Update: I thought I’d update as I have... - Pernicious Anaemi...

Pernicious Anaemia Society
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Update

Retrofunk
Retrofunk

I thought I’d update as I have had such good advice here on the forum and learned a lot!

I had previously been stopped treatment by my new GP after moving house when my B12 levels were measured and found to be above the range, although I was very symptomatic and had been supplementing sublingually, as I was overdue my regular 3 monthly injection. He also referred me to the Consultant Haematologist whose medical secretary I was 20 years ago.

On the advice of you lovely people I got some B12 and started to SI, and symptoms are slowly improving.

Today I had my appointment and the Consultant was on holiday so I saw one of his junior doctors who agreed with me, agreed to write to my GP and explain the guidelines (including that I should be on 2 monthly injections) and explain that a high B12 is to be expected and further testing is not required. He has also referred me to an endocrinologist for my gastric and hypothyroid symptoms as my TSH is a little high and I need to be on a higher dose.

I am so relieved I cannot tell you, I went in there expecting a fight with my copy of BCSH and HEY guidelines and didn’t need them at all!

Thank you all, now fingers crossed he actually writes what he said he will and my GP takes notice!!

6 Replies
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clivealive
clivealiveForum Support

Hi Retrofunk that's brilliant and encouraging. Thank you for sharing.

Gambit62
Gambit62Administrator

so glad things are looking up and there is someone out there who actually knows his stuff.

Thank you for the update. So pleased that you found someone who listened.

"agreed to write to my GP and explain the guidelines (including that I should be on 2 monthly injections) "

If GP is still not helpful....

1) May be worth giving them a copy of PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society.... See Page 1 of articles/leaflets.

2) If you are a PAS member, may be worth seeing if PAS can intervene.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

3) I gave my GPs a copy of the book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper .

4) Refer GP to section for Health Professionals on PAS website.

pernicious-anaemia-society....

5) Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

6) CAB NHS Complaints

citizensadvice.org.uk/healt...

7)HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

"I saw one of his junior doctors who agreed with me, agreed to write to my GP and explain the guidelines (including that I should be on 2 monthly injections) and explain that a high B12 is to be expected and further testing is not required."

I didn't know they existed. - (Not quite fair of me.)

That's very good news. Perhaps he will educate your GP's too.

Thanks all. I have learned so much since joining this site and wanted to share a more positive experience 😊 I appreciate your support!

Cherylclaire
CherylclaireForum Support

Happy day today, have just read a positive account from GGourmet , and now this.... such a relief not having a battle on your hands, or an education session to deal with, particularly if you are feeling somewhat less than perky. I know it's not over until sorted out, but great headway made there, Retrofunk !

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