Finally response from haematology

[ozwald28]

So i had a phone call a few weeks ago that went quite poorly. The GP blamed my extreme fatigue on my mental health. She refused to give more injections. She was clearly irritated by my knowledge. She did however request a blood test for homocystiene and for advice from haematology.

I went to GP yest walked for 20 mins in really bad rain on my day off work to be told they cant do that test at GP surgeries i need to go and wait at my local hospital without an appt. Fuming. 20 mins back in bad rain.

Has a 2nd opinion phone call today who explained haematology advice was to give b12 1 a month for 3 months and if im improved theyd presume i dont have PA. I said ill take the injections but that i wasn't happy to not have further tests. Seems a bit silly. Give someone treatment and if it helps then theres nothing wrong? No. If i have b12 injections and it helps we still dont know if i have PA. The haematologist said many people are borderline deficient without enlargement of cells (I was 150) i think thats deficient enough dont you think. Our parameters for deficiency are so ridiculous. 🙄🙄🙄🙄 and in that case improve with 3 months injections and no cause for further investigations. Anyway GP has sent a letter back saying i want them to test me properly. Shes a good GP to br fair i was on edge of a massive complaint but shes staved it off for now!!

I questionned the referral letter sent by first patronising GP and it said i was reading up around it as if im like malingering pr something !! Wtf. I said ive got much more interesting things to read about and care about than this ffs. I only read up around it because PA is in my family and the GP gave me absolutely NO information about my B12 deficiency.

[EllaNore]

That's appalling ozwald28!! Wth? I don't even know what to say. How dare they make a statement like that about you! So, you still never got your tests? Are you getting the IFAB and MMA and Homosystene tests? I was told to try not to have b12 a couple days prior, just for better chance of positive ifab.

150 is definitely deficient. Can you pay for your own private tests? That is what many resort to. Good luck to you.

[ozwald28 in reply to EllaNore]

Hi ellanore, no i couldnt get the homo test done as i have to go to the hospital but i am going tomorrow to get it done. I have another injection tomorrow finally after 2 months i feel desperately that i need it. I had a negative IFAB test - i need a parietal cell antibody test and then if thats negative they will rule out PA. XX

[EllaNore in reply to ozwald28]

how did the Homosystene test come yesterday? If PA runs in family, does anyone else have any test results proving PA? Perhaps showing docs others results would help with you.

a negative ifab test isn't conclusive proof as it can be inaccurate.

Just the fact that pa runs in your family and you have symptoms, is strong. I would try another ifab test. I hope homo test proves PA for you. Good luck. Let s know.

[ozwald28 in reply to EllaNore]

My aunt whos got PA is not interested in talking about it with me, shes been asked a few times to give me some help with it by my dad but shes just not bothered. The results of the homocysteine tests werent available when i spoke to the dr after a week so im not sure how long it'll take. They said they wont offer me an MMA or parietal anti body test so basically not going to run diagnostic tests.

[EllaNore in reply to ozwald28]

 gosh Oswald28, I'm really sorry your aunt doesn't want to help you. I hope she's taking care of herself. A week is a very long time to wait for test results. My homocysteine tests if I'm not mistaken did take a couple of days, but not week. My other test came back within 30 minutes. I'm so sorry they're dragging this on and putting you through this. I cannot even fathom why they won't run those simple tests for you. I'm so sorry.

is there any way you could try to do these tests out of pocket? I'm sorry that your aunt doesn't want to cooperate or help you. That's very sad.

My sister is a major alcoholic, she has diabetes and she has psoriatic arthritis. My grandmother took B12 injections. When I told my family that I had pernicious anemia and needed b12 injections for life nobody thought it was important to tell me that my grandmother got B12 injections. I found out by accident. She later died of stomach cancer. My cousin had stomach cancer. that sounds to me like it runs in my family but I can't get anybody to listen to me.

I'm sorry that you're left to deal with this by yourself. I do know how that feels. I sure hope they run your tests and get you some answers soon.

[ozwald28 in reply to EllaNore]

Thanks ellanore, thats the thing isnt it - the other health implications of PA other than b12 - the correlation to higher risk of stomach cancer etc- it would be good to be aware of it. It would cost about £700 to get that test i found. I have emailed the PA society which i am a member of - to ask for advice. Thanks so much for your support x

[EllaNore in reply to ozwald28]

Oh gosh, I had no idea how much those tests were. I'm so sorry. Right! PA seems to have a domino effect. One thing leads to another and they are all very serious complications. It really is nothing to play around with and I can't understand why no one will listen to me/us. Maybe there is just one test that could be conclusive, so you don't have to do all of them. If just one test came back as PA, they would have to do the other tests. wouldn't they? This is just crazy bulloni. This is uncalled for and needs to change. If it were diabetes they would be handing you the insulin and you would be self injecting no questions asked. And that is very easy to OD on. I inject my dog twice a day for 5 years and one tiny bit too much makes him lethargic and I have to give him maple syrup. B12 is so safe! Very shameful. Where does this kind of mentality even come from. and why?! I'm really sorry and I hope PAS helps you! Good luck!

🦋🧡🦋

[shaws in reply to ozwald28]

My mother was told by GP - after having B12 injections for years - that 'your blood tests are good and you don't need any more B12 injections! Both my sister and myself had never thought of GPs making false statements and we had no internet connection then.

I thought that GPs statement was 'good' but unfortunately due to B12 injections being stopped, mother developed stomach cancer and died. Neither did we have access to the internet when she was first diagnosed..

I also have P.A. so I will be very careful with regards to what the 'profesionals' state to me. My GP is helpful and said I can have as many B12 injections as I feel I need so I have a monthly one.

[EllaNore in reply to shaws]

 That is very sad about your mother Shaws. Myheart goes out to you..

I'm so sorry that happened to you both.

That is fantastic that you're new GP said you can have all the B12 injections you need. That is a good GP .

I used to believe every word my doctor said when I was younger. They're supposed to know better. And you don't want to be a hypochondriac or a Troublesome patient so you do what they say. And then you start questioning yourself because you don't think what they told you is right but they're the doctor so YOU must be wrong.

Believe your symptoms and don't ever let any doctor try to tell you it's all in your head. No one would do that. Trust yourself, trust your body listen to it. It knows more than anybody.