You may have noticed that the Daily Doses of WTF blog was amalgamated into this one… I just thought it was more economical and it has roughly the same amount of readers anyway… so… yeah.
With all the hoopla that has been going on, I haven’t been able to write or update much about the health/diagnosis/treatment situation.
I’ve been on thyroid meds for a while, and they are working a little. I think that it’s going to be a bit of a journey of finding an optimal dose, and I am going to try my luck at getting a script for natural thyroid… which apparently for subclinical Hashimoto’s, anecdotally, seems to work better.
I have noticed some pretty bad depression sneaking in, lately, too… but SSRI’s have never been very effective. The only thing that has ever touched the depression was the Duromine and Dexamphetamine. Again, there seems to be some evidence that a Dexamphetamine/Fluoxetine combo is a more effective treatment for thyroid patients. That’s going to be a really hard sell, what with Dex being a controlled substance… but after things stabilise I think that may be the next thing to address. Apparently some Doctors prescribe Zyban off-label with similar effects… but it lowers the seizure threshold… and given my propensity for seizures, I don’t know if they’ll be willing to take that risk.
But all in all, I think we are on the right track with the thyroid treatment. It’s just a matter of getting the right combo of treatment, isolating a proper cause (ie the rate that antibodies are affecting things, if there is a hyper/hypo cycle, if there is also adrenal fatigue, basically just watching, tweaking, waiting… which drives me crazy).
I still need to see a decent Endo who can help me with the finer details.
The biggest change, though, has come from my decision to try a gluten free diet. Between Hashimoto’s and Coeliac, all of my symptoms are pretty well explained. It also came as a bit of a surprise to learn just how many members of my family have a similar auto-immune combo happening. So, it almost seems obvious now that I think about it.
My Doctor advised me to try the thyroid meds first, before trying a gluten free diet. It is also harder to get a diagnosis of coeliac if you go on a gluten free diet, because everything starts to heal (and you need to consume gluten for 6 weeks prior to testing). But 2 weeks after starting the thyroid meds, I started to become more aware of the quite severe gastrointestinal issues and honestly? I just got sick to death of being sick.
So last week, I started a gluten free diet. My improvement was noticeable. Not remarkable, but very much in line with what other coeliacs I know have experienced – an initial relief around 36 hours, and then a gradual feeling of wellbeing when the diet kicks in. I keep making some mistakes, like assuming that there is no gluten in chicken stock ( the risotto was still yum…haha), and I am eating more carbs than I ordinarily would (just because I am learning and rice crackers are a safe option), but I think I am on the right track.
Which leads me to the question: is it worth pursuing the diagnosis of Coeliac Disease?
There are a couple of reasons why I wonder this, but the main one is that all I ever wanted to do was feel better and have an answer for it. I am some way towards having an answer, and for that I am happy. Our whole family is going gluten free, we plan to make it a non-issue (given the genetic component of Coeliac, the kids will probably benefit), and, you know…
To be able to get the diagnosis, I have now basically committed myself to 6 weeks of eating gluten again (with all the gut pain and stuff that goes with it), plus a general anaesthetic, a biopsy, test results and all that crap… and the lottery of possibly not getting a Doctor that is half decent… and that whole mousewheel turning thing.
The fact of the matter is, I am PETRIFIED of any more medical procedures. I have been way too sick way too many times – been poked, prodded, stripped naked, lungs collapsed, complication after complication including sepsis and coma… and you know, I just don’t want any more if I can avoid it.
Should I just be happy that I am on the right track, or should I pursue the formal diagnosis? I know in Canada that they give some concessions & tax benefits for gluten free products… is it like that here? I finally feel like there might be an answer, after over 23 years of not knowing how I would feel every single day… and I just want to move on.
Do you have any advice? Should I go through all the testing? What would you do?