Seeking Martyn Hoopers Help please.

[xeena]

Hi, i have been referred by other members on the site to ask for your guidance as to what to do next - i was diagnosed with pernicious anemia in June 2015 and was given one injection after having been told that i needed to have them every other day for about three months and then loading doses - well i still have the ampules of Cobalin-H - as i was never given any more injections as the nurses did not come to my house as i was told they would to do the injections - the nurses said i was never in when they called (a total lie) even my neighbours said they never saw any come to my house - also my sister was staying with me at the time because my brother was in hospital dying (he had Parkinsons) and also my very best friend died a week before my brother - so i would not have been feeling like going any where. I have had recent tests by Medicheck which are - CRP - 6.2 mg/L 0.00 - 5.00 *** Gamma GT 43 IU/L 6.00 - 42 *** Ferritin 196.4 ug/L 13.00 - 150

Cholesterol 6.32 nmol/L 0.00 - 499 *** LDL Cholesterol 3.87 nmol/L 00 - 3.00 *** Vitamin B12 126 pmol/L 140 -724.00 *** Folate (Serum) 3.36 ug/L 3.89 - 26.80 *** Vitamin D 10.52 nmol/L 50.00 - 200.00 - these tests were done on the 7/2/2017. Please can you give me advice on what to say to my doctor - as i have shown them my latest private test and i have been told that i will get three injections - one every month for three months - i have had the first one last tuesday - so two more to go - one in March and one in April. I have only one kidney (due to doctors neglect the left one was removed) - i had my gall bladder removed - COPD - Asthma - Osteoarthritis - Fybromyalgia - Chronic Fatigue - Hiatus Hernia - GERD - IBS - Diverticulitis - very cold all the time - especially me feet and legs - numb hands - pins and needles - cramp - lost my hair - restless legs - thyroid nodule - cannot stand bright lights - eyes water all the time and get blurry - terrible night sweats - lost weight - painful bloated stomach - chronic pain in all my joints and cannot sleep at night as my mouth is so dry that i am drinking nearly all night - so consequently i am going to the loo all night please help me to help myself as the doctors are ignoring me. I have been having private tests since 2011 - with Genova Diagnostics - Blue Horizon - and last one was Medichecks - i also have print outs from the surgeries and they all say there is something wrong. Sorry this is so long - but i felt the need to be specific - thank you for any help or advice you can give.

[taka Administrator]

Hi xeena

I'm sorry you are having so much trouble getting proper treatment for your pernicious anaemia.

You need to join the Pernicious Anaemia Society itself (if you are not already a member) and contact them directly about getting the type of support from him / them that you are seeking. Their contact details are here: pernicious-anaemia-society.... Telephone is a good method.

If you are not a member the details of joining are here: pernicious-anaemia-society....

This PAS forum on health unlocked is to help us support each other and share knowledge about PA /B12 deficiency but is separate from the society itself. As far as I know Martyn Hooper does not post on here so will not see your post asking for his help.

I second some of the responses to your previous post. It sounds like you are being horribly under-treated for PA and are not receiving treatment as per the BSH guidelines and barely any treatment at all! I would write a letter to your GP (either by yourself or after talking to the PAS) enclosing a copy of these guidelines and and request treatment (as also laid out in the BNF on his or her desk) accordingly. You also need treatment for your low Folate and Vit D.

This is a copy of the guidelines also mentioned in your last post: pernicious-anaemia-society....

Link to the British national formulary (the doctors prescribing bible - a copy of which should be on your GP's desk!): evidence.nhs.uk/formulary/b...

Good luck.

[xeena in reply to taka]

Hi Taka - thankyou for letting me know about Martyn Hooper and also for giving me the links to the other sites. I will give them a try - i am losing faith in everything now - it just seems to go on and on and i never seem to get anywhere with my PA or my Thyroid problems - your help has been greatly appreciated. God bless - keep well.

[taka Administrator in reply to xeena]

No problem

Please do phone them as they can give you the direct help and support you may need to get your treatment sorted out. They have certainly helped other members to get their doctors to give them their required B12 injections in the past:

martynhooper.com/2016/09/23...

Good luck and let us know how you get on. Take care xx

[Sleepybunny]

Are you in UK?

link about writing to GP about b12 deficiency

b12deficiency.info/b12-writ...

If in USA, this website might be useful.

b12awareness.org/

List of PAS (Pernicious Anaemia Society) support groups, most in UK but two in USA.

pernicious-anaemia-society....

[xeena]

Hi there Sleepybunny - thank you for your comments - yes i live in the UK - born and bred - so not enough sunlight for these ailments. Thank you for the links - i will have a look at them all and try to put a letter together for my doctor - hopefully it will do some good. Your input is greatly appreciated and i wish you well - god bless you.