More blood tests

[mesadies]

So after b12 dropping over three months from 869 following loading injections to 400 and being told no further action today I woke up with bruising again but different to the clusters I was gettingso I managed to see the doctor today and asked if this could be b12 related and I was told no get yourself some b12 supplements from hollandaise and Barrett and vitamin D tablets and in meantime they will test my bloods for vitamin D, platelets and thyroid. I did say what if I am not absorbing b12 anymore the vitamin tablets would be a waste of time but she said it's better than nothing! Feeling a bit fobbed off b12 wise

[clivealive Forum Support]

Hi mesadies was your Folate tested?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

/

[mesadies in reply to clivealive]

Hi Clive thanks for reply. My foliate was tested three weeks ago and was 3.8 which they said was fine but will retest that alongside my b12 in three months

[clivealive Forum Support in reply to mesadies]

Perhaps you can increase your intake of leafy green vegetables, sprouts, broccoli, asparagus, spinach. peas, beans etc for added Folate as you are at the bottom end of the range.

[Gambit62 Administrator]

trying to use serum B12 as a guide to treatment after loading shots is useless - the shot introduces a new factor (the possibility that you have reacted to high levels of B12 in serum in a way that inhibits the B12 getting from your blood into cells - meaning that the normal range no longer applies.

If you are based in the UK then you should push for maintenance shots to be given per guidelines - which would be at least every 3 months - you obviously have an absorption problem and maintenance 3 months without retesting of levels is what the guidelines recommend (though many find they need more frequently than three months)

link to guidelines but your GP (if in UK) can access through the BNF

onlinelibrary.wiley.com/doi...

you could also point them at the area of the PAS website specifically geared towards medical professionals.

pernicious-anaemia-society....

Having an absorption problem doesn't necessarily mean that you definitely won't absorb any B12 from tablets - just that the absorption will be a very small amount of the amount in the tablet so you will need to take large doses - 1000mcg per day as a minimum - to stand a chance of getting enough - but this really needs to start immediately after a loading shot if it is going to work as a way of keeping your levels as high as you now need them. It's unlikely to be an effective way of raising your levels. And it doesn't work for everyone though one large scale study in Canada did find that many patients preferred high-dose oral as a treatment method.

Not sure that Holland and Barrett actually carry this strength of tablet (1000mcg) - but there are plenty of on-line sources. Other things that you can try are sublingual sprays, nasal sprays or skin patches.

I'm not surprised that you feel 'fobbed off' but I think it's more ignorance/desperation than wilful - not that that really helps with finding a way through to a proper solution.

[mesadies]

I do feel it is the GPs trying to save money and I feel they look at me as trying to waste their money. So much said on this site makes sense but I feel taking on the GPS is impossible. Oh what to do what to do!

[Gambit62 Administrator in reply to mesadies]

I know what you mean - having some similar issues with thyroid treatment at the moment.

Your choices are

a) to try the supplements and see if they work

vitamin D could be a good idea anyway.

b) write to GP just pointing out the guidelines and pointing them to the PAS website

c) look at treating yourself

d) do nothing

and there are going to be others.

right now you'll be feeling really low but actually doing one of a) - c) might get you to a position where you feel as if you are slightly in control again - and its the helplessness that is likely to be the biggest issue. I really wouldn't recommend d).

testing for thyroid wouldn't be a bad idea either - given that it looks as if something like 40% of people with PA go on to develop autoimmune thyroidosis (hashimotos).

[mesadies in reply to Gambit62]

Hi gambit I already have under active thyroid and I have been on thyroxine for almost 7 years. You are right though I do feel pretty low and the feeling of exhaustion all the time just isn't helping. You are also right that I need to try something so I have started the vitamin b12 1000g and vitamin D 25g today as advised by the doctor but I am worried it will give false results at the next blood test in 3 months and I will be feeling even worse and they will still be going by the screen and not my symptoms but I am only going to find out if supplements help by trying them I guess

[Gambit62 Administrator in reply to mesadies]

you can't do anything about the next set of blood test results until it happens so there really is no point in tying yourself up in knots over whatifs - I know that is easy to say but it is also true.

if your GP is determined to use serum B12 to say you are okay without actually bothering to find out how you are feeling then there are actually fundamental issues there that supplementing just isn't going to impact on - same if they are relying on TSH to determine if you are okay on thyroid meds without actually asking you how you feel Its a proxy measure and an indicator - it is far from being the full story and normal range really doesn't apply in the same way once treatment has started.

vitamin D doesn't seem to have the same issues so if supplementing with that works that's good - and assuming that you mean mcg for both of the dosages above

[mesadies in reply to Gambit62]

I get what you are saying totally but the doctor hasn't once asked me how I am feeling since the b12 loading injections and I would like to be able to just trust in the doctors without feeling like they are being underhand but seeing as they don't even want to know what symptoms I have its a bit difficult, I do appreciate that me going on about it won't help either lol. All I want is to feel better and not be feeling like I have early dementia which is certainly how I was feeling before the loading injections and I don't want to return to feeling like that, it is scary and I am definitely already starting to feetd that way again with memory and confusion issues

[Gambit62 Administrator in reply to mesadies]

totally get where you are coming from - sounds like my current problems with thyroid - just look at the TSH result and don't ask me how I'm feeling ... with the result that I go off piste and up my dose and then tell them I've done that because I don't feel right - now on 75mcg and feeling that I'm pretty close to the right level but need to leave it a few more weeks to be sure. - started on 25mcg and that just made me feel much worse than I had been and when I was first starting out on treatment for B12 absorption problems. I supplement heavily ... and I also self inject. There are plenty of options - would like to really work with the GP but letting them know what is going on is probably the next best option.

[mesadies in reply to Gambit62]

I am on 100mcg of levothyroxine and I did feel good on that until my b12 dropped low. I just need to get that sorted now. I am not sure I would cope with self injecting. Do you need prescription to be able to buy b12 for self injecting? I will carry on trying to work with the gp. I hope you get your thyroid sorted

[Gambit62 Administrator in reply to mesadies]

you need a prescription to source anything you inject for medical reasons in the UK - however, many on this forum source from outside the UK - particularly from German on-line pharmacies. Its a relatively cheap medication - one injection costs about £1- the main thing that costs the NHS (assuming that they aren't letting intermediaries rip them off for the cost of the medication) is the cost of the nurses time. I didn't think I would cope with self injection - having had problems with anti-co-agulants after an operation - but now it's pretty much second nature.

Feeling that I'm getting quite close with the thyroid and levels that I need - certainly have more muscle strength and a lot less breathless than I was on 50mcg.

If PA is the cause of your B12 deficiency it can affect your ability to absorb levo - personally I take mine with a little lime-juice in water to give a little more acidity to help with the absorption. People do also often report that they need to adjust levo down slightly when they start B12 injections. It might be worth getting hold of your last test results for thyroid and posting them on TUK

healthunlocked.com/thyroiduk

[Serendipity16]

I had the same problem when diagnosed. Loading doses then monitoring and no supplements for a year until b12 below 200 again. I then got a new batch of loading doses, and three monthly injections ever since. Cause of deficiency is undiagnosed.