Ive recently been diagnosed with pernicious Anemia. I'm having 3 monthly B12 injections, Ferrous Sulphate and Folic acid I'm still asleep

[Shergar1810]

My Dr has said he feels I need monthly B12 injections as I am constantly falling asleep. My family doesn't understand & I can't get my Dr to give me monthly B12 injections I feel no Dr that sees me cares and I feel like they are not interested and they don't even listen to me. Please any advice I would be so grateful for

Thank you

Caroline

[Lyntwo]

In my case, my sleepiness did not much improve until my iron levels came up. The B12 injections relieved pins and needles and almost instantly ended brain fog.

One possible thought, has your blood work eliminated other forms of anemias causing either the inability to obtain B12 and/or lack of sufficient healthy red blood cells to transport oxygen?

In other words, does your lack of response merit further investigation as to the nature of your anemia?

You may want to ask your physician about that.

Good Luck

[deniseinmilden]

See the replies by Sleepybunny for all the information you need.

Go to her profile by double clicking on the link above and look under the heading "replies".

Foggyme 's replies will also be particularly useful to you.

If you really can't get anywhere with the Dr's come back to us and we can help you with information to buy your own supplies and self inject. wedgewood is the go-to for that!

We know how bad it is possible to feel... And that with enough B12 and supporting supplements - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium, iron and vitamin D - you should feel much better and be able to lead a near normal life.

[Gambit62 Administrator]

Do you notice any improvement after the B12 injections that then goes away quite quickly. Many people need B12 injections much more frequently than 3 months - suggest you keep a diary of symptoms and see if things are better at any point.

How long have you been receiving treatment?

Monthly injections wouldn't hurt so if your GP is offering them, take them.

[wedgewood]

Do read Thrones posting of today( SUNDAY) . It will be good for you to read it .It will help you !, 😀

[Cherylclaire Forum Support]

Have I got this right, Caroline ?

Your GP thinks you need a monthly injection but won't give you more than one every three months ?

Ferritin, folate and vitamin D levels are often low or below range - which are additional problems, and which can be easily addressed although it does take a long time to stabilise these sometimes- have you had your thyroid checked to see how it is coping ? Since GPs usually can't get more than FST and FT4 done, it might be worth doing a full-panel thyroid postal blood test initially: includes autoimmune thyroid tests anti-TPO and anti-TG.

S/he could have your serum MMA tested, to see if it is remaining raised . This could indicate a problem: MMA joins with B12 in the system, so if B12 is low, the MMA builds up in the bloodstream, waiting for the B12 to arrive. (I'm no scientist, as you can see !)

Raised MMA can also be due to renal problems- which can be detected or eliminated by blood test- or SIBO (small intestine bacterial overgrowth)- which needs a fasting hydrogen breath test to rule out if MMA is found to be high. Otherwise, it's showing a continuing B12 deficiency - and would indicate a need for more frequent injections. My B12 injections were increased to a reloading frequency for 6 months because my MMA remained raised. It took 3 years at least to get to a normal level - luckily, this is not at all usual !

In any case, medical guidelines (NICE, BCSH, etc) recommend injection frequency at 2-3 months - and if you have neurological symptoms, initial injections every other day until no more improvement can be had, and only then reduced to every 2 months.

Of course, in reality, we are all different. Our needs differ, even in families: my cousin does well on one NHS injection every 6 weeks, I need far more frequent injections to control my symptoms to a manageable level. Eventually, that meant self injection for me.

A GP can use the guidelines, but monitor the individual patient, and increase the frequency of injections if they see a need. Your GP has got to the stage where this has become obvious.

Pernicious anaemia and B12 deficiency are poorly understood, and so there is confusion as to "correct" frequency of treatment. Most people here would say that the correct treatment is one that allows you to get back your old self- or at least, get as close as is possible. Aim for that, expect it to take time. It is hard at first, and can get worse before it gets better, but it will get better with the right help.

I used to sleep for about 14 hours, and still need an afternoon nap if I went shopping. I'd throw the food in the fridge, throw my glasses on the table and throw myself onto the sofa ! Desperate 2-3 hour nap immediately. Now, I have about 9 hours and never feel the need to nap in the day.

I wouldn't give up on your GP yet. S/he is clearly not comfortable with your current frequency. Read through the medical guidelines on treatment for PA/ B12 deficiency and present your case for more injections.

If your GP is struggling to understand this condition and how it is affecting you, what chance do your family have ? I'd never heard of B12 before I was told I was deficient in it ! So don't get disheartened right now, just concentrate on you. B12 deficiency (and the other deficiencies) can make you feel very low in spirits. This will change.

Beautiful dog, by the way.

[Shergar1810 in reply to Cherylclaire]

Thank you so very much for kind reply, I will talk to the Dr & hopefully with your advice and the Drs help, I will start to feel better, my main concern is that my Drs surgery was privately owned & everything went wrong there, the NHS brought the 6 surgeries involved in this total disaster, the NHS brought the surgeies in November 2019, but we no longer have full time permanent G.Ps as they had left months before so now we only have locum Drs who just don't listen to me.

Thanks for your advice I will try to get a phone consultant tomorrow to discuss this, as I don't know what to do & I know that partner gets really angry when I keep falling asleep, he has even given up bothering to try to wake me to go to bed so I ended up sleeping in a chair until 5am the next morning so I feel alone misjudged & hated by everyone at the moment as they think I'm being lazy.

Thank you so much for your kindness with this advice it means so much to me to know that other people understand and have this illness. Caroline

[Cherylclaire Forum Support in reply to Shergar1810]

Sorry that your local surgery is in such a mess.

Good really if you can get a GP who cares (whether they know about B12 or not- and most of them aren't taught much about it) and stick with them. Continuity: they get to know you, what you look like when very ill/ when improving, visible symptoms etc. - although all this telephone consultation system is a bit counterproductive there: let's hope it does not become a permanent barrier.

I once had a locum GP appointment to discuss increasing my B12 injections, straight after having my B12 injection. She then sent me for a blood test, telling me it would make no difference. Of course it did. B12 was off the scale by the time I got to the front of the queue at local hospital ! Stays on your record forever- although it hardly matters now, it just shows how little knowledge some GPs have of B12.

Your partner should be worried about the change in you. I would join the Pernicious Anaemia Society - good to have some information, support, and there might be a local support group you could join through them. My local one still meets up on Zoom. You might find the PAS symptoms list useful - it might help your partner understand what you are going through and might be useful for your GP too. Gambit suggested a symptoms diary - I still do this. If I'm having a bit of a bad day, I can look back and remember how bad it was, how far I've come. It helps. Helps too with GPs or consultants, especially if you are experiencing memory problems.

Do still get a thyroid check as this can also cause fatigue. Your low ferritin and folate, which are currently being treated, will need regular monitoring for a while after the course finishes. It takes a while to get to good levels and maintain them. You might need a daily supplement as Denise suggested. I took a daily multivitamin and mineral on her advice.

Ask for help here: there are a lot of people here who have answers because they have learnt how to manage their own B12 deficiency/ pernicious anaemia issues and are more than willing to help others to get there too.

[Auntyp62]

Like you I could not keep awake and was sleeping 18 out of 24 hours and in a fog when awake...sleep clinic diagnosed hypersomnia and wanted me to take drugs. I don’t have P.A. just continual low b12. Eventually by raising all my vitamin levels to the max I feel better than ever. I do also have a thyroid problem and blood tests for that improved when all b vits vitd folate etc levels were raised. Good luck I do know how you feel but you will improve by following advice from these lovely people. Unfortunately doctors knowledge of deficiency is very limited

[Nackapan]

If toh are taking such a large doses of folic acid yohbstatd on your profile. Havd your folate levels been checked again?

Then 200 -400mcg is an adequate maintenance doses of folic acid. Too much can make you ill

Just thought I'd add that point.

3 monthly injections obviously arnt enough.

[Shergar1810 in reply to Nackapan]

Thank you for your really kind advice on this complex illness I know nothing about and the surgery are attend are locum who have no interest in helping me to understand pernicious anemia or how treatment works. I have been so upset about my care. But knowing others understand my situation helps so much. I will try to get a phone consultant with anyone at my Drs surgery tomorrow.

Thank you for your kind help it really does mean so much to me, to know I'm not alone

[keith1954]

What a lovely dog.i wish I could sleep had insomnia for a long time tops 2 and a half hours a night if lucky,get your own b12.

[helvella]

Ferrous sulphate is often not the best iron supplement. Some find it difficult to tolerate. And it is probably a good idea to take some vitamin C at the same time. That helps with absorption.

However, there is reason to consider haem and/or ferritin sources of iron.

I put together a bit of information from round the place in a single document. Nothing fantastic but might be worth a read?

dropbox.com/s/4d885frbic4z8...