may be interested in the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA.

pernicious-anaemia-society....

ickyrocket profile image
ickyrocket in reply toGambit62

Thank you Gambit62, this is really helpful. It's just this fatigue dragging me down all the time.

Marz profile image
Marz

How was your Graves diagnosed ? Which anti-bodies were tested ?

ickyrocket profile image
ickyrocket in reply toMarz

Hi Marz, I'm not sure as I was diagnosed back in 2001. My aunt (mums sister) has Graves too, she was diagnosed in the 1980s, I believe. Could I have been misdiagnosed?

Marz profile image
Marz in reply toickyrocket

With Hashimotos you can swing between Hypo and Hyper and your fatigue is often linked to Hypo. You could ask for your results from the time of diagnosis. I am usually on Thyroid UK and have read of Docs not understanding results correctly. Knowing your test results is key - they are legally yours ...

ickyrocket profile image
ickyrocket

I've just had the 6 loading doses. First three monthly injection us on 1 May. I have been feeling fatigue for 17 years.

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