Is it time to get snotty?

[Poppet11]

It's Sunday again...

Just thinking: in light of the new BMJ article is it worth going to the docs with heads held high (and moral support if necessary), putting the article down in front of them and saying:

This research says the symptoms come before the anaemia and they can be permanent. This research says the test you have been doing is neither reliable nor accurate. What have you got to say about that since I've been reporting symptoms to you for X amount of time and you keep saying I'm 'borderline' ?

Okay, maybe the word is assertive not snotty. But maybe it is time to ask doctors to start understanding this condition and treating it properly?

They'll put on your records that you are non-compliant - but they probably put that anyway...

[Leilanilea]

Poppett,

Sounds like an excellent approach.

Thanks,

Leilani

[Leilanilea]

Poppett,

Thank you for pointing us to the rapid responses, which I just finished reading in full.

That of Nikolai Manassiev, GP, Goodrest Croft Surgery, on 04 Sept. 2014, appears extremely sarcastic, defensive, and unprofessional.

The others I found informative and helpful to varying degrees, particularly that by K. Thompson, relating some pertinent history of B-12 deficiency and/or pernicious anemia, reminding us that in the 1940-1950s pharmaceutical companies were concentrating on treatment of hematological manifestations, which were believed to precede neurological symptoms. (This view was also prevalent in the 1920s, according to Thompson's post.)

Thank you for your time and knowledge,

Leilani

[Poppet11 in reply to Leilanilea]

I think in a way the GP with attitude has done us a favour - he has shown other people what kind of attitude we have to face. If he will talk to his peers (and the BMJ) in such a manner, how disrespectful and dismissive will he be to his patients?

[Leilanilea in reply to Poppet11]

Absolutely!

[Poppet11 in reply to Leilanilea]

The interesting fact here, Leilani, is that if you look on the data sheets of b12 today, it gives guidelines for treating anaemia. It does not give guidelines for treating neuro damage. It would appear they are still under the impression that if you treat the anaemia the neuro damage will be prevented.

[Leilanilea in reply to Poppet11]

Not sure what you mean by data sheets?

[Poppet11 in reply to Leilanilea]

The guidance information sheets that are provided with drugs and are usually listed online.

I can tell you for certain that when I contacted a pharmaceutical company and asked them for the guidance on treating neurological symptoms rather than the anaemia, I was told the product wasn't for treating neurological symptoms.

Since the anaemia comes after the neuro symptoms don't you think this is a bizarre statement to make?

[Leilanilea in reply to Poppet11]

I'd like to do a little research on this too...would you mind telling me what specific drug you were questioning? Thanks. And yes, bizarre....

[Poppet11 in reply to Leilanilea]

I can't tell you which specific company but it was just one that sells b12 injections in the UK. If you look on most guidance sheets that come with the injections, it clearly states it on there - it's for treating anaemia.

[Leilanilea in reply to Poppet11]

I see...thanks.

[Leilanilea in reply to Poppet11]

Poppitt

Excerpt from NIH site -- Hydroxocobalamin Drug Label updated 2008

Treatment of Vitamin B12 Deficiency

"Thirty mcg daily for 5 to 10 days followed by 100 to 200 mcg monthly injected intramuscularly. If the patient is critically ill, or has neurologic disease, an infectious disease or hyperthyroidism, considerably higher doses may be indicated. However, current data indicate that the optimum obtainable neurologic response may be expected with a dosage of vitamin B12 sufficient to produce good hematologic response."

So, if a person's complete blood count were normal but they had/have neuro symptoms (my situation), there would be no hematologic parameters to follow, thus no way to ascertain an optimal B12 dose! Egg or Chicken.

Leilani

[Poppet11 in reply to Leilanilea]

They are covering their backs there - well, sort of, someone might ask to see the current data that indicates the optimal neurologic response may be expected ... blah.

Saying that, their dosage regimen is above the standard guidelines even for anaemia. Daily doses but at 30mcg (see below) and then monthly, not 3 monthly!

But it's back to what I was saying to Marre a few weeks ago - patients must ask their doctors to report to pharmaceutical companies that the product is not resolving neuro issues.

Even way back, when they were first developing b12 they knew that the haematological responses took only very small amounts (of their finest product - which was basic by today's standards) for a full response in regeneration of red cells, haemoglobin and reticulocytes. 300 mcgs to be exact.

According to that guidance apparently all ills will be resolved at that dosage.

[Hidden]

Thank you Poppet, for keeping us informed.

Take care of yourself.

[BLVD]

This is what I'm going to complain about this aft. I have had to self medicate as the NHS doesn't do methylcobalamin and the cyanide (!) doesn't work for me, only builds up in my blood but doesn't get to the cells so I look like I have a Supadupa reading (1207) but really I'm deficient and feeling ok now I've been taking my methylc. I just want to COMPLAIN! And it's a nuisance that every time I come on this site and want to 'like' (recommend) a comment, I have to sign in with my Facebook e mail and password Is this a new rule?

[Poppet11]

I don't know - I can recommend - I just recommended you!

Good luck. Don't lose your temper - be assertive not furious!

[ukangell]

Can you link me the article please. I'd like to read it. Been deleting BMJ e-mails of late as I haven't had the time to go through the article headings. Tx

[Hidden in reply to ukangell]

See:

healthunlocked.com/pasoc/po...

[Poppet11]

I think it's great that the research team who put the paper together regarding identification of the illness have made reference to the treatment guidelines (because there is nothing else) but stressed that they aren't really based on any research. They are disassociating themselves from the lousy treatment guidelines.