Self treatment advice

Hi folks,

Well my GP says I clearly have ME/CFS as my blood tests show I have nothing else wrong with me.

I have PA in my family and most of the symptoms, including some neuro ones, my GP wasn't interested in the new guidelines and has refused a therapeutic trial of B-12 injections.

Having discussed this over the phone with the Mr Hooper I feel I have two choices.

1. Pay for MMA, Homocysteine and Holo-T tests. If they show up a problem my GP says she will refer me to a haematologist, who may or may not treat me based on those results. (From what I've read this could go either way) I have been supplementing too, so this may skew the results. I've only taken Berocca but for a really long time (10 years). Two Serum B-12 tests 5 weeks apart showed a drop from 557 to 488 after I stopped taking it. How long should I wait if I do go for these tests?

2. Forget getting a diagnosis and start self-treatment, as I may end up doing this whatever the tests show anyway.

I could have the first injection done by a private doctor to ensure no adverse reaction and then continue myself.

Quite honestly, the thought of having to do the loading doses on my own when I have no medical experience is scary. Between the brain fog, exhaustion and my (already diagnosed) GAD (generalized anxiety disorder) I'm afraid I'll get it wrong.

Also, if I go down this route how much folate and iron should I take along with the B-12? What type of injection should I do? The thought of trying an intramuscular injection on my own with no experience or training is terrifying.

Any help or advice much appreciated. I'm just about managing to keep working at present, I teach a few hours a day but sleep a lot of the rest of the time. With each student I feel like I'm swimming through treacle to try and stay coherent through the fog.

(Thyroid, diabetes and coeliac tests are 'normal')

Amy

25 Replies

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  • Hi AmyG6500

    {{{Hugs}}}

    How I sympathize. I don't feel I can advise but I may well be in the same situation in a couple of weeks time. It's not going to be an easy decision, I'm sure

    As for injecting, I can understand your anxiety. I'm a retired nurse and I remember how difficult GIVING your first injection can be, let alone giving it to yourself. I'm not sure I'll be able to do it either, tbh, and that's having had years of experience as a nurse ;)

    If you lived close enough to me, I'd gladly help teach you but doubt that could happen. As I said, I may well be in the same situation soon.

    Others on here have conquered that battle so it clearly is possible. I'm sure once you have tried it, having been taught how to do it, you'll be fine but that doesn't help your current anxiety.

    Others will surely be along to recommend how to go about this, where best to buy all you need.

    Best of luck. I'll be keeping an eye out for your progress. Good luck :)

    J

  • Thanks J, I'll keep you posted. I'm in Portsmouth btw.

  • Unfortunately, tooooo far ;) I'm in East Anglia ;)

    J

  • Hi Amy, I can help you x I'm in Southampton and I si . On my 4th injection and no medical background, I've overcome the thought of doing it myself as you get to the point you need the b12 x private message me if you would like me to help.

  • I will! Thanks so much xx

  • please see pinned posts for details of how long you need to be off supplements - generally 3-6 months.

    The drop in serum B12 isn't necessarily significant - and could just be within the accuracy of the tests - what you would really need to see is a clear trend over time to draw any real conclusions.

    I am sorry to hear about your GPs attitude. Have you tried putting guidelines etc in writing or did you just talk to your GP?

  • supplementing iron isn't necessary unless you have an iron based anaemia as well as B12 - not everyone with B12 deficiency has problems with iron levels. Folate - best source is food - but if your levels are low then a supermarket supplement - 200-400mcg isn't going to do any harm.

  • Thanks Gambit62 (I haven't figured out how to tag people's names yet)

    I wrote a letter to my GP to explain I'd been in touch with the PA society and included the new guidelines. Then I made an appointment to discuss it with her. She wouldn't even consider that there might be a problem when my serum B12 is high. She also said the only guidelines they are obliged to follow are the NICE ones.

    I'm on iron anyway, I've had iron anemia for 20 years. I take a maintenance dose daily.

  • words fail me in relation to your GP - even the NICE guidelines indicate the importance of symptoms rather than just test results - though they only mention two two sets of symptoms these are given as examples

    Diagnosis of anaemia caused by vitamin B12 or folate deficiency is made through history, examination, and investigations, including taking a full blood count, blood film, and measuring serum concentrations of vitamin B12 and folate.

    If vitamin B12 deficiency is found, serum anti-intrinsic factor antibodies should be checked.

    If there are strong clinical features of B12 deficiency such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal serum vitamin B12 level, serum anti-intrinsic factor antibodies should also be checked.

    If folate levels are low, and the history suggests malabsorption, tests for anti-endomysial or anti-transglutaminase antibodies should be done (depending on the local laboratory) to check for coeliac disease.

    Actually your GP isn't under an obligation to follow any guidelines they are supposed to use their professional judgement.... though for most that seems to interpreted as using their prejudices.

    Guidelines would be taken into account when deciding if a GP had used their professional judgement and that wouldn't just be applied to the NICE guidelines.

    However, it's unlikely to be helpful to point that out so bluntly.

    Do you know exactly what your B12 levels were?

  • Last test of Serum B12 was 488. I have been supplementing with Berocca for years and I understand that this could have prevented mego-blastic anaemia.

    I was checked for Coeliac and it was negative. I am waiting for the intrinsic factor test results but it's clear my GP doesn't expect it to be positive. She said the gastric parietal cell test I had is 80% accurate and that was negative.

    My symptoms have significantly worsened since I stopped the Berocca, of course I don't know what specifically it was helping with. B12 or Folate etc etc. My tongue is constantly sore without it. I have explained that to my GP both in person and in writing.

  • do you have the units and range for B12 - there are two different units used for B12 measurements.

  • Ah I see. 488 ng/L 130-800ng/L

  • its really unlikely that you are B12 deficient at that level. Sometimes supplementation with really high doses of B12 - much higher than those in Berocca though they are admittedly quite high - can cause problems but generally that involves raising levels above the top of the normal range.

    There is a significant overlap between symptoms of B12 deficiency and folate deficiency.

  • My folate was 11.9 ug/L 4.00-20.00ug/L Berocca also contains Folic acid though, so it could be that?

  • no guarantees but could be

  • AmyG6500

    To tag someone, just type '@' immediately before typing the user's name, ie no space, then you will probably see some similar names being suggested popping up towards the bottom of your screen. You can either click on the correct one or continue to type the user name, then press 'Enter/Return'.

    So, to tag 'username', just type @username (no space after the @) )

    Hope that makes sense ;)

    Give it a go...

  • JMN2017 YAY got it, thanks xx

  • I can't really speak to your other question but, when I encountered a hematologist who wanted to re-diagnose me himself, he told me I would have to be off of B12 supplements for six months before getting retested. (I was not willing to do that.)

    I learned to self inject from my mother who is a retired nurse. She taught me using an orange first to get a sense of how to do it. Maybe, if you decide to go the route of having a private doctor do an injection, you can ask them to walk you through all the steps so that you'd have more confidence trying it on your own.

  • I agree, 6 months is a long time to feel ill unnecessarily.

    Good idea re the orange and yes I'll ask the doctor too.

  • I was terrified at the thought of self-injecting, but honestly, it really is easy if you do the sub-cutaneous ones. I use the green needles to get the B12 out of the ampoule, then a small yellow needle to self-inject into the fat of my stomach. I don't even feel it and it's so simple to do. And I've always been nervous of injections. It reached the point with me where my utter depression at living a half-life became stronger than my fear of self-injecting. Good luck! Go for it!

  • Hey, Amy, you have done really well to keep teaching, even if for only a few hours.

    I haven't been able to teach at all since September, and can see how much of a struggle it must be for you. I have been totally honest with people at work, even students, because they were all aware that something was wrong and this is not something I could hide. This has given me less to worry about, and I've been lucky to get so much understanding and support.

    The way I see it, if you can afford it, you might as well have the tests done. Yes, it's all a gamble, and even if you get to Haematology stage, it appears to be a matter of who you get not what you've got. I'm going to see Haematology on 19th and Neurology on 5th May, but I've been very lucky with my GP, who also had MMA test done (on NHS) because I had very high blood levels of B12 (after being initially low) but was still very symptomatic and getting worse. If all this fails to get me help, and it might, because my last injection was on 27th March, I expect I will have to self-inject, but am not worried because only deterioration scares me now.

    There is still always Plan B which is to take up Sarah Ferguson's generous offer of help.

    This is just my opinion, Amy, whatever you decide to do, I send you respect and all of my best x

  • Thanks Cherylclaire, I have no colleagues. Being a self-employed working from home teacher. Some of my students have noticed and so far I have just made a joke of it, 'clearly need more coffee' and that sort of thing. I may have to be more open about it to those old enough to understand and notice. I have hidden my anxiety and depression so effectively (from all professional contacts, not friends) for so many years it goes against the grain. The brain fog is so hard to hide though, I keep calling out the wrong note name, or can't finish the sentence I started. I just hope parents don't think they'd be better off with a new teacher. I feel very vulnerable being self-employed at the moment. xx

  • .....and yet, the government want us to go on longer and longer. Don't know about you, Amy, but the way I feel I could stop today -and I'm 58 (nearly 59). But have 7 years to go, and am trying to get to a stage where I am physically, mentally and emotionally capable of teaching again. Even the trying wears you out, doesn't it ? But like you said, harder to fake it.

    Harder still for you, being self-employed, where the only people you could tell are your clients ! What would we do without this place ? And each other ? Can't imagine how Martyn Hooper did it, but so glad he did.

    At the moment, I am waiting to see if I can manage on 1 injection a month, which probably means GP has decided that this is all I'm getting back now. After 2-a-week loading since October, she may well be right, but who wants to give up on their previous self ? Having said that, I did expect it to be worse than this, and be on my knees by now (2 wks later). I also think I'm being a bit of a coward, and not testing myself much- just sticking to safe and local !

    One last thing: what does it mean to tag somebody ?

  • To show their name as a link, like this Cherylclaire. You type @ then the name, usually just the first few letters and it will come up.

    I'm 37, so I have a long way to go! I'm also a musician. I have a couple of albums out. I can't do much gigging at the moment though and writing through the brain fog is very limited.

    You have to know your limits and pace yourself. Safe and local sounds fine to me. I'm glad its not been quite as bad as you imagined. Martyn has been amazing, to get through this and then focus on helping others.

    Have you considered SI? Apologies if you've already commented on that somewhere and I haven't seen it.

  • Don't apologise to me, AmyG6500 - I might/ might not have, hard to remember so happy to repeat myself. SI: Not ruled it out, but keeping it as a comforting last resort. In the meantime, having a very frustrating life trying to get GPs, consultants etc. to believe me, recognise that all the things wrong with me could be B12 deficiency, and then try to help me to help myself...trouble with teachers, they always think they can change the world.....oh yes, they can...look at Martyn Hooper !

    A lot of my previous furniture-maker students have been musicians, too- mostly drummers for some reason. Some of them did gigs to finance their way through the 2 year course. Would be nice to hear your music, Amy. I remember having a chat here a few months ago about B12 deficiency and losing creative spark...did you see that? Can't remember who was involved, but the thought of that was somehow the last straw. Is there anywhere left untouched? It struck me that art might be a better way of showing what it feels like to be us, as individuals with individual sets of symptoms- ART not CHARTS ? (Had a talk with beginner1 about showing charts to GPs and specialists and how they might see that as a little bit bonkers.)

    Well, you taught an old dog a new trick today- tagging. Excellent, if I can only remember it!

    Physically and emotionally not a good day today: tingley and prickley both. Just woke up this way. Already had a go at a librarian today....a cardinal sin, because they can't shout back.

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