I have tried to type out this entry a few times now. When you have quite a few things to say, the words just swirl around in your head and it's difficult to then wrangle those words into a blog entry! I have decided to separate them into sections to make it easier (it was only slightly easier, but I got there!) I'm going to talk about the results of the treatment I had, the fatigue situation, and my medication situation.
Treatment results:
The radioiodine treatment I had back in October did not work. I was a little bit disappointed till it was properly explained to me. You see, it didn't work because the cells in my neck are so faint that they just didn't pick up the radioiodine. Simple as that. Now they just want to observe the cells and see what they do, before they take any further action. The cells will either go away or get bigger, and if they'll only do more treatment if the cells get bigger. To be honest, I'd rather they did that instead of just going full steam with the next course of action. Especially since they said they would possibly have to do radiotherapy if the radioiodine didn't work, and that has a lot of long-term side effects!
Fatigue:
It's hard to properly express just how tired I get. Before the last appointment I had, all I could say was,"Well, I get very tired..." Which is a bit vague and doesn't help a doctor to help me. So I wrote down exactly how I was feeling and vented it to the consultant at my last appointment. I would have done this sooner, but in October I got bowled over by the news that I would need more treatment!
I'd actually called the specialist nurse a week or so before I saw the consultant, and mentioned the fatigue situation to her. She did seem to think it was unusual considering the amount of thyroxine I'm on, and the fact the levels of the thyroid hormone are quite high. I was quite relieved to hear her say that, because up till then I'd been thinking that the fatigue thing was perfectly normal.
Fast forward to the appointment itself, where I vented about just how tired I can get, and how frustrating it can be. One of the actions they took was to increase my thyroxine dosage (which I'll elaborate on later). They also suggested I go back to taking it in the morning and waiting half an hour. For some reason, since going back to this, I have actually found it better! The funny thing is, when I went from taking it in the morning to taking it at night, I kept thinking to myself,"What was I thinking taking it in the morning? It's much better to take it at night!" However, now that I've gone back to taking it the morning, I keep wondering what I was thinking taking it at night!
After my appointment, the specialist nurse took me to a small Macmillan centre in the hospital, where there all these different information booklets available. I found one on fatigue which had some really good advice in! I think it will be a case of messing with the medication dosage, really. It has been a real test of my patience, that's for sure!
Medication:
They increased the thyroxine dosage from 150 micrograms every day, to alternating each day between 150 micrograms and 175 micrograms. So, this morning I took 175 micrograms, and tomorrow I will take 150 micrograms. I had to do alternating doses when I first came out of hospital, so that bit hasn't been too hard to get to grips with. I bought a cheap diary to help me keep track. The tricky part is that thyroxine comes in packs of 100 micrograms, 50 micrograms, and 25 micrograms. So on the days I have to take the 175 microgram dose, I have to take one thyroxine from each pack. I've had to write it down in great detail in my diary, just so my morning brain doesn't mess it up!
The dosage was actually increased till last week, and when I received the letter I decided I'd better go see a GP and let them know, so that my prescriptions could be changed (I needed some more alfacalcidol too. Kill two birds with one stone and all that) The great thing about that was that this particular doctor added up how much I would need for a two months supply, and while doing that noticed I was only receiving a one-month supply of alfacalcidol, which didn't make any sense considering I was receiving a two-months supply of all my other medications! So nice to see a doctor who just gets stuff done!
Also, though does it not seem to be a common side effect, my immune system has definitely taken a hit. To help myself with this, everyday I try to take a multivitamin, an effervescent vitamin C (which is a bit like drinking Fanta every morning) and an evening primrose oil capsule. I don't always remember to, but I think that if I forget it's not as big of a deal as if I'd forgotten to take my prescribed medication.
That's pretty much it. As much as I wish this was over, I understand why my consultant is doing what she is doing, and I feel like I'm being listened to, for once.
