Finally somebody that listens AND understands !!!

[Jason_h123]

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 !!!

[Nackapan]

Glad you've found a good private clinic.Alot seem to find this one good.

He specialises in iron deficiency as I understand it .

Listening is a skill alot lack unfortunately.

[JanCymru]

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.

[Jason_h123 in reply to JanCymru]

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.

[JanCymru in reply to Jason_h123]

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. 😀

[Mixteca in reply to Jason_h123]

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.

[Jason_h123 in reply to Mixteca]

How have you found things post infusion ? I had mine last week

[Mixteca in reply to Jason_h123]

Very difficult, I feel worse than I did before having it (been very ill for 4 months/. Please read my 2 recent posts about this:

healthunlocked.com/pasoc/po... (there's a link to 1st post in this one).

[Jason_h123 in reply to Mixteca]

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.

[Mixteca in reply to Jason_h123]

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?

[Jason_h123 in reply to Mixteca]

Ferritin was 35, not sure about the transferrin as GPS have lost my latest bloods !!!

And yes I had Monofer

[Mixteca in reply to Jason_h123]

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.

[Jillymo]

High five Jason_h123 at last you have a result. ✋

Here's to better health in the future. 🥂

Well done.

[Hidden]

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. 🙂

[Mixteca in reply to Hidden]

Go for it! I also recommend Dr Klein.

[Wheat]

Really pleased for you!

[Narwhal10]

Fab Jason_h123,

Thrilled for you.

👍🏻

[WIZARD6787]

Good on you! Thank you for sharing!

[Wwwdot]

Hi All

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 know who I trust.

🤗🤗🤗🤗🤗

[Wwwdot]

Dear Admin Special Peoples

Can you clarify please … are we allowed to give credit to practitioners who help us?

I fully get that we shouldn’t name and shame but so many suffer for the want of a professional listening ear and medical knowledge.

If the rules are such that we cannot name and praise, how do we get the rules changed?

Thank you Adminpeeps for doing a GREAT job.

🤗🤗🤗

[jade_s in reply to Wwwdot]

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.

[Wwwdot in reply to jade_s]

Hi Jade

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.

If we don’t ask for change, we won’t get it!

🤗🤗🤗

[jade_s in reply to Wwwdot]

Well said 😊

I suggest asking / tagging Gambit62 , the only admin currently active

[helvella in reply to jade_s]

If only one admin is active, it might make little difference! But you can contact ALL the moderation team in one go by going here:

healthunlocked.com/pasoc/about

Screenshot of PAS moderation team

[WIZARD6787 in reply to Wwwdot]

I totally agree with it. Would be better if information could be shared about which practitioners are helpful and which are not.

I also understand the administrators are volunteers and have to conform as necessary to whatever restrictions allow this forum to be what it is.

As a practical matter, if it conforms to the rules of the forum personal messages may be the best option to share.

Some practitioners may object to be overwhelmed by many people contacting to them and some patients may feel the need to protect their practitioner.

[Mixteca in reply to jade_s]

I think it's a healthunlocked protocol. So few iron clinics in the UK though that it'd be hard to miss any.

[Gambit62 Administrator]

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.

[Wwwdot]

Thank you Gambit

Yes I can see the logic of what you say. It’s hard though when there are so few practitioners who really understand B12 deficiency.

I have seen 4 “experts” so far - 3 insist on testing my B12 levels even though they know I self inject every day and only one says no point.

But I respect and value you as one of our admin team. So business as usual! Thank you again, your time as a volunteer is really appreciated.

🤗🤗🤗