Pernicious Anaemia Society
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Oh deary me. I so want to give up. Could admin staff read and help? P,ease?


So, fed up with the ignorance, downright insults, finally changed surgery.

Unctuous fellow scandalised that my meds had not been reviewed, but there is a tale there, request/plea for an alternative pill to Pilocarpine for worsening Sjogrens brings theatrical disbelief that no chemist around will dispense it, I am a dental surgeon I know this pill, it is 30yrs old... at which point, had I had any tears I would have wept, but pressing on for B12 injections he turned into a Dalek. And spouted we have to adhere to NICE and blanked me, gave me another prescription for a drug I cant get and asked if I had topical treatment for my swollen sore eyes, for the terribly flaring Sjogrens which is systemic, for which I need the med.

So much for my first apt with first GP in practice. Even the prescription was written on someone elses script pad!

That was yesterday, today, Friday I have apt with gastro who ordered CT in Sept, scan looking for nonexisting bleeding to find source of anaemia. This was after a discussion on whether my acute, non treated illness in February was indeed pancreatitis, or whether I had been tested for Coeliacs, I have five other autoimmune diseases, and as I understood it check me out for any other thing making me so weak and ill.

I received a letter in October of four lines telling me that my organs wete fine. Needless to say... miffed. After cancelling my apt with top cons for 7th I went into meltdown saying I needed answers. I could have apt today.

I arrive to find I am downgraded to a nurse. I fall in a heap. Problem? I want answers. I can do that. Well did the CT scan show the villi? Pardon. Pause. For coeliacs, did... The what?

I want to see a doc. Not a happy bunny. Respect to nurse but she not have answers. Eventually to see she who ordered CT scan. Unexpected hurray.

All explained again. BUT THE CT SCAN WAS ONLY LOOKING FOR BLEEDING, so proof of coeliacs? Proof of malabsorbtion of B12? All organs fine. Well nice though that is WHAT ABOUT ALL THE QUESTIONS?

Told her I went gf the day of the CT scan as I could no longer stand pain and bloating. Oh good. Fab ses I much better, but not right. And so we go on until the summary.

I stopped PPI in Sept prep for IF blood test and the Vit B12 mythylcobalomin supplement I had been on, for the other recommended blood tests for Vit B 12. Not good enough. I have to gluten myself until apt comes through for gut biopsy via endoscopy. Prob about 6 weeks. Is this long enough though?

I have had blood taken for

TAA GGT GPC IFBA VIT D FERRITIN U & E AND LFT CALC AND ALBUMIN AND THYROID, WHICH i could have showed her as I paid for a panel privately and seems all cleAr.

I appreciate her time. Has she stepped in on B12/PA tests to save any more moronic encounters with GPs? Oh, yes, 246 is within our hospital norm for B 12 yes but not ACTIVE B12...

Can anyone find a glimmer of hope for me? I have apt in system for yet another endoscopy with biopsy this time... the definitive test she say??

Yes, I miss only about four of the symptoms on the given symptom list incl neuropathy of feet. There is something wrong with the vision of my right eye. Now I have to poison myself over Christmas. Oh joy.

Please unscramble and give me some tiny grain of hope, or I shall do what they seem to be telling me, go away and die!


10 Replies

I am sorry that you are having such a bad time . DO NOT GIVE UP HOPE ! You have friends here .

I don't have the multiple problems that you have . I have been watching the videos that Dr


Sorry , something strange happened on my mobile ! I suggest that you watch the videos that have been compiled by Dr Tom O Bryan -Google it's an eye-opener for all with the multiple autoimmune problems like you have. It is an American video,so so presented in that American way . But don't let that put you off . (There is a lot of padding to wade through . ) Polaris put us in touch with this , so many thanks to him/ her.

I hope that this helps a little . Very best wishes to you .


Sounds an absolute nightmare for you. Sorry I can't offer advice, I'm sure you will get someone very clever or experienced to help on this forum but I wanted to offer moral support and I am sure you will get there just keep your spirits up at a very difficult time for you....


Reply don't know how you cope with your job but hey this series may help you, I didn't think of posting here as we are thyroid site get your posts so I thought you get ours, there may still be time to sign upif not look on tuk as the daily posts someone willpost there


Hi - I'm not sure if this will help you at all but this is what I ended up resorting to once I'd been fobbed off by the GPs for me nth and months. I suddenly developed a pain I can't describe under my right rib cage after month of telling the gps I was struggling with exhaustion/malaise - just not right. And the answer I got "everybody is tired these days, it's a sign of the time" !!!!! Anyway I have a very good friend who I called whilst curled up on the sofa crying in agony who made me call the paramedics (I'm the kind of person who has never been ill other than the odd cold here and there - I've been very fortunate in my first 40 years of life 😊) so I called them and they came and got me and admitted me to hospital. From that point I actually got some help. The dr that took my bloods in a&e was astounded that I was still working/managing and riding horses etc, because my anemia was so bad, he said I should've been not being able to get up at all!! No wonder I was struggling to drag my carcass out of bed every morning to go and let my horse out and get dressed and get to work!! Anyway from this point stuff actually started to happen. Turns out I have chrohns disease and that was the reason my blood count was so low - I was bleeding slowly from my intestines! I'm not sure if you would get some help this way - but it was at this point that the medical professionals sat up and actually took notice that I was actually as sick as I was telling them!! Might be the only option you are left with to try and get to the bottom of the cause of why you are so poorly! I have to say the snotty GPs that I use were absolutely useless and not caring, except for one doctor at the surgery who is a locum doctor anyway - but the paramedics and the hospital staff were wonderful. I hope you find relief soon. I know the feeling of how these gps make you feel like you are making up stories!!

All my love cx


Thanks so much for your replies and support. I am usually quite strong and resolute but I am in pieces and would be sobbing all day if eyes watered!

I am cautious of the videos as no body or "experts" I know and trust have commentated.

Would fbirder or anyone like that read this to advise about those blood tests? Are thèy of any use? Is 6 weeks eating gluten enough for biopsy? I have been gf since 9th Sept and had relief but dr insists go back on gluten awaiting apt for endoscopy biopsy at least 6 weeks I think.

So sorry I sound pathetic but worn down.

Any details re blood tests would be good. Ta

Love and thanks



Unlike you I only have four autoimmune illnesses (that I know of) but my experiences and lot of other peoples experiences are very similar in the way they are regarded by the medical profession, they simply have no answers for us we do not fit into any of their boxes or should I say none of their boxes fit us.

It is stories like yours as well as my own experiences that have lead me to the sad conclusion that I have to sort myself out. I no longer have any expectation of getting any help from my GP and visits to the haematologist that I see twice yearly just make me feel angry and upset ... so a waste of his time and mine.

But on a happier note... with the help of people on this forum and other help sites I am making progress and I hope you will too. The truth is if you have autoimmune issues then you probably know more about them than your doctor.

I don t mean to sound negative, helping myself and learning about things has been very positive for me. As wedgewood said you have friends here so don t give up hope. Good luck on your journey.


Thanks pugdogs. I hope to reach your level of calm and acceptance one day. Trouble is I get indignant which lights my fire and starts me off again. I had to do private Thyroid test so wary was I of asking useless former GP for test to explain debilitating tiredness on top of usual continuing 16 yr fatigue. It came back as ok.

Then my anticipation is held by the ankles and has its brains dashed against the nearest wall, ( sorry for GoThrones ref. Thought it appropriate.) and down go my spirits again, adding to my much depleted er well. id say energy but it aint there, er ether?

I had determined to ask one last time for new GP to test MMA IF etc when he told me he is dental surgeon and robotically said, GOTTA STAY WITH NICE GUIDELINES when I begged for B12 inj whilst waiting for test results. Now gastro taken over with who know result.

In any case will be self injecting in New Year cos I cannot conceive feeling worse than this.

Lying in a chair and breathing is no life. I dont want to work in a circus, I just want a bit of life back.

Thanks for your example, and support



I don t always have a level of calm acceptance I am sometimes upset and indignant like you but having some level of control is the main thing for me. Feeling helpless as I did before I started self injecting was the worse thing.

Incidentally did you post your private Thyroid test results on Thyroid UK? I found them really knowledgeable on blood results and found out things I didn t know like for instance if you take supplements which contain iodine it can attack the thyroid land if you have Hashi. (Yes I ve got that as well).

Take care.

1 like

Yes I did pug. I was told looked ok. Ta

Sorry for Hashi




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