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General Updates / My Personal Experiences

General Update #26

General Update #26

Read the last blog in this series.

I have some exciting news to share today… After the last few months being so up and down regarding figuring out what I was going to do with my thyroid medication situation, I saw a private doctor in London.

Rachel Smiling at The Camera

In my last few general update blogs, I’ve spoken about how I was wanting to go from my self-sourced Natural Desiccated Thyroid medication (NDT) to a prescribed NDT for several reasons.

The problem I had was figuring out how to navigate the private healthcare world, how much it would all cost and really, if it was achievable in my situation. Unlike other parts of the world, such as the US where NDT medications are more readily available, they’re really not here in the UK and on the NHS. Which means that for many of us, they’re out of reach. Even if Levothyroxine does not help us.

Because of this, I began self-sourcing my NDT medication back in 2015 and have done since, going to my GP who ran full thyroid panels every six months and tweaking the dosage together (though admittedly, he wasn’t super confident about it). But now he has left, as I explained in my last post.

Fast forward to now, and I spent yesterday in London, seeing a private doctor to discuss him prescribing me NDT medication. Despite my anxiety and nervousness, the appointment actually went incredibly well.

I prepared some papers for him, including my most recent blood tests, a written history of my thyroid health (first symptoms, when diagnosed, when I started different meds, supplements etc.) which he really appreciated and the first thing he did was read them all.

After a quiet five minutes, he looked up from the papers and said “I suppose you’re here about wanting NDT?” I let go of my breath with relief and said I indeed was. The doctor said straight away that he saw no reason why I couldn’t be prescribed NDT, when I had been so healthy on a self-sourced brand all these years. Asking me which brand I wished to go for, I chose Armour after much deliberation, mostly because of availability. I know other brands are experiencing shortages at the moment and it is one thing I don’t want to worry about. I am anxious about changing NDT brands and seeing if I feel any different, and I am aware not all feel well on Armour, but it is going to be a case of trial and error with whichever type I change to. We’re all individuals after all!

He explained that he is an NHS GP two days a week and a private GP two days a week, and it frustrates him that he can’t prescribe NDT on the NHS. Working for the NHS, I felt that this meant he sat in a good place between mainstream medicine and alternative, since he also likes to use a holistic approach and even praised me on seeing a functional medicine practitioner.

I know many of my fellow thyroid patients in the UK will be wondering about associated costs of all of this. Whereas I don’t feel comfortable giving the name of this specific doctor (I know I share a lot of my health experiences publicly in order to help other thyroid patients but I need to keep some privacy and and I wouldn’t want others to expect him to be able to do exactly the same for them either – we’re all different), I will share that:

  • The cost of the 1 hour consultation appointment was £180.
  • The cost of the NDT prescription (100 tablets a month is my dosage, it differs from person to person) is £120 a month including postage (the pharmacy in London sends it to my home via post), this fee is taken from the pharmacy.  The doctor himself takes a £40 fee for producing the prescription.
  • The cost of 15 minute follow up appointments (which can be done via phone or Skype) are £60.

As I excitedly wait for my NDT to arrive in the post, I feel very strange about it all. I’m excited yet nervous. I didn’t think I’d ever have it prescribed to be honest, yet I feel extremely fortunate to be in this position. It is costing me a lot of money, so I’m already working out where I’ll make room for it. This wouldn’t have been an option for me, financially, before now so it seems to have come at the right time. It does make me feel very angry that there are so many thyroid patients out there who don’t have this option, though. 

If you’re in the UK and wanting to take the private route, perhaps as T3 and NDT medications have been denied or you’ve even been taken off them, there are a few ways to find a practitioner. As well as a general internet search, you can contact charities and organisations such as Thyroid UK who often have lists (this is what I did), as well as asking on patient forums. I will probably plan to do another update in a few months time, after I have switched over and have had time to see how it all goes. You can follow me on social media in the meantime. Instagram is where I share personal insights, as well as in my newsletter.

Just to reiterate – I won’t be releasing the name of my private doctor. I already share so much information about my personal health experiences to the world (which is already very overwhelming at times) that I request I am granted some privacy when I ask for it, and that this is respected. I already share so much with you all. I found this doctor by asking for recommendations online and contacting thyroid charities and organisations for their recommendations.

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.

See my article on how to find a good thyroid doctor here.

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

Have you had to go private for some of your thyroid healthcare? Feel free to join in the discussion in the comments section below.

Be Your Own Thyroid Advocate Book CoverSee also:

The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tiredwhich builds on this article in detail. Reclaim your thyroid healthy life.

About Author

Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes writing articles, authoring books, producing her Thyroid Family email newsletters and speaking on podcasts and at events about the many aspects thyroid disease affects and how to overcome these. She is well-recognised as a crucial and influential contributor to the thyroid community and has a large social media presence. Her bestselling books include "Be Your Own Thyroid Advocate" and "You, Me and Hypothyroidism".

2 Comments

  • Jake
    November 14, 2019 at 5:40 pm

    Hi Rachel,

    I have just read through your full thyroid NDT journey to date. I really hope you have success with Armour and congrats on finding a doctor you can rely on. You’ve done all the hard work so to be facilitated while having the treatment you’re owed 100%!

    I don’t understand why Endo’s in the UK aren’t looking closely at the evidence base of actual patients before taking them on a case by case basis to prescribe NDT. They’re clearly aware of the success in patients in the U.S. I think that it would be 100% fair for us to pay for that medication to be sourced however as we pay our taxes and are UK citizens we should have that option so we don’t have to find other doctors to monitor. With that being said I think I will happily go private to get that one to one treatment going forward as you can’t compromise health. Maybe a petition for clinical hypothyroid UK patients is needed to send to a board at the NHS. I think it’s a strong case when you display strong uncompromising side effects.

    I hope everything is going well on your new Armour meds so far and all is well with your pregnancy!

    Please keep us updated on the Armour results as I know myself and many of your followers have probably related to your story and want to take that route too. I have only recently started following your journey and also the Facebook thyroid family group. It’s so good to have a community of people addressing the same issues as you can feel alone battling these symptoms and frustrations.

    All the best and thanks for all the insights.

    Jake

    Reply
  • Caz / InvisiblyMe
    July 4, 2019 at 3:14 pm

    I am SO happy for you, Rachel. It’s a big decision to go private because of the expense, though the prices are as eye-watering as I’d anticipated. It is all trial and error but if you don’t try you’ll never know, and my fingers are very much crossed for you & Armour xx

    Reply

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