Desperate for suggestions and very scared

[Withattitude]

Hi, some of you may remember me posting several months ago as having a bad response to b12. Gambit, you pointed me to a post from Foggyme about similar symptoms, which was really helpful.

I've not had any b12 for two months now as I want to see what is happening with my homocysteine and MMA acid levels. But my neuro symptoms are much worse than when I started b12 injections. The pain and sensitivity in my sciatic nerve is so bad I can't sit or lie on my back, so I spend my days lying on my stomach or standing up. I also can't bear having a duvet on my bottom, so have a frame to keep the duvet off me. I can go for short walks, so that is a blessing.

When I went to see my GP for a refere back to the neurologist, she refused, gave me gabapentin to take and told me to go back after three months.

I don't know where to go or who to turn to.

I live in the Berks/Oxford area and wonder if anyone has recommendations for good consultants who might help?

I'm so scared. The original b12 injections really helped with my symptoms, but after 3 weeks my symptoms came back and then got worse. I also had palpitation, high resting heart rate, massive anxiety and my body felt as if I was on fire. I was taking all cofactors, potassium, magnesium and using hydroxy cobalamin injections.

I know that I have problems with MTHRE and COMP genes but I don't really understand the implication of that.

I asked my GP to contact Dr Dominic Harrington at Guy's and St Thomas' to ask for help, but he isn't returning calls. Has anyone got help from London hospitals?

If anyone can help me in any way, I'd be so grateful, as I'm terrified.

[clivealive Forum Support]

Hi Withattitude I'm sorry I cannot help you with any other advice than have you thought to join the Pernicious Anaemia Society?

At the moment it costs just £20 for one year's membership and they will possibly contact your doctor if you ask them to.

Hopefully others on here will be able to give you good advice.

Meanwhile, I wish you well.

[Withattitude in reply to clivealive]

Thanks Clive. I'm already a member of PAS.

[PAS-admin Partner in reply to Withattitude]

You can call the helpline for advice if you are a member.

Just a quick queston: you wrote you were taking cofactors; were you taking potassium supplements? As high potassium can give palpitations (and other problems) That's why it should only be taken under medical supervision.

Dr Harrington is not a medical doctor, he doesn't take calls from GP's.

[Withattitude in reply to PAS-admin]

Thank you for replying. I suggested my GP speak to dr Harrington as several people on here said that he'd been very helpful to them. Who would I ask to speak to if I phone PAS? I am a member.

No I wasn't taking potassium supplements, just lots of food with potassium in.

I'm grateful for any support. Apart from the long, slow death of my mother, this is the worst experience that I've ever had.

[PAS-admin Partner in reply to Withattitude]

Just ring the office, they'll help you.

[Foggyme Administrator]

Hi Witharrirude. This is just dreadful 'care' on the part of your GP. I'm just wondering on what basis she refused to refer you back to a neurologist?

Has she offered a referral to a pain clinic? She should do. A pain clinic could, perhaps, organise for your to have a pain block to stop your dreadful pain (this involves injecting into the nerve to stop the pain signals getting through). This is often very effective. And there are also other pain control mechanism that a pain clinic can try. They have much more expertise in the area, than a GP, so definitely worth insisting on a referral.

You say that your symptoms came back after three weeks...was this because your B12 injections had been reduced following the loading doses? If so, perhaps you need more frequent injections. If it's the case that you were on frequent doses and your symptoms still cam back, it could be that you were experiencing what a lot do - the symptoms seem to get worse before they get better.

I don't know too much about gene mutations but I understand that having MTHFR can cause problems with the methylation cycle. This means that your body is unable to use B12 properly at the cell level due to its inability to process folate property (which the B12 needs to work). fbirder often posts about this and has outlined the fact that taking methyl folate instead of folate (or folic acid) addresses this issue (when taken with Hydroxocobalamin).

Not sure about the COMP gene but I expect someone will pop along and advise about this.

If you believe that you have as sensitivity to the B12, there are two specialists listed on the PAS website who deal with this. It might be worth either you or your GP ringing or emailing one of them for advice (I believe some have had success via this route).

I think (but might be wrong) that Dr Harrington works in the labs so it may be that he is not easy for GP's to reach. Or he might simply be on holiday.

Some here have said that gabapentin has been effective for their pain control but I believe this takes 6 - 8 weeks to be fully effective. So it might be worth persevering with this in the meantime.

Finally, is there another GP in the practice who you could see. Or maybe change to another surgery (though I know this is not an option, for some).

Withattitude, I'm not surprised that you're terrified. Being in constant pain has a terrible impact on the human body so I'd be surprised if you were anything other.

I'm constantly at a loss to understand how GP's can be so cavileer with patients health and wellbeing and would dearly love to inflict a little of what you suffer on your GP 😀.

I really hope that you manage to get your pain under control - sooner rather than later. If you have a long wait for a pain clinic referral (I'm going to be optimistic and assume your GP will oblige), then it you can, it might be worth trying to get the nerve block done privately (this would mean two, possibly three private appointments). But how sad that this even has to be suggested, since it's the very least you could expect from your GP...and the NHS.

I'll be thinking of you Withattitude...please send me a PM if you want to rant or simply want a chat.

Take very good care and I sincerely hope to hear better news soon.

Many hugs 😀😀

[Withattitude]

Hi Foggyme. No The symptoms came back, even though I was injecting more frequently - daily at one point. I had an MRI scan last Fri as I managed to get a back pain referral through my husbands private medical cover. He's retiring next year, so that option will disappear. I see the back pain consultant on Thurs, so will see what she says. I could scream with frustration, especially when I see programs on tv where the dr is sorting out patient probs from the bottom up. Oh, how I wish we could all have that.

[Foggyme Administrator in reply to Withattitude]

Really pleased about the scan and referral Withattitude.

Yes, I agree about the frustration...sorting problems from the bottom up is not something people here will recognise. But it would be so easy to do...if there was a will!

Good luck and please let us know how it goes.

[Withattitude in reply to Foggyme]

Thanks Hi there, how long did you persevere with your b12 injections for? Did you try methyl as well as hydroxy, I can't remember.

[Foggyme Administrator in reply to Withattitude]

Hi Withattitude. Still persevering...I have 1mg Hydroxocobalamin every eight weeks and currently SI 0.5mg methylcobalamin every other day. Once I've finished my small stock of Methyl, I'm going to do a trial of 1mg Hydroxocobalamin and take methyl folate. Will try once weekly for a start and then reassess. It'll be a bit of trial and error so will see how it goes.

If I get worse, I'll up the hydroxo to alternate days and if this has no effect, I'll scratch my head and have a re-think 😀!

Take vary good care x

[Withattitude in reply to Foggyme]

Do you have the support of your doctor and are you still in pain? Where do you get your methyl from Foggyme?

You take very good care too. I so appreciate your support. X

[Foggyme Administrator in reply to Withattitude]

Hi Withattitude. In a word...no. Doctor is pretty useless...most support comes from the folks here and very good family!

There arn't any other surfers I I can change to so I'm stuck with what I've got...trying to 'educate' them but like most here, I'm finding a long hard battle.

I get my Methyl from IntraVita, mainly because it's the only place I have found so far that has single dose ampoules.

I have had some from B12d.org in the past but they now provide 5mg single dose ampoules and suggest that the single ampoule is used to draw up five doses! Really not happy to do that!

Do you know, one of the best things about this site is that people can feel like s**t, but still have time to ask about and help others! So thank you Withattitude...I will take care. And much of the same back to you 😀😀.

Hugs xx

[natcap1 in reply to Foggyme]

Hi Foggyme,

I'm trawling this site to pick up tips and information to help myself deal with my current situation. I saw that you have been using methylcobalamin. Are you still using this and sourcing from IntraVita? I am on weekly hydroxo and my symptoms seem to be worsening so I thought I had better up the frequency. However, like Withattitude above it really doesn't seem to go down well, I feel worse in terms of tingling, which I feel is repair, but the hydroxo seems to cause palpitations, anxiety and burning and I can't sleep. So I was thinking of trying cyano or methyl.

While a year ago my loading doses seemed to fix the foggy head and difficulty concentrating, this has now returned after 6 weeks of the weekly frequency (I did this because I had gone down to 2 monthly injections and my other neurological symptoms returned). I don't know whether this is a sign that I need more B12 or that I'm getting worse before I get better (do people really get that much worse?). Problem is lack of sleep could be causing this too. Any wisdom from you would be appreciated.

I hope your symptoms are in check.

[natcap1 in reply to Withattitude]

Hi Withattitude,

I hope you managed to get the treatment you needed for your symptoms and are finding some relief. This is a really horrible disease isn't it. I am looking for people who have not felt good on hydroxocobalamin injections to ask if they managed to find an alternative that works for them. I have had, and am having, a similar reaction to you to the injections - anxiety odd heart palpitations, hotness, which means I don't sleep at night. I can't afford to let my B12 levels drop as my symptoms seem to be getting worse. How have you dealt with it?

Take care.

[fbirder]

Most people with a single copy of the MTHFR (C677>T) mutation (heterozygous) will notice zero effects. If you have two copies (homozygous, like me) then you may benefit from supplementing with methylfolate instead of folic acid.

The COMT gene doesn't really have anything to do with B12. It codes for an enzyme that breaks down catecholamines, including neurotransmitters such as dopamine. I've not looked too much into the effects of COMT mutations as, although I have two of them, I am heterozygous in each case. I don't seem to suffer greatly from any of the reported effects for homozygous people.

[Withattitude in reply to fbirder]

I'm homozygous for COMT. Still trying to understand.

[Gambit62 Administrator in reply to Withattitude]

Ah! COMT makes more sense in relation to B12 - it would appear that methylated forms of vitamins are contra-indicated if you are homozygous for COMT. As far as I have been able to work out this is because the processes that COMT regulates are actually most efficient when the processes are operating in mid-range. If you are homozygous for (one?) of the COMT variations (MB-COMT) and it causes problems with regulating neuro-transmiters in the brain.

ghr.nlm.nih.gov/gene/COMT

I know that is really over-simplified and not very well explained but basically you shouldn't supplement with methylated forms of B vitamins.

I think this is the article that looked in detail at how the processes worked and talked about needing to be mid-range but it was really hard going - was looking into it to try and understand why some people seem to have big problems with methylated forms.

jbc.org/content/early/2014/...

[Withattitude in reply to Gambit62]

So hydroxy is converted in the body to methyl and adenosyl cobalamin. So if I'm having every other day injections of hydroxy I could, in theory be producing way too much methyl for my system to handle?

If you were in my shoes Gambit, what would you do with this scenario?

[Gambit62 Administrator in reply to Withattitude]

you should be okay with hydroxo - it would be having methyl injections that would cause problems - and you may be better of with plain folic acid rather than folinic - which is, I believe a methylated form ... sure fbirder can correct me if I am wrong.

if you have been on daily injections for a very long time then I think I would try stopping for a week or so and see if things feel as if they are getting any better. You'll still need to top up your B12 levels periodically but you need to find the point at which things are stable for you.

biochemistry isn't my field so I'm not entirely certain about how methylated B9 form fits into the COMT cycle.

[Withattitude in reply to Gambit62]

So not helpful to use methyl folate then. Do you know Gambit If that is different to folinic acid?

[Gambit62 Administrator]

on the genes - I came across this reference site a few days ago - don't think it has been up very long - around start of September - but it does give quite an easy to understand explanation of each of the gene variants

ghr.nlm.nih.gov/

type the gene variant into the search - I couldn't get anything to come up for MTHRE so wondering if that is a typo and you meant MTHFR

[pvanderaa]

If you’re receiving cyanocobalamin, you probably need weekly injections. That’s why your symptoms returned so soon.For hydroxocobalamin, it should be monthly.

What supplements are you taking and are you keeping a logbook of all your symptoms relative to the day you get your injection. Treat the injection as day zero each cycle and compare the same day each cycle to monitor progress as otherwise the roller coaster ride makes it hard to see any progress day to day.