My husband had his first B12 injection last Tuesday. Since then he has been feeling worse which I understand is quite common. Yesterday he seemed to buck up and thought that was the turning point but today he feels worse again. Does anyone know how long it takes for any improvement and why the good day yesterday then a down turn today.
Many thanks Elaine
I had an immediate improvement he may have more underlying conditions , does he have Auto-Immune conditions in his family ,there were some on both sides of mine , Human G/M insulin triggered mine , Thyroid ,Pernicious Aneamia , Pancreatic Insufficiency , Adrenal , irreversible dammage .
Thanks for your reply, he is waiting on the result of the Pernicious Aneamia test
You might find this link useful:
b12d.org/b12-injections-wha...
Many thanks again hamster for the link. Best Wishes browny
I had six injections in the first two weeks and I began to feel better after the 4th one - so I hope your husband does too.I have an injection every 3mths now which I have in 2wks time and I must say I am ready for it. Hope all goes well for your husband!! from lovely me.
Many thanks lovelyme, my husband has had only one injection and the next is not due for 3 months. His level is 229, bottom of range 180 so G.P. said just one every 3 months
Oh Browny, I didn't realise he wasn't getting the loading dose, God it's so maddening! I hate to say it but giving him just one injection is like giving someone dying of thirst one drop of water. It's probably not going to make any difference at all, except it will increase his blood levels so the GP can sit happy in the knowledge that it's "working".
You need to insist on the loading dose as per the BNF, tell her that she can't possibly do a proper trial of injections without loading. Here is another link from B12d.org designed for GPs, as well as the treatment protocol:
b12d.org/book/export/html/1762
b12d.org/sites/default/file...
Hi hamster, many thanks again for the excellent links, we thought we did well getting the G.P. to prescribe the injections but did not realise about the loading dose. We will see the G.P. about the loading dose but I won't hold my breath as she was not even going to give my husband the injections as she was saying he was in 'range'. We persisted until she agreed to the injections. If she does not agree to the loading dose could he supplement with sublinguals and what dose would be advisable.
Best wishes browny
What are his symptoms? Does he have neuro symptoms?
b12deficiency.info/signs-an...
If he does then really the best treatment is injections if you can get them. A normal loading dose is 6 injections over 2 weeks, then onto 3 monthly. But if you have neuro symptoms then it should be every other day until no further improvement, then 2 monthly. That info is here:
evidence.nhs.uk/formulary/b...
If she says his B12 is in range show her the UK NEQAS B12 Alert:
ukneqas-haematinics.org.uk/...
Other things that will effect the uptake of B12 are folate and iron, these need to be optimal, not just in range.
Hi
His symptoms are severe fatigue, dropping off to sleep every time he sits down, anxiety, feeling down in the dumps, palpitations, headache and back of neck pain, numbness and tingling in one hand (G.P. said if the numbness and tingling was from the B12 deficiency it would be both hands not just one) crawling feeling on face, general aches and pains and heavy feeling in legs.
We will take the info. from the links to G.P. and hope for the best.
Be mindful these recommendations apply when there is an established diagnosis of megaloblastic anaemia or subacute combined degeneration of the cord.
Browny - My first neuro symptom was a numb right hand, after 6 years of no treatment my whole right side is affected, much moreso than my left. I have proprioception impairment in my right foot still, possibly permanent. The left foot has improved. It is quite common for only one side to be affected.
pjkaus - I never had macrocytic anaemia (many people don't) and I had a normal serum B12 at 310 when last tested. However I did test positive for anti-parietal cells and had an abnormal MMA result, and almost all my symptoms (of which there were many) have reversed with frequent treatment. It is much better to trial treatment and if it doesn't work, fine, no harm done, than to do nothing at all except sit around waiting for SACD to develop.
Hi hamster, yes I thought it was strange when G.P. said both hands would be involved.
Sorry if that sounded fierce, but getting any sort of diagnosis, let alone an established one, is nigh on impossible for many people.
You are the product of your experiences but I am not sure I agree with the facts you state. It certainly has been reported that subacute combined degeneration can occur without associated anaemia but it is rare for there to be no sign of macrocytosis. I can think of many diagnoses for this gemtleman's symptoms that are more frequent than SACD and one would think that investigation the common things first is the preferred approach. Carpal tunnel for instance would be two orders of magnitude more common than SACD and needs to be considered. Nerve conduction studies would answer this quickly. Sleep apnoea would be a mucg more common cause of daytime lethargy. Why do you presume that B12 deficiency is the cause.
It's not rare for macrocytosis to be absent, from 1988 Lindenbaum et al:
ncbi.nlm.nih.gov/pubmed/337...
I would say that 28% was actually pretty common.
There is lots more research confirming this,
William Beck (Neuropsychiatric consequences of cobalamin deficiency 1991) found macrocytosis absent in 33%.
Macrocytosis is also often absent because of co-existing iron deficiency, something that is commonly experienced by PA sufferers, or because folate supplementation has normalised the haematological picture.
My advice for Browny's husband is based on the fact that his GP has agreed to trial B12, so must therefore have reasonable suspicion that this could be a cause of his symptoms. I am simply suggesting that if you're going to trial it, you need to give it in sufficient amounts to get some improvement, if improvement is to be had. I am certainly no physician and wouldn't presume that other medical conditions were not present. However, the 2 you mention (carpal tunnel and sleep apnoea) are often found in PA patients and anecdotally improve with B12 treatment (have a look round the PAS forum).
Here is a study linking sleep apnoea to elevated homocysteine levels:
ncbi.nlm.nih.gov/pubmed/193...
And one for carpal tunnel syndrome treated with mecobalamin (methylcobalamin):
ncbi.nlm.nih.gov/pubmed/157...
I would love it if the doctor had tested his serum B12, active B12, MMA, homocysteine, anti-intrinsic factor, anti-parietal cells, and also conducted an MRI and other neurological tests. But there is no GP out there that would do all that, unless you were paying for it, so in the absence of any gold standard tests (because none of the above are conclusive) a trial of B12 is actually the most sensible option. So I applaud his GP for this, however, now that he has had one jab he can't go for the other tests (they will be skewed) so it is only ethical to continue the trial treatment.
If you read Browny's blog the B12 was given because they "persisted until she agreed". I mcetainly don't believe there is any harm from giving B12 except that it will delay the diagnosis even if B12 deficiency is the cause and this is by no means certain
I guess you have more faith left in the medical profession than me. At least we've given Browny something to chew on, hopefully.
The links aren’t working
If you are referring to the three links in one response from a hidden member, they do work. I have just tried all three. I suspect an issue on your device or with your connection.
However, replying to a member identified as Hidden does NOT work - that means the member has left and will not see your response to them.
Has he increased his folic acid? He needs to. Maybe buy a supplement - it's cheap and hopefully it will help. I take 800iu folic acid per day to help absorb my B12 injections. I had asthma with the B12 injections at first and itchy skin, but both went away after a while
Many thanks ribbon, his folate level is good so should he still supplement with it?
Hi Browny, I read on a PA forum that one needs 800mcg folate with injections. I get weekly injections. My folate was 'good' to begin with, though GP didn't pass on precise result. Sorry, I don't have the link I read. Maybe ask folate question on PA group just to be sure?
I found this quote below on PA group under 'Should folic acid be taken with B12 injections?' It relates to what I messaged you before about the UK form of injection being hydrocobalamin instead of methylcobalamin which is more easily absorbed.
"B12 and folate certainly work together as advised, especially as the hydrocobalamin (injection in UK) needs to be methylised by folate or B12 is useless to body, just excreted. Who said levels "fine"? Doc? Entitled to copy test, check for self folate is optimal, at least 3/4 up range. If decide self-supplement folate, supplement is called folic acid, usually taking max 800 units daily OK. Do NOT take folic acid in isolation, can mask effects B12 deficiency, be careful."
I have been having b12 shots for a year now and I get my injections every month I am currently taking extra b12 injections because all of my symptoms got worse but I have just finished reading a book written by the guy that set up the pernicious anemia society. He said in his book that every one is individual and that if you have had the symptoms of the disease for a long time then they will never go away completely and it's for life you should buy this book it is great its called pernicious anemia the forgotten disease you will get it on amazon. Some people do get better and all of there symptoms will go away I had significant Neurological symptoms for many years. But as I said everyone is individual and will feel and be different.
You will find B-12 level needs to be top of the range I have to keep mine min 1000 , and as you will see on here
many PA sufferers cannot live with 3 monthly injections , that means unfortunatly having buy and self inject to survive . I was diagnosed 1997 but now to avoid ulcerated mouth and tongue every 2 weeks , some GP s subscribe to the Somatoform (its in the mind ) theory , mine told me his Insurers would `nt allow it less than every 3 months . You may find you will have take them head on , PA society will help you with advice
Best of luck in your fight .
Hi Browny-thanks for reply - my reading was 111 so I suppose that's why I had the 6 injections over two weeks - I hope your husband is feeling better - it may take him longer to feel the benefits every one is different - let me know if he does. regards lovely me
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