I've had M.E. for 8 years and seem to get slightly worse and more tired every year. I've recently heard of Pernicious Anemia and have all of the symptoms. I had my b12 levels checked, but unfortunately was supplementing beforehand so I've now realised it's probably a false reading. I've included my results here.
I've started self injecting and although I still feel very tired (I've only been doing it a week), I've noticed improvement in my bowel movements and asthma. I'm building the injections up slowly as the initial 100ml dose sent me into a very bad depression. I've also started taking folic acid. I'm determined to get my health back as much as I possibly can after 8 years, and I'm hoping this is the answer!
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_Jen_
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ME sounds wretched and it's good to read that you're having a positive experience of SI B12.
Yes, you will have influenced your serum levels of B12 by your supplementation. Your folate level is within range but I'm a little confused as to whether that's also because you were supplementing that or if you've decided to supplement after the test. If the latter: why, how much folic acid are you planning to supplement, and up to what level?
Looking at your results, the ferritin report mentions that you're in the range for possible iron deficiency anaemia - is that something you're addressing or is already known to you?
I'm taking the folic acid because I was told it helps the b12 absorb better. I started taking them after the test. I'm new to all this and have a foggy head, so dealing with all this new info is a bit difficult.
I was taking Floradix, a b12 and iron supplement, so my iron should be higher really. I've only recently learnt that my stomach acid meds (I'm on two) can stop me absorbing nutrients.
Strictly speaking, you're advised not to supplement folic acid until after any necessary investigations of the low B12 as it can confuse matters.
However, as you're supplementing iron and B12, those results are all influenced by that so it's probably quite difficult for your GP to disentangle altho' I hope that an appropriate plan is worked out with you. I see that Floradix contains iron plus "B2, B6, B12 and C" which will add their own smidgeons to the mix and your levels (or not).
If you were using really high dose tablets before the test 1000mcg - I would have expected levels to be much higher than the above if you didn't have an absorption problem.
I've been on stomach acid meds for years, and have only recently learnt that they can stop people absorbing nutrients. The supplements also contained iron, so that should really have been higher too.
the PPIs may or may not have been the cause of the problem, but it is well established that they really shouldn't be prescribed for long periods of time - certainly not without careful consideration.
What exactly was the reason they were prescribed in the first place.
The symptoms of low stomach acidity (which is a factor in absorbing B12 and other nutrients) are actually more or less the same as high stomach acidity but it can, and probably should, be treated in other ways.
I've been on Ranitadine/Zantac for many years, due to excess acid that led to a stomach ulcer. I'm also on Omeprazole for acid reflux, as I have a haitus hernia. These have never been reviewed with me, they're just on repeat so I've kept taking them. I had no idea they could hinder nutrition so much.
To be honest I don't have much faith in doctors as they seem to just put everything they can't explain down to the M.E. and tell me I just have to accept it and manage it. I've had bad constipation for a year and when I asked why it could be happening I was told 'that's just how it is for some people' and given a laxative! I'm given meds for my symptoms but doctors generally don't seem too bothered about you investigating further because of the M.E.
I know what you mean by being written off with an ME / CFS diagnosis. Well done you for not accepting feeling dead and so trying to help yourself.
Potassium is one of the things, like folate, that is used with the B12. It plays an important role in balancing mood and I wonder if you may benefit from more in your diet. I suggest you Google it to see the effects of it and see what sources you might like. I also use Lo-Salt as a source. Do be careful but if you need it, you need it.
For more information you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".
Pleasr look up h pylori. It causes a high percentage of ulcers. If they just put you on a ppi for your ulcer then you could still have h pylori which will decrease stomach acid (feels the same as high stomach acid but much more commom). Having H pylori decreases your body's ability to absorb iron and b12 and who knows what else. H pylori is an infection which causes long term all over body inflamation which causes fatigue (cfs) over time.
I was tested for H Pylori a few years ago when I had a gastroscopy and it came back negative. This is what drives me crazy - according to every test I've had, my body is working just fine! But they don't explain the perameters of the results and what they mean.
Am wondering if you have had your thyroid fully tested ? Many of your symptoms can and do overlap with Low B12/PA. I have a cousin who was diagnosed with ME and later found to have Hashimotos .... Always good to rule things out 😊
I have, a few times, but was just told each time that results were normal. Whatever that means! I'm going to ask for copies of my results from any test from now on!
Docs often test just the TSH which is a teeny bit of the story. When they say *normal* - they mean in range ! It is where you are in the range that is key. Sticking to the ranges and not listening to the patient is keeping thousands unwell.
I have been on Thyroid UK here on HU for six years so have learnt a great deal.
Tests rarely done on the NHS are the key ones. TSH - FT4 - FT3 and Thyroid anti-bodies TPO & Tg are the ones needed. Private Testing at home is available through a few companies. Details in the link below under the heading - About Testing.
You may well have a thyroid that produces the storage hormone T4 - but that needs to convert into T3 - the Active hormone needed in every cell of your body. I am suspecting a Low T3 😊
You can ask for your records going back as far as you choose. There may be some surprises 😊
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