Tearing my hair out, aka No idea which treatment to try
Today I wrote this email to some of my friends and family because I feel confused, overwhelmed, and stuck. As I was near the end, it occurred to me that you might have some useful advice. So for anyone out there who has had to deal with difficult treatment decisions and/or has thyroid problems, please offer your advice. Please write a comment, sent a tweet, or shoot off an email. I would love any and all advice that you want to give!
This is the exact email I wrote. The only change I made is my name at the bottom. Please tell me what you think. What would your next step be if you were in my position?
If you’re getting this email, it’s because I think you’re smart and I value your opinion. You might not have an opinion to this, and that’s ok. There’s definitely no one right answer.
Basically, I’m stuck with the health stuff. I definitely need to try something new, and I can’t decide how to proceed. Every time I make up my mind, I change it. If you feel like reading this, set aside a few minutes. I’ll lay it all out. If not, that’s fine. I definitely won’t hold it against you!
For the last three months I’ve been on a gluten-free diet. This has definitely helped. It has definitely not helped enough. My guess is that being gluten-free is part of the solution. I need to figure out the rest now.
I am making the assumption that I need to treat my thyroid. This could be wrong, but out of everything, this is the part I’m most confident about and I feel good about proceeding this way. Also, I don’t have any other ideas. But no, really, this does make sense. Hypothyroid and raised thyroid antibodies (which are related but not the same, and I have both) can cause fatigue (hello!). There is a link between these and PCOS, IBS, acid reflux (which I may or may not have), and joint pain. Then I’ve been reading about other random symptoms that I can relate to but that I’m not focusing on. A good example is a “normal” body temp below 98 degrees. I have this, and I never thought much of it, other than adjusting my math when calculating a “fever.” Maybe it’s related to the hypothyroid or maybe not, but I’m not going to worry about it. However, there’s a good chance there’s a link with the fatigue and GI problems, and a smaller chance with the joint pain. By the way, hypothyroid means my thyroid is underactive. Really, you don’t need to know anything about it for this.
For 8 years I have been on the most common drug to treat hypothyroid. At first it seemed to work in terms of my energy level and blood tests. Now my blood tests still look good, but I have been finding more and more people talking about having normal blood tests while still have hypothyroid symptoms. There is no treatment for the raised thyroid antibodies other than surgically removing the thyroid and I am definitely not considering that.
Options for treating hypothyroid and raised thyroid antibodies:
— Try another drug of the type I’m on. This treats the T4 hormone. There are other drugs and maybe one of those will work. This is the approach that almost every doctor will suggest.
— Try a drug to treat the T3 hormone. There aren’t as many doctors who will do this, but they can be found. I found one in Newton.
— Try a combination of T3 treatment with supplements or dietary changes.
— Try supplements and dietary changes – no drugs.
— Try dietary changes alone.
The easiest answer is to try the drugs, but the more I read, the less likely it seems that these will work. Trying the drugs would give me a faster answer than diet, but I could be dealing with nasty side effects. I think it makes sense to try dietary changes. That’s why I did the gluten-free diet: I read a lot about gluten triggering thyroid antibodies. Celiac is when gluten triggers intestinal antibodies, so this makes sense. The fact that the diet has helped a little makes me think that I’m on the right track. And the idea of not having daily nausea…. what a dream! So even if the dietary changes don’t fix everything, they should at least fix the GI problems and that would make this all worthwhile.
Ok, so that’s why I want to pursue the “unconventional” approach of changing my diet to fix my thyroid instead of taking more pills. And because it’s unconventional, I can’t simply ask my PCP, etc. for advice.
If you think this isn’t the right approach please speak up, but give me a reason why you think it’s wrong.
So assuming that I should make dietary changes, the problem is that I haven’t found any agreement on how to go forward. Some people say to take all of the trigger foods out of your diet, then reintroduce them one at a time to see what happens. Others say to eat normally but remove one trigger food at a time to see what happens (this seems like a terrible idea – if more than one food is a problem, you wouldn’t figure it out this way.) The lists of trigger foods vary. They all include gluten and dairy. Most include soy. Some include eggs. Some include certain fruits. Some include certain vegetables. Some include corn and corn gluten. Some include all grains. Some include alcohol or caffeine or carbonated drinks. There’s no one diet to try. Clearly I can’t remove all of the trigger foods from all of the diets all at once – there’d be almost nothing left to eat!
There’s also something called leaky gut. I think that a lot of these diets are aiming to repair leaky gut even when they don’t say it, but it’s hard to tell. Leaky gut is starting to become more mainstream in western medicine, so I could potentially find a doctor who would help me with it, but there’s no test and no treatment other than diet. The idea is that a food allergy/sensitivity causes permeability in the gut lining, and this causes certain things from the gut to link into the blood stream where they trigger an antibody response. Removing the trigger foods will allow the gut to safely heal. But then once you have this, it’s very possible to develop new food allergies, so it’s possible that today I need to remove gluten and soy, and in a few years I’d also need to remove dairy, and some time down the road I’d also have to remove watermelon. But the idea is the same – find the trigger foods.
In theory I can try all of the diets one at a time, but in reality that is really hard and I honestly can’t imagine spending years trying to find the right diet, all the time knowing that the answer may not be diet-related after all.
And having said all of that, hopefully now you see why I feel stuck. And if you don’t, then please explain the solution to me! I think I should try a diet, but I don’t know how to determine which one. I’m reading books, blogs, and web sites. I am getting advice from commenters on my blog and from twitter friends. Everyone says something different. What criteria would you use to make a decision?
Thanks for any clarity you can provide!! Any insight at all would be extremely helpful! I’m definitely at the point where I need to try something new, and I could start it tomorrow, if only I knew what it was.
I am not a doctor or any other sort of medical professional. I am writing my own thoughts, feelings and opinions here. Please consult your own medical professional for advice on your own particular situation. You are responsible for your own choices.
OK, my two cents here…avoid all soy. Yes, soy. Soy for some reason interferes with the thyroid and particularly with the meds that we take for thryoid issues. And also, if you take any thyroid meds do not do the generic ones. All my endo specialists (I take thyroid meds as I had my thyroid removed) said to pay the extra money for a brand thyroid med as the generics have been found to differ to greatly from one pill to another. But with the diet…get soy out of your diet and it should help your thyroid some. It won’t be easy as soy is in everything. My daughter does glueten free, soy free and dairy free.
Thanks for the advice. Luckily I already avoid all obvious soy because of it’s affect on estrogen levels, but you’re right, it’s hidden in everything, so I’ll have to figure that out. I hope everything is working out for you now! It’s great you figured out the med issue. I need to work on that, and I’m just starting to hear about generics vs. brand name, so I’ll have to look into that too. Thanks!
Hi, I don’t feel I have much advice to offer you other than I know the diet part is very important.
I eat a fairly basic diet with little processed food and no dairy and eggs. It helps me with the leaky gut because I know there are no hidden ingredients. So if I have an upset it is not too hard to work out the culpriIt. However it is not an exciting diet but I use fresh herbs to liven things up. Also I have no caffiene ( it makes me anxious).
The criteria I would use to think things through:
New drugs – is there anybody medical who you trust their opinion to talk to about them.
Diet – If gluten free helps, try to cut out the soy as suggested. Eat fairly simply for a month if possible. Then see how you feel.
It might help to sort a few little things into place,
Sorry just wanted you to know that I was listening.
Thanks for your support Lorna! And don’t discount your advice; it’s different for everyone and that’s why I’m compiling all of the anecdotal treatments I’m now learning about. And actually, your advice is very similar to what I got from my nutritionist today. I’m glad you have something that works for you! And thanks again for the support 🙂