Graves' Disease - You're Doing It Wrong!
I am a crap Graves' patient. Last week I ended up in A&E with atrial fibrillation. It started out of the blue on Monday morning. Prior to the AF, I felt absolutely fine. I spent the night in the Acute Medical Ward and they would have kept me for days if I would have allowed it.
Saw an endocrinologist on Friday who tells me I "need to get better at recognizing my hyper symptoms".
Problem is, aside from BP & rapid pulse, I don't have any that I can find. I have read several other Graves'/hyper members talk about how they were in denial that something was wrong with them, despite masses of symptoms and it motivated me to look very carefully at myself and how I am feeling to see if maybe I am dismissing something that is Grave's symptomology.
I can't find anything.
A lot of this is complicated by other medical problems. I have multiple arthridies, chronic pain and complex regional pain syndrome, so I am sort of used to feeling crap. I hate it when the doctors ask that same old question - "How are you feeling today, on a scale of 1-10, 1 being no pain at all and 10 being the worst pain you have ever had?"
I always tell them the same thing - "I can't really answer that, because I don't have a 1 any more and I haven't have a 1 for a very long time, so the question is irrelevant."
You can imagine how well that goes down with them.
I don't wish to sound complaining about having so few symptoms, but I guess I am complaining because I have no way of knowing when my thyroid might freak out again and shoot up to Free T4 of 52 and AF for me.
Looking at the symptoms of Graves' listed on the Mayo Clinic website:
- Anxiety - no more than usual. I am a solitary person with multiple health problems, so I do have some anxieties like "What if I die and no one notices and the cats eat my corpse?" But I don't think these anxieties are irrational or have increased in any way.
- Irritability - again, no more than usual. My Mom always said that I "don't suffer fools gladly" and that's is and always has been true. I have had so many job performance reviews where I was criticized for being brusque...
- Difficulty sleeping - not any more! I have been insomniac most of my life -can't get to sleep and can't stay asleep. The past few months I have been sleeping for England - 10 hours a night or more. This after years of 6-7 hours max.
Fatigue - Yep, this is a box I can tick. But again, so more so than usual. I have always put being tired down to chronic pain and I genuinely don't feel any tireder than I ever have.
- A rapid or irregular heartbeat - Yep, another box I can tick, but this seems to be pretty well controlled by bisolprolo (beta blocker) and enalapril (ACE inhibitor)
- A fine tremor of your hands or fingers - I can't see this, but the first endo I saw said she could, the second one said he couldn't.
- An increase in perspiration or warm, moist skin - I don't really feel any sweatier than usual. I had an early menopause at 47 and it seems like it reset my thermostat because I have been over-heated and a bit of a sweaty Betty ever since.
- Sensitivity to heat - As above - I have been over-heated for 7 years and this does not seem to be getting worse.
- Weight loss, despite normal eating habits - I WISH! I am gaining weight. (seriously, the only attractive side effect of this bloody disease and I don't get it)
- Enlargement of your thyroid gland (goiter)- another box I can tick
- Change in menstrual cycles - N/A (they are all over, thanks!)
- Erectile dysfunction or reduced libido - Can't say yes to either of these
- Frequent bowel movements or diarrhea- Nope, I have been constipated for months despite good diet, plenty of water and lactulose.
- Bulging eyes (Graves' ophthalmopathy) - no, thank goodness
- Thick, red skin usually on the shins or tops of the feet (Graves' dermopathy) - another No, thank goodness.
So this leaves me with fatigue, rapid heart beat and enlarged thyroid gland as my expressed symptoms of Graves'. Not a lot to monitor.
One thing I have noticed in the last couple of months is a really strong SUGAR craving. All my life I have been the savoury type - offer me a choice of crisps or chocolate and it would be crisps every time. But lately, I am craving sweets. I suspect this is behind the weight gain; I just need to stop indulging my cravings and buying sugary foods.
I was talking with a friend yesterday and telling her that I felt as good as I ever do before I had the attack of AF and she suggested that maybe felling good was something I should look out for, What a sunny idea - when I am feeling well, it means I am hyper.
Anyway, this is just a ramble for me to think about how I am going to "get better at recognizing my hyper symptoms". I am sure this is as boring as shit to most people.