Don't want anti-depressants (Amitryptilene), pain-killers (Amitryptilene) or counselling: just want a diagnosis

Went to GP yesterday, after 3 months.

Haematology has now signed me off, all things being "normal" except raised MMA levels, so being sent for SIBO breath test in October, still no results from MRI brain scan taken on June 16th by Neurology, no results from Genetics lab either yet although they have advised Haematologist that they will be wasting their time as homocysteine levels "normal". Haematology want to send me back to Neurology but I don't know what else they can do for me since electronic nerve tests also "normal"and brain scan done already. He also told me last time that he didn't know much about B12 and told me I had a good case but needed to put it again to haematology.

Going round in ever-decreasing circles not helping my dizziness at all !

Excruciating pressure pain deep in groin checked and GP believes might be a hernia. Sending me for tests, although this was what GP said 2 1/2 years ago and various scans found nothing.

Told her some people have decided to self-inject with b12 and have had help from a practice nurse rather than having to learn from a video. She said ask one of the nurses and I told her they would not act without her authorising it.

Asked about a Dr's certificate for work, since they are expecting me to return in September after a year off sick (I teach). She said why don't I just go back and try ? Feel like she can't hear me at all. Nothing has changed for me since last year except I now have osteoporosis. And perhaps a hernia. And perhaps SIBO. Maybe even brain lesions, who knows?

Osteoporosis nurse said I should not be in daily pain with hip and back and to see GP, but GP says a certain amount of pain is to be expected.

Left in tears.

GP telephoned after surgery, said a lot of my symptoms sound like anxiety, offered anti-depressants, pain-killers, counselling. Told her I don't want them, that I considered it natural to be upset and disheartened after all this time.

Said I just want a diagnosis.

She has checked guidelines on B12 injections and is now reducing my injections to 1 every 2 months. She was concerned about what to write on my certificate, told her I have been very honest with my employers and kept them updated. I am not worried what she writes. My diary also seemed to concern her- she asked did I think all this was taking over my life? Bless her, she thinks I have a life.

I told her I felt it might help me get my life back. Someone somewhere knows what is wrong with me, will recognise these symptoms, will be able to give me a diagnosis. One that sticks this time. Even if there is no treatment. Cried again.

This morning, my partner asked me where all this questioning and research had got me. "Good question" as they say in the trade.

43 Replies

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  • I really think that you should consider going down the self- injecting path . The fact is that you cannot overdose with vitamin B12 . It us not an expensive option . It may well help , and if it doesn't, you will not have done yourself any harm . You could inject as often as you like . It will only cost you Β£1.00 a shot if you buy in bulk . You must make sure that you have sufficient folate/folic acid, which works together withB12 . It would be a bit of an experiment I know , but worth a try . Best wishes .

  • Thanks and I agree with you. I've tried really hard to find any other illness/ problem that looks remotely like me and can't. It's beyond time I did something -apart from keep records in case it helps someone else make a diagnosis at some remote point.

    Sent GP the PAS symptoms list- the one that starts with the sighs, which GP said was anxiety. No letter, just highlighted all the symptoms that I believe are relevant to me (including mood swings, which must be fairly obvious to her and half the surgery by now !) It made me feel a bit better. She might read it.

    Somehow, this still feels like giving up, but I can't get worse just to prove a point when no-one's watching !

  • Sighs? like a Yawn? That is one of the first symptoms I had and they got so bad I felt like I could never breathe deep enough, I literally wanted to yawn nearly every breath. With pernicious anemia, your red blood cells do not mature, they do not carry oxygen and therefore you are always short of breath. They also do not absorb iron etc. Getting weak, tired, and all the other symptoms that can come with pernicious anemia / subacute combined degeneration can definitely cause depression and anxiety.

  • I never had the yawns before- always exhaustion and throwing myself on sofa the minute I got in, to sleep for hours and hours. Warning sign of that level of exhaustion was always white noise (tinnitus but in head not ears) and a creeping, trickling feeling that was like tiny iron filings flipping over and over just under my skin and heading towards soles of feet and fingertips. Very specific feeling that some people say is like ants under your skin.

    The yawns only started this year when, to save myself from exhaustion, I did a lot less and stayed local. Now yawns (and dizziness: when moving head a lot - in supermarket, watching action film in cinema etc.) a lot more common than napping in mid-afternoon.

    By the time I get to the till in supermarket, I'm usually gulping like a dying goldfish !

  • I'd be interested to see how your MRI results come back as, one of my first symptoms with MS was ant like crawling under the skin!

  • Still waiting ..GP chasing it up. I will let you know !

  • once again the 'guidelines re b12' comes up. why oh why when they hand out anti-depressants and even pain killers - is there such a restriction on the frequency of b12. It beats me!

  • Enough to make you depressed !

    I have now been offered Amitryptilene (as either painkiller/ antidepressant ) 4 times, maybe 5.

  • So very sorry for you - what a sad story. I'm an ex-teacher, and know there's absolutely no way I could teach with this illness. I really think you should try self-injecting too. Nothing to lose, really. I do it - I was terrified at first, but I've bought the tiny fine needles for the injecting bit, do it sub-cutaneously, and it really isn't a problem at all. I'm injecting every day at present and will continue to do so until I feel back to normal. I know this can take some time. I also take extra folic acid, magnesium and ensure I eat plenty of potassium. And a healthy diet too of course.

    Apart from the obvious benefits of the B12 injections, there's the psychological aspect too. I was very depressed by the illness, bored silly as I couldn't even read, let alone write (I'm now an author), and fed up with being dismissed by doctors. But once you start self-injecting, you really feel back in control of your own health again, and also that you're doing something positive and pro-active, rather than simply being dependent on the health service.

    Perhaps you could find someone in your area to actually show you how to do s/c injections? I was lucky in that one of my sons recently qualified as a nurse, so he was able to demonstrate. I'm sure any fellow sufferer would be happy to help. Good luck! xxx

  • Would you mind telling me where you buy B12 shots from. I have been using patches and sublingual tabs and do feel better but feel that the injections would be more specific and I can know for sure I would be getting correct dose into my system. Thanks

  • Hi geronimo1 - I buy mine from a German website. I think this is the address: versandapo.de I buy 100 ampoules at a time as this saves on postage costs. It's not expensive and you can use paypal too. You can buy the syringes, swabs and needles from many UK sites. Good luck!

  • Thanks, will contact company

  • Hi geronimo1.

    Hydroxocobalamin 1mg in 1ml, syringes, needles and needle disposal containers available here:

    medisave.co.uk/b-d-microlan... (Green needles for drawing up)

    medisave.co.uk/b-d-microlan... (Blue needles for injecting)

    medisave.co.uk/b-d-2ml-plas...

    (Better to use 2ml syringe for 1ml injection - easier to draw up B12 - more room in syringe)

    medisave.co.uk/sharpsguard-... (For safe needle disposal - larger 2.5ml size also available)

    versandapo.de/article/detai...

    (100 ampoules hydroxocobalamin 1mg x 1ml ampoules (long expiry dates). I buy 100’s because it works out cheaper but also available in 10 ampoule packs – same site. PayPal available and quick delivery)

    πŸ‘

  • Very glad to hear you're doing well. Also glad to hear that there is one more nurse out there who actually knows about B12 injections. I've heard it all: toxic, highly addictive, carcinogenic, very painful ...... mostly from consultants, but also from nurses. How lovely that your son was able to help you to start getting your life back on track.

    Shame that PAS couldn't run regular courses. First need to get a computer (still using the library), then work out how to order online safely. Never done that before!

    Self-injecting, however, does not scare me at all.

  • Glad it doesn't scare you! Good luck - you won't look back, once you've started! And yes, I'm very lucky with my son. He's seen too much of my illness to ever dismiss B12Def the way the doctors do!

  • I agree completely that a diagnosis is what you need, but you may want to consider that a small dose of amitriptyline might be helpful for your pain; and that counselling might be helpful for thinking about all the stresses this illness has caused in your life. These things shouldn't be 'instead of' a diagnosis, but they might be a useful addition. It's perfectly normal to feel disheartened and tearful, but that doesn't mean that you shouldn't have support! Hugs x

  • Thanks for the hugs, spacey1 , and I would consider it .....

    Adequate treatment for condition first.

    Then I'd be more able to determine whether depression really is an additional problem or just a symptom or simply a natural reaction to a nightmare situation. A vitamin is one thing, antidepressants quite another, and to be really honest, it feels to me like just another mercurial mood swing and not depression.

    Mostly angry outbursts, irritation and short temper, impatience and crying from frustration and exhaustion, especially when I feel that I'm not being listened to.... no wonder my partner refused to go on holiday with me this year!

  • When every nerve in your body is being damaged and dying, How else would you feel. For people who think B12 is only a placebo, just remember, Sailors died for lack of Vit C (until the navy started taking limes with them, thus the nickname limeys.) and so did people for lack of B12. Most of them were sent to asylums and died there.

  • Hi I had terrible groin pain with vitamin d3 defficency have you had your d3 checked.

  • Well thanks evergreen11 - will ask about that !

  • evergreen11 - silly me, I'm already taking a lot of this for osteoporosis of the spine- and that despite having a nice high healthy Vitamin D reading just 5 months previously. So, probably not that then, but thanks.

  • Hi Cherylclaire. Just had a quick peek at your last couple of posts as well, so just a couple of quick comments - based on those as well (sorry, don't have much time at the moment - and sorry if it sounds a bit disjointed and 'unexplained' to anyone reading anew - but Cherylclaire will get it πŸ˜€πŸ˜€).

    Going back to the beginning (all those months ago)...you had a definite diagnosis of B12 deficency (leaving aside the functional deficiency issue, for now). You had neurolgical symptoms - but only received the neurolgical regime for a short time (six months, I think you said).

    Note your previous comments that you still had symptoms on the twice weekly injections...but the thing is...did you have all your symptoms...or did some things (but not all) begin to improve. I ask because some systems in the body take longer to repair (especially neurolgical ones) and it would not be unusual to still have symptoms after six months...in which case every other day injections should carry on (but your GP reduced the frequency). There was a post here not so long ago where a forum member had been injection every other day for over a year...her neurological symptoms had disappeared for the first time, and she was still improving. So...if it's the case that some things had improved...even if only marginally, then the B12 was having a good effect...and the intensive regime should have been carried on (not reduced).

    About the apparently 'normal' blood tests this time - once treatment with B12 injections has started, testing serum B12 levels is meaningless - so I hope your haematologist did not used your serum B12 levels as evidence that you do not have B12 deficency. Indeed, most people on injections have serum B12 levels over the top of the reference range (mine are always over 2000ng/L)...so if yours were within the reference ranges (and particularly if at the low to middle end) they would be low for someone on injections (and perhaps be indicative of hypermetabolisation of B12 - in which case more frequent injection are needed).

    I'm really struggling to understand why your haematologist (who does not inspire confidence, given her original pronouncements on B12 deficency) are now ignoring your previously lab confirmed B12 deficency diagnosis (what they all seem to look for) just because your B12 levels have risen (as they should, when on injections). This flies in the face of all the guidelines - they should be treating your symptoms, not your blood results (as you know).

    About the potential SIBO - yes, this can cause slightly raised MMA levels. And people with B12 deficency often have other absorption problems and problems with bacterial overgrowth. But you can have SIBO and B12 deficency simultaneously - and you already have a confirmed B12 deficiency.

    I think the only way that you'll know if B12 deficiency is the problem (and I suspect it may be) is to start self-injecting B12 - and be prepared to contine every other day injections for up to two years (as suggested by Stichting B12 Tekort - in the PAS pinned posts to the right of this page - bottom if on a phone). Think I've sent you links to supplies before, but shout if you want them again.

    Obviously, it's not possible so say if all your symptoms are B12 deficency related, and if your GP is now convinced that B12 deficency is not the problem, then she should go back to the beginning and start looking again for causes - because you have symtpoms and there will be a cause (and I doubt that it will be anxiety and/or depression - though how you don't become depressed under the circumstances...πŸ™„.

    And a passing thought...has your GP done an antibody screen to test for underlying autoimmune conditions? Worth asking - many symptoms in common with B12 deficiency / PA.

    And assuming that your GP originally tested for diabetes, thyroid issues (full panel, not just TSH). And referred you to a gastrologist if,you have gastric issues (sorry, can't remember)?

    And while your GP is investigating further...no reason to not self-inject with vitamin B12.

    About the neurology - if you have parasthesia (pins and needles) might be worth asking the neurologist to test you for small fibre neuropathy (nerve conduction tests only pick up large fibre neuropathy). And also ask him about potential dysfunction of the autonomic nervous system (can be cause by B12 deficiency, and other thing too).

    Osteoporosis nurse is right about the groin pain. Have you had an X-ray/MRI scan of your hips? Groin and back pain can be a sign of problems with the hip joint. I get groin pain associated with autoimmune condition. Your GP should investigate further.

    And about your partners question...well...all I can say is that without questioning and research, there are many people here who would still be struggling to get treatment...and be very ill indeed. And yes, it's a long haul, and you're still hauling...but in the absence of answers or solutions from doctors (whose knowledge is sometimes lacking)...then research and question is what we have to do...we have no other option...because the answer is out there somewhere...

    So, keep with the questions, keep with the research...and keep fighting to find the answers.

    Take care

    πŸ‘ xx

  • I took daily injections for a week or so, then 2 a week for about a month, then once a week for a month and then once a month and I healed fine. Once you get your levels up it's doesn't take much it keep it there, but nerve healing can be very slow, expect up to a year or so for complete healing if you have bad symptoms. Some normal sensations etc may not ever come back. same for memories, .....

  • Hi SusanLMMcinney. Just a small clarification...there is no correlation between serum B12 levels and symptom relief (I.e. Just because B12 levels are high it doesn't mean that B12 injections can given less frequently - based on the serum B12 level).

    The only way to tell if B12 is being given frequently enough is symptom improvement or relief.

    Alternate day injections should continue every other day as long a symtpoms are continuing to improve. Frequency of injections should only be reduced (gradually, like you did) once it is certain that no further improvement is possible. For some people, this can take up to two years of every other day injections. And some people need to stay on alternate day injections, after that time frame, just to remain well.

    Really pleased that B12 injections worked for you πŸ˜€.

    πŸ‘

  • I wish I could take you to the GP with me. That's exactly what they said. Symptoms cannot be B12 related because the blood test shows B12 is high now. They will not listen. They will not give me B12 injections. Only antidepressants

  • Oh Dee...we hear this so often. You can use the links I left you in a PM to collect evidence and present to,your GP.

    Sometimes writing a letter and including evidence before and appointment works well. Your GP has to read it as it becomes part of your medical records.

    Have you thought about changing your GP? Just a thought.

  • Foggyme - a misnomer if ever I saw one - you always put thought and care into your replies and without fail say something that makes me want to cry because you know me and understand how I'm feeling at each stage. Probably you've been there.

    Yes, I think I'm finally ready, since no more haematology tests likely, although first need to go shopping: computer, Paypal, B12 - and luckily have a friend who is German, understands technology, knows my tech limitations and more importantly knows what I need and why.

    Then I'll need a friend who can teach me how to inject safely.

    Wish you were a GP, Foggy x

  • Grief Cherylclaire...you'll have me crying too (but I thank you). And yes, I've been there too - still am in some ways - been battling with rheumatology to get treatment for an autoimmune condition (UCTD with features of lupus / Sjogrens / vasculitis). But good news - finally agreed to start treatment, so had my first immunosuppressant 'dose' this morning. It'll take three months to start working and see if it's the right medication - so keeping everything crossed πŸ˜‰.

    Been really ropey and not really able to spend as much time in the forum as I'd like - so,your words mean a lot. Hopefully, will have more energy soon so will be able to be around a bit more πŸ˜‰.

    Really relived that you've decided to try self-injection...it's the only way you'll ever know for sure if B12 is the answer. Worth asking your GP to authorise your practice nurse to teach you (as per your post). Tell her that you're keen to help ease pressure and time constraints for the surgery by doing your own - then you can just use your own supplies to do injections I between the minute amount doled out by the B12 police πŸ™„πŸ˜€.

    The website I fave you for B12 supplies has an English translation page - and the link I gave takes you directly to the right product, in English (if that helps). Good that you've got a friend to help you - and very easy once you've done it for the first time. Likewise the injections. Before you inject yourself, draw up some water in a syringe and practice injecting into an orange. Will help you get used to ha doing a syringe and give you more confidence before you make the orange to thigh muscle transfer.

    Me as a GP - ha ha - when I was at school the height of medical aspiration for women was nursing (which I did). If I was starting now...yes...medical school would have been first choice πŸ™ƒ.

    Anyway Cheryclaire, best of luck and let us know how you get on...be really interested to hear if the frequent injections start to make a difference (but remember, big (neurological in particular) improvements may take some take...so stick with it.

    Take care xx

  • So glad you're here, Foggyme, and totally forgot you were a nurse. That makes so much sense. Hope your treatment works. Not sure what UCTD is, but will look it up.

    Yes, there was a point where I felt less symptomatic: when I was being given 2 injections a week and had been taking my 3-month course of ferritin and folate for a while. People commented on how much better I looked (including my GP) -so, outwardly: hair, nails etc. These are probably the "easy" things for body to repair (?) I think I expected too much too quickly, impatience also being part of my problem.

    Any time my B12 serum levels were checked by GP, they were also always over the 2000 limit. Haematologist was I think taking bloods for Active B12, FBC, MMA, and homocysteine.. not sure what else, but have asked for specific written results, not just "normal" (or selected results that might back up a theory). GP has also asked for same, I think. So much agreed or denied within 10 minutes, I'm never quite sure what has been negotiated. Memory also a bit rubbish. Haematologist based SIBO possibility because MMA raised, but homocysteine normal- which also led geneticist apparently to tell her that the mutation tests were "a waste of time"- a shame, because I was expecting some useful feedback from this. Don't all these highs and lows drive you bonkers ? So not getting excited about SIBO really. Or genetics results. Or MRI brain scan results (if they've not lost them by now).

    Read a very old post (fbirder?) with link to research involving one B12 deficient subject allowing himself to get really deficient and have it measured over 2 years : earliest and by far most reliable indicator of deficiency was MMA level. Homocysteine came out as a very late marker. But this was just one person. Brave/ crazy?

    B12 deficiency and SIBO seem to be linked - whether by lack of acid causing bacteria to get opportunity to flourish or because SIBO bacteria partial to B12 depends on what you read.

    Last-ditch attempt at getting GP to recognise me in list of symptoms (PAS) may yet goad her into action, even if that action is lobbing list into wastepaper basket ! Need to see her soon and hoping to get a chance to talk properly so crossing fingers for a "good day".

    Went to work yesterday- next step will be employers writing to GP. Committee undecided about what to do with me and need professional opinion. Had to happen.

  • Eureka Cherylclaire. Feeling less symptomatic when on twice weekly injections is a successful therapeutic trial - and indicative of the fact that you most certain need to have every other day injections. It also means that if you had improvement before, you can have it again. And continue to have improvement - so long as you get enough B12.

    I'm staggered that your GP and haematologist are ignoring this (have ignored it for so long) - and reducing your injections. Unbelievable - or it would be if I didn't read it here on the forum so often πŸ˜–.

    Haematologist testing active B12 following B12 injections - meaningless. As was MMA (unless looking for functional defiency), since both results would be affected by the large ingress of B12 from injections - and MMA comes down very quickly once B12 deficency is treated - but the doesn't mean that B12 deficency is no longer present - it just shows that your body is now processing B12 again - because it finally has some πŸ˜€πŸ˜€.

    Not sure if just showing symptom list you your GP will do the trick - she may just say that those symptoms can apply to a lot of things - and they can.

    Also not so sure that your GP will understand the result she's looking at...or be able to interpret them correctly (sorry, but saying B12 is now normal so you don't have B12 deficency is ridiculous beyond words).

    Might be a good idea to give her information about serum B12 and MMA testing, together with the BCSH treatment guidelines, and information about subacute degeneration of the spinal cord (a condition that can happen if B12 deficency is undertreated).

    Understanding the mechanisms and consequences as well may bring more a better outcome....though I can't remember if you've already done this?

    Gave you lots of links in the dim and distant past, but let me know you want them again.

    Also - perhaps a good idea to put together and information and evidence pack, together with a letter detailing why you are appealing - again - to be put on the neurological regime of injections. Sub,it the letter before,your appointment (book a double appointment) and ask her to read the evidence before your appointment. She'll have to, because it becomes part of your medical records.

    if she refuses treatment, ask her to put her reasons I writing so that you can better understand her decision. Also ask her to include research evidence to support her decision (not just because the haematologist days so)...she won't be able to as there isn't any.

    Also ask her to confirm, in writing, that you will not be at risk of developing subacute degeneration of the spinal cord due to undertreated B12 deficiency (remember - you were diagnosed with this - and it won't have disappeared). Not suggesting you have this but it if she's asked to confirm this in writing, it might just sharpen her mind a bit - and lead to the treatment that you should have been having all along.

    All this might sound a bit like a challenge to far - nobody likes to halve to challenge GP's - but it's your health...and her job to help you.

    Folks here have often had very good results by writing first and then seeing their GP's.

    About the work thing and writing to your GP - yes, usual practice following long-term absence. But it's so annoying because if you are treated with sufficiency B12, for long enough, it's likely that you could return to work. Perhaps initially on a return to work plan with reduced hours, increasing at a rate that you can reasonably manage.

    So....suggest you write to your GP and see her soon....before the letter from work arrives (if you have a double appointment you could also discuss this - and make it clear that you think frequent B12 was improving your symptoms, that you think more frequent injections were working, and that you be.ieve having this treatment will enable you to ultimately return to work. So...no treatment potentially means loosing job.

    Top it off with a copy of the BNF pointing out the every other day injection regime for those with neurological symptoms (which your GP and haematologist seem to have never heard of - or have ignored).

    Sorry for the rant Cherylclaire but I'm so so cross on your behalf.

    Let me know if you want any of the information links again.

    Rant over....I'm going now.

    Xx

  • Good news / Bad news?

    Okay, good news first:

    My employers have been very supportive, and value me enough to have gone "off-contract" to retain me. They want me to come back. I think they would be really flexible about phased return or something of that nature. They know everything: I've discussed symptoms, progress, tests and results, even SI as a last resort and under what circumstances I would feel it necessary to resort to that. Too honest? Perhaps, but it's not like staff and students weren't aware that something was wrong- I've been ill for 2 1/2 years now. Went in this week and going in again on Tuesday. Need to think about capabilities. Not yet employable or useful, too symptomatic, too much physical pain and too mercurial in temperament.

    Which brings me to the bad news:

    Partner left this morning. My fault, I know, but what can I do? Unable to promise to change back to who I was. Can't do it alone.

    Lots to do, then. I know I'm still in here somewhere !

    Haematology problem with the original diagnosis:

    MMA levels rising gradually regardless of any B12:

    351nmol/L when Functional B12 identified (6/10/16) - now 393 nmol/L (19/6/17)- this was 2 days after B12 injection. Was tested the day before injection too (351nmol/L), proving little change. [Range: 0-280 nmol/L]

    Homocysteine level: Normal at 7.2umol/L

    Active B12 level: Normal at >128pmol/L

    At final appointment, asked for written details of other results: FBC etc.

    Remember once reading that marginally raised MMA (as opposed to experiencing sudden very high levels) nearly always means B12 deficiency, but can't remember where.

    You asked about thyroid testing: can only find

    Serum free T4: 14.1 pmol/L [range 10.3 - 24.5]

    Serum TSH level: 1.53 [range 0.4 - 5.5]

    which seem okay. Enough info there ?

    Still trying to make any sense of it all. Not possible without your help, and others on this forum. Thanks, and please don't apologise for your rant- you know I love your crossness.

  • Hi Cherylclaire. Sorry for delayed response...for some reason I didn't get a notification about your reply...so didn't know it was here πŸ€”.

    So very sorry to hear that your partner has left. It's terrible isn't it - chronic illness impacts on all those close to us as well - and some people just can't deal with it.

    Please do not think this is your fault. You are ill. The physical and emotional changes you are experiencing are due to this - and you can't just 'change back to who you were' by an effort of will. And sorry to be blunt, if your partner cannot see this...well...enough said. So when you say 'my fault, I know'...well, no it's not. These are circumstances inflicted on you...and I'm so sorry if he cannot see that. But please, please, do not let him imply (or tell you) - or think yourself - that the breakdown of your relationship is your 'fault'.

    And the idea of having to 'promise' to change back to who you were. Well really πŸ˜–. Wouldn't we all do that in a heartbeat if we could.

    Just briefly, 'cause out of time...yes, I also read that about the MMA - but didn't say before because I can't remember where I read it.

    Thyroid results - thyroid forum always suggest, at least - TSH, FT3, FT4 and the thyroid antibodies TPO and Tg (to check for autoimmune thyroiditis - Hashimoto's. So, no, they would say more tests required to give true thyroid status (if that's all you've had done).

    Sorry, but have to dash now πŸƒπŸƒπŸƒπŸƒπŸƒ

    πŸ‘

  • checking for pernicious anemia is a very specific test and not the usual gambit of tests done on a regular basis. Have them do the specific test for B12. There is another B12 test that worn't work. I know what it's like to be accused of being depressed, anxiety. Well, they're darn right, it's depressing when people won't figure out what's wrong with you. I was literally dying and they wanted me to get counseling. I had ZERO detectable B12 by the time a good dr figured it out.

  • Needed to reply. I feel like I am at the beginning of your journey. I too am a teacher, but took the decision 2 years ago, due to these horrible symptoms, in particular the constant fatigue, to take a ta role in the hope that I could cope with it and still work. I have been prescribed every antidepressant going. I have no life. I feel dreadful all the time. The gp will not listen. I am depressed because I feel ill and nobody is helping or even listening. I have left the surgery in tears, further proof to them that I am depressed. It is truly a vicious circle. I have pain in my joints, particularly hips, shoulders and left elbow. Gp said fibromyalgia, mild arthritis (I am 44), nothing they can do. They have told me blood tests are normal. They prescribed iron tablets, they gave me terrible stomach pain. Nurse said "well stop taking them then". Like you am expected back at work in a weeks time. :-(

  • Ever had Full Blood Count, and B12, folate and ferritin tested ? Thyroid tested ? Everything is something.... Ask GP for these tests, get printed copy of all results ("normal" doesn't count as a result) and post them, - the supportive and very knowledgeable people on this forum will help you to see if there is anything going on or potential problems. Any other problems may help them, even if you haven't yet connected them up yourself, might be worth mentioning.

    Don't just leave it. Get someone to go with you, someone a bit clued up about your health problems and not afraid to speak up for you if you get angry or upset. Angry is a natural reaction when help is refused and pleas ignored, upset is the same - so not necessarily depression or anxiety that would not go away completely if only you were listened to.

  • I have had all those things. They don't care about the results. I have a copy and they are blatantly not all normal but the gp has said they are. He has said its all psychological. He won't help. I have had enough of feeling ill and stupid and worthless to boot.

  • Dee - did you post your results here and/or on the Thyroid UK subforum on HU for comments?

    Did your GP suggest a referral to a pain clinic to cope with the fibromyalgia - or a course with a physiotherapist for recommendations around the (presumably) osteoarthritis?

    Some people find gabapentin or similar pain management to be helpful with fibro - and others can get decent relief for elbow trouble from NSAID gels applied to the skin, use of heat/ice, TENS etc.

  • Gp said "it's all psychological. There is nothing I can do. I can't wave a magic wand.

  • How very unhelpful and unimaginative of your GP.

    It's possible that your GP might need a nudge such as you requesting a referral to a pain clinic - this might be better in writing. There is an NHS clinic with a superb reputation for its course for managing fibromyalgia, chronic pain etc.: thewaltoncentre.nhs.uk/112/...

    There are also NHS clinics in London that people recommend.

    Suggesting this might prompt your GP to try more local/cheaper solutions such as physiotherapists/OTs etc.

  • Hi Cherylclaire. Here's the links that you asked for:

    B12 & SYRINGE SUPPLIES ETC.

    medisave.co.uk/b-d-microlan... (green needles for drawing up)

    medisave.co.uk/b-d-2ml-plas... (better to use 2ml syringes - easier to draw up B12 'cause more room in syringe)

    medisave.co.uk/sharpsguard-... (for safe needle disposal)

    versandapo.de/article/detai.... (this is for 100 ampoules hydroxocobalamin1mg x 1ml ampoules (long expiry dates). I buy 100’s because it works out cheaper but also available in 10 ampoule packs – same site. PayPal available and quick delivery)

    πŸ‘

    P.s. Doesn't look like these have worked either....not sure what's going on with HU...many things not functioning properly at the moment. Will dodge off and see if I can fix links and post again πŸ‘

  • Okay...let's try again...syringe links:

    medisave.co.uk/b-d-microlan... (Green needles for drawing up)

    medisave.co.uk/b-d-microlan... (Blue needles for injecting)

    medisave.co.uk/b-d-2ml-plas...

    (Better to use 2ml syringe for 1ml injection - easier to draw up B12 - more room in syringe)

    medisave.co.uk/sharpsguard-... (For safe needle disposal - larger 2.5ml size also available)

    versandapo.de/article/detai...

    (100 ampoules hydroxocobalamin 1mg x 1ml ampoules (long expiry dates). I buy 100’s because it works out cheaper but also available in 10 ampoule packs – same site. PayPal available and quick delivery)

  • Thanks for all your hard work Foggyme

  • No problem Cherylclaire. Thank you for the thank you πŸ˜€

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