Monday, 23 July 2012

Experiences with T3 treatment - part two

As I write this I have a few misgivings. I don't really know what's going on you see. I can only share my own personal experiences and I don't want to mislead anyone and the fact is, at the risk of repeating myself, I really don't know what's really happening with me at the  moment.

However, I promised an update on the T3 situation so here it is. How things appear to stand, right now.

If you haven't read Part One then you probably need to, or this post won't make much sense.

As reported in Part One, on reducing my T3 meds initially I didn't really feel a difference. I was surprised and delighted. As the days went by I noted that really there seemed to be no change. I didn't feel 100% normal but I didn't feel worse than before the change. So far so good.

But over time I began to wonder if my brain had become a little more foggy..... I'm still wondering that.... but I don't know...it's hard to tell.  I am learning that for me thyroid symptoms are subtle and changes take a long time to become apparent.

I have a belief that perhaps T3 medicine helps my brain function more clearly. Partly this is based on my memory of when I started taking T3 alongside thyroxine.  I remember our first British Thyroid Foundation London event back in April 2011 which was a just a day after I started taking 20mcg daily of T3 (for almost a year prior to that I had been on 10mcg which I thought had helped me, but maybe not that much), I was thrilled at the time by how much more energetic and on the ball I felt during that event and yet I noticed that although I was able to stand up straight and talk coherently and manage the event effectively, my brain felt like total mush during Mark Vanderpump's presentation, I literally couldn't absorb information, nothing stuck, facts just bounced off me and it was like I was an untuned TV or something, kind of full of static!

Here I am welcoming everyone to our first event in #April 2011, Judith Taylor and Mark Vanderpump seated on right

But then when we did our next event, when I had been on the increased dose for a while, my brain was working fine, I could understand what was being said easily, as well as doing the stuff I needed to do to make the event go smoothly. I was so happy, I felt close to normal and people there commented that I seemed so much better. 

Sadly I then had my thyroxine reduced (which seemed like a good idea at the time as I believed it was the T3 that was  helping me and with a TSH of less than 0.05 it seemed reasonable to aim to get that up a bit, to avoid long term bone and heart problems) and slowly over the next few months I ended up seriously mushy brained again. Sigh.

Those events are not my only two frames of reference but for me they seem meaningful. Maybe they are, maybe they're not.  The truth is an elusive animal. Evidence can be misleading. There is the whole Vit D scenario to consider, as outlined in previous posts.  Writing this post has made me think it is worth reconsidering the timeline of events and symptom changes to consider whether there are other factors I should be more mindful of.

Anyway, back to 2012 and my new endo recommending we reduce the T3 and see how we go, on the proviso that if I feel worse I get to go back to the original dose. It's now more than 2 months since the initial reduction. I'm now concerned that I seem to be in a bit of a daze. I have been ultra slow responding to comments on this blog, I have been short of work yet not felt able to summon the mental focus to do much about looking for more. I've felt muddled  and slow when doing the work I've had. I had a job interview and was very rambly and waffly in it (which seems like a sign my brain is foggy though could simply be I am out of practice since it was my first interview in 5 years). I feel I have been unbelievably slow and disorganised around my British  Thyroid Foundation admin and communications. Housework and hairwashing have felt like major tasks.

Yet on the positive side, I have lost more than half a stone (this is likely due to dietary changes which I will write about separately) and I am taking regular exercise! Actual exercise!! I'm playing badminton once a week and also going to weekly yoga and tai chi classes. The badminton is quite a full on aerobic work out, but I am  playing with ladies who are all older than me (it's a daytime club so most of my fellow players are retired and we are all women), so it's not as full on as it could be, but it is a proper work out. The yoga and tai chi are both super gentle, also mostly retired ladies in the classes, but the teachers are excellent and I can feel the benefits already. I actually feel quite confident that I am going to be able to increase my physical exercise and fitness levels over the coming weeks and months. Gently does it, pacing myself carefully. Avoiding the classic chronically ill person's pattern of doing too much as soon as I feel better and then knocking myself back.

So, to cut a long story short, am I better or worse??? I don't really know!!

I had more blood tests at the start of June and finally got the results this week (NOT impressed with that time delay thank you, Kent NHS). My new endo has now suggested that I cut out the T3 meds entirely until my next appointment with him in September. Basically the original dosage cut has not really impacted any of my numbers. TSH is still less than 0.05, T4 and T3 are still right at the upper end of the range, in fact they have both increased slightly.  I have decided to follow his advice. Today is day four of thyroxine only. I don't feel worse, I don't feel better, but experience so far tells me that it will be a while before I can really assess the impact. Trusting that he will let me go back on it if I am worse when I see  him next, or if I really feel worse in the meantime, watch this space.....wish me luck!

As always comments are positively encouraged, I'd particularly love to hear how other people have got on with T3 treatment, or just generally compare notes with other thyroid patients, or those suffering from other chronic illnesses

sendiing smiles :)


7 comments:

  1. Hello Lorraine!

    I could not find where to email you. Please excuse me contacting you this way, but we are pleased to announce the launch of ThyroidChange (www.thyroidchange.org): a web-intiative that was created and is maintained by thyroid patients advocating for better treatment. Since we LOVE your blog, you are listed on our site as a resource for patients interested in sharing your journey. (Resources>Patient Blogs>Hypothyroidism & Hashimoto's)

    You will quickly see the uniqueness of our site in that we are seeking to encourage the individual patient to become a self-advocate while uniting and supporting all of us (patients, organizations, groups, blogs and physicians). Please use this site and it’s resources to your benefit. Please also contact us if you would like to be listed as a member (membership is free).

    I hope you choose to support ThyroidChange!

    Cheers!
    Michelle

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    1. Hi Michelle!

      Thanks so much for getting in touch. I love the look of your website and am delighted you've listed me. thank you.

      However, I have a number of issues with Thyroid Change in it's current itteration.

      Can I suggest you also list www.btf-thyroid.org as the leading thyroid patient's charity in the UK, I work closely with them and they have groups and telephone support contacts all over the country as well as lots of leaflets, books etc which are all reliable and of good quality, medically approved.

      Also: British Thyroid Association and European Thyroid Association, the medic's organisations here in UK and Europe, which both publish treatment guidelines which patients can show to their doctors if they are having problems. Doctors naturally are more inclined to take information seriously when it comes from a source they trust. I hear from some endos that the ETA guidelines may differ from BTA's so it's worth making patients aware that their are different points of view and different potential treatment options for thyroid disorders.

      I will send you a message about the petition. I know I've already mentioned to you (when you contacted me on facebook) that I have some concerns about it and apologies I haven't yet explained them. I've been busy and also a little unwell. Now feeling better and you are on my list to write to properly asap!

      In principle of course I support your aims, sadly some patients do not get the care they deserve from their doctors and some doctors are not as well educated about thyroid matters as, frankly, they should be. This needs to change!

      However, I am not comfortable with the dogged focus on T3 and Armour treatment which comes across on so many sites for thyroid patients and there are a lot of reasons for this which I will outline for you.

      I'm afraid I also feel that the way the petition is written it will not be taken seriously and that's a shame, because I agree that there is a very important issue here that needs tackling.

      Having said all that I am delighted we're in touch and hope we may be able to find ways to collaborate, I have added you on google plus (you are my first contact on there!) and look forward to further dialogue.

      warmest wishes

      Lorraine

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  2. Hi Lorraine~ First, congrats on your weight loss! Success in Thyroidland gies the rest of us hope. Second...brain fog! Sometimes I feel like thoughts and memories have been plucked right from my head. Third, I understand how hard it can be to assess where we are in our healing process. Symptoms rotate, come and go, some linger, some disappear, some disguise themselves as something else. Sometimes if I am not feeling well, I have to remind myself that my thyroid isn't the only part of my body/life and that something else may be the cause. Otherwise I may delay in figuring out what the true problem is. It is so hard when the symptoms themselves are little worlds of problems on their own. I know that I seem to focus on how I am feeling today instead of looking at the long-term picture. This is easy to do as I frequently can't remember the long-term picture (hello again brain fog). Thank goodness for my journal. Anyway, regarding experiences with T3. For me, I think it has been wonderful. I am not quite as far along as you in my healing process as I am still going up on dosages and have not yet experimented with decreases. But I feel that the T3 makes all the difference in the world for me. That said, each time I have increased any dose, it has taken roughly two weeks for things to "even out" and allow me to assess how the meds are working for me.

    I wish you all the best in this part of your healing journey and I hope that the medication picture become clear soon for you :) Keep us posted.

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    1. Hi! thanks so much for stopping by, I really must get better and keeping on top of comments on here. It's lovely to hear from you. I'd love to hear more on how you get on with T3 longer term. Please keep me posted!

      I've now been on thyroxine only for more than a month and I don't feel any worse than I did. I think I feel better overall, sharper mentally and generally more active.... I think switching when I take my meds to night-time and going gluten free have both really helped me. I had some more blood taken last week so will find out at my next endos appointment what the numbers say but on the whole I now feel as if T3 may have been a massive red herring for me.

      I just did a new post which summarises most of what I feel I've learned so far, meanwhile, the journey continues, it's so good to share it with thyroid friends.

      love and light. x

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    2. Oh and just to add to the below - I've now lost another half a stone, so VERY happy about that. :)

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  3. thanks for sharing.

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    1. you are so welcome, sending wellness vibes your way. :)

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