A further rant

Experience should have taught me to delay Monday’s rant until I’d actually spoken to a doctor. I was bound to have more to rant about today.

Having known since Monday that I was still hypothyroid, I assumed the phone call would be a simple case of confirming I needed more medication and finding out the results of my other blood tests. It was almost that simple. Almost.

My other test results are normal, so that is one piece of very good news. However, my thyroid results have actually got worse since I started the medication. My TSH level has risen from 13.9 to 16. The medication should be bringing it down.

I can’t explain this result. What’s worse, neither can the GP. I asked several times if this is unusual and the question was dodged every time. I don’t think she knows. She suggested I should get a further private appointment with an endocrinologist so he can ‘tell her what to do’. Seeing him on the NHS isn’t an option if I want an appointment any time soon. Probably even any time this year.

After my previous appointment, the endocrinologist didn’t want to see me again unless my results showed additional disorders. Hypothyroidism should be manageable in primary care and on the NHS. However, the GP has no appointments available to offer me. She won’t even have time to write my prescription until tomorrow. She’s never met or spoken to me before and isn’t even from the surgery I’m registered with.

I’ll get a prescription for a higher dose of levothyroxine tomorrow. It has to be taken at least an hour before breakfast, so I won’t start it until Saturday. At this point I’m not feeling very optimistic. I’ve been taking 50mgs for 6 weeks and I’ve got worse. It doesn’t seem likely that 75mgs will be enough to not only halt the decline but also get my TSH down into the target range. It’ll be another 6 weeks before I can have a blood test to confirm that. And I’m so very tired of being tired.

One thing this process has taught me is to have more confidence in my judgement. I had queried thyroid issues before they showed up in my blood results and was fobbed off. I had felt like I was getting worse in the last couple of weeks but assumed it was in my head and I just wasn’t being patient enough. Again, the signals my body was sending me were correct, as was my interpretation of them. I have contacted the endocrinologist’s secretary and will see if another appointment gets me an explanation.

It is dawning on me that even small improvements could be a long way off yet and that I will have lost a lot of fitness by the time I’m better. I will get that back. I won’t get back the hours and hours I’m wasting asleep. I also now have a work issue. Today brought extra bad news – RunUltra will fold on 12th May, so I will need to find some more coaching clients or an additional job that can be done from home and managed around my current energy levels. I’m trying not to think too much about that just now, but I need to have things to occupy me that don’t make me worse. Obviously I also need to earn.

I am trying to avoid Dr. Google. If anyone reading this has Hashimoto’s Disease and knows why I might be getting worse, I would love to hear from you. I am wondering if the autoimmune issue is escalating and I would have had an even greater increase in my TSH without the medication. That seems a logical explanation, but may well be the wrong one. I am not good with uncertainty, so hopefully I’ll have some answers soon. The medication increase has to be a step closer to feeling better, so I’m trying to stay positive.This doesn’t seem a fair distribution of nap space!

Clearly, there’s still the wider issue of a struggling NHS at play here. I’ve had some excellent NHS treatment in the past. I worked in the NHS for 8 years. I believe in the ethos behind it and the clinical staff working in it. I don’t want to see a two-tiered healthcare system. But if I don’t go private on this occasion, I’m not sure the NHS is able to offer me adequate care. If I can’t work then I can’t contribute to the system, not to mention the impact on my quality of life. I feel like I have no choice, and that’s a very sad thing that goes way beyond my personal situation.

2 thoughts on “A further rant

  1. It’s good to rant. Sorry to hear that your measures have got worse and the GP was clueless. I can understand the uncertainty being awful… especially when you’re so tired because that makes everything feel worse. I take on board what you say about not wanting a two tiered system. I’m afraid it’s inevitable really. . well, it already exists. If you can go private and get some answers and get on the right medication it will be good got you… but also for the greater good (as someone else will have the NHS place on ghe list.. plus, as you noye, you’ll be working, contributing and the wheels keep turning). Thinking of you.

    Like

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