I thought it was maybe time I posted about my recent illness. I start the post with a caveat – this is my experience and just because you have something that sounds like a symptom which I have/had doesn’t mean you have thyroid problems or indeed Graves Disease.
About 18 months ago I started to notice that things were getting on top of me a bit. Still new in post and being busy with two charges rather than one I put it down to the increased workload especially during the evenings. My sleep was erratic, I was constantly hot, I was irritable, I was showing signs which I put down to the start of the menopause, I had the shakes, my hair was falling out, my bones hurt, my muscles ached, I cried for absolutely no reason whatsoever, had enough water retention to solve a minor drought, and I was constantly hungry and I mean constantly, my nails were breaking and flaking and there were gastric issues but you don’t need to know about them. Now having just listed all those things you may be wondering why I didn’t do something at that point, well, not everything manifest at the same time these things came and went in varying degrees.
Gradually, however the symptoms became more frequent, more persistent and more annoying. I also started getting dizzy spells and blurred vision which would clear after a few seconds, what I can only best describe as feelings of morning sickness and I would suddenly be so hot that you would have thought I had taken a trip straight to the fires of hell. This last symptom set my mind on it all being down to the beginning of the menopause – after all I am approaching that age.
Christmas last year, kind of passed me by I felt as if I was watching someone else rather than living the days myself, over the following months things got worse and worse until I finally admitted to myself I just wasn’t coping but was at a loss as to how to rectify the situation. I didn’t want to have to go on HRT – I still was thinking menopause – but maybe I should see if there was an alternative, I never got around to doing that, life was busy.
Life was also however getting harder to cope with, eventually some nagging from mother Ruth and Hubby meant I went to the GP, not really knowing what I was going to say to him. I had phoned while the notion was still fresh in my mind and before I changed it, there is an appointment in 20 mins available if you can make it I was told, so off I set.
I sat in the waiting room thinking this is silly I am just wasting the GP’s time and should just pull myself together and get on with things. I even said as much to the GP when I got into the consulting room, apologising for taking up an appointment, then promptly bust into tears. He was great, told me I obviously wasn’t wasting his time and asked me to just tell me all about it; I suppose at this point he didn’t have a clue as to what it might all be about either. I answered his questions, he consulted his computer and commented that there wasn’t a lot on my notes. True last time I was at a GP was when I was pregnant. He took my pulse – 147, took my blood pressure which as always was fine, looked in my eyes (commenting that they were cream rather than white) and said ‘we need some blood’ but I think your thyroid is over active. I will refer you and we will see what your bloods say for now let’s get you on some beta blockers.
Over the coming weeks I spent a lot of time at the doctors having my blood checked, my pulse checked and generally being fretted over. The first lot of results confirmed my thyroid was overactive, and also raised concerns over my liver, but despite the beta blockers my pulse still raced and I didn’t feel any better. Two weeks later I was at the Western for what was to become the first in a series of regular visits to not only this but other hospitals in Glasgow. I was there for nearly three hours as I was passed from department to department and everyone took measurement, stuck needles in me to take stuff out and put stuff in, asked questions, took photographs and scans and passed me on to the next person, until I was back where I started. The endocrinologist gave me a couple of leaflets, a letter and prescription request for my GP and said that they would see me next week once all the results had been collated. I left the hospital with a mixture of relief and confusion. Relief that something was being done I felt in very good hands (and indeed that has continued to be the case) confused as they couldn’t actually tell me what they would do and how long it would all take to be back to normal.
On my return a week later I was told that I had Graves Disease (named after the person who identified it) an autoimmune condition which often presents itself with an overactive thyroid. My thyroid was indeed extremely overactive, in fact I was told they hadn’t had a case as bad as mine for over 10 years, I would have to see someone about my heart (pulse still well over 100 despite the beta blockers), my liver and of course my eyes.
Over the following weeks I soldiered on in frustration as things only got worse, my eyesight got gradually more and more blurry and double vision started, my ankles and knees disappeared as my legs turned into tree trunks complete with bark like skin which itched, boy how it itched. This lumpy, flaky, itchy skin then started to appear on my arms, my back and my face, while my eyes started to puff up and protrude – I didn’t need any joke glasses – I took to hiding behind sunglasses after a young girl commented on my funny face in a shop. Her mother was embarrassed, I laughed and said yes I do have to her, I think her mother was relieved but she just gave me an small smile and pulled the poor child away. The sun glasses were soon to become necessary anyway as my eyes had become light-sensitive and watered constantly, probably in an attempt to try to remove the pound of sand that seemed to have been shoved under my eyelids. Blood tests continued, they tinkered with my medication but still things continued on a downward path, I wasn’t sleeping well (later on my sleep pattern developed into 6 hours sleeping 42 hours awake and I mean wide awake), at times I couldn’t walk my legs just collapsed under me, and I decided that I shouldn’t be driving, but it was Holy Week so I am sorry to say I did.
Easter Sunday saw the last day of driving and also the first day of the worse of my illness. We went on holiday and I spent the first week in agony, having to be helped up from chairs, into the car and out of the bath. Poor Hubby must have thought we had been catapulted into some future time when we have to help each other with daily tasks in our dotage. The itching, for which I had been given steroid cream which proved totally useless, was now such as I would have happily torn off all my skin for the relief. At this point I would love to give a plug to Johnson’s Camomile Oil Gel which after trying just about everything in front of and behind the counter at Boots was the only thing that gave me any kind of relief – however it appears that they have stopped making it so the recommendation is somewhat useless. I think this was when both Hubby and I realised just how ill I was.
Returning from holiday to a hospital appointment it became obvious that I couldn’t continue to work. My medication was upped again passed what the leaflets, folded like origami in their boxes, said was the maximum (but I was told not to worry it wasn’t going to be long-term and might just stabilise things) and went to the GP to ask for a sick note for a couple of weeks. He gave me one for four weeks saying I could always go back to work before it ended if I felt better. I spent the first week in bed, if I wanted to leave it I literally had to crawl (thank heaven for en-suites), the second week was slightly better, I walked the couple of 100 yards to the shop for milk but it just about killed me. I was as weak as a kitten and had no energy at all, I ached, I itched, I coudn’t see, couldn’t sleep and felt as if I was constantly on the verge of being sick. I became someone who visited hospitals for the medical care rather than to visit others. I got to know how their systems worked and what a 10am appointment really meant – it doesn’t always mean 10am! I struggled to even ‘be’.
The GP gave me another sick line and then another, my frustration towards my illness grew. No they couldn’t do anything else until my thyroid was stable I wanted them to just take it out and be done with the whole nightmare. They tinkered some more with my medication considered changing it to something else which wasn’t usually used, but were concerned that it might have an adverse effect so decided against it. Meanwhile my liver got the all clear, as did my heart although my pulse still raced and palpitations had become part of daily life. I got to see a specialist in autoimmune diseases one of the most helpful half hours of my illness.
After several false starts, which caused a degree of annoyance to me and other doctors I finally got to see someone about my eyes, it was decided that to start with I would be put on a large dose of steroids. The following week as I travelled to the Western for yet another appointment at the endocrinology department I became aware that the journey wasn’t as tiring or required as much effort as before. Things had started to improve, symptoms disappeared or lessened – with hindsight I think it was more a case of the speed of slow improvement increasing and becoming more noticeable at that point rasther than a sudden improvement. A couple of days later I got a phone call to tell me that my bloods were good and my thyroid seemed to be calming down. Plus as a side effect of the steroids my skin started to improve, although if you were to look at my legs without knowing how bad they had been you would likely disagree. A corner had been turned, now if only the eyes could see singly and clearly.
Well the new prism glasses help with the double vision bit as I blogged about earlier in the week and we will see about the driving tomorrow. But even if I need to sort out how I get out and about a return to work is finally on the cards. I am not at the end yet, but at least the end is in sight and life is almost back to normal.
