Thank you - hopefully on the road to recovery

TSH 9.9 (0.4 -4.5)

Vit d 49.2 (50-250)

Folate 9.1 (3-197)

Ferritin 77 (11-307

Visited my GP today to discuss the above latest blood results. He advised that it was good news and my TSH levels had decreased from 21.99. I told him that I was not leaving until he treated me appropriately. I advised him to look at his NICE guideline and see that in April 2016 I should have been treated with loading doses of b12 (113) whether I was anaemic or not. Instead I was given 1 and another in August. I advised that I wanted loading doses from today until my symptoms of brain fog disappeared.

The GP advised that I do have Hashimotos. I advised that he needs to get my vitamin level at least half way up the ranges.

GP apologised and agreed to start 6 loading doses of b12 every other day for at least 6 times. He perscribed another 25mg of Levo (now 75mg). He has perscribed 5mg daily of folic acid, 210mg of ferrous fumarate and 40000u vitamin d (D3) tablets for 7 weeks.

I wanted to thank those who have advised me in my thyroid and b12 to date.

Can anyone tell me if all this is correct please.

Feel relived that I was listened to today but bad that it has taken this long and I had to tell the GP what to do!!

10 Replies

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  • Glad you got somewhere. At least gp did listen and take onboard what you wanted. Lets hope a better level of treatment now follows.

  • All I can say MzChapperz is congratulations you can now re-join the human race.

    I hope your symptoms improve soon.

  • Hi McChapperez. Oh well done you...very good news indeed ๐Ÿ˜€.

    The only thing I would say is what happens after the loading doses.

    If you do not have neurological symptoms (you can find a list of these on the PAS website), then you should get injections every three months, after the loading doses. It has to be said that this is not enough to for some people...but that's a thought for another day (when you see if three monthly works, or not).

    However, if you have neurological symptoms (and some would say that brain fog is a neuro symptom) you should have injections every other day until there is no further improvement, and then injections every eight weeks (again, not enough for some).

    I'm very impressed that you stood your ground...and even more impressed that your GP listened. Eureka ๐Ÿ˜€.

    Take care and please let us know how you get on x

  • Hi

    I have been told that I needed the loading doses despite not being PA do you believe differently?) I have used my brain fog as the neurological symptom because I believe it is.

    I will be given maintainable doses after the loading doses, every 3 months but I will go back to my GP and ask for more frequent if I feel I need them.

    I'm so exhausted Nd fed up of feeling tired all the time and not being able to think I was not going to take any messing from the GP today and I think he knew that. I would literally have stayed in his room all day until he listened to me.....he had no choice really! ๐Ÿ˜ƒ

  • Hi MzChapperz. No, I don't believe differently. If you have B12 deficiency you need the loading doses and then the correct B12 regime, according to symptoms.

    The treatment for PA and B12 deficiency is the same: B12 injections.

    You did really well to hold your ground with your GP. And not many GP's will accept brain fog as a neurological symptoms (strange as that sounds), so an even bigger well done.

    hope that the B12 kicks in soon and that the tiredness and fog soon become a thing of the past.

    I love your determination - we could perhaps loan you out as an advocate to, well, basically, most of us - GP's beware ๐Ÿ˜€๐Ÿ˜€๐Ÿ˜€

  • Seems to be a common problem. I was the same and he was still reluctant to give in .

  • Well done for getting B12 treatment.

    The info about UK B12 treatment for those with and without neuro symptoms is on page 8 of the BCSH Cobalamin and Folate guidelines(these are different to NICE guidelines).

    I gave a copy of the following to my GPs

    1) Copy of BCSH Cobalamin and Folate Guidelines

    2) Copy of the PAS Symptoms checklist with al mys ymptoms ticked especially neuro symptoms

    3) A copy of Martyn hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with current UK guidelnes.

    "in April 2016 I should have been treated with loading doses of b12 (113)"

    My understanding of the "BCSH Cobalamin and Folate guidelines" is that with a result that low you should have had an IFA test (Intrinsic factor antibody) test.

    See page 29 of the BCSH Cobalamin and Folate Guidelines which has a flowchart of the recommended process a GP/medic should follow with someone they suspect has B12 deficiency including when to order an IFA test.

    "bad that it has taken this long and I had to tell the GP what to do!!" at least he listened but understand your frustration, hopefully he'll read any info you give him.

    There is a section on PAS website for health professionals that he might find helpful. There is also an app about the BCSH Cobalamin and Folate Guidelines that would count towards Continuous Professional development credits for GPs

    martynhooper.com/2015/11/01...

  • Well done you.

    Your b12 levels really need to be circa 1000 so you will definitely need some for of b12 supplements after the loading doses have finished. Have a look at b12 body sprays. Most people I know take jarrow tablets or sub lingual sprays but these are less affective.

    Sorry not sure if the vit d is weekly but min dose should be 50000 a week.

    Good luck.

  • Well done, nice to read ๐Ÿ˜Š

    I have read a lot about folic acid versus folate supplements recently and have bought folate myself to get the benefit of b12. Can't find the links right now, but it is certainly worth digging into the subject!

    Good luck ๐Ÿ’œ

  • Excellent news! :-) it is always wonderful to hear of people being treated properly by their physicians.

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