Yesterday I had a telephone call from a lady who was very distraught.
“I spoke with you in September” she reminded me. “I live in Kent and they stopped my injections in September because my B12 levels were over 2,000 and they told me that I was in danger of collapsing. I have been having injections of B12 for fifteen years and I’ve never felt really well, but now I”m having all kinds of problems walking, and I’ve even started to wee myself”.
Her name is, well it’s not important, we’ll call her Zara. Zara is 45 and was diagnosed fifteen years ago after two years of futile visits to her doctor.
“I used to work” she said, “but I had to give up, and now my husband has to push me in a wheelchair if I have to walk more than ten strides”. I asked her to remind me what I had advised in September.
“You told me to see another doctor”, I asked if she had, “Oh yes, and they were going to start the injections again. I went and seen a temporary doctor and he said that I would need them for life and that they would start the injections again immediately”. So what went wrong I asked; “the Senior Partner overruled him. When I went to the nurse for the injection the nurse telephoned the senior partner who said I was not to have the injections until my blood level went below the threshold which is 190. So they checked my blood and it was still over 500 and last month they checked it again and it was 230 so I have to wait another two months to get my blood checked again.
I think I must have sighed.
“But I’m getting worse. And I’m scared that the level will be above 190 when I have it checked in June. And then what can I do?”
Then she added a sinister phrase, one that I have come to dread,
“Every day I’m getting one step nearer to ending it all” she said.
All volunteers at the PA Society are briefed, during their induction, on what to do if a member telephones and is contemplating suicide. Some of the volunteers have completed the Active Suicide Intervention Strategy Training. Those who have not completed the training are simply told that if they are confronted with a potential suicide they advise the caller to talk to someone, anyone but preferably their GP or The Samaritans. I told Zara to speak to someone or call the Samaritans.
“I’m telling you” she said before asking “what can I do? If I take supplements then the B12 will remain high and I won’t ever get another injection”, it was a quandary that other patients face.
“I will telephone your doctor” I said
“No – telephone the Senior Partner, it’s she that is causing all of this” she told me between sobs.
And so I did – but the Senior Partner is not in the surgery until Tuesday morning. In the meantime Zara continues to suffer needlessly. I don’t know what the Senior Partner will say or do. And I certainly won’t be trying to ‘educate’ her. I will simply tell her that we are seriously concerned for our member’s welfare and will be contacting the Primary Care Trust if the matter isn’t resolved.
I’ll update this on Tuesday or Wednesday
UPDATE
Despite me leaving three messages the senior partner has not called me and so I will now write to the Medical Director of the NHS Trust to make him or her aware of what has happened. I had to do this once before when Bethan had her injections stopped and was detained under Section 3 of the Mental Health Act. I will let you know what happens.
Tell Zara to buy hydroxycobalamin from Goldpharma and learn to self inject. She can’t go on like that.
I’m speechless. How on earth can a senior partner when faced with someone clearly becoming more and disabled as a result of PS not make the right decision. I am starting to think we do need to become more like the US and sue these docs for negligence but in meantime those that can self inject do it
Hi
Two years ago I was diagnosed with PA after ten years of ‘pulling teeth’ The medical profession finally recognised that I wasn’t a hypercondriac-female. My health with and quality of life was weakening to the point that after fighting for years to find out what was wrong- I was almost happy to be told there was something. My b12 count was very low so I was urgently administered a course of injections over a series of three weeks. I lasted a week before I had an anaphylaxis-attack. Rushed to hospital. Injections were put on hold. Though ‘food’ was blamed. I was determined to prove that that was certainly not the case. Those terrible injections were problematic to the sensitivities of my overactive internal system. Responding negatively to virtually anything at that time. After discussion and of course the NHS waiting…five months later I had a day of allergy screening tests specific to the ingredients of the drug. Within hours I was proved right.
After that the consultants at both hospitals fell silent. I was so frustrated! Consultants not speaking to one another about their patients. I was angry. No one able/willing to advise me with what to do when the levels plummet. I had an appointment with a dietician. Lovely person, though she couldn’t help. Everything she advised I’d been doing or avoiding over the years due to allergy sensitivities.
Last May I was at breaking point. My spirit was low. My energy was gone. I was exhausted. No longer able to swim, ride a bike, horse, row. Even driving the car was exhausting. My mind and body ached. Could barely string a sentence together. Not good when your profession is teaching. I was 37 last year though to be honest I felt like 87! Everything ached and hurt. I truly felt like giving up. I’d never felt that way before. No one wanted to help. I didn’t know how to help myself; I’d tried everything from alternative medicine. Reducing food groups.
Auyvedic medicine saved my life. I was told to cut out all gluten products. Including gluten free-as they do contain small amounts (Legally allowed to not advertise that fact-utterly appalling). Remove rice from my diet. Learn to rest more; to allow the body and mind to heal.
What a difference. Within three weeks the headaches and pains in my back, legs, shoulders, glutes were easing off. Now a year on; I’m still recovering but I feel amazing. I have energy. I can think clearly for the first time in years; not stumbling over words or sentences as I did. I don’t bruise like I used to. Bang into everything. No more IBS!!!! …other symptoms soon disappeared.
I love life again and myself. I’m not consistently pale anymore. I lost the three stone that wouldn’t shift even when I was uber fit.
Basically in layman’s terms gluten was stopping my body from absorbing the nutrients from food and drink. This was effecting my entire system!
According to western medicine I was not gluten intolerant or had celiac disease, or had a thyroid problem as all tests came back-within normal range. However when I investigated this. The discrepancy between countries of the boundaries for such issues is vast. My practitioner know instantly that I had a thyroid problem from my description of personality-at that time and then looking at my swollen neck and thickness of skin.
Now I live without any trances of gluten. I’ve learnt the full extent of the horror that goes into food preparation. How many products contain gluten from lemonade, mayo, oils, ice cream-it’s frightening.
I get asked all the time; ‘It must be difficult’ To be honest it’s easy. Living before was tremendously hard!
You have to be prepared. Research. Home cook as much as you can. Make things from scratch. Contact restaurants in advance before booking. Ask them to cook with olive oil.
If you’re suffering please give up all gluten and sugar for at least four weeks; see if you notice anything. Just don’t give up!
Kerry