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Dr's visit as expected yesterday- he "doesn't believe" evidence I printed off for him :(

Jesswoozer1 profile image
8 Replies

Well yesterdays visit to my GP was a farce as predicted, and once again, despite taking my printed sheets ( from library here and links sent via forum) I came away in tears.

I took my partner with me as back up and another pair of ears and we both fared the same. Once again the Dr said "there is no indication on blood tests whatsoever that you are B12 deficient" I said my B12 was 402 in January pre op ..my symptoms of several years are much worse-could it be the nitrous oxide? He ignored this. My partner explained how my symptoms were getting much worse, that I can't function mentally, work or drive. I asked the Dr to look at my PAS symptom sheet on which 3/4 of the symptoms are ticked (all the neurological )

He wouldn't even look at it- he said you've given me this before (untrue) All I did last week were jot down some notes to remind MYSELF what I needed to discuss.

I asked that they be scanned into my notes.

I also gave him PTF downloads (printed out) from PAS about guidelines for treating B12 deficiency if there are neurological symptoms. He said well you were diagnosed with Functional Neurological Disorder last year !! Yes I agreed- and it's much much worse plus I am very short of breath and rather grey in colour and can't pee properly...do you think it COULD be lack of B12 causing ALL of this?? He wouldn't even LOOK at the downloads. I tried to show him guidelines for treating B12 with normal levels if there are neuro symptoms- he pushed the paper back to me. As he did with the Alert and guidance for medical practitioners.

He flatly refused to repeat B12, said Homocysteine blood test unavailable in Primary care and repeated I had no abnormal large RBC and B12 levels were normal in January .I asked him to scan all my downloaded info into my notes too.

Very, very reluctantly he agreed to an Intrinsic Factor test to put my " mind at rest". I've had that done this am. I also had my active B12 test arrive from Medichecks this am so I've done that and posted it.

He did my temperature, pulse and B/P and said all were normal. By this time he was talking over the top of me and my partner and I could see we were near the end of our 10 minutes.I once again asked him to look at the whole picture of my symptoms PLEASE. He said my breathlessness was of some concern and he ordered a chest xray ( which I had this morning) and a lung function test ( end of the week) I said as all these things ARE symptoms please please read the print outs and consider what I am saying. His actual words about the evidence on paper from PAS, extracts from BNF and Haematological Society were, " I don't believe any of this". How can he NOT widen his thinking and get out of his box just a little?

I asked for a Helicobacter test as I have also got heartburn. He agreed to this through glazed eyes.

So...how do I deal with him ? I feel so beaten down and so unwell. I have had such difficulty passing urine this last few weeks too. He didn't address that either. This am when I went for bloods , I asked for a specimen pot and gave a urine sample. the nurse was kind enough to test it- full of white blood cells. Understandably a UTI now as not able to empty bladder. No symptoms though. Really at my wits end now- she was going to discuss it with the Dr and send to the lab too, but I've heard nothing back about antibiotics yet.

I guess the next thing is to put it in writing to the Practice Manager...possibly after Intrinsic factor result. I know this isn't definitive either :(

Sorry for long rant. I have a horrible feeling I am going to end up in hospital at this rate. Thank you for listening! I'm sure many can sadly relate to these experiences :(

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Jesswoozer1
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8 Replies
Soozysoosop profile image
Soozysoosop

Have you thought about joining pa society it's £20 a year and often they will make a call on your behalf

Jesswoozer1 profile image
Jesswoozer1 in reply toSoozysoosop

I have joined thanks Soozysoosop! They have given invaluable advice- that's where all my downloads have come from :)

Soozysoosop profile image
Soozysoosop in reply toJesswoozer1

Brilliant , I wish you the best of luck this is a lovely supportive forum

Gambit62 profile image
Gambit62Administrator

You are right - the next stage is to put things in writing to the practice manager.

Please put good emphasis on the fact that macrocytosis isn't present in at least 25-30% of people presenting with B12 deficiency. The serum B12 test is roughly the same - missing about 25% of people who are B12 deficient if used as a single guide. Symptoms are therefore a very important part of diagnosis.

Steap profile image
Steap

"How do I deal with him"???

Quite easy really.

Don't

Why would you want someone so ill informed and condescending taking care of your health.

Find another Gp who didn't train during the war.

kimandken profile image
kimandken

I went through the same thing with my dr. i had all kinds of information printed out that I received from here. I was literally in tears just trying to get her to test my b12. she told me because my iron was ok that there was no way i would be low on b12. I showed her proof that wasnt true and she still wasnt having it. she finally gave in and sure enough i was normal range but very low and been having neurological symptoms i cant breath it was like 25 symptoms i have. I explained that its been proven that people under 400 can have symptoms and she looked at me and said that is not true and i dont believe it. well i now have found a new dr. and he is doing some test i requested and i hope this goes better and we can figure it out. Believe me i do know your flusteration. I hope you can figure this out soon and there is good support here as i am new myself....take care and hang in there...I live in new hampshire by the way

Jesswoozer1 profile image
Jesswoozer1 in reply tokimandken

Thank you kimandken! It's so, so sad and frustrating that it is such a battle to get diagnosed. And if it isn't a B12 deficiency then WHAT is it? Why won't the Dr hear me? Why the defence shield? And shouldn't he be a little concerned as to what it MAY be?

Sounds like you have had a similar experience. ..this has been such a good way of connecting with people who are going through the same stuff.

Thank you ! I'm in Wales, UK. Seems the problems with Drs are worldwide sadly.

kimandken profile image
kimandken

a couple more this. i have had all kinds of test. i have had heart monitor on now for palpitations that b 12 can cause i have that on now. i have had the extensive breathing test . i have had an ultra sound of my stomach done today. i have had xray and ct of my lungs and sinuses. i have an appointment for colonoscopy and upper endostomy for next week. all these test and it could be b12 but its a struggle getting someone to listen. you were right to take someone with you to your appointment as i was told here sometimes you can get them to listen when you have a witness with you at your appointment. its sad this is how it is these days but all we can do is keep pushing for what we deserve to feel better.

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