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Since my last general update back in February, quite a bit has happened and I’m at an important part of my thyroid journey with decisions to make.
In terms of my hypothyroidism, weird stuff has been going on! As I mentioned back in February, my Free T4 had dropped to below range (eek!) and my Free T3 had dropped slightly too, although was still midrange. So I increased my NDT dosage by 10% and then retested my levels after seven weeks. The results? My Free T4 had still somehow dropped some more and my Free T3 had too!
I was shocked as I started having heart palpitations once on this higher dose for a few weeks, so I was convinced that I was overmedicated, but I am in fact quite undermedicated. I’m now wondering if that’s the reason why I have been having heart palpitations after all.
Whilst I will be starting on another medication dosage increase from tomorrow, I do have some big decisions to make going forward.
Whether Thyroid-S (the NDT I am on) is having a consistency problem or has changed it’s composition of T4 to T3, I think we can see that it is no longer working for me. Even as I increase my dose, I can foresee my Free T3 level going above range by the time my Free T4 comes just back in to range. I don’t think the amount of T4 to T3 is working for me anymore. Having been on it for almost three and a half years now, and feeling very well since being on it, it’s scary to think about changing thyroid medication again, but I am concerned about having such low Free T4 levels for long periods of time, despite actually feeling in my best health.
I’m also trying to think about the future and I’m starting to think about what I’ll do when the time comes to consider starting a family and looking at going through pregnancy, too. I am feeling less and less comfortable being on a non-prescribed thyroid medication, despite my GP’s support, as time goes on and again, looking forwards to when I’ll hopefully one day be pregnant, I would feel more comfortable being on prescribed medication for this and have someone I can trust to medicate me properly. I’ll also need my Free T4 to be within range and preferably optimal. I wouldn’t even attempt getting pregnant without optimised thyroid levels.
For these reasons (thinking about the future, feeling as if this NDT isn’t work for me anymore and worrying about the long term impact of low Free T4 levels), I am looking in to private doctors here in the UK who would be willing to prescribe me either NDT, or T3 and T4 to take together. I know I don’t do well on Levothyroxine (T4-only), but I have to remain open-minded about other medication options. After all, it seems that what my body needs may be changing over time. I’ve tried to get NDT prescribed on the NHS before, but as many in the UK already know – it’s pretty much impossible.
The thing is, going private is obviously not cheap and also not affordable to most people, and so I’m still collecting information on various doctors, their experience, medication options and of course fees. And I’m hoping I’ll be able to afford it. I may be a thyroid advocate but I’m still a thyroid patient who works part-time. I’m not in a much different situation to most of my followers.
I’ve been feeling rather frustrated about it all in the last few days, because the other parts of my thyroid jigsaw puzzle were finally ironing out, with my adrenal fatigue, sex hormone imbalances, gut issues etc. all addressed. And then of course, my thyroid levels which have been optimal and stabilised for ages now, just decide to go haywire!
I just feel that I’ve probably come as far as I can on self-sourced thyroid medication for now and I need someone else to help guide me (my NHS GP does so much but he really doesn’t know how to dose it or manage me with confidence) and share some of this burden. Being your own health advocate can be tiring and it’s a very up and down affair. As soon as I get over one bump in the road, another is already waiting for me and rather than keep altering my NDT dosage (with the guidance of my NHS GP of course) and spend a lot of my personal time being my own doctor, I hope I can finally obtain a relationship with a medical professional I can trust to know what they’re doing with it instead. Or maybe know what medication might work better for me.
If you’re in the UK and can recommend someone, please do let me know.
Of course, another option may be to consider whether adding T4 in the form of Levothyroxine, to my NDT would work (obviously prescribed by my GP), but I’m unsure if this would open up a can of worms and only result in them trying to get me to move back to Levothyroxine completely, or if it will waste more time and energy. And I don’t hear many success stories about people adding synthetic T4 to their Natural Desiccated Thyroid Medication. In fact, it’s usually not recommended.
Do remember that you can keep up to date with my personal health journey via Instagram. My Instagram is updated with realtime updates and you’ll be able to follow along as and when everything happens over there!
Read the next blog in this series.
Where are you in your thyroid journey?
You can click on the hyperlinks in the above post to learn more and see references to information given.
The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which covers Rachel’s journey back to good health.
TrishMay 4, 2019 at 11:49 am
I was having palpitation too on Thyroid-S after more than 2yrs on it, that’s why I decided to try other brand. I am on Thiroyd brand for 4 yrs now and no palpitation.
Donna GrantApril 6, 2019 at 6:20 pm
How much are you currently on ? ?
Caz / InvisiblyMeApril 6, 2019 at 5:14 pm
I’m sorry you’re having issues with your current meds, it’s frustrating when something stops working or starts kicking back at your body with side-effects. I can understand the apprehension with having to change thyroid meds again. It’s beyond frustrating how NHS prescribed meds for hypothyroidism are so restrictive. Levothyroxine didn’t suit me either and it’s appalling to think you’re now having to look at the expense of a private doctor to have NDT or T3+T4 prescribed. It’s a lot to weigh up and with thoughts of the future and hopeful pregnancy too I can see why it’s all been quite frustrating and exhausting recently. But, this is a turning point moving from self-sourced and who knows, maybe you’ll find a good doctor who can guide you towards a med that works really effectively and without too much hassle, though the expense is pretty unavoidable unless maybe he could suggest an alternative arrangement supplementing with NHS prescribed Levo. I’m sorry I can’t help with recommending anyone but I really do hope someone can help you out with a name, I’m sure there’s someone reading this or on one of the FB groups that has had a good experience to point you in the right direction.
Anita MurphyApril 6, 2019 at 3:49 pm
Hi Rachel I am on ndt too only been on 4 months and I feel a different person I had the same heart populations and googled it and found that ndt can be taken in 2 halfs different times of the day but equals the same amount of medication by doing this it stopped my heart pulations and kept my levels right
EricaApril 6, 2019 at 11:22 am
Hi, if you are feeling well why worry?! Is your GP suggesting the changes in dose? I take self-sourced NDT Nature-Throid. My GP constantly tells me I’m taking too much because my TSH is suppressed. But I don’t feel well unless it is just suppressed. My T4 is lowish which tells me I am not over replaced, (to me that means it’s being converted) my T3 is in the middle and I feel fine.
Your dip could be due to a minor bug, or winter, or any number of things. If you are symptomatic, yes you may need an increase but that’s not what I’m reading. 🙂
Rachel HillApril 6, 2019 at 12:00 pm
Hi Erica – as explained in the post, I’m concerned about the long term effects of having such low Free T4 levels. And when the day comes to try starting a family (which I’m not sure when that will be but naturally as a woman in my mid-twenties, I’ve started thinking about it) I would want my levels to be optimal before I even consider it. It wouldn’t be responsible to try conceiving on such low levels.
My TSH has always been suppressed when on NDT, too, but I’m looking at a Free T4 quite a bit below range right now. It has been dropping steadily from low in range to where it is now, below range, for about a year, so it’s not temporary.
Thank you for sharing your personal experiences and insights though – it’s from sharing these that we can learn a lot.