An update from my post last week re: cfs

Hi, thank you for your help earlier in the week.

Just an update from my appointment with my gp yesterday.

He is still set on cfs but is prepared to rule some other stuff out to try and convince me. I'm having more bloods done on Tuesday to test stuff like celiac and some other stuff. He's also referred me to a heamotologist to rule out b12 as he doesn't think it's that but wants to prove to me I'm wrong, which is fine, I'm glad he's doing the tests.

He went through my previous b12 blood tests and my levels were 112, (I'm not sure of the measurement units) they didn't treat, it dropped to 83 which is when they gave me injections and they stopped the injections when it got to 1500, it then dropped to 200 and it was within range so then didn't treat, I've then since taken a b12 supplement and my latest levels were 500 which is when I posted here (the above was over approx 4 years) because I managed to get my levels up, although my symptoms got worse is it unlikely that I have a b12 issue and it could be something like cfs like the doctor is suggesting? I wish I'd known more about it when my level was 83, I would have pushed for more tests then.

Thanks

KJP

40 Replies

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  • At least your doctor is trying to sort you out. Was it the same one who treated you when yo were getting the injections?

  • No, I started seeing a different gp as he never seemed to take me seriously. The one who's doing the tests I've always felt he's listened but he wasn't very nice last week which is why I'd made the post then he was good with me yesterday.

    From what I read on here, I'm lucky that he's prepared to at least look into it.

  • I changed from a "one size fits all" doctor who laughed at me when I said I had a return of symptoms in the run up to my next injection. He said "it can't be your P.A. (which I've had for 45 years) because you are getting the B12 injections" and insisted that he would not vary the prescription and that I had to do "what it says on the tin" (with apologies to Ronseal)

    My now doctor has agreed to increase the frequency of injections despite at first having misgivings and admitting a "lack of knowledge" about B12.

    My original doctor back in 1972 (she's still alive and now a Dame) told me I would have to eat raw liver three times a day - or have monthly injections of cyanocobamalin. I chose the injections. :)

    Keep up the good fight KJP723 it's a battle which when you win will help the next patient along with the same problems and from what this community sees there are a lot of "us" out there.

  • Well Clive, at least your new doctor has the decency to admit he does not have much knowledge about B12 deficiency.... That is rare! Mine is poo pooing it (not honest enough to say so to my face, because I have given her many guidelines and research papers explaining B12 deficiency - which she has probably binned as soon as I left) but her attitude is dreadful to say the least and she is resenting the fact she had to agree to let me have injections. Since I have challenged her (politely) she is doing her best to sabotage any appointment I have with consultants by "rearranging" my medical history and trying hard to put seeds in their mind that my symptoms are all due to depression!! SO keen to dish out antidepressants....Had I let her bully me she then would not need to be bothered any more: a label would have been given and hey presto, no need to listen to on-going symptoms anymore, job done... I wish I had a GP like yours, as many others would to. However, very glad you have an understanding GP, a rare breed indeed!

  • I wonder what the difference in cost is between antidepressants and injections?! I've been offered antidepressants at my last 2 appointments!!

  • I understand from the executive chairman of PAS, Martyn Hooper, that an ampoule of B12 costs 28 pence, antidepressants costs much much more and can have serious effects.... and are often used as an easy "label" by doctors so that other symptoms are then not looked at. However there are cases whereby antidepressants are necessary. It depends on the circumstances as you'll appreciate. If you need B12 injections only then antodepressants won't do the "work" B12 does.... But you know yourself whether you need one or the other or both. We are all different. Good luck.

  • Thanks. I agree, I have taken antidepressants in the past and they were necessary at the time. They made it possible for me to learn to manage and now I am very aware of my moods and how to manage them without medication.I also suffered side effects. I know I don't need them now as I don't feel the same way as I did then. Unfortunately running helps control my mood and at present I don't have the energy to run.

  • Just to put the record straight...

    5 ampoules of hydroxocobalamin costs the NHS about £7. So that works out at about 1,5p per day.

    30 capsules of 20 mg fluoxetine (Prozac) costs 89p or about 9p per day.

    But the B12 cost doesn't include the nurse's time.

  • Yes, I don't know why people always assume antidepressants are so expensive. Heavens know how 'Big Pharma' actually make any money from them being as they have to pay doctors massive bribes to prescribe them.

  • The fact "Big Pharma" pay doctors massive bribes to prescribe antidepressants is shocking, but what is more shocking is that doctors will accept the bribes and push patients (those who let them...) into taking antidepressants rather than trying to find the root cause of physical problems. I do not deny that antidepressants do not have a role to play in some circumstances though.

  • Er, I think that fbirder may heve been using sarcasm there.

    For a start, the main antidepressants prescribed by the NHS aren't made by 'Big Pharma' but by 'Very Little Pharma'. And, at 3p per tablet, they are not going to be able to afford the bribe anybody.

    How much do you think a doctor would demand in bribes to risk their career? £100,000 per year?

    Assuming it costs 1p to make each pill. How many extra pills at 3p each would the docotr have to 'push' to make it worth the company's money - 5 million!

  • Ah ah! It is said sarcasm is the lowest form of wit... and I have little or no interest in such a form. Sorry.

    It is a well known fact that pharmaceutical companies do not exactly work for peanuts.... My heart really bleeds for them. They would not bother to go into business if they did not make huge amounts of dosh, one way or another.

    It is well known that doctors, let's say "get reasonable incentives" in prescribing certain types of drugs. No one is fooled.

    In any case antidepressants should not be pushed willy-nilly when a doctor cannot find the root cause of a persistent and debilitating physical symptom, that's the easy way out. Good practice is to carry out thorough investigations and help the patient in leading a "healthier" and therefore happier (easier?) life. NO need for cheap (or expensive) antidepressants!

    Have a nice day.

  • It is a 'well known fact' with little actual evidence that this is so.

    Yes, pharmeceutical companies make huge profits from new drugs. But when they come off patent the prices drop like a brick as 'little pharma' starts competing.

    That's when it would be insane for any company to try bribing doctors - because the returns just aren't high enough to justify the risk.

  • Eoaz

    Thanks for that information, but was told by chairman of PAS an ampoule of B12 costs 28p. When I mentioned that fact to GP she did not deny it at all, simply said the cost of nurse's time had to be taken into account. I understood that of course and simply added I would be willing being taught to self inject. I do so now.

    However I do not understand the logic nor the ethics of trying to push patients into taking antidepressants if these are not really required (they might be in some cases as well as another form of treatment) when B12 injections do actually work in restoring some form of energy hence a better quality of life and NO need for antidepressants since patients then feel somewhat better able to cope with and enjoy life. Most importantly B12 stop serious neurological damage, antidepressants do not.

  • I agree wholeheartedly that antidpressants are not a suitable replacement therapy for a B12 deficiency.

    I'm sure Martyn must have saud that an ampoule of B12 costs 28p to make. But the prices charged by the NHS are available to the public. The doctor probably had no idea how much they cost which is why she didn't deny it.

  • Eaoz

    Think your argument is somewhat "patchy"...

    It appears you are not aware a nurse is not "allowed" (you forgot the hierarchical ranks here: nurse carry out orders from the GPs) to make a decision. A nurse has no say in such matters. The GP either agrees or disagrees to prescribe B12 - Unfortunately they mostly disagree (lack of understanding and interest of seriousness of B12 deficiency). Surely you cannot be that unaware of the battles patients have with getting treatment for B12 deficiency?

    Furthermore I did not say "nurse agreed" (you're no proofreader then?)... GP agreed I should be taught to SI. No PhD in astro physics required to learn to SI, so anybody can do so if they want.

    Well Eaoz, I'll let you get on with your day, with or without cheap antidepressants - or not - Perhaps you are lucky enough in not requiring B12 injections or any other form of treatment. I have far more pressing and interesting things to do than waste time in non productive cyber conversations... Sure you must have some better things to do to.

    Goodbye.

  • The surgeries are awarded funding points for whichever pill/potion is prescribed. More points for AD's than for T4 - on the list that I saw .....

    I think with anti-depressants I cannot help thinking of the Supermarket mantra - ' pile 'em high and sell 'em cheap ! So volume is what makes the dosh - same with PPI's - Statins and so forth .... and not the things that help us to find wellness. ( albeit statins are not that cheap - but volume counts )

    Medicine is now a full on business - and very little to do with the well being of the patients. We have to take care of ourselves - and learn from each other .....

  • Amen! Well said Marz. Obviously some people have problems in understanding how the world works.... Luckily we are not all sheep... However I really cannot see the point of pointless cyber conversations. Life is too short! x

  • Thanks, this forum is so helpful with all the information, it's just unfortunate that the advice is usually because someone has already been through the fight themselves.

  • Did you manage to obtain copies of your results from earlier tests ? I did refer to your Thyroid in your previous post - have you got those results ? So often Low Thyroid and Low B12 are connected. At least it would be good to rule it our rather than have a CFS diagnosis on your records - for which everything in the future will be blamed.

    I was diagnosed with Fibro/CFS back in 2000 and Hashimotos in 2005.

    Thorough Thyroid testing involves MORE than the TSH - you also need the results of the FT4 - FT3 and anti-bodies - TPO and Tg.

    On the Thyroid forum here on HU there are way over 50,000 members and so many have low B12 as well as low Ferritin - Folate and VitD.

  • I didn't push for getting a copy of my results, I asked the receptionist last week and she made it out to be a super big deal so I left it, I then forgot to ask the gp yesterday.

    I'll try and get a copy next week and post them.

    I'm not sure why but I just have a gut feeling it isn't cfs. The doctor isn't convinced.

    Is the further thyroid testing something I could ask the heamotologist for?

  • Yes they like to make it a big deal - but it is your legal right to have copies of your test results. No reason required. The NHS website below will explain.

    nhs.uk/chq/pages/1309.aspx?...

    Your gut feeling could be correct - and it is always good to rule out other underlying conditions.

    Am not sure about further testing. I live in Crete so do not have problems with testing as we have walk in Labs - we also keep all our own records !

    Private testing is available through Thyroid UK - see link below.

    thyroiduk.org.uk/tuk/testin...

    There are several labs featured on the above link and the NHS use the same ones. Blue Horizon is popular on the Thyroid UK forum and the Profile 11 covers all aspects. Medichecks currently have an offer I believe.

    It is so difficult to diagnose true CFS - especially when at GP level the FT3 is rarely tested. This is the ACTIVE thyroid hormone needed in every cell of your body. The TSH can be in range - the FT4 can be in range - and the FT3 - but when all three tests are done together - you can see if the thyroid is struggling to produce T4 as the result will be low in range - you can also see if the inactive T4 is converting well into the active T3 as the result will be towards the top of the range. The most important test - FT3 - is rarely done.

    Never accept being told your results are normal - that is an opinion and not a result. You can have copies and monitor your own progress - very empowering on your journey to wellness ....

  • Are you in England, if so you are entitled to get access to some of your records(including blood tests) online so you can look at it when you want. If you get repeat prescriptions and appts online ask them to switch on access to your coded information records. NHS choices has info on GP Online services

  • Yes in the U.K. I got a form last week to sign up for patient access. I've filled it in to take back with me tomorrow.

  • Great, it makes it so much easier to look at results and go back over previous results to compare.

  • I'm going to ring today and request my results. I'm in tomorrow as well for more bloods so I can ask again then depending on how they are on the phone. I'll post them when I have them. Thanks

  • Hope all goes well for you. Will look out for your results :-)

  • Thank you

  • KJP,

    Are you based in the UK? Whilst it may once have been considered adequate practice in the past to treat a B12 deficiency on the basis of test scores this is no longer in accordance with guidelines issued by NICE or BCSH as it is recognised that serum B12 levels are only a small part of the picture and for someone who is receiving injections as a result of an absorption problem not a particuarly useful part of the picture as they are measuring how efficient your body is in getting B12 into your blood (which is known to be rubbish as you have an identified absroption problem) and says nothing about what is going on with the other two stages - transferring the B12 from your blood to your cells and actually using them in your cells.

    A B12 serum result after injections have started is only a useful indicator of anything if it comes back low measuring where you are a few months after an injection - as this indicates that the B12 is being removed more quickly from your blood by your kidneys and passing out in urine so you need additonal B12 to overcome this.

    Whllst flooding the gut with huge amounts of B12 can result in enough getting through by passive absorption it isn't a very efficient way of getting B12 into your blood and your levels have been pretty low for someone who has an absorption problem for such a longtime it might be advisable to go for repeating loading doses and starting over.

    You could ask to be tested for IFA which only means laying off supplements for 10 days or so, but IFA can be rather hit and miss as the test gives false negatives 40-60% of the time depending on the assay method.

  • Yes in the U.K.

    I just wish someone would take notice of the symptoms. I'm hoping the heamotologist takes more notice.

    I've read through NICE guidelines & BCSH so hopefully that will help being armed with the information.

    Although I'm not sure whether it's my age or gender or maybe just doctors not liking to be told things (I'm always nice about it) but they never seem to take me seriously.

    Do you know whether a multivit would effect the results much? I've stopped taking it for the time being just in case.

    I also wonder whether I'm feeling symptoms sooner this time (as in higher blood levels) because I've been pregnant or breastfeeding since having my last injection 4 years ago and that takes a big toll on your baby and vitamin requirements.

    Thanks for your help.

  • the amounts of B12 in a multivit are not enough to affect B12 levels in blood if you have an absorption problem.

    If you don't have an absorption problem then the deficiency is dietary and you should be either taking measures to get more into your diet or supplement.

    Worried that you mention breast feeding. Means that your baby is relying on you for their B12 and if you don't have enough for yourself. I am not sure of the biochemistry and physiology but I don't think that breastfeeding is recommended for people who have B12 absorption problems. If you are a member of the PAS please ring them and ask to speak to the nurse. If you aren't a member then please join and then ring and ask to speak to the nurse.

  • I stopped breastfeeding about two weeks ago. I read about the issues with exclusively breastfeeding and had a big panic but he's not showing any signs of deficiency. He's now 17 months old and not showing any signs of delay.

    I would be really surprised if it was dietary as I eat plenty of meat, fish, eggs & cheese. But like you say, a multivit wouldn't effect results so my most recent blood results were well into normal range.

    I will seek further advice about my son if anything comes back after the test with the heamotologist.

    Thanks.

  • Definitely chase for test results. Thyroid that is 'normal' can still be terribly low, and produce every one of your symptoms. It also causes low stomach acid and consequent poor nutrient absorption, which leads to all the other deficiencies. So it is really important to look at it. I was well within 'normal' when I finally got diagnosed and treated privately. They would happily have left me with a CFS diagnosis till I could barely move!

  • Hi,

    Are you symptomatic for B12 deficiency? See lists of b12 deficiency symptoms underneath.

    pernicious-anaemia-society.... see checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Are you In UK?

    If yes, I'd suggest reading BSH Cobalamin and Folate Guidelines which gives guidance to UK doctors on diagnosis and treatment of B12 deficiency.

    b-s-h.org.uk/guidelines/gui...

    stichtingb12tekort.nl/weten...

    Flowchart from BSH Cobalamin guidelines above, makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range. IFa test can help to diagnose PA but test is not always reliable and it is possible to have PA even if IFA test has negative result (called Antibody Negative PA).

    What to do next?

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    Other useful B12 info if in UK

    1) Pinned posts on forum

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    3) BNF Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is chair of PAS (Pernicious Anaemia Society). Book is up to date with current UK guidelines.

    He has written 2 other books about PA and B12 deficiency. I also found it helpful to read "Living with Pernicious Anaemia and Vitamin B12 Deficiency". This book has several case studies, some of the people were diagnosed with ME/CFS before finding out they had B12 deficiency. It made me cry reading the case studies as it was like reading about myself .

    5) Book "Could It Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies. Reading this book was a lightbulb moment for me.

    6) PAS website

    PAS has members from around the world.

    pernicious-anaemia-society....

    Contact details for PAS on website.

    7) B12 deficiency Info website

    Lots of B12 info and an interesting blog.

    b12deficiency.info/

    UK access to medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Yes, I have about 12 of the symptoms on that list including some neurological and probably some extra symptoms that may or may not be linked.

    I've read through the info so when I see the heamotologist I won't be fobbed off. I'm not sure what tests the doctor has asked her to do but he did mention active b12. Hopefully I'll get my referral this week.

    Thanks for all the info.

  • If you have neuro symptoms, have you seen a neurologist?

    Word of warning.... make sure you are well informed about b12 deficiency as some consulants eg neurologists and haematologists are not as well informed as they could be. I speak from exasperated personal experience.

    I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post. I take copies of some UK B12 documents/articles with me to appts where b12 might be discussed(just in case they are needed).

    "because I've been pregnant "

    Have you had gas and air mix during labour? Gas and air contains Nitrous oxide.

    gov.uk/drug-safety-update/n...

  • I've not seen a neurologist about my symptoms recently. I saw a neurologist some years ago as I have trigeminal neuralgia but that was before my original b12 issue started approx 4 years ago. The doctors doesn't seem concerned about the pins & needles or the dizzy/clumsiness.

    I'm going to print some information out to take with me.

    Thank you.

  • How about requesting a neurology referral?

    I found articles that suggested a link between B12 deficiency and trigeminal neuralgia.

  • I'll ask my gp about the referral. As with your above post, I had gas & air with my first child 3.5 years ago but not with my son.

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