I'm intending to keep this at a fairly 'high' level - you don't want to know all the details of creams, pills, treatments and appointments, I wouldn't remember to keep it all up to date, and if you are interested in that level of detail, we are probably in touch in some other way already...
I developed atopic eczema at an early age. The condition has varied greatly over the years: sometime, it has been hardly noticeable, and at other time it almost takes over my whole life.
One of the main planks of my skin care regime since 1979 has been regular use of the sauna. Many people with eczema tell me they could not cope with the hot environment of the sauna, but those who have used it all seem to have enjoyed it, whether or not they derive the same benefits as I do.
From 1999 to 2003, our early years in Bristol, my skin was about as good as it has ever been. In early 2004, it started to deteriorate, and in the Spring of 2005 I started going back to the Doctor. After various blood tests, I was referred to a dermatology nurse, who helped improve and stabilise the eczema, but it was still pretty bad and not improving any further.
I was then referred to the hospital for light treatment, which proved remarkably effective, as well as giving me what is probably the first healthy looking tan in my life. After the treatment ended, my legs deteriorated slowly, but they continued to show the benefit of the treatment for some 18 months.
However, the increased sweating due to the hormone imbalance irritates the skin, and by the Summer of 2007 my legs were in quite a bad state again. Also, for the first time in ages, so were my arms. Large areas of both seemed to be covered with scales - coin sized patches of dead skin, glued to the skin underneath. Combined with the sweating, it irritated like crazy, and the result is that I got very little sleep at night. And every morning, the bed was covered in flakes of dead skin.
On holiday in Lanzarote, the sweating did not change significantly, but the skin improved enormously. The factors, as far as I can tell, are: sunshine (much more, but not too much), lack of clothing (so the sweat can just evaporate, and the skin is not irritated by the damp clothing constantly rubbing), near daily swimming in sea water, and a bit more time than usual spent mosturising.
By the end of the holiday, the skin is as good as it has been since the light treatment ended. And, I should point out, the holiday was one week in the middle of two weeks off work. The improvement did not start until we were away, and it started to deteriorate as soon as we returned home. So the problem is not the stress of my job, as so many people keep suggesting.
In October 2007, we went abroad again, this time to El Portus in the South of Spain, on the Costa Calera. Not as much sunshine, but again the skin improved. And in November, I started a second course of light treatment, which finished in January. My skin improved, and so did the sweating, so by the end of January 2008, my skin was as good as it has been for a long time: a few patches of dryness, but nowhere red, sore or weeping. Fantastic.
Many eczema sufferers also suffer from asthma, and I am no exception. It is set off by dust and animal hair, a fact we did not appreciate when I was younger and a white cat owned us.
The asthma improved through my teens, and caused no problems from around 1975 to around 1985, when Sue asked my to vacuum under a rug we had at home. This triggered a serious attack, and we had to call the doctor out. He was furious that I didn't have a reliever.
Since then, I have been using a preventer each night, and a reliever when I need it - very rare these days.
Several people have asked why my skin got worse in the past few years. Is there more stress at work? No. However, at about the time it started to get worse, in the Spring of 2004, I started to experience regular hot flushes. Don't laugh. I would suddenly start sweating all over my body for no good reason. Inevitably, this started to irritate the skin.
The Doctor did various blood tests, and concluded that my testosterone level was abnormally low. I saw an endocrinologist in November 2005, she took some more blood, arranged for some more urnine collection, and I was scheduled to go back to discuss the results in February 2006. The skin and the sweating may just be a coincidence, but eczema is like that: we will probably never know.
February 2006: I have been back to Endocrinology. The tests are inconclusive, so they want to run some more. My LH was low in the first blood test (before I started taking Acetyl-L-Carnitine), but normal in the second (after I started taking it), so she wants me to stop taking it for a week and have another test.
If the results of this test are as expected, they will just treat me for low testosterone. If the LH is also low, then I might have a small and probably benign tumour on my Pituitary, and they will want to schedule an MRI scan to see if they can spot anything. Either way, she wants to see me again in four months.
On the plus side, it seems they have ruled out all the other possible causes, so there are lots of things they are confident I don't have.
Sue says I'm just jealous and don't want her to be the only person in the family to have a rare but benign brain tumour.
The return visit to endocrinology takes place on 20 June 2006: I don't need an operation, but I do need more tests and another appointment in two months. But one of the tests can't be done until November, so the appointment has to be postponed.
At the appointment on 18 September 2007 they recognised that the current treatment is not working, so they want to give me some different injections and see if they work. My symptoms seem to be getting gradually worse: I'm not having too many of the total dripping-off-my-body sweating bouts, but the less obvious slightly sweaty so all my clothing is damp state is happening far more often - most days, sometimes for most of the day. Next appointment: 25 March 2008.
Through October and November, the sweating continued to get worse, despite the new injections. I was having to get up every night - three, maybe four times a night, because the sweating would soak the bed if I remained in it, and then I would be unable to sleep when the sweating stopped. It generally took an hour or so between waking up when the sweating started, and recovering enough to go back to bed. So I wasn't getting much sleep, and the skin was constantly irritated.
Oddly, the sweating would often be on the right side of my body but not the left, or it would start on the right before spreading. And when I was cooling down after sweating at night, my right hand would be much colder than my left. I mentioned this to several medical people, and none of them could think of any medical reason for this. They sometimes suggested that it could not be happening.
And then, on 1 December 2007, the sweating suddenly improved, literally overnight, or at least, over that weekend. On the Friday, I had the worst ever bout of full-body sweating, lasting around five hours. On the Monday, my shirt stayed dry all day for the first time since I can't remember when. I was suddenly returned to maybe 90% or 95% of normality.
This does not make sense from a medical perspective, but it's what happened. A lot of people have been praying for me, and it seems their prayers have been answered. The doctor said at my next appointment: "I think we have to assume that the treatment is finally working," but I don't think he believed it any more than I did.
At the next appointment with the endocrinologist in March, he was happy for me but the blood test showed my testosterone was still too low, and thus I'm still at risk of serious harm from the osteoporosis: the reading is 8, when the lowest acceptable reading is 10. So the treatment needs to be increased again - the suggestion was that the injections be increased form every 6 weeks to every 4 weeks.
The bone density scan takes place on 30 November 2006, after some problems with the machinery. The doctors expected the scan to say that I'm at risk of developing osteoporosis, but in fact it shows I already have it. The advice from January 2007 went roughly as follows:
Yes, the osteoporosis is serious: I have significantly less bone density than normal, and 'normal' in this context includes 95% of men my age. This does not translate into a particularly high risk of fractures at present, but if the loss of bone continues even at the normal rate, then it will become very serious. So they need to act now.
For some reason, it is normally the pelvis that fractures; however, in my case, the loss of bone density in the pelvis is quite a bit less than the loss of bone density in the spine. It is not clear why this might be the case, or what difference it makes. But I'm quite keen to avoid my spine snapping.
The osteoporosis is a symptom of my low testosterone level, so the basic treatment for the next 18 months was to give me more. But, after regularly upping the dose, they discovered in 2008 that I was on twice the 'correct' amount according to BNF, so it got reduced again, and they then started to treat the bone density problem directly with Bonviva.
This is fairly nasty stuff: I have to take the pill on an empty stomach (at least six hours since the last food), take it with water, and then remain upright and eat nothing for another hour before I can have breakfast.
As well as the injections and Bonviva, the other stuff continues: sunshine and vitamin D for my skin, plenty of fruit and veg, lots of dairy produce for the calcium, and weight-bearing exercise. Sadly, swimming is fine as general exercise, but it doesn't provide the weight-bearing exercise I need: I must do more walking, running, and weight-training in the gym.
In September 2012 I was diagnosed as having a hiatus hernia.
For some years, I have been waking up at night feeling sick. I sit up, generally burp, and after a minute or two feel fine again.
Over the years, I have found that it is much worse if I eat late; so I have taken to eating at lunchtime, unless it can't be avoided, and only eating a piece or two of fruit in the evening. Also, sleeping on my back makes it much better: I often feel sick very soon after turning onto my side in bed.
Following an endoscopy, this has all been traced to the hiatus hernia, and I have some more pills to reduce the symptoms.
Early in 2005, I noticed that the little finger on my right hand was painful and swollen. Eventually I asked a Doctor about it, and was told it was arthritis: nothing to be done, just take painkillers if necessary.
After a few months, it was getting quite painful, and I couldn't touch type properly anymore. Then a friend suggested I try Flaxseed Oil for my skin, and I noticed after a few weeks that the finger was much less painful. Over the months, it has also become more mobile again. Astonishing.
To be clear - the Flaxseed Oil is a capsule: it is rich in Omega-3, whatever that is. I don't rub it into my skin.
They did an MRI scan of my brain, looking for a tumour on my Pituitary Gland. This would explain the hormone problems. They found a tumour on the Pituitary, but decided it could not explain the symptoms - so, just like Sue.
I had another MRI scan on Friday 6 June 2008. The technician showed me the Pituitary Gland, and said it was 'a beautiful shape'.
For some years, I have had tinnitus. (You say it: tin-it-ous' and not 'tin-i-tus'.) For me, it is a high pitched whine, like you could imagine electrical equipment creating, or maybe high-pressure air escaping from something. Other people can experience something very different. It seems to be fairly mild, and the doctors are not interested.
For years, I have noticed an occasional white discharge from my eyes, often following a sauna. When I was young, this was referred to as 'sleep' - which always seemed a bit odd.
At some point in 2008 I noticed that this was getting worse. I talked to the doctor late in the year, and eventually got an appointment at the Eye Hospital in the Summer of 2009. They diagnosed Blepharitis. Treatment failed to clear it up, but it is not as bad as it was.
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