General Update #25

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I hadn’t planned to do another update on my own thyroid health journey for a while yet, but upon receiving some unfortunate news today, it felt like I should share it with you all as it forms part of my thyroid journey.

Rachel Feeling Frustrated About Thyroid Treatment

You may recall that in my last update two months ago, I had decided to explore the possibility of obtaining my NDT medication via private prescription for various reasons.

To sum these up briefly:

  • I’m worried about consistency issues of Thyroid-S since my Free T4 level dropped and then despite increasing my dosage, dropped further (with both thyroid antibodies very low and in remission).
  • Despite my Free T4 being below range, Free T3 was still good which meant that it is likely my Free T3 will have to go over range before my Free T4 is optimised mid-range (and I’m concerned about longterm effects of above range Free T3 levels).
  • I have started to think about how my thyroid medication will work when the day comes that I will want to start a family. I don’t know when this will be but it’s a good idea to start thinking realistically about how it will all work so it goes as smoothly as possible with the added complications of my unconventional thyroid medication. Being on a self-sourced medication will for sure get the NHS’ back up and cause tension there. I expect a lot of push back and I also don’t really trust NHS staff to dose me on it while pregnant and keep any baby safe. I will also need optimal Free T3 and T4 before even thinking of trying to get pregnant and it’s looking like my current medication won’t do this (see the point above).

The problem is, going private here in the UK is obviously not cheap and also not affordable to a lot of people, and so I have been collecting information on various doctors, their experience, medication options and of course fees. I’m hoping I’ll be able to afford it but I’m still working that out. It’s not an easy decision to make.

In fact, whilst collecting all this information, emailing and calling up various doctor’s offices, I was becoming increasingly overwhelmed by it all. There is so much to consider and the whole process is incredibly daunting and alien to me. So I was waiting to see what my latest thyroid test (which I had done last week) results came back as, to form part of the plan going forward.

However, upon calling my current NHS doctors surgery today to book an appointment for something non-thyroid related, I learnt that my current GP has left and this is frustrating for various reasons, but also perhaps the extra sign I needed to explore private prescriptions.

You see, the NHS GP I had been seeing for the last three and a half years was of a rare breed. Many thyroid patients will know that finding a GP who really listens to you and takes your thyroid condition seriously can be rare, but also one who:

  • Understands that you don’t respond to standard T4 (Levothyroxine) medication and therefore need a different form (in my case, NDT)
  • Tests the full thyroid panel and not just TSH
  • Tests them every six months as standard (many only test every 12 months which is problematic) but is also happy to test in between if you feel off, as they trust that you know your own body best
  • And helps manage dosage based on more than just TSH, by looking at the full panel of test results and going by how the patient physically feels

I feel like I’m back to square one by losing him. Self-sourcing my own thyroid medication has never been ideal and I’ve always expressed my concerns about it. But it was made easier when I had a doctor who understood my situation and didn’t judge me or tell me I was wrong for not being on Levothyroxine. A lot of thyroid patients seem to be self-sourcing without their GP’s support/consent/guidance/or even being aware. It took me going through a lot of doctors and pleading with a lot of doctors before I found him – the kind of doctor many thyroid patients need. Many before were dismissive, uncaring and stopped me from getting better. By also doing the full thyroid panel testing he did without batting an eye and listening to how I felt instead of just going by TSH, he has helped me to get better and maintain good health.

My concerns with having to start building this relationship again with a new doctor at the practise is that they likely won’t approve of my current medication (yet will still refuse to prescribe it) and so will blame anything and everything on it. They won’t want to test twice yearly instead of the more common once a year and will also likely not see the value in running the full thyroid panel. They’ll just freak out at a low TSH. And any possible pregnancy will be that much harder without a GP fighting my corner. It has all just gotten harder and more complicated once more.

Why aren’t there more of these doctors?

I always felt incredibly lucky that I had a GP who was so supportive of my situation, but now that he’s gone, I feel like I’m standing alone in a sense. He was happy with what we were doing so even if another doctor or medical professional thought the opposite, I still had his support and that helped. I feel like I’m now going against the NHS alone again. I’m not sure if I can go through that whole saga yet again.

I guess going private could make a lot of this easier and that’s what my next step is looking like it will be.

Behind all the thyroid advocacy work and awareness that I do, I am still just another thyroid patient trying to get adequate care, testing and management on the NHS here in the UK. And I know that many thyroid patients in the UK at the moment are frustrated with the way we’re treated (or lack thereof) which leaves many with symptoms, ongoing complaints and poor quality of life.

Other updates since the last blog include increasing my thyroid medication dosage (it has now been 8 weeks). I don’t really feel any different but I’m hoping my levels reflect that I’m closer to being optimised once more. I feel in great health physically, with my exercise still increasing. I’m doing two aerobic dance workouts a week (at an hour a time), and one salsa dance class a week (just under two hours). Plus I’m walking every day for 40 or more minutes.

When I went to Bruges for a few days on holiday, I mentioned that I had become constipated and broke out in acne and wasn’t sure why but upon starting digestive enzymes again, this resolved quickly, so that was a short term blip but it did get me down a bit.

My mental health has been up and down along with the frustrations of my current thyroid situation. Everything feels a bit unstable and I don’t like things being up in the air so it can make me feel a bit fed up some days. After being on the waiting list since last year, I finally had my first Step 4 Mental Health appointment and they seem to be helping a bit so far.

As well as thyroid levels, I have just had some testing done for vitamin and mineral levels as well as diabetes and pre-diabetes, which admittedly scares me a bit! They will probably be fine but I’m a worrier after all. I don’t have any signs or symptoms but it was more of an overall health check. Especially as they say we’re more at risk for developing diabetes with a thyroid condition.

I’m also looking at moving away from sanitary pads and tampons and towards a menstrual cup instead, as it is better for our bodies (less chemicals etc.) so will make sure to write about my experiences with that. I know some of you will be interested to know how that works.

I’m currently reading the book Beyond The Pill by Dr Jolene Brighten which I will review on my blog at some point. I’m also working on my second book which will be released in August.

How are you doing with your thyroid health?

Read the next blog in this series.

You can click on the hyperlinks in the above post to learn more and see references to information given.

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Written by Rachel, The Invisible Hypothyroidism

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3 thoughts on “General Update #25

  1. This had me concerned, as ive been on Thiroyd , the other Thai brand NDT and in past few months found i didnt feel as good on it as before…fast heart beat, sluggish etc. recently had a blood test and found my t4 to be much higher than normal but my t3 not as high. I cant increase my dose as that gave my palpatations. But i cannot afford to self source the US brand anymore.

  2. Sorry to hear your GP’s leaving.
    I was diagnosed a few years ago as having Hashis. It took years of pleading and finally my doctor agreed to test me (after many misdiagnoses).
    We moved north in 2017 and my current GP is awful. Dismissive, unenlightened, rude – and always suggesting I’m slightly hysterical. He started me on 50mcg Levo in January and won’t retest until August. So I’m making the leap and have ordered some NDT online without his knowledge or support. I’m having pretty worrying side effects from the Levo, I’m still freezing cold and tired, my stomach is a nightmare…
    I now get blood tests done privately (he didn’t like that either) and am addressing my poor vitamin D, iron and folate levels. I live in a very remote part of Scotland, not even on the mainland, and the nearest private consultant is a 6 hour drive away.
    I have a little boy who’s six and I want to be well for him as well as for myself. So instead of feeling defeated (as I always do after a fruitless discussion with my doctor) I’m researching and making the most of the amazing online community – their knowledge and support. I’m new to your site but am enjoying reading your posts 🙂
    Fingers crossed you get a decent doctor, or that you figure out a way forward should you go down that route.
    S xx

  3. This reminds me of the same thoughts and struggles I had when looking at alternative treatment and NDT. I remember buying treatment from America online, and looking at costs of private appointments in the UK (even more expensive). I do feel for you having to go through all of this. And even more so perhaps with your GP leaving. I was devastated when mine left as it took so long to find someone who listened, who cared, who thought outside the box. There are some positives that are good to hear though, like with walking a bit (quite a lot actually, 40 mins) each day, of course Bruges, starting your Step 4 Mental Health appointments. Fingers are crossed you get your blood results back soon from the vit/mineral/diabetes checks. Hang in there, Rachel. You’ve been through these shittier, rougher, more awful times before and you can get through it again. Sending hugs xxxx

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