I’ve been exhausted for about 2 years, can hardly make it through a day without napping and experience breathlessness and general aches that I shouldn’t at my age. (I’m generally fit and not overweight)
After an number of GP visits my B12 was tested and found to be very low, paired with folate deficiency.
I had my initial 5 injections around 6 weeks ago and have been taking folic supplements. I felt better for maybe a week to 10 days but I’m back to feeling awful again.
Anyone have any advice or fill me with hope for the future?! X
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Crazy_cat
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At the very start of the treatment everyone feels better but then things again get back to what they were it's pretty normal and don't worry as it takes time for vitamin levels too deplete the time required for fulfilling the loss also takes time You will b fit and fine soon but it will take some months
I am on B12 injections every 4 weeks and Folate tablets daily when l was first diagnosed with pernicious anaemia I had injections every other day and frequent blood tests till my levels got to an acceptable level, then l went on to every 3 months but as I have got older l am now on as I said 4 weekly well I am 74 now 😂😂with other health issues !! You should ask your GP if this is possible for you till your B12 level improve just a suggestion!!!
No you never do apparently, unless it’s alcohol related or another issue you should ask the Pernicious Anaemia Society for more advise they are an excellent source of knowledge!!
I've PA and I think I've found the reason i guess I've hyperthyroidism my father has it and I did some research work and my symptoms do match with it and hyperthyroidism and PA are interrelated so will have to first get rid of thyroid then I'll beat anemia 😂😂
Crazy_cat what you've outlined sounds like the start of my own B12 journey... only by the time they discovered mine I had been losing my voice every 2nd week for 6 months, I couldn't feel my face or hands and I could hardly function. I was initially given 3 x B12 shots over 6 weeks and then GP tested B12 1 week later and level was high so injections stopped. I did really well for a week or two. 5 weeks later I was bedridden. Swapped GPs and she gave me loading doses (B12 every 2nd day) by then I'd found this forum and with all the help of the members on here found the courage and equipment to SI. After 2 months of SI, all my symptoms had all but gone and I felt like a totally different person. I had at least 3 if not 4 months of injections every 2nd day by that stage... unfortunately I've had a really bad experience trying to wind them back (due to a number of factors) and am almost back at square one. If you can be bothered with a lengthy read I have just posted on my predicament.
If you can't find a GP who's willing to work with you to find out the right B12 dosage / frequency for you, then like so many on this forum you might have to take the SI route.
I feel for you and truly hope you start feeling better soon. All the very best!
How much folate are you taking and what form? Too much can make people feel very ill. I can't tolerate any folate supplements, and my folate blood test was low. I have to eat folate foods to bring levels up.
If the reason for your b12 deficiency is Pernicious Anaemia , then that is probably the reason for your “ stomach issues “ Trouble is ,P.A. Is not easily diagnosed since the departure of the Schilling test . The IFAB test ( intrinsic Factor Antibody test ) shows up negative in about 50 % of P.A. patients . Many doctors are ignorant of this , and then believe that the patient does not have P.A. , although demonstrating many of the symptoms . The antibodies destroy the parietal cells in the stomach. These cells produce a protein called the Intrinsic Factor , and also Hydrochloric Acid ( stomach acid) Both of these substances are needed to break down and absorb vitamin B12 . Also crucially, stomach acid keeps the balance in the stomach. ,preventing bad bacteria from developing . Lack of it upsets the stomach flora , and bad bacteria takes over , causing various “ stomach issues “ that you mention . They vary from person to person. But with me , it was stomach pain , bloating , nauseous reflux ,diarrhoea / , constipation , burping etc .
I found a course of a water -based probiotic called Symprove , helped when I started b12 injections . Also drinking an acidic drink ( diluted organic apple cider vinegar ) with a meal was helpful . Swedish bitters are also good . In serious cases there are Betaine Hydrochloric Acid capsules with Pepsin .
Also chewing thoroughly, and eating smaller meals more often . I also think that a modest mineral and vitamin tablet daily is a good idea , because a lack of acid inhibits the absorption of other vitamins and minerals .
I do hope that the above is useful to you . Anyhow ,nothing that I’ve suggested is harmful in any way , even if it doesn’t help you . When I went to the doctor with” stomach issues “, — after diagnosis with P.A. , it was suggested that I took Gaviscon , which suppresses acid , and would have been the worst thing to do .! The doctor didn’t know that P.A, patients have low or no stomach acid ( Hypochlorhydria/ Achlorhydria. . ) There are suggestions on the internet for a diet for Achloryhdria. I have to say that my stomach issues have now disappeared. Did once reappear mildly , 2 years ago but a bottle of Symprove put me right .
To test for low stomach acid at home , there is a way to do it roughly using a drink of water with bicarbonate of soda first thing in the morning —- Google for the information.
P.A. has been poorly researched . We are mostly on our own . Most of us on this forum are forced to self-inject, to keep symptoms from returning . We all need differing regularity of injections . Anything from daily to 3 monthly , and anywhere in between .
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