Help with issues re GP and NHS guidel... - Pernicious Anaemi...

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Help with issues re GP and NHS guidelines - my OH has serious problems....

jilly111 profile image
9 Replies

My husband has had all the symptoms of Vit B12 deficiency for many years but no one has diagnosed him or done the tests! Because of his deteriorating condition (thought he was going to die last week!!) I did some research (it's how I came to join this site) We asked for a B12 test and rec'd the results yesterday of 178. His health with ALL the symptoms (including low platelets since at least 2007) have worsened.

Saw the doctor for results, told IT'S NORMAL. We questioned it and said for an elderly patient especially it is LOW. We asked for injections because of his deteriorating condition but was refused because of NHS guidelines for not treating over a certain range. GP said if he went against the guidelines did HE WOULD BE STRUCK OFF.

He agreed to refer him back to Elderly Medicine consultant as he told us only he could make the decision. This is the part I would like clarification on PLEASE if at all possible.....could the GP have authorised the jabs AND if he had, would he have been struck off?

I am desperate for this info if anyone can help or give me link to information especially as I fear a further wait without any help is going to soon be worse case scenario <sad face>

Many thanks in advance.

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clivealive profile image
clivealiveForum Support

Hi jilly111 do you know what the range <from - to> was used for the B12 test and dare I ask how old (I'm 76) your husband is?

I'd love to know what guideline the doctor was quoting for "not treating over a certain range. " I've never heard anything like it....

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Was your husband's Folate tested?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

fbirder profile image
fbirder

Print this out and post it to your doc, with a covering letter...

hey.nhs.uk/wp/wp-content/up...

jilly111 profile image
jilly111

Hi all and thanks so much for your responses. Just a little background. Hubby 81 diabetic, peripheral neuropathy / on insulin. Manages condition well, Endo pleased with it all.

RANGE......

Not given a print out of results so no idea what was done only b12 and full blood count, they didn't give any other results. No idea the range they used. Separately when I saw my nurse and asked about B12 test for hubby she told me they do not start treatment unless results are below 145 !!!

RESULTS.....

Hubby got the test and we saw nurse/practitioner for result who said normal I asked for figure (178) and I said it's LOW and mentioned worsening symptoms and that he needs the jab. She agreed reading was low but then said she can't prescribe but to see doc which we did.

GP

Doc said "normal", we disagreed and asked for injections he then said "can't or I will be struck off" (I wished). He has now referred him (we hope) to consultant who hubby has been seeing for all his symptoms since last year. He had homocysteine test (only because my daughter had by chance seen a tv prog about it). Result for hubby was 15.4. Consultant did nothing but said my be helpful to take supplement! This is why I took up the research on everything related as we had no idea that B12 could be the problem.

NEW HEALTH PROBLEMS....

With worsening symptoms my hubby this week has developed severe lower back pain though has done nothing to bring this on. I am thinking that this is now one of the symptoms when deficiency is severe though I could be wrong. November last he had what I considered a slight stroke, facial droop and slightly slurred speech. Stroke consultant said no but could have been a TIA. However, those physical signs com back occasionally when hubby is stressed and I've no idea why!

MY REACTION.....

I have now emailed the consultant and told him about hubby's worsening conditions etc etc and in no uncertain terms told him how unhappy I am with the way hubby's condition has been handled. As I said to him I accept we all die, that illness prevails for our demise..but what I will NOT accept is someone dying through a vitamin deficiency which still hasn't been diagnosed when over the years this could have been prevented.

Sorry for long post but thanks SO much for the good information here, I appreciate it.

ps how does one log out of this site please?

<smile>

Marz profile image
Marz in reply to jilly111

Homocysteine is a marker for strokes and cardiac issues. Result needs to be in single figures and lower is better. B12 and all B's taken can help reduce along with Betaine HCL ...

jilly111 profile image
jilly111

Hi Marz, thanks so much. Hubby had a mild stroke in 2007 (he had low platelets then...so probably B12 deficient ...) and a TIA after that. November last year he had what I thought a stroke, facial droop slurred speech. A n E did CT scan and last month when we finally saw stroke consultant (don't ask!!) he said it wasn't a stroke "might have been a TIA" nothing done. All has been left but when OH gets stressed, the facial droop and a little slurred speech appears again but not for long.

Also just a few days ago he developed pain in his lower back at the waist, not had it before....I saw by chance on here that although could be other factors it can be down to B12 deficiency. Seems to coincidental to me not to be....but of course I can't be sure. x

jilly111 profile image
jilly111

Hi, I don't know if my posting here again will wake the thread up but just to say I have finally got a print out of my husbands blood test results.

Hopefully someone who asked for them here might be able to help me. I just hope I can get them to post as I typed them out. Thanks in advance for any help.

Vitamin B12 178RANGE(145 - 941)

Folate3.35 (3.00 - 20.00)

Total white cell count7.2 10*9/L (4.0 - 11.0)

Red blood count5.10 10*12/L(3.50 -5.50)

Haemoglobin estimation156.0 g/L(130.0 - 170.0)

Haematocrit 0.47 L/L(0.33 - 0.50)

Mean Corpuscular Volume02.0 f/L(80.0 - 100.0)

" " Hgb3.6 pg(27.0 - 34.0)

" " Hb conc332.0 g/L(315.0 - 345.0)

Red Blood cell dist width14.5 %(8.0 - 16.0)

PLATELET COUNT133 10*9/L (140 - 400)

Neutrophil count5.2 10*9/L(2.0 - 8.0)

Lymphocyte count1.3 10*9/L(1.0 - 4.0)

Monocyte count0.5 10*9/L(0.1 - 1.0)

Eosinophilcount0.2 10*9L(0.0 - 0.4)

Basophil count0.0 10*9/L(0.0 - 0.3)

DeeD123 profile image
DeeD123

I’m sure someone will pick this up soon and help you out. X

jilly111 profile image
jilly111 in reply to DeeD123

Thanks Dee...I hope so as I don't know apart from the B12 and low platelets if nothing else is a pointer to vit B 12 deficiency. X

DeeD123 profile image
DeeD123 in reply to jilly111

Looks like you might have to make it a new post jilly. Best of luck

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