An Excursion To Lokrum
As I’d missed all of the full day trips, I took the boat to Lokrum and had a walk round for three hours or so.
Before I was diagnosed as a coeliac and went gluten-free, I couldn’t have done a walk like this.
It was almost, as if my blood couldn’t move the heat away fast enough from my skin and it all overheated. But once, gluten-free and with blood full of B12, the heat transfer was better.
I used to burn badly some years ago, but I don’t now. After Lokrum my face was just a healthy colour.
Intriguingly, my father, who was probably an undiagnosed coeliac, rarely went in the sun and was very much a man for wasting time in his garage or shed.
My son who died, appeared to me to be the most likely to be coeliac and he was always hidden away working on his music.
Dementia Has Stabilised
According to this report on the BBC web site, research from the University of Cambridge has shown that dementia levels are stabilising.
A few years ago, Oxford University proved a link between having low B12 levels at 50 and dementia, if you had dementia in your family.
Could it be, that GPs, who now check out bloods regularly are having an effect?
When first tested at 50, my B12 levels were non-existent. Now at 68, they’re spot on!
And what is one way to help your B12 levels? – Go gluten free!
As other studies at other world-class universities, like Nottingham, have shown that a gluten-free lifestyle lowers your changes of getting cancer, I think that going gluten-free because of my coeliac disease, wasn’t one of the worst lifestyle decisions I made.
INR Results Of A Coeliac Using Warfarin And Taking Terbinafine
This graph shows my INR a period between the 20th of May and the 25th of June.
I should say that I have a degree in Control Engineering from Liverpool University.
My aim here is to keep my INR between two and three, with a target value of 2.5.
Since starting to self test, I normally take around 4 mg. a day of Warfarin, but I have found that five is a better dose for when I’m taking Terbinafine, which has been prescribed by my GP for a fungal infection. The drug is well-known to affect the action of the Warfarin.
So now I take 5 mg. unless the INR is 2.8 or more. In which case I reduce the dose from five to four. On the other hand, if the level is 2.2 or below, I increase it to six.
The average INR value for the period shown was 2.6 with a standard variation of 0.2.
The peak at the beginning of June may have been caused by a B12 injection or hot weather. Both of which seem to raise my INR.
You will notice that the INR went up around the beginning of June. I can’t be sure, as I don’t have the dates, but this may have been caused by having a B12 injection.
Not Getting Pregnant
It is reported today, that the Government is changing the IVF rules. But they should also change a few other things, based on my experience.
I have recently traced my family tree back to the 1820s. What is rare, is that in my father’s line, few of the women have given birth. My sister didn’t for a start.
Ten years ago, I was diagnosed as a coeliac, which showed itself in a severe lack of B12. I now moderate a list on the Internet for coeliacs and have come across several examples of female coeliacs, who have been unable to conceive, because of this lack of B12. A few were diagnosed early enough and after going on a gluten-free diet, they conceived and gave birth successfully.
Remember that coeliacs make up one in a hundred of the population. The incidence is higher in the Irish, Askenazi Jews, Italians and some from West Africa. Some have said that coeliac disease is linked genetically to sickle cell anaemia.
Hay Fever and B12
I’m not sure if there’s a link, but last night I had some superb liver at Carluccio’s and my hay fever seems a lot better today, despite the high pollen levels. Searching for “hay fever B12” does bring some results.
Exquisite Liver
I was in Carluccio’s in Upper Street yesterday and had the most exquisite liver with onion jam and polenta. It is a special this week and I’ll be going back to get another dose of B12.
Nicole Kidman and Infertility
On my travels yesterday, I caught a headline on somebody else’s Metro, detailing Nicole Kidman’s struggle with infertility. The full story is here.
I hope she’s had her B12 levels checked. I’ve met several female coeliacs, who had all sorts of problems with carrying a baby. You just need the B12 to create a hPregnancyealthy foetus. There’s a lot of stuff on the Internet and this post is quite detailed.
If I look at my family and particularly the male line, which probably carries my coeliac genes, instances of any women giving birth are rare.
Ice Cold in Cornwall
I went to Cornwall for the weekend with friends.
Cold wasn’t the word for the weather.
Icicles at Boscastle
This was the walk by the river in Boscastle. In the end we retreated to the Wellington Hotel for some delicious hot chocolate. We also had an early dinner there before returning to London. The menu was very coeliac and vegetarian friendly.
I had some delicious liver and bacon. All that B12 seems to have freshened up my skin quite a bit.
How Am I Doing?
I’m going to see my Doctor at Addenbrooke’s tomorrow, so I thought I’d write down a few notes.
If I start with my body and move downwards from the top of my head, I can summarise it as follows.
I was suffering a sort of itch and a sensitive scalp, but that seems to have reduced and almost stopped since, I’ve started taking the Amitriptyline. I’m only on one 10 mg. tablet a day and I take that just before bed, so that it helps me sleep reasonably well.
My brain seems to think clearly and I’ve started programming again. I do think though, that some of my memory functions aren’t too good, in that I make a mental note to do something and then forget it a few minutes later. But the long-term memory is intact and I can remember funny tales from years back with ease.
My eyes now seem to be working better, in that I have no trouble seeing anything as I walk around. Although, obviously, I’m not driving or even cycling. I also find that I can’t see the ball when I try to play table tennis. But I can use binoculars to look at things like the moons of Jupiter, which is something I couldn’t do when I left the hospital.
I do seem to have gone a bit deaf, but then I was always going that way.
I still have pain in the left side of my face and it gets worse as the afternoon progresses towards evening. I suspect this is because the Amitriptyline I took the night before is wearing off. I find too, that typing on the computer gets more difficult from about three and my eyes are tired.
My mouth is a bit sore, as my teeth tend to catch the inside of my left cheek. It could be that I’m cutting a Wisdom tooth, but my dentist is a long way away in Felixstowe. In addition, my teeth never seem clean. I wish there was a walk-in dental hygienist!
My right arm is a hundred percent, but my left hand is still a little wayward and there is pain the wrist. I can though now wear my heavy Rolex again, which C left for me as her last Christmas present. It has the inscription “J Xmas 2007 and Forever C” and I feel undressed without it.
I do find trouble reading newspapers, as I find it difficult to separate the pages. I had thought this was due to the stroke, but my friend, John, at the football has the same problem and he’s a fit farmer, who’s about my age. He reckons it’s the papers and the ink they use! So perhaps it’s just old age again!
There is also pain in my left humerus in the old injury, where the bully broke my arm at school. Again it gets worse as the day progresses.
I have been working on my core strength and don’t seem to suffer any pain or reactions in my trunk at all.
I do however have a bit of a problem with a mixture of constipation and diarrhoea. That’s probably the best way to describe it, as sometimes I find going a strain and at other times it’s loose like it was for most of my life before I was diagnosed as a coeliac.
Incidentally, when I typed that last paragraph, I just typed diarrhoea right for the first time in my life!
My legs are fine, although I do suffer the odd cramp at night in my left shin and my varicose veins are getting worse. But compared to my parents’ ones, they are minor.
I’m eating well and I’m now just about the same weight as I was this time last year of about 58.5 kilos stripped.
One slight problem is that I always seem to feel a bit cold during the day. But as I said, I’m sleeping well and am very warm in bed.
As to getting around, I have no problems, that others don’t have like late or missing trains and taxis that take forever to come. But how many who are recovering from strokes, have travelling as far as Inverness, Edinburgh, Middlesbrough, Sheffield and Crewe without any special assistance? I can’t wait to get to my new house in London, from where I can really explore the country.
I’m also managing well with the Warfarin. But it’s a system that is so antiquated and ill-thought out, that something should be done to create a proper National Anticoagulation Service, possibly based on pharmacies and the Internet. But I’ve not missed a correct dose and save for the odd small nose bleeds, I’ve not had any trouble.
I also think I felt a bit better after last Wednesday when I had my three-monthly B12 injection.
So let’s face it!
I could be much worse.
I sleep well, get tired, cook everything I need, travel where I want, but just feel trapped living in the country with a bit of nagging pain.
I’m moving so the first problem will go and I hope that the pain will fade away with time.
One In and One Out!
I had a bone density scan some weeks ago and as I’ve not heard anything, I asked the nurse to see if there was anything on their computer, when she did my Warfarin blood test and gave me a shot of B12 today.
There wasn’t any news and judging by how I feel, my bones may not be tip-top, but they certainly aren’t in falling apart mode, as I would have hoped that I would have been called in for the bad news.
It strikes me that there could be a big increase in efficiency here, with possible cost savings!
If you have a test that can be quantified accurately and you are well on the right side of the problem level, surely, you can be told the results either by a more or less standard e-mail and/or letter.
With my bone scan, it might say that I’m reasonably fine, but I should come back for another scan in say six months. A copy could also go to my GP, so she would know as well. I have a feeling, that a lot of communications from hospitals to GPs are actually letters not e-mails and are scanned in the surgery. If I’m wrong, which I hope I am, about these letters please correct me!
There must be hundreds of instances in the NHS, where a sensible bit of automation could save money and redeploy staff to more important duties, than writing lots of similar letters.
We are seeing instances of automation, like appointments systems that text you reminders, but we need to see more. I personally would like to see a better system for anti-coagulant testing.
The Anonymous Widower 