Mixed Messages

I’ve recently discovered the Hashimoto’s and Hypothyroidism Reddits. It’s like a giant community of people who understand what you’re going through (I also have several other opinions that I won’t go into). What I have found even more interesting is all the different information people are receiving from their doctors and endocrinologists.

One thing that I’ve seen a lot of is doctors not prescribing medication because TSH levels are within a ‘normal’ range, even when there are symptoms present. Obviously, this is a very discouraging situation. If I feel like crap, I want my doctor to fix it. I always like to ask if these people have been tested for Hashimoto’s, if they have, I suggest they get a second opinion. If your body is destroying your thyroid… you probably need medication. Then I think back to my initial endocrinologist appointment, if I hadn’t been diagnosed with Hashimoto’s, I would not have been put on any medication. Luckily, I had no symptoms, but if I did, this would have been very frustrating. Looking back, I don’t know what the outcome would have been if I did have symptoms, maybe my endocrinologist would have put me on medication either way.

The next thing I’ve seen is diets to help manage hypothyroidism/ Hashimoto’s. We already know that my endocrinologist suggested that I go gluten free (you can read all about there here), but I’ve seen other suggestions like the Mediterranean diet, paleo diet and avoiding cruciferous vegetables. One person even told me that her doctor specifically said that there are no evidence based studies to support a gluten free diet. Interesting. Especially since so many people with Hashimoto’s/ hypothyroidism are on the gluten free train.

Something else I’ve noticed is the variance between doctors’ opinions. For example, one person was told she had a low free T3 at 2.7, while my doctor told me mine was a little high for her liking at 2.9. I understand that all people are different and everyone will have a different optimal level, but how can 2.7 be low but 2.9 be high? That just makes no sense to me. Granted, an opinion is just that, even if a doctor is giving it to you. Do we just take what we’re told with a grain of salt? Or do we determine whether to put our trust in these professional opinions?

The main problem with Hashimoto’s is that no one knows what actually causes it. All we have to go on are hormone levels that can fluctuate and ‘normal’ ranges that vary from source to source. On top of that, all doctors seem to have differing ideas on what can actually help. It all just adds to the confusion.

You have an incurable disease and no way of knowing if what you’re doing is actually helping until you get your lab work done again. Great.

In my case, I like my endocrinologist a lot. I think she is actually trying to help me, I’ve never felt like she was brushing me off or trying to rush me out of the room. So, I’ve decided to take her advice and see how it plays out.

But I know that is not the case for a lot of people. For many, doctors may disregard symptoms based on lab results or they may attribute symptoms to other potential conditions. In these cases, it is so important for you to advocate for yourself and keep track of your symptoms, lab results and the like. It is a lot to keep track of, so I’ve created a handy health tracker to help you keep all your information organized!

My biggest suggestion to anyone with hypothyroidism/ Hashimoto’s is to track your condition, no one knows what your feeling, you are the only one who can communicate that information. By keeping track of symptoms, lab results, medications, etc… you will be able to more effectively convey it to your doctor or medical provider.

Eventually you will find a heath care provider you like and trust, whether it is an endocrinologist, your regular physician, a functional medicine doctor or anything in between.

Do you have hypothyroidism or Hashimoto’s? What have you heard from your healthcare providers?

2 thoughts on “Mixed Messages

  1. I have Hashimoto’s (high antibody counts, goiter, symptoms like fatigue, cold intolerance, etc.). I finally had a doctor take my symptoms seriously, was diagnosed a couple years ago by getting a full thyroid panel and a confirmatory thyroid ultrasound. After over 8 years of feeling not-quite-right and complaints to doctors at every annual physical about my unrelenting exhaustion, it was a huge relief to find out that I wasn’t actually a crazy hypochondriac.

    My case is like many others, because my thyroid hormones (TSH, T4, T3) all have maintained in the “normal” ranges, so I am not being given treatment as of right now. Though, as you pointed out… normal is different depending on your lab/clinic/country/etc. It’s frustrating, but I genuinely feel like a hypothyroid diagnosis is just a waiting game for me. At least knowing why I feel so icky give me some perspective, and knowing that I can watch for worsening symptoms is a small bit of reprieve in this disease.

    My doctor’s only advice for right now? Lose weight.
    Sometimes I want to scream, “TRUST ME; I AM TRYING!”

    Like

    1. Thanks for sharing, Emily! It can a difficult process, but I’m glad you found a doctor who listened to you and was able to give you some peace of mind. The weight loss advise is the most frustrating considering weight gain is a symptom! You would think they would recognize it at some point.

      Like

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