So fed up

Hi all, it's been a while since I last posted but I do try to keep up. I apologise now for what will inevitably be a rather long post.

Right now I am so blooming fed up. Had yet another useless visit to my gp today. I have noticed for the past few months I have had a high pitched whine in my ears, so finally a couple of weeks ago I went to see my gp, well it was a locum I saw and he was most helpful. He recommended I get my ears syringed to rule out any problems there. Had that done on Friday last week and high pitched whine was still there and the nurse said oh it's probably just residual water left over. So I thought ok. I'll see how I am over the weekend. Well it's getting worse and really driving me to distraction. It's getting to the stage where I'm having to turn the to up and ask my daughter to repeat things as I don't hear her properly.

Phoned for an appointment and managed to get a last minute emergency one. Well doc was running late as usual but finally I got to go in and see her. I might as well not have bothered. I explained what had been happening so she looks in my ears and says....... Are you sure you had them syringed on Friday?????!!!! Lol well I'm forgetful but not quite "that" bad. So seemingly it's not been done properly so I have to put oil in my ears for another week and have it redone along with my bloods.

My last b12 injection was about 6 weeks ago but before I had it done I asked the nurse to do a b12 blood test along with the others I have. I asked a couple of weeks later what the result was and all the nurse would tell me was that it was in range, she refused to give me numbers or a print out yet I got a print out of all my other blood results as I usually do as I'm on methotrexate.

I decided to broach the subject of my injections with the doc and explained that I am constantly exhausted right now and have all sorts of nerve pain (have confirmed nerve damage in hands and feet) and casually asked if the suspected tinnitus could be connected to the pernicious anaemia? Well I damn near jumped out my chair, she basically barked at me demanding to know just why I thought that. So I mentioned that I keep up with the pa society and research into pa etc and that tinnitus is listed as a possible symptom. Well talk about wrong thing to say, I was told in no uncertain terms that tinnitus has absolutely no connection to pernicious anemia and I've "obviously got my information wrong" and that I receive treatment for my pa anyway so that should be sufficient! and was dismissed and almost pushed out the door. (Almost in tears as it took me a lot to build up the courage to broach the subject).

I am so fed up feeling that I am being treated like I'm an idiot by the medical profession. I have lost so much confidence in the past couple of years due to various other factors, I have difficulty walking due to having rheumatoid arthritis, I am also type 2 diabetic but am having to inject insulin. I enquired not long back about being taught to self inject b12 and was basically laughed out the surgery. (Or it certainly felt that way to me). Im in no way stupid, I'm a qualified clinical hypnotherapist and am planning to do an open university course because im stuck at home a lot of the time right now due to the health issues I have.

I'm very stressed right now as I am being switched from dla to pip and am having to appeal because I am losing my mobility car. I'm 2 points shy of being awarded enhanced rate, which I have had for the past 5/6 years on dla. however my care component has been increased because they have admitted that I need far more help now than I previously did so I'm left feeling confused because if I need more help then shouldn't I be awarded the correct points? Anyway. That's a whole other subject lol.

Sorry for rambling on as per usual I look forward to hearing your opinions on what my next move should be. I am seriously considering self injecting if I can afford it. Was going to before but being on benefits it was just too expensive at the time. I'm still on benefits but have a couple less bills to pay so I'm hoping I have enough spare each month to get the supplies to self inject.

Mags

13 Replies

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  • I think self treating would be the way to go for you - as you would have control of your health. Also you know what to do regarding injections. I would also take a good B Complex too - to keep all the B's in balance. B12 works with Folate in the body.

    As you have more than one auto-immune issue going on ( Me too ! ) I am wondering if you also have a thyroid problem. I recently read that all diabetic sufferers should have their thyroids checked as its all part of the endocrine system and so connected. Just a thought. The Docs are just as bad at diagnosing thyroid issues as they are Pa and B12D. Happy to help if appropriate :-)

    Regarding Tinnitus - there was a questionnaire sent out to 1000 PA sufferers asking them about the symptoms that troubled them the most. Tinnitus was almost 100%. So I am sorry your Doc was so closed and non receptive. Her day will come. I read that fact in the book written by Martyn Hooper - Pernicious Anaemia The Forgotten Illness and B12 Deficiency.

    Hope you soon find some improvements....

  • Hi,

    I have tinnitus and have had for some time. For a long time I had no idea it was connected to B12d. Surprise, then, when I get enough B12 my ears go quiet! I consider this a miracle as it drives me crazy. It gets really loud sometimes.

    But I have to have a lot of B12.

    I self inject with a prescription from my doctor who just okayed me injecting methyl 2x a week. I am in the U.S.

    Had to increase it from 1x a week when I started exercising again after a long period of inactivity due to massive fatigue from the B12d.

    I also take sublingual methyl and will start soon adding sublingual adenosyl. On the sublingual methyl, I take 5-10mgs daily. So, it takes a lot to get my ears to shut up. I think I must have been low on B12 for quite awhile and my first symptom, although I didn't know it, was the tinnitus. Maybe

    That's why I need so much B12 to keep them quiet-the nerves are still healing.

    I am not a doctor but it seems to me that getting way more B12 would help you a lot!

    There is hope. Best of luck to you! :-)

  • Oh Mags, I feel for you. I'm sure some very experienced people on this forum will be able to advise you. I so wish I could. I know I've had dr problems over the years. Treated like I was a total hypochondriac.

    Maybe you should contact the PASOC for their advice . I know I've spoken to them for help.

    All the best to you and hope you feel better soon. XO ūüĆļ

  • To give you an idea of costs I got 100 ampoules from versandapo.de for ¬£82 and a complete injection kit for 100 shots from Amazon for ¬£22 last week. Delivered to my door!

    The additional supplements I have to take are more expensive.

    Good luck!

  • Just looked on this site and they have an offer on for this quantity of hydroxo amps

  • You may want to print this out and give it to your doctor -

    noiseandhealth.org/article....

  • I have the tinnitus and it often disappears for a few weeks after my injection and returns when the next one is due. Unfortunately in uk the health service is so over run that unless you are an emergency you are made to feel a nuisance taking up a gps time. They are overstretched, and just don't have time to keep up with latest diagnosis skills. What annoys me more is the total waste of money treating people reactively when a cheap b12 blood test often results in a relief for so many symptoms.

    After years of to and frowning to my GP and being sent home with a costly pill for the symptom.......i found the Internet and private blood tests. .......then took all my research to GP who could say nothing except treat me properly!! I suggest you take documented evidence and put that GP in her place!

  • Go to Holland & Barret & buy vitamin B12 suppliments. They cost 12english pounds in Surrey. Could keep you going/help? A small tablet taken daily. Worked for ne.

  • Thanks everyone for your replies, I feel a little bit more positive today.

    I have previously tried the pills from Holland & Barrett and didn't really feel any different when I was taking them.

    I think I really need to look at my budget and see where I can make some savings so I can start to self inject as I think that may be my only option, having said that if it's only £82 for 100 ampoules that's going to last me quite a while I would think so it's probably more affordable than I initially thought which is great news.

    What I thought I would do is print out the symptoms page from the pa society's webpage and the info from that link above too and take it the next time I go to see the doc. The problem is it's such a busy practice that you very rarely get to see the same gp twice. (Maybe that's a good thing lol). There's also a couple of new gp's in the practice who are younger than the others so I might try and see one of them, there's one in particular I'm thinking of who seems very approachable so I'll see how it goes.

    Anyway thanks for all the advice I will keep you all updated as to the outcome of my next gp visit.

    Mags

  • i'm off to see the gp this afternoon.¬† Its a locum i am seeing (which is pretty normal for my practice) so i am hopeful of at least being listened to.

    I will update once i've been

    mags

    x

  • Ok had a very very productive visit with the gp. I saw a locum who I've seen before and we had a good chat about my symptoms etc. He agreed it very well could be the pa but would like to do a blood test. Told him I had one done the same day I had my jab so he goes onto the pc to look at my blood results and CAN'T find any b12 test at all since my last one a couple of years ago!!!

    So it looks like the nurse lied about doing the b12 test and lied about the results!

    So he has ordered a b12 blood test, knowing it's halfway through the 3 months so he's interested to see what my levels are. He has also referred me to ENT for some hearing tests. 

    I have still got the print outs in my handbag as I didn't need them but I will keep them there just in case. 

    So for once I am happy with the doc, he was very knowledgeable about pa and b12 deficiency. I'm hoping he's still at the surgery after my bloods have been done. 

    As for the nurse I'm not sure what to do about her. Unfortunately it's the same nurse I'm seeing for my bloods next week. ūüėē

    Mags

    X

  • My doctors would not have it that my brain fog amongst other things were because of B12 deficiency and I have also been made to feel stupid about my symptoms. ¬†NICE website is for Doctors and 1 they can't argue with. ¬†Print it off circle what you want them to see, ask them to read it and see then what they think of your symptoms. ¬†Do not give up. I am finally winning although I keep a supply of B12 injections at home. ¬†They now seem to be listening to me and I finally feel that I am getting somewhere. ¬†Keep at them and good luck.

  • Just wanted to update

    visited the gp last week and managed to get a print out of my bloods. The nurse finally did that b12 test because the dr ordered her to lol.

    Anyway I take methotrexate for the rheumatoid arthritis, and am type 2 insulin dependant diabetic,  (I also take metformin for this!!). I have been having issues with my shoulder and have been referred to the shoulder clinic, physiotherapy and another doc in the practice for a "joint injection". Wee bit skeptical about this as i need steroid injections into my knee and the consultant won't do them because my hba1c is still too high and i take methotrexate so he has referred me back to rheumatology to sort that out.

    i did manage to get a deal on wowcher for some b12 patches and they arrived last week, well i put one on friday and from saturday until yesterday i have had so much energy its unreal and the tinnitus had calmed slightly. Well today ive woken up feeling like ive been hit by a bus and the tinnitus is worse than ever. Its almost as bad as if i've had a big crash like i do before i need my next jab :( So if i feel like this tomorrow i will be putting another patch on. If this is the case then I will need to investigate the cost of the patches and see if it's worth me getting those or to just go the whole hog and self inject. (anything to avoid more needles lol)

    Anyway can anyone help with these blood results and tell me which other supplements i may need. (These were taken on 1st april).

    Haemoglobin (115 - 160g/L)      128

    Red Cell Count (3.8 - 5.8)           4.90

    Haematocrit (0.37 - 0,47)           0.386

    Mean Cell Volume (78-98 f1)     79

    Mean Cell Hb (27.0 - 32.0 pg)     26.1

    White Cell Count (4.0 - 11.0)       10.5  (previous 11.1 on 25/2/16)

    Neutrophil Count (2.0 - 7.5)        6.83

    Lymphocite Count (1.5 - 4.0)       2.81

    Monocyte Count (0.2 - 0.8)          0.51

    Eosinophil Count (0.04 - 0.4)        0.24

    Basophil Count (0.01 - 0.1)           0.06

    Platelet Count (150 - 400)            402

    ESR (3 - 15 mm/hr)                          49

    Creatinine ( 50 - 98 umol/L)           64

    Sodium (135 - 145)                         137

    Potassium ( 3.6 - 5.0)                       4.4

    Bilirubin  (3 - 21)                              5

    ALT (10 - 50)                                      12

    Alk.Phos ( 40 - 125)                           86

    GGT  (5 - 35)                                      40 H

    Albumin ( 36 - 47)                              32L

    HbA1c (IFCC) (20 - 42)                        69 (this was done 21/12/15)

    Vitamin B12 (180 - 2000)                   875   (this is about 6 weeks after my injection)

    Ferritin  (15 - 200)                                45   (I take 5mg folic acid 6 days out of 7)

    In brackets are the reference ranges.  Doc didnt think it was worth testing my vit D level. 

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