Backwards & forwards now stuck!

Hi I'm new here & have browsed through the old P A forum and thought it was well and truly worth me signing up to this forum.

I've always been a skinny, healthy, active, fun loving person up to 2009 when I had my second child & I got a terrible ear infection that knocked me 6! I finally went on 3rd dose of super anti biotic but I still felt awful, exhausted (Baby was sleeping through the night from 4 weeks so wasn't her & it was a different type of tired) hair falling out, terrible skin, lack of energy or interest in anything, couldn't lose weight despite seeing a PT x3 a week, swimming x2 & eating right (she was 9 months & fully weaned by then) so doc eventually tested for everything & I was diagnosed slightly Hypothyroid. Started on 25mcg levothyroxin but nothing improved & over time was eventually upped to 50mcg. 2012 now & I had the odd good day but making the most of them put me back feeling rubbish the day after. I've been going to the docs continually between 2009 & now! In 2013 we had really good spring weather & I was outside a lot & started to feel like me again, at this time is had no thyroxin for 3 weeks as chemist was having problems getting my brand. Roll on to May and I go to America for a month - still no thyroxin and felt better than I had in years so once home told my doc & she insisted I had a test which when results came back told me I was extremely low & had to go straight back on 50mcg. I argued but did so eventually with her scare tactic comments. Winter arrives I was back to being awful, told my bit D was slightly low take a supplement. I started to with no improvement, doc told me to double it, I did to no difference & by now we're 2015 & my thyroxin had been upped to 75mcg from early 2014. I went to docs about my dry red cheeks & all the usual symptoms of hair loss, no weight loss, exhaustion, constant sleeping, no motivation for anything, no interest in anything, no libido & new symptoms of being forgetful, aching small joints (fingers, wrists,elbows,ankles) pins & needles in fingers & toes. I was told I had roseaca & given cream that did nothing & to up my vit D for the other stuff. Roll on 2016 I had a UTI (first in my life & I was 42). Was still feeling rubbish, still telling my doc regularly & her still insisting it was vit D (remember it was only slightly under all those years ago & ive now been taking the highest recommended amount). She eventually tested for RA due to my achy joints & referred me to Carpel Tunnel clinic for my tingles. I see a different GP for a separate not related issue (deviated septum effecting my breathing) & whilst she's doing the referral for that she gives me the results of the RA which is 'you haven't got RA but I'm afraid you do have Lupus' so I'm referred to a ruematologist. I see him before I see the CT clinic & he tells me I do not have lupus & it's either my thyroid meds need jigging & I may need to go private to a good endocrinologist he knows for the right treatment for me or I could be B12 deficient & if I am it will be the answer to everything. I then see the Carpel Tinnel clinic & they test me saying everything good I've not got CT & as I commented 'well yes I knew that as its in my toes too' they shook their heads in disbelief that i'd been referred for CT! Ruemy doc had signed me off saying you haven't got lupus, email me in 10 days for the blood results. I emailed him & he replied saying thyroid fine continue on 75mcg, B12 significantly low & need b12 injections every other day for 2 weeks then monitor from there. I go to docs & she's fuming he's emailed me & signed me off with no official notes to them. She agrees to do the jabs but asks me to get him to write to them. At the end of the 2 weeks I was told I'd need to have the injection every 3 months for life. The injections helped with the aching joints, tingling more than the other stuff but I did feel slightly better for about 2 weeks after the last injection then everything was back with a bang! Go and ask for jab doc says no we need reumatologist to put it in writing, but then says she'll do this one but no more til he writes. That one jab was at the end of September & I've got nowhere with either the ruematologust or the GP!

From my own research I'm taking it I've got PA & GP agreed with me that yes I do but she needs him to put everything in writing. He has ignored that bit of my emails and just says I need to convince her to give me more regular injections (I think I need 2 weekly) & if not he can give me more than she can but he's not answering how I go about him doing that without waiting months for a re referral!

Does anyone have any idea what I am best doing?

I'm thinking of booking that intravenous shot I was reading about but I'm not even 100% that it is PA I've got as he's never said those words!

10 Replies

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  • Did you use gas and air for pain control during the birth?

    Nitrous oxide is the gas (laughing gas) and it is toxic to B12.

    It may have precipitated a B12 deficiency.

  • No C - section

  • Hi Kateefc. Just spotted your post and it's too late to respond properly tonight - what a run-around you've been given (to put it mildly)!

    I'll come back tomorrow and try to help you unjumble this nonsense and suggest some things that you can try - not very impressed with either your rheumatologist or your GP πŸ˜–.

    Just a quick comment to keep you going - perhaps with a little hope - and because I may not be able to arrive here until quite late. There is absolutely no reason why your GP cannot diagnose and treat you for B12 deficiency and/or PA. She does not need 'authorisation' from a rheumatologist - current prescribing guidelines state that she can prescribe as much as every other day B12 injections - depending on your symptoms - but we'll come back to that tomorrow.

    An IV shot is only a short term solution (since you'd have to keep going back for them). Also - once you've taken any B12 (oral, IM or IV), your serum B12 levels will raise and if your rheumatologist does not provide a definite diagnosis and your GP has to start again, all the tests will be skewed and you'll then have even more problems getting a proper diagnosis and treatment. So hang fire on that for now till we have a go a sorting this out.

    Anyway...I have to sleep now so more tomorrow...πŸ‘πŸ’€πŸ’€

  • Thank you & hope you had a good sleep πŸ˜€

  • Hi again Kateefc. So...let's try and unjumble the nonsense and give you some suggestions on how you can get through this idiotic NHS logjam.

    You appear to have a whole bag of symptoms that have many cross-over symptoms across what could be several conditions - and it's certainly a possibility that the most likely cause is one or several autoimmune conditions (plus thyroid, which may or may not be autoimmune).

    I'm going to have to be quite general in this response but you can always come back and ask more questions if I misunderstand something you've said or I'm not quite clear in what I'm saying (it's a bit difficult to understand who said or did what when - if you know what I mean. So...one thing at a time. First some words and then some ideas about what you can do (it might mean going backwards so that you can go forwards πŸ˜–).

    You say that your GP tested for RA and came back with a diagnosis of Lupus. Very odd. The blood tests that GP's have access to are not specific enough to diagnose a specific autoimmune condition. They can point to autoimmune activity which needs further investigation - by a rheumatologist - so really not sure how one of your GP's arrived at this diagnosis (more on that later).

    Your thyroid issues. First, have to say that only know the basics about thyroid stuff - the best place to get advice is on the thyroid forum (search communities and the thyroid forum will pop up). There are some very knowledgable people there who will help with interpreting blood results and advise about treatment. But I can start you off...

    I'm assuming that your thyroid issues have been managed by your GP with some later input from the rheumatologist? Well, GP's are not good at treating thyroid conditions - for a start, they only measure TSH and this does not give an accurate thyroid status. You need a full thyroid screen (TSH, T3, T4) and also the thyroid antibodies (Anti-TPO and Anti-Tg). Your GP will not have done these and the thyroid antibodies is particularly important - if you have one autoimmune condition (and I suspect you may have) then you are likely to have others, so autoimmune thyroiditis (Hashimoto's) needs to be ruled out. And you need the T4 and T3 results so that you can be prescribed exactly the right medications - the thyroid forum can advise more on that.

    Back to the RA / Lupus conundrum: you say that the rheumatologist that your GP referred you to tells you that you do not have lupus. My assumption here is that he's done a whole range of autoimmune blood tests - if not he cannot possibly say you do not have (or have) anything. the only way you're going to know what he tested is by getting the laboratory results for all your blood tests (you are legally entitled to these - will tell,you how to do this when I summarise some actions you can take).

    I'm a bit suspicious of your rheumatologists claim that your thyroid is okay. The specialist to see for thyroid issues is an endocrinologist - so this is not investigated by rheumatologists. It might be that all he has tested is your TSH - and that's not good enough (for the reasons outlined above).

    I'm also very concerned about the rheumatologist suggestion that you may have to go to a good private endocrinologist he knows...this is so out of order...but not going to waste words spluttering...more useful things to say. Like...No you don't (unless you want to - but be aware that the blood tests that an endocrinologist should want to do will probably end up in four figures - in addition to at least two consultation fees - and if you need ongoing treatment you may have trouble getting back into the NHS system).

    Yes...I think you could benefit from a referral to an endocrinologist. For one thing they could do a full thyroid panel and sort out your medications. It would also be worth asking the endo to test your adrenal, parathyroid and pituitary function (you've been ill for a long while and it's time your GP did more investigations to rule out the possibility of other conditions). So ask you GP for an NHS referral to an endocrinologist - this is not unreaonable in your circumstances.

    And the next casual throw-away comment from the rheumatologist..'or it could be B12 deficiency'...and then an email saying significantly low...and no formal notification to your GP...meaning no treatment...disgraceful.

    Here are some things you can do to try and break this logjam:

    First...and probably the most important thing initially: your GP does not have to wait for authorisation to treat you for B12 deficency. GP's diagnose and treat this condition (or they should do). There are two options - option one - she can treat you straight away with the recommended B12 regime of injections (6 x loading doses followed by an injection every other day until no further improvement (the neurological regime - because you do have neurological symptoms - not many GP's know about this - tell her to look in the BNF - it's a book she'll have on her desk - second item down so she'll probably have to read further than normal). Please explain to her that B12 deficency with neurological symptoms should be treated immediately to avoid the potential for irreversible neurological damage (I'm not suggesting you have this but it might wake her up a little and get her moving).

    Option two - she can run the blood tests again herself - they'll take a week and then she can start treatment. Tests you should ask for are serum B12 and folate (B12 and folate work together so if your folate is low, your body will not be able to utilise the B12 properly). It's important at if you need them, folate supplements should not be started until 24 hours after B12 injections have started - to avoid neurological damage. Folate levels should be in the top third of the reference range (many GP's think bumping along the bottom is good enough - it's not).

    Also ask her to do an FBC (to check for macrocytic anaemia, often present in B12 and/or folate deficiency and PA). Also test anti-IF antibodies - a test for pernicious anaemia - if positive, you definately have PA, if negative it's only 50% accurate so,you could still have PA. good idea to test ferritin, vitamin D and magnesium - low levels of the often accompany B12 deficency and can make you feel very ill indeed.

    So, to re-cap - tests needed: serum B12, folate, FBC, anti-IF antibodies, ferritin, vitamin D and magnesium. And a full thyroid panel including thyroid antibodies (if she will - but perhaps better to get via endocrinology 'cause they'll test the other stuff as well - as suggested above).

    Your GP can get these tests results in a week and start treatment immediately the results are received - if she has a mind to. And she should because all the guidelines state that treatment should be commenced immediately if neurological,symptoms are present - I say this again because it's really important πŸ˜€.

    Your GP can also ring the rheumatologist direct (or contact his secretary) to ask for a formal written report and copies of all your blood results - waiting since last September and taking no action is really not acceptable. Ask her to do this.

    Also - you can contact the rheumatologist's secretary (just ring the hospital switchboard and ask to be put through to his secretary). Ask her to send you a copy of his report/doctors letter, together with copies of all your blood tests - request the actual lab reports (you really need to see these so,you know exactly what has been tested). Explain that this is outstanding since September and you cannot access treatment until this has been received. (I found in the past that secretary's are often very helpful and will follow through things you ask them to do).

    You could also email - or ring - the rheumatologist and be quite firm - explain that both you and your doctor want a letter from him stating his disgnosis so that treatment can be commenced - and don't forget to ask for lab copies of all your blood results. Also mention that you are concerned that failure to commence treatment may result in irreversible neurological damage so please can he attend to this with the utmost urgency. If this does not work, write a formal letter making the same request and ask for a written response to be provided within five working days.

    Something else you can do: read all the PAS pinned posts to the right of this page when you log on. These give details of diagnostic and testament protocols, together with guidelines relevant to the treatment of B12 deficiency and PA. having this information will help you to deal with and educate your GP. Highlight anything that is relevant to your particular case and take then in to show and discuss with your GP. If,you think you may get a hostile reception try and take someone with you - if they can read the information and step in to help if necessary - all the better. Unfortunately many GP's are ill-informed about B12 deficency (yours certainly is or you would be having treatment right now) and can become hostile if they think they are being challenged - having a witness in the room usually makes them more attentive and less hostile - so good idea if you can manage it.

    Next - ask your surgery to print off all your blood results for the last year. You are entitled to these, by law, and most surgeries don't have a problem doing this (some make a small charge, most don't). Knowing what has been tested and what the results were is the only way that you're going to get to the bottom of all these conflicting stories you've been given.

    When you get the results you can post them here if you want help with interpretation. GP's often say that things are normal when they're not - sometimes it's where the results are in the reference range that counts - right at the top or right at the bottom is not always good enough - even though the GP will say that's normal πŸ˜–.

    In future, always get copies of all your blood results so you can know what's been tested and, more importantly, get them interpreted properly.

    So....that's a lot of words πŸ€”πŸ˜€. I bet you're feeling quite ill so it's going to be quite difficult to take in....might take several 'reads' πŸ˜–! Best to just make a quick bullet point list of the things you need to do and work through it at your own pace.

    B12 deficiency is a very complex condition and there's always so much more that could be said and I'm sure that you'll have lots more questions. But that's okay, just post away and ask questions whenever you need to and folks will pop in to help (bit post-Christmas quiet here at the moment).

    In particular, if you have trouble getting your GP to treat you there is more advice we can give...so agin, just ask for help (we have some wonderfully knowledgable folks).

    And don't forget...if your GP wants to run the test again, post the results here...especially if she decides that they're 'normal' - because they might well not be.

    And finally....from what you say it does indeed sound like you have B12 deficiency and possibly some kind of (perhaps as yet undiagnosed) autoimmune condition (has anybody mentioned something called undifferentiated connective tissue disease (UDCT) - a sort of pre-cursor to Lupus).

    Anyway Kateefc...good luck with your GP and others, take very good care, lets us know how you get on...and shout if you need any more advice or information πŸ˜€ X

    P.s. The most important blood result to get is the on which first showed you were B12 deficienct (serum B12 from the rheumatologist) πŸ‘

  • Hi Foggyme,

    Thank you so so much for all of this information and advice!

    The Dr. that told me I had lupus was a new Dr. to the surgery & I now know she presumed lupus due to RA being negative & my symptoms & butterfly facial redness.

    I do not know what tests were done but the Dr. I mainly talk about is the most thorough at my surgery.

    When I saw the Rheumatolgist (I can't believe I spelt that wrong my whole previous post 😏) he did no further tests, he asked me a few questions & based on my answer of 'my facial rash does not get worse in sunshine' he said it was not lupus. He knew I was hypothyroid so tested that & said my GP had never tested my B12 & we can clap our hands if that comes back deficient as it will be the cause of all my symptoms. He also said it doesn't mean I will never get lupus as the first level of the test showed an indicator for it?!?!? I have contacted his secretary today for a full copy of the lab results.

    As soon as I got the email from him saying 'significantly low' I phoned the Dr.'s & told the receptionist the consultant had said I need b12 injections every other day for 2 weeks, the receptionist made the appointments with the nurse. I had those 2 weeks worth of injections before seeing the Dr. The nurse was happy to have the email he sent me forwarded for their system as evidence.

    When I went back to the Dr.'s in September I saw my usual GP & told her all what had happened (including the carpel tunnel results) & she said 'he can't sign you off & then tell you to get treatment via email without writing to us, he's very high up so he thinks he can get away with it but he can't, I'll give you one injection today but I can't do any more until I hear from him'.

    Would her doing all the tests now be ok with me already having had x7 b12 injections?

    I will ask the doctor for a copy of all blood results going back 2-3 years as that's been my worse period & has not yet improved.

    I also have the contraceptive implant (4 years now) & I'm getting that removed incase that has anything to do with it all.

    I have made a note of all the tests you have advised & I will need to phone daily to get an appointment with my Dr until I do get one as the advance ones are 3 weeks plus in advance! I cannot wait that long my life is just wasting away & im missing out on so much as are my family & I am behind on so much too. We run our own business & my husband is the surveyor I'm the admin but I've not done a thing for far too long!

    I will join the thyroid page too (I have had t4 & T3 tested in the past on my insistence but she said they were fine).

    I will insist on an endocrinologist referral.

    Thank you again for all of this it is greatly appreciated. I'll post the lab results when I receive them.

  • Hi again Kateefc.

    First, the lupus. This can't be diagnosed on the basis of a butterfly rash and whether this gets worse in the sun or not (but your the new GP is more than likely to be correct than the rheumatologist - who did no further testing!).

    From what you say about a first line test, I'm assuming that this was what's called an antii-nuclear antibody (ANA) test, which will have come back positive. This is a screening test that can indicate that something is wrong with the autoimmune system - though it cannot diagnose and pin point specific conditions. There are more specific tests that should be done by a rheumatologist. So...I'm really surprised (more than surprised) that the rheumatologist did not do these tests. Especially in view of your symptoms - and the butterfly rash.

    So, what your rheumatologist has given you is an opinion - based on...nothing more than...well....his opinion! You deserve and are entitled to better. And just because you have low B12, this does not rule out an autoimmune condition.

    Lupus is a very difficult condition to diagnose...you can have it and still test negative and some people do struggle to get a diagnosis. This is because the disease has active and less active periods...and to test positive, it has to be caught in an active period.

    I know all is because I was stuck in the same position as you for years and to cut a long story short I recently had a strongly positive ANA test and was referred to a rheumatologist. On the basis of the ANA test, my history and symptoms (including the rash) I was immediately diagnosed with undifferentiated connective tissue disease (20% of people with remain in this phase - and that's a good thing) and 80% ultimately display lupus antibodies - and are diagnosed with lupus). But the best bit...I'm being treated for lupus...and this treatment will continue...even if the lupus antibody test comes back negative.

    So all in all, I think you've been short changed (very) by your rheumatologist.

    You have two options - your GP can send you back and specifically request that the antibody tests are done - but it's a bit difficult for a GP to tell a consultant what to do! So, and perhaps a better option, you are entitled to ask for a second opinion...and your GP has to agree... It might be difficult to potentially be perceived as a difficult patient...but have a right to be tested and treated appropriately, so I'd say....go for it.

    And now to your GP - again, disgraceful. She obviously has a bee in her bonnet about how this consultant has behaved...but that's not a reason to withhold your treatment and put your health and wellbeing at risk.

    And oh dear...I failed to,pick up on the fact that you'd already had B12 injections - though it was perfectly clear from what you said πŸ˜–. The injections will have raised your B12 levels so a serum B12 will no,longer show,you as being deficient. (Your GP should still do folate (at least) - as I said above, if your folate is low, your body won't be able to utilise the B12 properly).

    And yes, this means that some of the tests your GP would run would now be skewed (with the exception of the anti-IF, ferritin, folate, vitamin D, magnesium and thyroid anti-bodies). In other words...the tests would be most unlikely to pick a a B12 deficiency.

    So...it's really important that somebody (you to your doctor's surgery) get the actual lab result that shows that you were B12 deficient. Though I have to say, most reasonable GP's would accept the consultants email as proof - as did the surgery nurse.

    As to your thyroid results - did they provide the reference ranges as well (blood results are essentially meaningless without those)? Win tout the ranges, it's quite difficult to say but...the T3 looks to be very low and the T4 looks as if its likely to be lurking towards the bottom of the range. Folks on the thyroid forum say that if you are being treated for hypothyroidism, then T3 and T4 should be in the top third of the reference range - and yours certainly won't be. (T3 is the active bit of the thyroid hormone and is needed by every cell in your body). Unfortunately, the thyroid forum won't be able to interpret your results fully without the reference ranges. Be a good idea if you could get the ranges (the full results - which ideally you should have been given in the first place). Or ask your GP to run the full thyroid panel - with antibodies as well.

    Just have to say again....really concerned that your GP is playing politcs and witholding treatment. This is so bad.

    Here's something you could try...if you are a member of the pernicious anaemia society go to the library page and print off a document called 'sub-acute combined degeneration of the spinal cord' - if you're not a member put that search term in Google and information about it will pop up. This refers to the neurological damage that untreated or undertreated B12 deficiency can cause. (I'm not suggesting you have this or trying to frighten you - rather it may give your GP the large prod she needs to begin your treatment properly - most GP's are not aware of this potential effect caused by delayed or lack of treatment, so it might just wake her up to the danger of what she is doing). Print it and take it to show your GP. Ask her to attach the document to your medical records and provide a written statement that you will not suffer this due to your confirmed B12 deficiency diagnosis - and also explain her decision to withhold treatment even though you have written confirmation from your consultant (the email) that is treatment should be given. And perhaps she could back-up her decision not to treat with medical evidence! She won't be able to - there isn't any.

    You should also take information from the PAS pinned posts that talks about the important of beginning immediate treatment when neurological symptoms are present - again, a wake up call for your GP.

    She obviously knows little about B12 deficiency...and in exposing you to the potential of long term health consequences (for the sake of disgruntlement and politics) she's exposing herself to potential claims of malpractice...πŸ˜–

    Anyway...sorry I've rattled on a bit...I'm really quite angry on your behalf.

    Please don't give up and keep pushing for your B12 injections...and a diagnosis for what I think is likely to be an autoimmune condition.

    Good luck...let us know how you get on πŸ‘

    P.s. If you do decide to try for a second rheumatologist opinion, try and track one down who has a special interest in lupus and ask for a referral to that consultant. Or...some areas have specialist lupus centres' of excellence - if there's one that you can get to, that'd be a very good place to go πŸ‘

  • Just looked back over the emails (couldn't remember consultants name to call) and here's what he put for my thyroid test

    T3 4.3

    T4 16.6

    TSH 0.55

    So he tested more than just TSH but not the full.

  • I've requested a copy of the lab results from the Rhuematolgust via email to his secretary (she also asked me to forward all the emails we had sent between each other) she is going to add it to my file & put it is his tray. I've also included a cover letter stating all the info I have learnt.

    I've had to put it in writing to my dr's & yes they are charging but that's fine, they've said it will be around 1 week until I receive them. I've requested back to 2013 to the current day as from then has been my worst time with a bit of good in spring/summer of that year.

  • Received a response from the Rheumatologist saying ; I feel lupus was serologically fully excluded – on the basis of having a weakly positive Anti nuclear antibody you were then tested for the more specific markers of lupus in the blood – namely ds (double stranded) DNA and ENA ; these were negative hence the reason I was able to discount the likelihood of lupus when we first met on 13/07/2016. He's also reccomended I now repeat B12 tests & see an endocrinologist.

    I have seen my Doctor today & she said that the DNA & ENA where done by them prior to the referral ..she gave me this print out & said the bottom bit was the concern everything else was ok (I'll add the photo I've taken when I work out how to!) edit to add:ok can't seem to add a photo unless new post so ..

    These tests were all done on the same date in February 2016 by my Dr.

    Anti tissue transglutnase lev - 0.6u/mL <10.90u/mL

    ENA SCREEN & DSDNA - (TSW) - normal

    ENA antibody level - negative

    DsDNA binding autoantibody lev - 4 iu/mL 0.00-20.00 iu/mL

    Anti nuclear factor - see ana results on hep 2

    Mitochondrial ABS - negative

    Parietal autoantibodies - negative

    Microsomal autoantibodies - negative

    Anti smooth muscle autoantibod - negative

    Anti CCP antibody level (TK) - normal no action 1 u/mL 0.00-7.00 u\mL

    Anti nuclear factor titre - homogenous, titre 1:640

    Homogenous ANA . This pattern MAY be associated with SLE, drug induced lupus & autoimmune hepatitis.

    She has referred me to an Endocronologist of my choosing (I chose him based on his name coming up in lots of places not just NHS)

    She has referred me to Haematology for the Anti IF bodies (& I'm note sure what else as I've forgotten & stupidly didn't make a note) rather than sending me to another Rheumatologist.

    I am seeing the nurse on Monday for blood tests to check 'bone profile, b12/Folate, full blood count, ferritin, magnesium, vit D (she has said she will ignore the b12 result but it is one test with the folate) and the intrinsic factor abs.

    She offered me anti depressants saying she understood I only feel low because of all the other symptoms but it may help me - I refused on the basis that I've felt like this for far too long & want to get to the root cause.

    I gave her the document you advised & she is attaching it to my files & is referring me to Haemmatology on the basis of we do not want me getting to that point.

    She has agreed to treat me every other day with B12 injections until my symptoms improve & I am calling the nurse tomorrow to get these booked in as there were no appointments for weeks but the receptionist said if I call the nurse she will be able to squeeze me in with it being just the quick injection.

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