At the beginning of November last year I wrote a post about the fact that Graves disease was back (although technically it never left but was under control) and I started medication. The ‘numbers’ were not that bad so I thought I would have it under control quite fast.
Unfortunatly – as these things go – it wasn’t under control. I started feeling worse, slept worse, started loosing some weight and had that stressfull feeling. I have no idea why the medication didn’t take, neither did the doctor.
As you can see in the top graph below at the end that the dot just above the horizontal ’25’ line was the moment I started medication. A few weeks later we did another check and the numbers were again higher – around 35 – but it could be still be a downward trend, we just couldn’t see it because we didn’t have enough measurements. But I started feeling worse and at the end of the graph you can see it got really bad (<50 when normal value is between 14-25). So at that moment the advice was to double the amount of medication.
Below is the graph of the TSH value which was so low the last few measurements that it doesn’t even show up in the graph.
Again this was another disappoinment stacked on top of the others.
Just before Christmas I was feeling some pain in my left foot, couldn’t stand on it in the beginning but after a while it went (almost) away so I thought nothing of it. However the next (Christmas) day it was back but way more intense. I again couldn’t stand on it but even in rest I had that shooting and throbbing pain. It was quite bad and had to take some Ibuprofen to relieve the pain.
In hindsight I had this almost exact issue the previous episode. That was during our vacation to France where it occured as well and I couldn’t walk for a few days. Don’t remember it being that bad. But even now, a week and a half after the height of the pain it still not completely away.
We read up on it and it indeed seems to be related to Graves diseasem here’s the paragraph from the link:
5. Foot pain and cramping
Muscle, joint and nerve pains are not usually stressed as primary symptoms of hypothyroidism, but after years of hearing from hypothyroid patients at Hypothyroid Mom, there is one thing that I am certain about. Full thyroid testing should be conducted on every single person that presents with chronic pain or fibromyalgia.
The number of people that write to Hypothyroid Mom about plantar fasciitis, the pain along the bottom of the foot especially the heel that shoots through them especially when they step out of bed in the morning, can’t be a mere coincidence. In the case of Hashimoto’s thyroiditis and Graves’ disease, the immune system can also attack the joints and muscles frequently in the feet and ankles. Like carpal tunnel syndrome, thyroid patients are also more vulnerable to develop tarsal tunnel syndrome. Add to this the increased risk of developing gout , burning feet from painful neuropathy , and plantar fasciitis , and the incidence of foot pain in thyroid disease becomes very clear.
So mystery solved. I first thought it was about stressing the feet to much with a workout but with the timing it’s just no coincidence. I think i took about 2 ibuprofen a day the first week and then 1 before bedtime, just to subdue the inflammation. Good thing it almost gone but running, burpees or jumping rope still have to wait a bit
So, now that i’m in my third episode of Graves disease it’s time to consider the facts and choices. Not just about my own body but also what it does to the family. I can try other things to see if I can live without medication but always with Damocles’ sword over our heads that I get another episode and stress my body and family. And stress the body it is really what it does, your heart is pounding 24/7, you loose weight, loose muscle, it really takes a toll on your body.
The other tactic is to reduce my medication to the minimum and take that the rest of my live. However, with Graves disease, the thyriod will die out sooner than with ‘normal’ people. So there comes a time when things will go the other way and there’s no guarantee that you’ll notice it in time.
The third tactic, and one that is coming closer, is taking the iodine-radiation therapy to destroy part of the thyriod. This basically means that you can decide when your thyriod will (partly) die out in stead of waiting for it. The main problem I have with this is that it does not solve the problem of why the auto-immune system does what it does. But it does solve the problem of not having to worry about another episode and that can put the family and my relation at ease as well. Which is worth something.
So for now I’ll let the medication do it’s job to get into more tranquil water. But I’m also reading up more on the therapy and talk to some people who’ve already done it. However, tt sort of feels like a failure of not being in control of your body. And one of my main concerns is that you’ll be dependent on medication. I hate being dependent on things I can’t control but I guess that’s part of life.
One thought on “My Battle With Graves Disease, Part 12: hard choices”