I've gathered lots of useful information from this site over the last couple of years since being diagnosed, so hoping for a little help/clarity.
My diagnosis came about 3 years ago after my doctor ran a range of tests after I had reported fatigue and depression. I was taking oral methylcobalamin initially after loading injections, but then switched monthly intramuscular injections which helped a lot.I am now working in South Korea and the doctor tested me again as wanted to see my levels before giving any injections. When these came back, he saw my B12 level was very high so told me I did not need another injection until May. I've attached my latest blood results here if anyone can help my understand. My new doctor speaks little English, so I'm not able to discuss this with him, and I live in a place with very few healthcare options.
Over the last few months, I've noticed my fatigue returning, along with some depression and irrational irritability. I have also been having some memory problems, issues recalling words when talking and some occasional speech problems (fumbling words and sentences). For context, I am 41M and fairly active, so I can only really attribute these things to PA.
Any help that anyone could offer would be hugely appreciated.
Thanks in advance,
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JohnBabyJohn
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To add, after posting, the sidebar threw up a few extra past posts that I had not seen and I can see that although my B12 levels are high, the doctor should not be taking me off the injections. I may need to find a way to self inject, but may have some problems because of where I am.
I also wondered if you could find out if there are any national or regional guidelines for treating PA and B12 deficiency in the country you are working in.
Folate
Your folate result is within the normal range but not that far up the range.
Might be worth asking your doctor if you'd benefit from taking a folate supplement with the RDA (Recommended Daily Amount) in it.
Maybe look at your diet to see if you're eating enough folate rich foods.
It's possible to show symptoms of folate deficiency with a normal range serum folate result and the symptoms of folate deficiency can overlap with the symptoms of B12 deficiency.
Thank you so much for all of your information and advice. This is all extremely helpful, but above that, moral support from the forum is extremely valuable.
The doctor said nothing about the monocytes, and I was wondering about that. I think I definitely need a follow up with another doctor. The information you have provided will be a big help.
Hello John baby John, I didn't read all the replies maybe somebody already brought this up, but I was wondering if you're still in South Korea, can you get B12 there legally or do you have to have it shipped there? I think most of us get our B12 from Germany so you might want to check if they ship to South Korea. It definitely sounds like you need to self-inject. Good luck. Oh and my doctors never look at my MCV and my MPV which are low. They don't think I'm anemic but if you look at my MCV and my MPV and my MCH all of those things suggest megaloblastic or microcytic anemia.
As sleepy bunny says , your doctor is completely misinformed about P.A. There is no need for testing once treatment had started . P.A should be treated with injections FOR LIFE !
We have many doctors here in U.K. who are also misinformed. As you have been reading posts on this forum , you must realise that most of us have to self inject to keep well . If you cannot get your doctor to change his/ her mind , I would suggest self-injecting
It will be difficult to find a German online pharmacy ( that’s where we have to get our B12 ampoules from ) to supply you in Korea . I woukd get a friend in Europe to buy them for you and send them in to you . Or order them yourself , but have them sent to a friend in Europe ,,who would forward them to you .
"Measuring vitamin B12 values during or after treatment, with the aim to measure the efficacy of the treatment, is of no use. (See also point 3 and 4, note 2)
Supplementation (1000 mcg hydro(xo)cobalamine B12 injections, 2 times a week intramuscularly or deep subcutaneously for five weeks, or once a week for ten weeks) is primarily done when deficiency has been diagnosed. When B12 values are measured again, after the injections, they should be very high. This cannot be taken as a reason to stop the injections.
This also applies for testing MMA and homocesteine. If these values have dropped to standard level it is only an indication that treatment is effective and should not be used to measure treatment efficacy (’values are good, let’s stop treatment’). Supplementation can only be phased down towards a maintenance dose when symptoms have largely disappeared. Phasing down is a slow process. Stopping treatment entirely (because B12, MMA or homocysteine values are back to standard) without the causes having been removed is not the correct way of treating a patient. Symptoms will return (see point 3). A sudden return to the maintenance dose is often ineffective, particularly when the patient was experiencing symptoms long before the diagnosis was made.
Healing of tissue takes a long time (the exact period varies per patient). Symptoms may continue, even when biochemistry has become normal again. When there are neurological symptoms we advise treatment of injecting twice a week for one or two years (source: Farmacotherapeutisch Kompas en klinische ervaring B12 Institute)."
That's certainly different from other asian countries. You may have a problem sourcing B12 then. However you do have the consolation of living in a really beautiful country.
I have Pernicous Anaemia. My Mother also had this condition.
She had been given B12 injections for a number of years and then GP told her she needed no more injections as her blood results were fine.
I said 'that's good Mum'.
I am now sorry to say that it was not 'good for Mum' as she developed stomach cancer which I'm convinced was the result of her B12 injections being withdrawn.
I also have Pernicious Anaemia plus other 'autoimmune conditions'' so I ensure that I have a monthly B12 injections now, instead of quarterly. My GP has stated I can have many as I feel I need.
Thank you all for your advice and support. It really is most appreciated.
I am actually from the UK, but I teach internationally so my medical access depends on current location.
I have ordered some ampoules of B12, and syringes to be shipped into the Korea, and will self-inject. I will also take all of the information and seek a second opinion from another Doctor in a larger city, as well as talking to my insurance provider.
My advice would be get refferd to an endocrinologist, have them do the tests and not your GP as they have very little knowledge on b12 and PA.
Then the endocrinologist can write to you GP with the right treatment and care plan and any issues with getting your treatment you can contact the specialist and they will sort it.
Hope this helps, I've had first hand of this too. It's very frustrating and when you are not well it can really impact you mentally too.
Might also be worth seeing a neurologist and haematologist and a gastro enterologist.
I'd add that seeing a specialist is no guarantee of better treatment.
Have you looked online for research articles about PA and B12 deficiency for the country you are in?
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with GPs.
Some links may have details that could be upsetting.
Unfortunately, it is quite hard to find local information as Korea generally publishes in the local language. I'm asking for some native help with this though.
I'm working my way through lots of the resources you have posted.
In my opinion I don't think going forward with this in a foreign country is worthwhile. We have enough trouble getting the correct treatment in the UK. You will probably go through a lot of stress for very little reward.
hello John
You can buy B12 ampoules from this pharmacy in Germany - Arzneiprivat
However they don’t ship to UK
The company who make the ampoules are called Hevert. I learnt from a nurse friend how to self inject. So happy to be able to bypass doctors (most of whom don’t even acknowledge how serious B12 deficiency is).
If you’re interested I can also send you links to buy syringes and needles.
i had this problem in U.K. just as you describe. I had to see 3 doctors before a locom doctor (by luck) started B12 injections again. The haematology nurse at my local hospital told me i have high levels of B12 in my blood because i am unable to absorb B12 so it circulates in my body. It took me nearly a year even though my symptoms got progressively obvious, it was very upsetting as i was aware that neurological damage is irreversible. Sympathy and good luck
Sometimes people have high B12 because of certain health issues. In your case, it is because you have been getting B12 injections. I have had high B12 tests because of that too. I would say do not test and keep getting injections. You know why the B12 is high in the test. Your body still needs it if you have pernicious anemia. I get injections every 3 weeks from my husband because a month is too long: my toes start getting tingly by then. In BC, I do not need a prescription for injectable B12.
In UK, some people turn to self treatment if NHS treatment not enough.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people, some resort to self injection (SI).
I haven't tried private injections from beauty salons as not sure how sterile the conditions would be. High dose oral B12 has little effect on me.
We all know that oral B12 does not work. The intrisic factor in our stomachs not longer works and we can take 100s of tablets and our body throws them out. It seems so many of us are suffering because our GPs do not understand. I remember when Covid started I was told that our bodies store B12 for a year! How stupid is that? I used to have injections at first, once a week, gradually building it up. When I was caring for my husband I asked for my injections to be increased - from 12 weeks to 10 weeks (which he did) When I lost my husband I was told that 'the guide line' from the 'experts' ?? Who the heck are they? Do they have P.A. that we have to go three months. I told the doctor I could not and felt ill, and he replied. "It is all in your head!" Is there no one who understands what our bodies need?
The big question is whether injectable B12 is sold over the counter in South Korea. If not, and it is a prescription item, this is simple but might be helpful.
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