I'm not sure if this is the right place to post, but im looking for some advice please.
I've been back and fourth to the doctors since around June 2022 with symptoms of overwhelming constant exhaustion that doesn't go away even after a full night's sleep, making it hard to start the day, weakness, muscle & joint pain all over my body, brain fog, shortness of breath and probably other things that I can't remember right now.
I've had blood test after blood test. One doctor thought I had PMR and started me on prednisolone but I did not tolerate it well and went back and saw a different doctor who said it can't be PMR. They eventually said I have fibromyalgia in December 2023. I was then diagnosed with B12 deficiency in January 24 and have just finished 6 IM loading doses. The doctor has said that will probably be it now as it's probably diet related although he didn't even ask what my diet consisted of and I do eat meat, dairy, eggs, fruit & veg, the only thing I don't eat is fish.
These are some of my blood results, I'm not too sure which ones are relevant so can post other ones if needed.
C Reactive Protein - normal range 0 to 5
June 22 - 8.8
July 22 - 10
Oct 22 - 8.1
June 23 - 14
Aug 23 - 9.4
Sept 23 - 12
Jan 24 - 15
B12 - normal range 200 to 900
Oct 22 - 191 ng/L
Jan 23 - 214
June 23 - 194
Ja 24 - <148
Folate - normal 3.0 to 20.5 (was prescribed folic acid tablets in Oct 22 & Sep 23)
Oct 22 - 2.2ug/L
Jan 23 - 3.1
June 23 - 3.1
Jan 24 - 6.5
Ferritin - normal range 30 to 300
June 22 - 36ug/L
Oct 22 - 32
July 23 - 36
Vitamin D - normal range 50 to 200 (I do take OTC Vitamin D as advised by doctor)
Oct 22 - 59nmol/L
June 23 - 58
Intrinsic Factor - normal range 0 to 6
Oct 22 - <1U/mL
I'm not too sure where to go from here?
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Kma123
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Welcome. Sorry need to rest. Worth reporting prednisolone on MHRA Yellow Card Scheme. yellowcard.mhra.gov.uk
Ask for blood results in hard copy.
Symptoms diary.
Quite a lot of us have misdiagnosed with fibromyalgia. It’s an umbrella term. It can be PA/B12 deficiency, other deficiencies as well, autoimmune disease or long COVID.
I haven't been prescribed iron doctor says my level is fine but it certainly looks at the lower end to me. I can't see how the doctor can say it's diet related without even asking about my diet?!
I'm certainly starting to feel slightly more human after the injections although not quite back to normal yet.
Think I will have to book an appointment with a different doctor to discuss.
I can only say that anything on the low end of your regional scale (they seem to vary from area to area, perhaps lab to lab) is worth questioning. Low scores can be an indicator of a problem even if it is within the parameters. This is the "one size fits all"syndrome prevalent in primary care. The individual can be disregarded, especially, perhaps, in a symptom-led condition which B12D/PA is.
Tt is no wonder you feel poorly and you probably needed more injections not less. A lot of us self treat as unable to get enough injections from GP or you can if you can afford it get them at some hairdressers these days. No reason to think this is diet related, If you are on not metformin or proton pump inhibiters likley cause is perncious aneamia and need injections for life. AS other have said you could do with some iron and can buy some gentle iron over the counter and you need to keep up with folate. How much vitamain d are you taking?
I think I'm going to book an appointment with a different doctor as I don't really want to be self injecting or paying if it should be done by the doctors. Although if they refuse then I will definitely look into as I want to continue improving and not get worse again!
Not sure if I should speak to the doctor again and see if they can prescribe iron? They said to stop the prescribed folate after the 3 month course but my levels still seem quite low to me. Vitamin d tablets are 25mcg
It sounds like it is really difficult for most people to get the doctors to give injections frequently enough. The standard seems to be one each 3 months but a lot of us need them much more often than that. Can you get iron over the counter?
Hi, the problem is there doctor has said it's probably diet related (like I say without even asking about my diet) and I probably won't need any more injections at all! Yes I could get the iron over the counter but it's such a minefield as to which one us best, what strength etc.
Was your IF result really 58 - if so then you have PA and the injections should be for life. If you eat plenty of meat/dairy/eggs then it is unlikely that your B12 deficiency is dietary.
Whilst IFA is a good test for proving that PA is the cause of a deficiency because it rarely gives false positives, it is prone to false negatives so a negative is a long way from proving that a patient does not have PA. (False negatives 40-60% of the time depending on exact test method).
Besides which, PA is not the only absorption problem - others are H pylori infection, Crohns, SIBO, tapeworm, drug interactions (PPIs, Metformin etc), tapeworm, gastric band surgery ...
I think you need to challenge your GPs assumption that because the IF came back negative the problem must be dietary - the evidence doesn't support that. Dietary deficiency occurs in people who eat very little/no animal products.
Discussion of the accuracy of IFA and the various non-dietary causes of PA can be found in this document.
"The doctor has said that will probably be it now as it's probably diet related "
From what you've said, dietary B12 deficiency does not seem likely if you're eating dairy, fish and eggs.
Might be worth writing out a typical weekly diet, all food and drink to discuss with GP. Circle any B12 rich food you eat including dairy, eggs, fish and foods fortified with B12 eg some breakfast cereals.
Your GP seems to have assumed that it's dietary and appears to think a few B12 injections have sorted you out. If it's PA (Pernicious Anaemia) you'll need B12 injections for life. There are other causes of B12 deficiency besides PA that require life long treatment.
There have been forum members who have developed spinal cord damage from delayed or inadequate treatment so keep fighting to get answers and treatment. The medical term for this is sub acute combined degeneration of the spinal cord.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Some of the neuro symptoms I developed were
tingling
pins and needles
insect crawling sensations (formication)
electric shock sensations
sensation of water trickling down spinal cord
limb jerks, mainly hand and feet but also fingers, toes and head (aka periodic limb movements)
migraine including unusual visual symptoms
memory problems
clumsiness, bumping into things, dropping things
difficulty getting the right word out (nominal aphasia)
mental blanks when talking
problems with proprioception (awareness of where body is in space)
lost ability to do mental arithmetic
and there were others
My understanding of UK B12 documents is that B12 deficiency with neurological symptoms (from whatever cause PA, coeliac disease, fish tapeworm infection, dietary etc) requires the following treatment pattern...
A B12 loading injection every other day for as long as symptoms continue to improve (could be weeks even months of these) followed by a maintenance B12 injection every 2 months.
Your GP can find this treatment pattern in their BNF (British National Formulary) book in Chapter 9 Section 1.2 or in online BNF link below in Indications and Doses section.
More info in thread I mentioned in my other reply and in pinned post "Various PA/B12D resources.
Some UK forum members turn to treating themselves when NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 ( 1000mcg or higher) but this doesn't work for some, didn't for me and some as a last resort try self injection (SI). There is a pinned post that mentions SI.
I suggest putting concerns about diagnosis/treatment into a letter to GP as I think this makes it harder to ignore.
Your ferritin's very low - ask for a full iron panel and seek specialist advice as your GP lacks knowledge. I'd also test homocysteine and MMA privately if necessary. Your B12 and folate are both low, as is your Vitamin D.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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