Hi all, a bit of background. I'm a 51 year old female. All my life I've been told I have IBS and in the last 10-15 years I've been back and forth to the docs with various niggles, (malaise, fatigue, aches and pains, multiple bursitis and tendinitis, chest pains, breathlessness, low libido, bleeding gums, weight loss, uti's, mouth ulcers, sore tongue, low body temperature etc). All my tests have always come back 'normal', although I've learnt recently that doesn't mean much. Five years ago I got worse and was tested for celiac and various other things. Apart from being diagnosed with degenerative discs in my spine, I was told all was well. I came to the conclusion I had milk and alcohol intolerance so gave them up and for a while felt better. Two years ago I started feeling bad again and went back to the doctors. After being told everything was in my head, I started using natural progesterone and oestrogen cream which helped with some things but not all. Anyway earlier this year I was finally diagnosed with iron and folic acid anaemia (ferritin was down at 8!), and it looked like I was borderline anaemic the previous year when I'd been told it was all in my head. I got hold of my blood test results and my B12 was 276 in April 2016 and 293 in may 2017 (180-700). My docs said that was fine but I researched and decided it wasn't so took iron, folic acid (prescribed) and b12 tabs (self-prescribed) for 2-3 months. I also gave up gluten as well as dairy, alcohol and soya. In June 2017 my ferritin had gone up to 110 and my b12 to 585. My gums stopped bleeding, my hands and other parts stopped aching and I generally had loads more energy. I felt like a new person, despite the fact that at that time my doc also told me I had stage 3a chronic kidney disease. I stopped taking the supplements and a few weeks ago I started feeling cold, tired and achy again so have paid for private blood tests. My b12 has gone down to 201 and my ferritin has gone down to 55 (same ranges as before). I should say that I eat a lot of red meat and green leafy veg, and very little processed food.
So, sorry for rambling, but I'm wondering, is it worth bringing this up with my doc or taking supplements myself and monitoring my levels?
Thanks in advance!
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Julesboz
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People who have IgA deficiency will not make Coeliac antibodies and may need alternative tests for Coeliac disease. Did you have a test for total IgA at the same time you were tested for Coeliac disease?
I am not medically trained just someone who has struggled to get a diagnosis.
Hi there, thanks for all the info. I am in the UK. I definitely have had a lot of the symptoms of b12 deficiency but I've read that the ranges in the UK aren't very good, I believe in Japan anything under 500 is considered deficient. Because it's taken so long to get a diagnosis for anaemia and CKD, I'm just wondering if it's worth bothering with UK doctors. Are they likely to dismiss me as my blood levels are 'normal'? Will a diagnosis make any difference to me, i.e. Is it worth fighting for, or should I just treat myself and save the hassle? Are there any pros or cons either way? You said you struggled to get a diagnosis. Has it helped getting one? Sorry to deluge you with questions, but I find that being armed with info definitely helps when speaking to GPS, and even then they make me feel like a middle aged hypochondriac!
there is, it would seem a better understanding of how to interpret the tests in Japan - the normal range is just a statistical range but it is measuring something that is an indirect measure of how much B12 you have at the cell level.
how serum B12 is a test that will miss 25% of people who are deficient but also pick up 5% who aren't deficient if used as a single measure so evaluation of symptoms is very important - it isn't that you will be treated with injections if your level is below 500 (pmol/L???) in Japan - its that you will be treated if you are symptomatic up to that level.
What was the strength of the supplements you were taking?
I was taking 1000ug methylcobalamin b12 per day. One tablet. I stopped having symptoms when my levels went up to past 500 and my anaemia was cured now some are back. I am assuming some of the symptoms I had earlier this year were due to my incredibly low ferritin and anaemia, now I have ok ish ferritin, albeit dropping, and don't have anaemia or folic acid deficiency and some of the symptoms have come back so am wondering if that's to do with b12 (sore tongue, bleeding gums, aching hands, cramping hands and feet , bursitis in my hip that just won't clear, weak muscle strength and stamina despite regularly brisk walking and swimming, fatigue particularly in the afternoon, itchy/dry eyes, dry skin). I'm pretty sure my doctor will tell me no as she didn't flag the b12 being low last time.
it looks like you probably have an absorption problem - suggest you try sharing and discussing the results with your GP focusing on the drops that occurred whilst you weren't supplementing.
possible absorption problems would include PA, coeliacs (though that seems to have been ruled out), h pylori infection and drug interactions - eg PPIs if you are taking these for issues related to stomach.
Oh and sorry forgot to say, I had 2 celiac blood tests in 5 years but my doc didn't tell me what they were. I also had a biopsy and that came back fine (5 years ago), but I definitely feel loads better being off gluten.
I had more than one diagnosis I disagreed with including CFS and fibromyalgia. Doctors have finally accepted I'm symptomatic for B12 deficiency after many years of me showing typical symptoms.
I had to resort to self treatment at one point but this made it virtually impossible to get a diagnosis of B12 deficiency. Self treatment for me was an absolute last resort.
I was also made to feel like a hypochondriac.
"Are they likely to dismiss me as my blood levels are 'normal'?"
BSH Cobalamin and Folate Guidelines (UK B12 document) make it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether B12 is low or within range.
Emphasises the need to treat people who are symptomatic for B12 deficiency even if B12 result is normal range, in order to prevent neurological damage.
Umm if you do have kidney disease I implore you to be careful with B12 supplementation. When my Doc told me to research toxicity and B12 - which doesn't exist, but ONLY an issue with someone who has kidney problems and/or diabetes.
The kidney issues are a concern because obviously excess B12 is drawn out of the blood via the kidneys. Therefore extra work will be required by the kidneys to remove the excess, if they are already an issue - this MAY cause problems.
This was only quick research done to prove my doc wrong with his toxicity claims - so please do look into it more thoroughly than I did.
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