Back in March, I took a trip down to Breakspear Medical to see my Lyme doctor. The reason was to speak with him about a change of plan (since I was having a difficult time with antibiotics) and to do some further testing that he felt would be beneficial.
The appointment went well and it was decided that I would go back on to a herbal protocol to treat my Lyme disease (which I have been on ever since). My doctor also suggested—among a few other tests—that I should have my thyroid tested.
I’ve had many thyroid tests over the years
I am no stranger to thyroid tests (I actually convinced myself that I had Hashimoto’s many years ago because of my symptoms). However, my blood work has always come back within normal range. I, therefore, initially decided against having another thyroid test done.
At the time my thoughts went along the lines of, “why would I want to waste my money on a test that has always consistently come back within normal range?” I decided to prioritise other things.
So, I parked the idea of thyroid testing in March. It was something my mind kept coming back to over the next few weeks though.
I kept reading about the connection between Lyme disease, fibromyalgia and thyroid disorders. Then I discovered a website called Medichecks that offered very reasonably priced thyroid tests. I figured it was worth testing again to completely rule out thyroid disorders. At the very least it would put my mind at rest.
Deciding to retest my thyroid with Medichecks
My thyroid stimulating hormone (TSH) was within the normal range but my FT3 and FT4 (two thyroid hormones) were low. I was also positive for thyroglobulin antibodies.
On the advice of the doctor’s notes that came with my test, I went to see my GP. Unfortunately, this is where I came up against a brick wall.
My GP suggested that, based on my results, I would be unlikely to be offered treatment. This was because my TSH was normal and my thyroid peroxidase antibodies were normal. These are the two that count when it comes to getting treatment on the NHS.
Despite this, my GP referred me to an endocrinologist based on my symptoms. Unfortunately, the recommendation came back that I did not need to be seen as I did not require treatment.
My symptoms & seeking a second opinion
Personally, I felt my symptoms strongly suggested that my thyroid could use a little helping hand and support. I was feeling so very fatigued and the nature of my fatigue had changed. I was so sleepy it was ridiculous. All I wanted to do was sleep and this wasn’t normal for me.
Plus, my mood was all over the place, I was experiencing anxiety, my skin was dry, I had long been cold intolerant and my hands and feet were always freezing. Not to mention I, of course, had muscle aches and a foggy brain.
I decided to get a second opinion and I sent the results of my thyroid test to my doctor at Breakspear. He commented that he felt I had an underactive thyroid and he would be happy to refer me to a private endocrinologist (your NHS GP should also be able to refer you).
I chatted to my family about this and we decided it was worth pursuing. I wanted a second opinion. If I didn’t need treatment, that was fine. But, I wanted to be sure of this.
Seeing a private endocrinologist
I did some research and chose to see an endocrinologist who specialised in thyroid disorders at my nearest Spire hospital. If you are looking for a recommendation for an endocrinologist, I would recommend look at the Health Unlocked Thyroid UK Forums.
I had my appointment in July and, in the end, I am glad that I pursued this. The endocrinologist that I saw was absolutely lovely and it was the most straightforward medical appointment I have ever had. Plus, she knew about— and was sympathetic towards—my Lyme disease diagnosis, which immediately put me at ease.
She explained the reason why the NHS wouldn’t offer treatment and we discussed a plan of action. I had my blood retaken to make sure the results weren’t a one off. And, though things looked a little better than last time, we decided that it would be worth trying a small dose of thyroxine to see if it helps me.
I feel it’s important to say that I never stopped taking my herbs before this second blood test (I stopped them a few days before the first one). For some reason, it just never occurred to me that I might have my blood retested.
I, therefore, don’t know if things had naturally improved or if my herbs were making the situation that bit better. The test was also later in the day and I don’t know if that has any influence.
The decision to try thyroid medication
Either way, it doesn’t really matter. The decision was made that I would try taking a small dose of levothyroxine. My endocrinologist suggested that I see my GP to see if he would be happy to prescribe this. Unfortunately, I couldn’t get an appointment for a month. Thankfully, my doctor at Breakspear was happy to write a prescription for me.
The first couple of weeks on levothyroxine
I wanted to get started straight away as I was fed up of wanting to fall asleep all the time! The first two weeks on thyroxine were rough. I have no idea if it was my body adjusting to the meds if I was experiencing a Lyme flare of if I had picked up some sort of virus. My fatigue was awful, my pain was increased and I felt very flu-like.
Thankfully, this subsided and I started to feel better by the third week of taking levothyroxine, which brings us right up-to-date. I am seeing some glimmers of improvement. My mood has been better, I feel less anxious and my sleep has improved. Plus, I am no longer wanting to fall asleep all the time, which I am very grateful for!
These are very small changes and it’s hard to say if the thyroxine is definitely playing a role in these improvements. I am hopeful that it is though.
I saw my GP today and he is thankfully supporting me and has prescribed the levothyroxine for me going forward. I didn’t actually tell him I was already taking it as I was just about to and he started talking about the NHS vs private healthcare (and not in the most positive way). And it made me feel awkward about telling him that I got a private prescription.
My expectations and hopes going forward
It’s early days and I’m not expecting any miracles from taking levothyroxine. But, I do hope that giving my thyroid a helping hand will help to support my body’s healing.
At the very least, if I’m addressing suboptimal thyroid function, it’s one less thing draining my body’s limited resource of energy! I’ll keep you posted with how I get on over the coming weeks.
If you have any thoughts, helpful advice or want to share your own experiences I’d love to hear from you in the comments below.
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