Newly diagnosed advice please

[shortytlc]

Hi just little query really, was diagnosed over 10 years ago with fibromyalgia, medication over time been increased with more currently I take codeine, naproxyn, ammitriptaline, omeprazol, in june I had bloods done results =

Vit d 25, iron 20, binding 68, saturates 29, heamoglobin est 151, ggt 34 b12 200 (never been above 400 in 6 years) also parietal cell auto immune anti bodies. So was diagnosed with vit d and b12 deficiency and pernicious anaemia, given vit d daily at 800iu, and b12 loading doses, since this ive had another b12 jab. Havent really felt any beneifits so went to see the nurse who ordered more bloods, only got a few back Upto now

vit d 56, ggt 42, b12 2000, folate 6.6 and ferritin 17

Doc has seen them and happy apart from ggt re test in 6 weeks needed.

Im thinking my folate, ferritin are too low to work with the b12? ( never gave me iron results but thinking the same) and vit d still needs to be higher, im hoping theyre still going to give b12 jabs.

any advice please

Thanks

[shortytlc]

Sorry meant to say I have pins and needles in hands and feet have problems with many joints also have problems with neck doc has scanned and found there is problem with spinal chord, absolutely shattered and fed up with it all

[Foggyme Administrator]

Hi Shortytic and welcome. Are you able to post the reference ranges for your blood results (the figures in brackets after your results). Different labs use different scales of measurement and hence different reference ranges so it's a bit difficult to comment without first seeing what reference ranges they're using.

Can I just say (while waiting for the ranges) you have neurological symptoms and by the sound of it, you should be having B12 injections much more frequently..every other day until no further improvement. Your GP and nurse probably won't know that.

You will certain need to chase them for more B12 injections...but more of that when the reference ranges have been posted...

In the meantime, you could read the PAS pinned posts to the right of this page when you log on. They will give you lots of information about B12 deficiency and PA, and also give details of the treatment you should be receiving (you're not getting it at the moment).

It might also be a good idea to think about joining the Pernicious Anaemia Society...I think it sounds as if you need to get started on intensive B12 treatment very quickly and Martyn Hooper, chair of the Society, will be able to intervene on your behalf, very quickly, if your GP refuses to give you what you need: more B12.

Anyway, if you can post the reference ranges, folks will be able to offer advice....

Thanks 😀

[shortytlc in reply to Foggyme]

Thanks for the reply and welcoming me too. Will post references with my levels again sorry didnt think. I had seen about the loading doses if neurological symptoms and asked the prescribing nurse I went to last week about it she didnt know anything thanks for the info too

24/5 tests

Ranges in brackets

B12 200 (223-1132)

Vit d 25 (50-125)

Iron 20 (11-30

Binding 68 (45-72)

Saturates 29% (no range given but have been told if iron deficient the gap between between binding and saturates widens)

Heamoglobin est 151 (112-148)

Gamma gt 34 (7-32)

26/10

B12 2000((223-1132)Vit d 56 (50-125)

Serum folate 6.6(4.6-×18.7)

Ferritin 17 (14-186)

Ggt 42 (7-32)

I am going to go back and speak to the nurse, as im worried naproxen is effecting the ggt, and worried that other meds are having an effect on other bloods ( they dont really help much anyway ) always ache tired and its starting to get to me

[Foggyme Administrator in reply to shortytlc]

Hi again Shortylic. Thanks for posting the reference ranges...so, to the bloods first...

Okay...you're right, vitamin D needs to be higher (roughly 100), folate needs to be higher (in top third of the reference range) and a ferritin level 17 will make you feel very ill indeed (needs to be 80-100). It's good that they're keeping an eye on GGT - might indeed be the meds you're on.

So yes...you need folate, ferritin and continued vitamin D supplements. Folate (as you recognise) is essential since B12 and folate work together and you body will not utilise the B12 properly if it hasn't got good levels of folate.

Now to other things:

Just a few tips:

Your nurse or GP may try to stop your vitamin B12 injections with spurious claims that at 2000 your levels are too high, it's dangerous, you have B12 toxicity. This is rubbish. To put this in context, for effective neurological repair levels need to be 1000 (some say 1500) and your current levels are only a reflection that you've had B12 injections: it's what should be expected and nothing to worry about. (I say is simply to forewarn you, just in case. You'd be surprised how,often it happens 😖.

You have PA and the treatment is B12 injections - for life. No stopping.

Next - I'm really don't see how your GP can be 'happy'! You still have neurological symptoms and you are not being given the correct B12 treatment (as outlined above). Failure to treat with this regime can result in potentially irreversible neurological damage. Your GP and nurse obviously don't know that. Both your nurse and doctors will have a book on their respective desks called the British National Formulary (BNF) and that gives the guidelines for the treatment of PA with neurological symptoms (every other day following loading doses, until no further improvement) sometimes for many months. They will have to read further than they usually do - it's the second item down. They can read it while,you are there.

Next - you say that they have 'found that there is a problem with the spinal cord'. Have they said what the problem is? There is a neurological condition called Sub-acute Combined Degeneration of the Spinal Cord (if you join the PAS there is information about this in the website library. If not, you can look it up online). It's caused by untreated or undertreated B12 deficiency. It may (or may not be) that this is what you have. Don't know - but you certainly need to ask the question. And if they don't know the answer, they need to find out 😀.

This, together with your neurological symptoms, means that you should be referred to a neurologist (if you have not seen one already). Insist they refer you if they have not already done so.

If I was you, this is what I'd do: print off the information in the PAS pinned posts (including the symptoms checklist - proof of neuro symptoms), highlight anything that is relevant to your case (treatment regime for those with neurological symptoms etc), make an immediate appointment with your GP (not the nurse - she can't increase the B12 dosage without the GP's authorisation), show the information (your evidence) to the GP and insist that you are treated according to the guidelines. You might have to be quite firm and insist that you are worried about the potential for irreversible neurological damage if you do not receive the recommended treatment.

Once your GP has seen your evidence, he / she should prescribe the additional B12 injections to start immediately. If they do not, they are being negligent (well, actually, they are already negligent). The every other day regime should only stop once you are sure that no further improvement is taking place. Some people keep a symptom diary so they can keep track of what's going on.

If this does not work I suggest that you join the PAS and telephone Martyn Hooper (details on the PAS website), who can intervene on your behalf. I say that because it would be quicker than going down the alternate route, which is to put your request in writing and then wait for a response for your GP. I really think that the sooner you get appropriate treatment, the better.

If what I've written comes over as being a little terse, apologies 😀. It's because I'm really quite cross on your behalf. It may be that your fibromyalgia was misdiagnosed and what you actually had was B12 deficiency / PA - though there will never be a way of knowing this (unless you have blood rfaults going back some years). And I may be wrong (I hope I am) but you'd be surprised at how often this happens.

I'm really not surprised when you say you're shattered, fed-up, and that it's starting to get to you. Everybody here will know exactly how you feel. It's happened to many (probably all) of us too 😖. Just know that there are people here who can support and help you. Just post whenever you have any questions...to let us know how you are...or even just to have a good old vent.

Good luck with your GP and shout up,if you need any more help.

Take care x

[shortytlc in reply to Foggyme]

Thanks for all the information at least I know im not going mad now I have been keeping results for the last 3 years and the results are all around the same figures feeling a bit duped now. If I remember rightly with spine its spondylitis near c3/4 and some spinal stenosis ? Doc did mention they would send me to specialist if I was interested in having the operation but its very high risk so I decided not to go ahead. Ive not been referred to neurologist dept off to the doctors this week I think . Many thanks again will let you know how I get on enjoy the rest of the weekend

[Foggyme Administrator in reply to shortytlc]

Thanks Shortytic. Keen to know how you get on. You enjoy the rest of the weekend too 😀

[shortytlc]

Hi again

Finally got to see a doctor as the nurse thought it was best, anyway she has agreed to give me some folate and iron tabs, and doubled my dose of vit d so good news there although she was a bit dubious of the link with iron, folate, ferritin and b12 is there a NHS recognised guidance on this at all? as she did say she would like to see the information. was a no go on the jabs tho she said ive got over 2000 in body unfortunatly my printer is out of order so havent managed to print out the above recommendations