This Story Will Make You Mad.
When you have chronic lyme disease, it can be very hard to know who or what to trust. This story is a perfect example.
When I was diagnosed with chronic lyme disease in 2013, I was also diagnosed with hypothyroidism, as I had low T3, which is a hormone produced by the thyroid gland. I had an unusual situation, as I had low T3, but normal TSH (Thyroid Stimulating Hormone). Normally, if you have low T3, you also have high TSH. But I didn’t.
Apparently, this was cause for concern, as one situation that produces low T3 and normal TSH is a brain tumor. So, my lyme doctor ordered an MRI of my brain. You can bet I was super relaxed about that. Thankfully, I did not have a brain tumor. Thus, my doctor said the lyme infection in my brain (it breaks through the blood brain barrier in the first 48 hours) was interrupting the communication between my hypothalamus and my pituitary gland. The two need to be on good speaking terms in order for the thyroid to function properly.
My lyme doctor recommended thyroid hormones. This turned into a major discussion, because a functional medicine doctor I was seeing at the time implored me not to take the thyroid hormone. He basically said it would goof everything up and that there were more natural ways of dealing with my thyroid issues.
At the time I was dealing with severe fatigue. As in, we were on a previously planned trip to Disney and I had to use a mobility scooter because there was no way I could have walked the park. That kind of fatigue. Can you imagine?
I didn’t know who to believe about the thyroid medication, but I knew something needed to change in the way I felt, so against my better judgement, I decided to take the thyroid hormone.
I have seen two different lyme doctors since the one who originally prescribed the thyroid hormone, and they both recommended I stay on it. Over the years, my T3 levels were closely monitored, with blood draws very six to eight weeks, followed by medication adjustments, if necessary.
Fast forward to fall of 2017. Suddenly, I’m having all sorts of issues with regulating my body temperature. I have a history of always being cold, but suddenly I was always hot. Like, really hot. I spent the harsh Minnesota winter in a sweat. Sometimes I’d walk around the house half naked. I’d be in a public space, and I’d note I was wearing a t-shirt while everybody else was bundled up in sweaters and jackets.
I know what you are thinking. Menopause. While I am of a certain age, I’m still menstruating, so that wasn’t the issue.
When you are being treated for chronic lyme disease, you tend to move away from traditional western medicine practitioners, because they look at you like you are crazy when you say you have lyme disease. It gets old.
But the body temperature thing was really bugging me, and I had a hunch it had something to do with my thyroid. So, I made an appointment with an endocrinologist.
After starting the meeting with the standard “I know you don’t recognize this, but I have chronic lyme disease” conversation, I told the doctor about my past thyroid issues, along with my current symptoms and medications.
He asked to see my blood work from before I started the thyroid hormones, which I had on hand. Sadly, I’m a pro at this, and anticipated his request. He then asked the million dollar question. He said “How much did you weigh when this blood work was done?” I told him I didn’t know for sure, as it was many years ago, but I guessed it was south of a hundred pounds.
To which he said “I don’t think you were hypothyroid. I think you were starving. When your weight gets too low, things don’t work right.”
When he said that, tears literally popped out of my eyes and rolled down my face. I didn’t even care. I was completely unselfconscious about it. Why was I crying? First, I never wanted to take those damn thyroid hormones in the first place, and it turned out I never needed to. So, that pissed me off. Second, it just reinforced how difficult it is to navigate the lyme jungle. I had not one, but three lyme doctors tell me I had lyme related hypothyroidism, and that it was critical for me to take the medication. In that moment, I was just so exhausted on navigating conflicting medical opinions.
The lyme doctors didn’t make any money off the medication, so I can only believe they had the best of intentions, but still. It’s just infuriating. There are many risks associated with taking thyroid hormones, and it turns out I unnecessarily exposed myself to those risks for four years. Not to mention, taking thyroid hormones is a huge pain in the butt. You have to take them first thing in the morning, one hour before any food, drink or other medication. Psychologically, it never made me feel good to roll out of bed and pop a pill first thing. It just sends the wrong message. I’m sick. I need medication to function. I hated starting my day that way, and I’m getting mad all over again as I write this.
But back to my appointment with the endocrinologist. Once he handed me a tissue and I stopped crying, he suggested I discontinue the thyroid hormones, and then come in for a blood draw in three weeks, once the medication fully cleared my system.
You can already see where this is going. My thyroid labs were completely normal. I was taking medication for no reason. In fairness, I have gained 26 pounds in the last two years, so that likely has something to do with my T3 levels coming back into the normal range.
Two things have happened since I discontinued the thyroid hormone:
- Over the course of a few months, my body temperature issues resolved, and I am no longer overheating.
- I started to gain weight at an increased clip.
When I noticed my increased weight gain seemed to coincide with discontinuing the hormone medication, I emailed the endocrinologist to ask if there was a correlation. He said there absolutely was. So, all these years, when I have been struggling to gain weight, the thyroid hormones were playing a role in holding me back. My GI system is still totally whacked, so I can’t put all the blame on the thyroid medication, but let’s just say it wasn’t helping anything.
I’m still pretty mad about all this. Yes, it’s true, I did have low T3 at one point. But I’ve learned it’s also true that not all thyroid deficiencies need to be treated, particularly if there is an extenuating circumstance, such as dramatic weight loss.
Here is the moral of the story. You know that expression “to a man with a hammer, everything looks like a nail.” I think that’s also true of many lyme doctors – everything looks like lyme to them. And that’s my advice today – if you have chronic lyme, or chronic anything, be on the lookout. It’s too easy for doctors to just blame everything on your chronic condition.
For whatever reason, I always had a nagging feeling my thyroid issue was not lyme related, but I never acted on my hunch because I had three people who had gone to medical school telling me I needed to be on medication, and I figured they were in a better position to know that than I was. Well, that turned out to be misplaced trust.
I am sad to say that after nearly five years navigating the mess of chronic lyme disease, I truly don’t know who to believe or who to trust. I think the fact of the matter is nobody has chronic lyme completely figured out. Not western medicine doctors, not functional medicine doctors, not lyme literate MDs. Nobody. Everybody has their own theories, and I believe they believe them. And I think most practitioners who treat lyme patients have nothing but good intentions. But I can’t help feeling like a human guinea pig.
We are still on the frontier of this epidemic, and until it gets more attention from the CDC and Western Medicine, there’s not going to be a standard treatment protocol, which means people are going to continue to struggle to get proper care, and will occasionally get sent down errant rat holes, as I did.
I realize this is more negative than I tend to be, but lyme disease is a bitch, and people who suffer from it have to work way too hard to get well, as they are simultaneously fighting the disease and the system.
I know things could be much worse, and I need to hang on to that perspective. I have learned so much from being sick, and I would never give those lessons back. But lyme disease has taken much from me, and I have sadness and anger about that. Buy I will never stop trying to regain what I’ve lost. Never. Ever.