Hello Foggyme, Gambit, Clive alive et al, I spoke to someone at PAS yesterday and they advised me to print off the document - Update for healthcare professionals and give it to the GP, unfortunately I have already done this to no avail. As I said in my last post the GP discussed this with other colleagues including the one I saw before who told me there was nothing wrong with me, who had ignored my blood tests. They are convinced I don't have PA and that it is functional B12 deficiency even though my previous bloods from St Thomas' we're only 189ng/l and my last bloods tested at the local hospital were down 50ng/l to 254ng/l So what hope do I have! I had my first injection last Monday and won't get another for 8wks as GP has refused to give me loading doses and is going to do another blood test then. I was wondering how long this will remain in my body and how it will affect the results of the test. Because I'm thinking of having another active B12 test at St Thomas' to try and prove I'm deficient before the next injection. I feel like I have come to an impasse with the GP and don't know what to do. Your thoughts and advice are always appreciated.
Many thanks
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Cali25
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Hi Cali25 I'm probably the least qualified to reply but I'm wondering whether you have done anything about your low Folate level from 3 months ago.
Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine and yours was a bit "high" back then.
What did the "someone" at PASoc say when you told them that you had already carried out their suggestion to send a copy of the "Update for healthcare professionals" but to no avail?
Hi Clivealive, thanks for your reply. The answer to the folate is nothing as of course that falls into the normal level and as the GP can't get the B12 right no chance of him understanding you need folate. It's all very frustrating as I know I need to get the homocysteine level down as well. So all he has done is double the ferritin and stop the Vit D. The guy at PA soc just said to give him it again saying the society have instructed me to tell him and blame everything on them. Also to let the society know how I get on! Wasn't too impressed really sounded like he was in a rush and wanted to get off th phone.
When you spoke to the PAS did you make it clear that you had already taken the steps that they were suggesting?
It might be best to actually try writing to your GP with the information you have and looking for a response in writing as this might make it easier to follow up.
Hi Gambit, I did make it clear to the PAS that I had already given this information to the GP. I printed off all the documents that you and others advised to give to the GP and wrote a letter and sent this to him back in February. I have not had any reply in writing from the GP, I doubt he actually read any of it.
sorry that you have had such a bad experience - I've never actually tried contacting the PAS for support myself but it doesn't seem that you have had the support that is talked about in Martyn's blogs and can understand if you feel that you are being sent around in circles, but I would suggest that you try contacting them again and push back politely if the person you speak to advises you to again do something that you have already done. Have a copy of the letter that you sent to hand and read it to them and see what they suggest. You could also try sending a copy of the letter to the practice manager and the local PALs asking them if they can investigate why you haven't had a response - lay out what treatment you believe you should be having (loading doses?) and why you feel that treatment is appropriate - unless that is already clearly stated in the original letter.
I'm going to write another letter to the GP and enclose the information on SACDSC along with another list of my symptoms. Explain that this is why I need loading doses. I personally don't think it's functional b12 because my levels are not high, but if the info can persuade him to give me loading doses I won't care. I'm also going to send a copy to the practice manager and ask for a response. Maybe I should ask if they are going to take responsibility for my deteriorating neuro symptoms through lack of loading doses as outlined in the BNF/NICE Guidance.
If this doesn't do any good I will SI after the next injection, as the GP is going to do more bloods . If I SI before this I'm worried the GP will say I'm ok and stop the treatment, he thinks b12 treatment is maintenance doses and loading doses for Anaemia. No mention of taking folate as well.
Have you considered writing a letter to GP expressing concerns, perhaps with symptom list, quotes from relevant B12 documents, relevant blood results?
I found it helpful to read fbirder 's summary of B12 documents. LInk to summary in third pinned post.
In UK, my understanding is that letters to GP are filed with medical notes so are a record of issues raised. I have included a request to put letters with my medical notes in the past.
"They are convinced I don't have PA and that it is functional B12 deficiency "
I thought that both PA and Functional B12 deficiency require B12 injections so whichever diagnosis is correct I think the treatment would be the same.
Hopefully somene who knows more about functional b12 deficiency will be able to comment on treatment.
In fact I think the fact that functional b12 deficiency can be sometimes be linked with spinal damage would be persuasive enough to get adequate treatment.
Are your GPs aware that functional b12 deficiency can be linked to spinal problems?
I think some people on forum have tried to make GPs aware of the possible neurological consequences of inadequate B12 treatment. There is an article on SACDSC (sub acute combined degeneration of the spinal cord( available to PAS members in library section on website.
Hi Sleepybunny, thanks for your reply, as you can see from my reply to Gambit I have provided all this information along with a letter and sent it to the GP. I've also given a list of the symptoms and I have discussed the family connection as both my mother and maternal grandfather had PA. I also take meds that deplete B12. You will see from my previous posts all the investigations I have had done. The doctors just won't accept what you say, they don't like the fact you're more informed than they are. When I told the GP I just want him to follow the guidance by NICE/ NHS, in the BNF all he said was well it's " guidance" so you can see what I'm up against along with many long suffering people on this board. I have thought about SI but think I have to wait until GP does another blood test at end of August because if the result was high he'd say I'm OK and don't need anymore.
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