In Dec I was diagnosed with B12 deficiency <148 and low folate <2.2. I had 6 loading doses into the beginning of January plus a month of folic acid and felt better quite quickly. Since then I have felt worse again so I had another blood test last week. My b12 is now 559 which is normal and folate is 6.1 which is also normal. IFAB test was normal. GP says he doesn't know what's wrong as everything is fine with bloods. So he's prescribed HRT. I'm 44 and I really don't think it's hormone related 😫 My symptoms are aching joints, headaches, zoning out, forgetting stuff easily, stomach problems (I suffer with gastritis which I self manage). I get diarrhea one day and nothing the next.
He said give it 3 months to see what happens. I'm so fed up.
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UpsyDaisy2
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Your B12 was extremely low. Loading doses are just the start. Having B12 in range doesn't fix the damage - you need to maintain loading dose frequency until symptoms largely resolve.
Given the neurological symptoms you describe and the low B12 level you had, you might end up feeling worse before better as the healing proceeds. This is sometimes called "early treatment decline" and can come as an unpleasant surprise although you can now consider yourself forewarned. Support the healing process with rest, good diet, sensible supplements etc.
Don't wait 3 months, that would be unwise (and arguably unsafe) no matter what your complacent GP thinks.
To paraphrase The Doors, you need to : "push on through (to the other side)".
I had weekly injections for one month after I had low b12 and my blood work showed about the same level as yours and I still felt awful. I thought there must be something else wrong with me—they are wrong about the b12 being the issue.
Then my neurologist told me that it takes a full year for the brain to recover from low b12 and that even if my bloodwork looked good that I could still be symptomatic.
Just before my low b12 was found I thought I was going through menopause at. age 43 because I couldn’t concentrate to read and I was having dizziness and night sweats. I went to my gyno and told her what I thought and she said nonsense because I was still having a regular monthky cycle. She diagnosed me with PMS and said I should go on the pill. I was also having severe migraines—what was likely my first low b 12 symptom.
I am approaching 8 years since my low b12 was found and have no symptoms with weekly injections. I hope this helps you!
Interesting! Sounds very similar but I don't have night sweats at all. Apart from struggling to stay asleep all night, it's all day time symptoms. Thanks for replying.
Interesting! Sounds very similar but I don't have night sweats at all. Apart from struggling to stay asleep all night, it's all day time symptoms. Thanks for replying.
I am approaching 14 months of self treatment from a low B12 baseline of 106ng/l and I was given 6 loading doses by GP and waved into the sunset.
I felt worse than before and I started self treating and tracking my symptoms and co-factors. 14 months later I am almost back to normal in terms of functionality but still lack stamina and high physical and mental energy levels. I self inject several times a day which is a huge inconvenience but a small price to pay for my health back.
My advice is that you need to learn about your condition and manage it with or without medical support as sadly even supportive GPs move on.
My biggest struggle is trusting myself and trusting the heath path I have chosen to follow. It’s slow and lonely and scary at times but looking back at my progress motivates and encourages me as does all the fabulous support on this forum.
I am hopeful that the time will come when I no longer need daily injections but being almost symptom free is a good second prize!
It’s defo years not weeks to recovery - took years to decline so a long recovery period makes sense to me!
Jeez it’s a minefield. I was diagnosed with PA and was so unwell I went on to HRT. I’m 47. I feel a lot better now but I have had a year of daily injections and HRT and am doing well. The B12 sorted out my gastritis (symptom of low b12) but it took a while. Have u thought about self treating?
I thought gastritis caused the B12 deficiency?! I don't know if I should treat myself or even how to! I've spent today with a headache, and vision difficulties 😔
I’m still learning a lot about it. But I have Pa and I know that gastritis is helped by b12 injections. If u want information about self injecting then there are people on this forum that can help u. U just need to make a post asking for help if u need it. I don’t live in the uk. I live in holland and can order from my b12 from Germany. Blurry vision is also a symptom of b12 deficiency. Which makes me think u are under treated.
I agree 100 with technoid. Don't wait. Keep doing loading doses. I was 190 and still need daily injections! Every time I spaced them out it would take so long to get back to square one.
Fix the b12 before doing hormones!!!!!!!!
The b12 may take 2-3 years to repair all the damage that's been done.
Also unless treated the damage done may end up permanent.
Read this.
Lots of good info that backs up these facts
- the need for frequent interjections
- the b12 serum blood test should. It be used to measure progress after initial injection becaus injections skew the results because they go straight to the blood stream. What is absorbed into the cells and the cell repair cannot be measured as there are no tests currently.
- frequent injections are needed until symptoms resolve
Don't listen to the docs on b12. Very very few understand it or even think it's a problem!!!!!!!
I am going through menopause and had the b12 deficiency issue at the same time. With your initial b12 level before injections being so low! I would say that's your biggest issue.
And in science, it's better to change one thing at a time to avoid confusion. Taking hormones will avoid confusion.
so like many of us do, we got taught how to self inject and then bought our own b12 and needles and treated ourselves!
I've emailed my GP surgery to ask for a case review. I can't see any other route in to getting support. Thanks for the document, if they say no, I'll send them that!
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