Just had a quick chat with Martyn Hooper - still none the wiser

[xeena]

Hi there - well i have spoken to Martyn Hooper - about ten minutes ago - conversation lasted five minutes - he said for me to get back to him if i cannot get the help i need - well i have been trying for years to get help but unfortunately i cannot - i saw the nurse yesterday and she is adamant that i do not need injections more often - so i have to wait until the middle of next month for another injection of B12 and then another month after that for the last one - i told her that i should be having them more often - she said i should not - so i said i would source the B12 and inject my self - once again i was told i cannot do that as people do not do it themselves - i know they do as i see it all the time on another forum and i know where i can get the needles and B12 ampules from - so i think i will have to try that one now - i feel like ending it all - why are the doctors and their staff so cruel - i do not like being ill and my family and friends are fed up with me being this way - i have no support from family and i have no friends - i sit in doors day after day and do not see or hear from anyone. Some life. I wish you all get well and god bless.

[floraldaisy]

Ignore the nurse. She is just showing her lack of knowledge and trying to assert her authority. Perhaps she is having a bad day!!

She has got to you for the time being because you like us all are unwell and ill health can make one feel vulnerable at times.

You are a free individual and can make your own choices and decisions in life.

If you wish to self inject then of course you can.This nurse cannot stop you.

[xeena in reply to floraldaisy]

I have replied to Gambit - it is very long - but it is to all of you lovely people - Thank you..

[clivealive Forum Support]

If Mr Hooper "invited" you to go back to him I would certainly do that.

Write down precisely what you want to say to him, what the nurse and doctor have said to you so that you can tell him calmly what your current situation is.

Also have to hand the surgery's telephone number, doctor's name etc and you never know.....

[xeena in reply to clivealive]

I have put a long reply on Gambit's thread - but it is to all of you - Thank you so much - god bless you.

[Sleepybunny]

"i saw the nurse yesterday and she is adamant that i do not need injections more often"

Perhaps writing a letter to GP with extracts from relevant B12 documents would help? Writing a letter is probably less confrontational than face to face conversation. I guess the nurse is acting on the frequency of injections suggested by GP.

b12deficiency.info/b12-writ...

It's possible that she and your GPs may not have read the BSH Cobalamin and Folate Guidelines. I gave my Gps a copy.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency" should be on page 3 of listed guidelines. the info on Uk b12 treatment is about a quarter through document.

Link to BNF (British national formulary) Info on b12 treatment

evidence.nhs.uk/formulary/b...

[wedgewood]

I think you have the right idea in doing self-injection.. I was forced to resort to that when I could only get one injection every 3 months . You CANNOT overdose , so no worries there . It's no big deal injecting I. M . into alternating thighs . It's totally painless I use a 1" 25 gauge needle to inject , and a 1 1/2 " 21 gauge to withdraw.p the B12 . But make sure you have extra folate or supplement with folic acid, as you need them to work together with B12. You can see videos on u tube of self injecting -very useful . Don't give up please . Do try SI - it changed my life for the better - it may well do the same for you . Best wishes.

.

[Gambit62 Administrator]

Did Martyn make any suggestions - eg write to your GP (as per Sleepybunny ) and the practice administrator - which is the usual starting point - and then go back to him if that doesn't work.

[xeena]

Hi there all you lovely people - and thank you for all your help and advice. Well i rang my surgery and asked to speak to one of the doctors - they said i could not as i did not have an appointment - so i told them if i did not hear back from a doctor that i would go to the surgery and i would just walk in to a doctors room and sit there until they got me sorted - the receptionist asked me to hang on and after five minutes she came back and told me that a doctor would ring me in the morning - well this morning at 11-45am the doctor rang me and asked what was my problem - i had not seen or spoken to this doctor before - so i explained just what the nurse had said to me about the B12 injections being a total of only three over three months - so he obviously was looking at my last blood test that the surgery had done and could not see why i needed the injections as my results seemed perfectly within their range - i then said that i had given the first doctor i saw last Tuesday a set of private tests that i had done in February 2017 - he had to find them - when he did he was amazed to say the least at the levels of my results and said i am to have injections every other day for three weeks and then loading doses every three months and he is also sourcing me a liquid Vitamin D as i have a thyroid nodule in my throat that makes swallowing tablets or capsules difficult. He asked how long i had been like this and i told him since i had my first lot of private tests with Genova in 2011 - he could not believe that it had been ignored for that long and is going to look at all of my private tests regarding my thyroid - as Genova tests say i am hypothyroid - but it has never been addressed - so hopefully i might get back to a normal life and my family might start to love me again. I am pleased that i am now going to be looked after now - but i am also unhappy because my little great grandson of two years old is going into Great Ormond Street Hospital on Monday morning for his fourteenth operation to bring his stomach up into his chest so that it can be attached to an esophagus that they are going to make for him which will enable him to be able to eat and drink instead of being tube fed through his stomach and his stoma in his neck can then be sewn up as he will be able to cough up anything not nice in the normal way. Sorry this is so long - but i am truly grateful for all the help and advice from everyone - please say a little prayer for my grandson Roman that he will come through this operation - Thank you all so so much - God bless you all - keep well.

[clivealive Forum Support in reply to xeena]

I am so very pleased xeena that you are at last going to get the treatment you need and I hope your little grandson comes through the operation O.K.

Take care now.

[Singoutloud in reply to xeena]

I'm glad you've finally found a doctor that's going to help you and you can find yourself on the road to recovery very soon. Take a look at thyroid UK forum here on health unlocked as well, there are a lot of very knowledgeable and helpful people over there too.

Good luck for your grandsons op on his oesophagus. My son had a short gap TOF repair at 2days old and is now a strapping 13 year old. ☺️

[xeena in reply to Singoutloud]

Thank you for your reply and good wishes for my little Roman. They have now decided that due to all the operations and scarring that he has already they are going to bring his stomach up into his chest as the gap is to long between what little there is of his eosophagus and it will sit next to his heart - so i am praying that it will all be okay for my little man cub. His operation will be at ten o'clock on Monday morning and it will be a long one - my grandaughter is going to stay at the hospital with him and i will be looking after her seven year old son Ashton - he is getting really upset now - but i will keep him occupied. I am so glad that your son came safely through his operation and it is very reassuring to know that he is a teenager and that he is doing well. God bless you and your family - keep well.

[taka Administrator in reply to xeena]

I'm glad you are finally being listened to and treated! I hope your grandson's op goes well.

Take care.

[floraldaisy]

Xeena

I will be praying that all goes well for Roman. GOS is a wonderful hospital.

May I ask you what tests were done by Genova. Please do not worry about replying if you are busy etc. God bless xx

[xeena in reply to floraldaisy]

Hi there floraldaisy - thankyou for the good wishes for Roman - but now we do not know if it is going ahead yet as they cannot guarantee a bed for him in the intensive care unit and they say he must be in the ITU for the first six weeks and he will be in hospital for at least six months - then they say that with bringing his stomach up into his chest could crush his heart - so at the moment everything is up in the air and my grandaughter is terrified as i am too that his chances appear to be slimmer than we first thought. My Genova tests were for Hypothyroid as i was told that i was suffering with it - so i had tests done - in 2011 and 2012 - TSH 3.90 they said this was high FT4 11.1 they said this was low FT4:FT3 Ratio 2.2 they said was low - as at 25/10/2011 - next test - total daily cortisol - 20.2 they say low - DHEA levels - 2(am) 0.05 - 3(pm) - 0.06 they say low - Daily Cortisol Ratio 0.27 - they say low and that my one adrenal gland is suggested as suboptimal functioning.

I have only one kidney lost the other one (doctors neglect) so only one adrenal gland - this test was done 15/4/2012 - next test - Serum - TSH 3.45 they say high - FT4 10.8 they say low - Ft4:FT3 Ratio 1.9 they say low - suspect possible low grade/sub clinical hypothyroid - date of test 14/9/2012 - this test for candida antibodies 1gA 24.4 they say high - test date 10/9/2012 - - i have not had any more done by Genova as of yet. I hope this makes sense - my doctors would not even look at them - said i should not have private testing done - have a lovely day - god bless you.

[Sleepybunny]

"and said i am to have injections every other day for three weeks and then loading doses every three months"

Glad to hear you are going to get more intensive treatment.

If you have neuro symptoms (eg tingling, pins and needles, numbness, balance problems, tinnitus) maintenance injections in UK should be every 2 months not every 3 months. See next link for details of this.

evidence.nhs.uk/formulary/b...

B12 deficiency symptoms lists (including neuro symptoms)

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

[LtAngua52]

Hi Xeena,

I'm so glad you are getting help now. Thank god for your new doctor, stick with him! By the way, the guidelines from the BSH say that if you have neurological symptoms then you should get your injections every 8 weeks. I do, although it's still not enough and I self-inject in between. I also resort to the lozenges too every now and then.

I spoke to Martyn Hooper myself, twice, a couple of years ago. He told me to get back to him if I didn't get the help I needed then. But the second time I called, he was just so dismissive and just wanted to get off the 'phone as I was explaining what my GP had said. He just did not want to know, wasn't really listening and then very unconvincingly said he had to go and do something. Not a specific thing, just something. So disinterested. Totally useless! He did suggest I buy his book though, kerching!!!! I think that unless you can give him money, invite him to meet senior government executives, attend conferences and Royal garden parties, then you are screwed. Before any of you start shouting at me for saying this about him, just remember that I am explaining my own experience of him. My post will probably be deleted!

Good luck to you, I'm sure you will feel better very soon now that you are going to get the correct treatment. My best wishes are with your grandson and family too. I hope he too is on the mend.

Take care.