I am looking for some information. So for several weeks now I have felt really drained, week and wanted to sleep all the time. I knew there was something wrong so I visited the doctor. I was advised to come back on for more test as my b12 levels were at 120. I visited the doctor this day too because I have had a constant headache for over 2 weeks. I was given b12 tablets and amtyptaline. After 2 weeks I feel no better and headaches are still happening. I feel I’m constantly on the edge of passing out and dizzy even when I lie down. My hair has been falling out and getting sore wrists, knees and pins and needles. Yesterday I went back because I don’t feel any better if anything worse as now I have had loose stools with very little warning and sickness. I was advised my levels have went up to 150 but no explanation why they were down in the first place and advised it will take several weeks to get better but I feel worse and was basically dogged off that my fertility issue are causing me stress and I should get my eyes tested for my headaches. This is not the case.... can someone please help as its really getting me down. Thanks
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Sdarrien
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what is your diet like? do you eat meat/fish/dairy/eggs? if you do then its unlikely the tablets are going to make any difference - assuming they are 50mcg.
Ie your doctor is treating you for a dietary deficiency whereas the cause is more likely to be an absorption problem.
serum B12 isn't a gold standard test and testing the same sample several times will give results that are in a range from -20% to +20% of the actual result - the change in your levels is within this range so there may not actually have been any improvement in your levels.
I was back for bloods yesterday to check my IF factors and hormone levels. Also was told my cholesterol was high although I excercise 3 times a week, I eat healthy with a combination of meat and fish in my diet every day. I have previous had blockages in my liver and h pylori which radication treatment was not working but when I had biopsy’s I was advised had cleared even though my stools kept coming back positive. Last night I was starting to be sick and today my stools are white. I was basically told I felt depressed due to fertility issue which is not the case and my thyroid is fine so it must be my calorie intake which I struggle to understand. I have numerous times advised I have had issue losing weight especially my lower abdomin. Surely my b12 has dropped for a reason but they just keep flogging me off with pain killers for the severe headaches and b12 tablets. She said it will take months for you to get better but I can’t live like this for several months. I really appreciate any help
are you in the UK? and what was the strength of the tablets you were given?
If they were 50mcg tablets you need to go back and point out that you have plenty of B12 in your diet so the deficiency can't be dietary, which means you have an absorption problem - h pylori is one possibility but the most likely cause is PA - an autoimmune condition in which your body attacks the mechanisms that allow you to absorb B12 from your food - and will also stop you from being able to use any stores in your liver as the mechanism for releasing uses the same mechanism as you use to absorb B12 from your blood.
This is a link to the BSCH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which a UK GP can also access through the BNF
my original b12 test was 169. i was told by my doctor to take 220mg of b12, which i did daily for 16 months. 2nd b12 test showed b12 was 242 and i can tell you i felt WORSE! doctor said to keep taking tablets so i did for an additional 14 months while i got so bad i thought i might have early onset dementia. i couldnt remember anything, felt i had lost 50 points of IQ, barely able to shower, had to sit to get dressed as balance was off, loose stool (blob) light colored for 4 years at this point, constant headache for the last 6 months to a year, knees and wrist ached.
i got an injection and began to feel better, about 50% better by 6 to 8 injections. was then diagnosed with h pylori. it took 2 rounds of treatment to get a negative breath test.
How can your doctor say it is gone if your stool sample is positive? seems a bit ridiculous to me those tests are nit known for false positives.
can you go to a different doctor? can you have someone help you order b12 from Germany?
h pylori runs in families!!! it is thought it can be passed by kissing or by drinking from the same glass or eating from same utensils. if you have a significant other or children, they need testing also! it may not be causing them any issues, YET! also you can be reinfected by their infection.
Oral B12 doesn’t work in many cases. As your body in unable to absorb B12 in the stomach if you have Pernicious Anaemia.
You need a shot if cobalamin. Either Hydroxocobalamin or cyanocobalamin.
Hydroxocobalamin stays in the body longer (up to 3 months) Cyano (1 month) You need frequent injections until you feel an improvement. Like one a week for the first few weeks. Then 1 a month and then every 2-3 months. For life. If your test shows you have the intrinsic factor this is the only way you can successfully be treated for B12 deficiency.
So my intrinsic factor came back negative but my b12 level has went up to 175.... but I still feel really bad. Had a bad experience with a rude doctor so asked to see another one. She implied that I feel stressed due to fertility issue which isn’t the case and I should get my eyes tested for the blurred visions and headaches. Could seriously cry.... now have loads of grey hair appeared and is falling out. My skin is soooo dry is this also a symptom?? My memory has been shocking. Actually forgetting half way through a sentence what I’m talking about....
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