Pernicious Anaemia Society
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Some success with GP

I went to my docs this morning and she was really receptive to the research paper that Firebird suggested taking to the GP. She also, at my suggestion, had a look in the BNF for their guidelines. She's agreed to giving me another injection in 2 weeks time which will be about a month since the last one. Unfortunately she isn't top dog at my surgery and will have to speak to the lead doctor, because their protocol is 6 loading doses and then once every month. I hope he agrees to letting me have injections monthly.

Also, after having been diagnosed 18 months ago, she has referred me to the fibromyalgia clinic. I didn't even know there was one!

Anyway, just thought I'd tell you my news

9 Replies

Hi PaulaW61. It's so good to hear of somebody doing well with their doctor and finally getting appropriate treatment.

Funny Isn't it, that doctors cannot follow their own professional judgement (when they discover it) but are apparently constrained by all manner of 'top-dogs'. Let's just hope that this 'top-dog' allows the the underdog to carry on doing the right thing (or should I say, the thing that is right for you).

Very well done for persevering - and a referral to the fibromyalgia clinic too - wow - what a good day it's been 😀.

Hope all continues well and good luck with the referral.

Take care X


fingers crossed - my young gp got into real trouble with the senior after giving me a desperately needed b12 - I had to make a special appointment with the senior to plead the young ones case - she had responded to my pain and responded. isn't that what doctors are supposed to do????


Good that things are moving along well for you. Just wanted to mention about the Fibro which can also be linked to low thyroid. You may well have been tested and told all is normal. Sadly they often only test the TSH which is only part of the story. In my non medical opinion Fibro is often linked to LOW T3 - the active thyroid hormone - and which is rarely tested.

Low B12 and low thyroid often go together. I was diagnosed by a Consultant Rheumatologist in the UK with Fibro back in 2000. On retiring to Crete in 2004 I was diagnosed with Hashimotos in 2005. Once optimally treated the pains of Fibro ebbed away.

Sadly the same frustrations exist in both B12 and Thyroid diagnoses and treatments.

As well as the correct thyroid testing I would also consider testing for VitD. Also I have read we are all low in magnesium 😊 This could also help.

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Yes I get low Vit D and take good doses of it daily, I plan to speak to the Fibro specialist about the T3, which is why the doctor referred me. There are so many crossovers in this condition and its about time they stopped putting everything down to Fibro or ME, or depression, there is a biological reason for it


So are you on thyroid treatment ?


No I'm

Not. Been tested but not found anything wrong


You are entitled to have copies of all your blood test results. Sometimes they only test the TSH for the Thyroid and then declare all is normal - when it is in range. Where you are in the range is important. The TSH result is only part of the story and it is a Pituitary hormone and instructs the Thyroid to produce Thyroid hormones. So you also need those tests to really know what is going on - the FT4 test and the FT3. Also a good idea to request anti-bodies - Anti-TPO and Anti-Tg in case you have auto-immune Thyroiditis. Labs rarely do these tests if the TSH is in range. Also Hashimotos is the most common thyroid condition throughout the world.

Am afraid many GP's rarely seem to understand thyroid test results and many people remain undiagnosed and untreated. I have been on the Thyroid Forum here on HU for over 4 years and have learned a great deal. I have often read that when people eventually obtain their test results going back years - they find many surprises and test results that were not acted upon. Mostly people are told *normal * when they are clearly not.

If you have your Thyroid test results I am more than happy to help. I am not a Medic - I do have Hashimotos - Crohns and a B12 problem.


I tried to take this up with the doc I saw on Monday when I went to get the results of my faecal test, (I've been having problems with diarrea fir weeks now,) and he looked at my past results and said they won't rest because the previous are normal. He said they only test the T3 if your tests are abnormal. I looked at him for awhile and then he asked me if I was anxious. I said no, I'm not anxious I just want to get better

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Did you ask for copies of the test results that your GP has said are normal ? Perhaps they are in range - but that does not mean normal for everyone. Where you are in the range is SO important,

You are legally entitled to have copies of all your test results - so you can monitor your own progress and take responsibility for your own health.

As you know the T3 is the most active of the thyroid hormones and is needed in every one of the trillions and trillions of cells in the body. So when the FT3 is low things begin to go wrong. So for that reason it is the most important of all the thyroid tests. Have you had your Thyroid anti-bodies tested ??" Anti-TPO and Anti-Tg - see my post above :-)

The body is so complex and so many conditions are connected. It is my mission to eliminate underlying causes and without the correct testing that is not possible.

So where does that leave you now ? Hope you are feeling OK .....


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