New here and need help with next steps - Pernicious Anaemi...

Pernicious Anaemia Society

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New here and need help with next steps

KittyB52
KittyB52

Hello all!

I am new here but have been trying to figure out what is wrong with me for a couple of years.

I feel like I am going round in circles. I am pretty sure B12 deficiency is causing at least some of my problems (strange sensations in my toes, balance problems, restless legs, infertility) and as I am low in ferritin, folate and Vitamin D, this could account for other symptoms (unrefreshed sleep, breathlessness, heartburn, joint pain etc.)

My B12 levels are ‘normal’ and both MMA and homocysteine test results were OK too. My GP only tested me for MMA and homocysteine after I wrote him a letter directing him to NICE guidelines, so I can’t expect any further help from him.

My GP referred me to a rheumatologist for fibromyalgia, and at the appointment a couple of weeks ago I was given a steroid injection (which hasn’t done anything much) and yet more blood tests (which according to the nurse are all ‘normal’ - not all the results are in yet, and I don’t have a copy of the results to see what the numbers are).

I am not seeing the rheumatologist again until August and I don’t want to waste more time feeling rubbish (I have a very active toddler to look after!)

I am aware that I need to be careful with balancing supplements and find it all a bit confusing. I am scared of needles, but think self injecting might be the way forward.

I would like some advice on which supplement to start with. I have been taking some gentle iron supplements and a Vitamin D oral spray for a few months but I feel no different.

Thanks in advance.

14 Replies
oldestnewest

Hi KittyB52 Welcome. Just to say that the help advice from the 'experts' (I'm not one) is very good.

One piece of advice - always get prints of your blood results, scans and consultants reports etc. and post them on here, with the ranges, if you want them checked. GP's have been known to say "normal" when they are not. Some consider 0.0I above the guideline range as 'normal.

I had to have two operations shortly after a "normal" from mine, and it has happened to many others on here.

If you decide to self inject - I started earlier this year, and it really is easy, not a problem. We can tell you where we get our supplies and it is a relief not to have to argue with doctors for a B12 injection that is not harmful.

wedgewood
wedgewood in reply to beginner1

Yes of course you can have PA and your B12 can look normal . It can take 3-4 years to deplete your stores of vitamin B12 in your liver . If you inject B12 and that is not the problem , you know that you are not harming yourself . You cannot overdose . Of course your B12 Reading will go up . Don’t forget you need to supplement Vitamin B 9 ( folic acid/folate ) which works in conjunction with B12 .

Sorry just noticed I’m answering to wrong person . FOR kittyB52 !!!

Here are my test results from earlier this year:

Active B12: 69.600 pmol/L (25.10 - 165.00)

Folate (Serum): 3.78 ug/L (2.91 - 50.00)

Inflammation Marker - CRP - High Sensitivity: 1.54 mg/l (0.00 - 5.00)

Iron Status - Ferritin 16.5 ug/L (13.00 - 150.00)

Vitamin D 83 nmol/L [50 - 100]

Total white blood count 6.9 10*9/L [3.8 - 11.0]

Haemoglobin concentration 134.0 g/L [115.0 - 165.0]

Platelet count - observation 385 10*9/L [150.0 - 400.0]

Red blood cell count 4.92 10*12/L [3.8 - 5.8]

Haematocrit 0.42 [0.36 - 0.47]

Mean cell volume 84.8 fL [85.0 - 105.0]

Mean cell haemoglobin level 27.2 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 321.0 g/L [310.0 - 360.0]

Erythrocyte sedimentation rate 13 mm/h [0.0 - 8.0]

Homocysteine 14.3 umol/L [< 15.0]

Methylmalonic Acid 172 nmol/L [0.0 - 280.0]

Vitamin D was almost doubled due to the weeks of sunshine we had earlier in the year - not sure it would be that high now.

Hidden
Hidden

I'm no doctor but I do believe you should aim for all 29 essential vitamins and minerals. Just one deficiency can wreak havoc. I don't know how many months you should be on it but I would guess 3 or 4 should be fine or while symptoms persist. After that its a good idea to slowly come off the supplements as synthetic supplements are not ideal either, although they are a billion times better than having a deficiency. Someone else here said that B12 should be injected as it takes 2 or 3 years to deplete the body's reserve, assuming you have PA or some other absorption problem. Sublingual B12 can be found for $4, but its an inferior grade. Unfortunately, everything means spending big dollars. Prevention is the best cure for both body and wallet.

helvella
helvella in reply to Hidden

Just what are the 29 essential vitamins and minerals to which you refer?

I find it very difficult to agree with you there as blanket advice/recommendation. For one, anyone who already has high iron should avoid iron supplements.

Hidden
Hidden in reply to helvella

I thought her iron was 16.5, I read the post again and it didn't say anything about her iron being high. I might have misread it. The 29 nutrients I mentions are vitamins a, c, d, e, k, b-complex, and minerals including trace minerals, like selenium and copper. In my post I do say I'm not a doctor and "I do believe". I'm just stating my opinion. I don't believe that having the opinion that I stated about vitamins is outlandish or unconventional. I try to be both humble and pragmatic.

helvella
helvella in reply to Hidden

I was pointing out that blanket supplementation can be wrong - in this person's case, iron probably does need supplementation. But the same issues arise with many supplements. I guess that for many, modest levels of supplementation are likely to be handled reasonably OK even if not needed or already relatively high.

I thought you had a specific list of 29 nutrients?

Hidden
Hidden in reply to helvella

Right. My belief is that if you are low in one nutrient you will likely be low in another. I'm not aware of there being a broad test for all nutrients. Yes, occasional supplementation in moderation is good. Even better, having a very healthy and nutritious diet. The worst that can happen is: you have a nutrient deficiency, you feel bad, you go to the doctor, doctor does tests on you, everything is OK, so he says you have a panic attack. Here are the nutrients. 28 are supplemented. The last one, sodium, is generally not supplemented unless you are athlete.

vitamins A

vitamin C

vitamin D

vitamin E

vitamin K

thiamine (B1)

riboflavin (B2)

niacin (B3)

pantothenic acid (B5)

pyroxidine (B6)

biotin (B7)

folate (B9)

cobalamin (B12)

calcium

phosphorus

potassium

sulfur

chloride

magnesium

iron

zinc

copper

manganese

iodine

selenium

molybdenum

chromium

fluoride

sodium (only supplemented on sports drink)

Foggyme
FoggymeAdministrator in reply to Hidden

m7m2018.

'My belief is that if you are low in one nutrient you will likely be low in another'

Sorry, but your belief does not make it so...as helvella points out, blanket supplementation can be wrong...and positively harmful for some (I.e. supplementing - or over supplementing- with B6 can cause neuro toxicity and, potentially, irreversible neurolgical damage).

Not everyone who has PA or absorption problems need to supplement with what you refer to as the '29 nutrients'.

Nothing wrong with having an opinion...but when this is presented to others as 'factual advice' (as yours is), then for the sake of accuracy and the benefit of those reading, please prepare to be challenged!

KittyB52
KittyB52 in reply to Hidden

I thought that if absorption was possibly an issue, taking tablets or sublingual supplements wouldn’t work? I also thought that if you do have such a problem which required injections, you would likely need to be on them for life?

Hidden
Hidden in reply to KittyB52

If you have PA you will always need injections. More research is needed on those people that inject everyday and can't go 3 days without an injection. I don't know why that happens. Absorption problems generally refer to intake at the intestinal level. It could also be at the celular level. Sublinguals only work if malabsorption is located at the intestinal level.

Foggyme
FoggymeAdministrator in reply to Hidden

m7m2018.

'Sublinguals only work if malabsorption is located at at the intestinal level'

Sorry but this statement is not correct.

For clarification, sublinguals either work for you or they don't...they do for some - but not for others. The only way to know is to try them...but they most often don't work for those with PA.

Foggyme
FoggymeAdministrator in reply to KittyB52

Hi KittyB52. If PA or another absorption issue the reason for your B12 deficiency then you're correct...B12 injections are required for life.

Sublinguals or oral supplements work for some people, but not for others...but oral / sublingual B12 is not the recommended treatment for B12 deficiency in the UK. The recommended treatment is B12 injections.

sorry, short of time right now but please ask if you need links to evidence or more explanation 😉😀.

Foggyme
FoggymeAdministrator in reply to Hidden

m7m. For clarification...there is no such thing as an inferior grade of vitamin B12.

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