like so many other people I have been banging my head up against a brick wall and having to battle to get b12 injections, having to explain to numerous GPS and nurses that I don’t need a B12 test, and maybe they should not only consider the B12 symptoms, also the hypothyroidism and the iron deficiency as all part of the same issue rather than look at the results in isolation.
After reading something on here I contacted an iron clinic in Cambridge, and spoke to Dr K, not sure if I can use names etc in here.
What followed was a few emails and a consultation a couple of days ago. No arguments, a complete understanding of how I felt, a fantastic plan going forward over the upcoming weeks, months and years.
I cannot over estimate the relief felt by myself and my partner knowing that our battles with the system appear to be over.
I would implore anybody that has the means to do so to get in touch with them , I didn’t feel the consultation was overly expensive and the feeling of well being was immense, finally somebody that understands what we are all going through.
I don’t think you can put a price on the relief that something like this gives so sell your husband / wife. / children / kidneys and take the plunge. My only regret is that I didn’t do it 5 years ago !!!
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Jason_h123
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That's good news Jason_h123 - are you permitted to share the name of the clinic here? I'm not sure of the protocol. Does Trumpington figure in the address? I've googled and one came up - but unsure if it is the right one! Perhaps you can point me in the right direction? Hope I've not overstepped any protocol here fellow PA-ers.
Well I think that as I have no vested interest and it should help people here I’ll do it anyway 😀 Cambridge Iron Clinic and Dr K.
Although they do lots around iron he is probably the most PA aware clinician in the country as well as belonging to many European B12 discussion groups and has written many papers, I’m very cynical generally but I was very impressed.
Many thanks Jason_h123, that's great. Always useful to have information on external health sources that someone can genuinely recommend. Makes you feel safe if you decide to approach them. 😀
As well as being in touch with B12/PA experts and researchers worldwide, he may have been to the international B12 conference in Rotterdam this year. I had a consultation with him too and had an iron infusion nearer my home in early August.
Sorry, I did read this post but didn’t connect you with it, hope you feel better soon. I’m 6 days post infusion and have noticed itchy legs etc are getting better as well.
Glad to hear you're seeing improvements after a short period and hope that continues. Time will only tell in my case. What were your ferritin and transferrin saturation % levels? And did you have Monofer?
Dr K's consultation letter might have that info as dosage (I think) depends on those levels. He included blood tests on mine. How on earth can GPs 'lose' blood test results! Talk about inept, negligent even. They should be uploaded to your online patient records.
Thanks so much for posting Jason! I literally said yesterday to my husband about going private but not having a clue where to go.This Dr sounds perfect, I will be looking him up. 🙂
Dr K helped me when haematologist said all ok. It defo was not! I think I would be in a wheelchair now if not for Dr K.
Dr K helped when GPs said all ok with hubby and implied I was neurotic because I understood his bloods (unlike 3 GPs). Dr K tested bloods found hubby is significantly B12 deficient (identifying several symptoms including tremors), AI hypothyroidism and that he needs to see a cardiologist due to an above range MCV.
I am not an admin. I think technically it's not allowed, see point 3.6 healthunlocked.com/pasoc/po...... unfortunately. I doubt they will change it. Naming clinics should be fine. You can always give hints eg such-and-and type of specialist in xx city, PM for more info.
On the TUK forum they allow people to *ask* about specific practitioners but replies - positive or negative - should be sent through PMs/Chat.
Thank you yes I read that but I don’t understand why good practise and support has to be shared one to one.
I understand that naming and shaming should not be encouraged or supported in any way and I would never support that in any shape or form.
But when we are already outcast from the mainstream NHS, it seems harsh and increases the sense of isolation when we can’t talk openly about the medics who have brought positive experiences and improvements to our lives.
Wwwdot not allowing naming is as much about respecting privacy as it is about avoiding naming and sharing. It can also has the potential to become a hot potato as one persons saviour could actually be another persons villain - or become so.
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