Hints and tips for poorly hypothyroid patients

It's now more than 3 years since I was diagnosed as hypothyroid. What have I learned in that time? Quite a bit. How have things changed? Beyond measure. How is my health these days? A LOT BETTER - HURRAH!!! For those who are currently feeling rotten, there is light at the end of the tunnel. I firmly believe I can promise you that. 

"There is light at the end of the tunnel." Pic from activerain.com 

I have a lot of conversations these days with other thyroid patients who are at different stages in their recovery from a hypothyroid diagnosis. I thought it would be useful to post a summary of the advice I now pass on, based on my own experiences and what I've learned from reading, from other patients, from my various doctors appointments and from the wonderful talks with leading endocrinologists I've been lucky enough to attend through the British Thyroid Foundation London Group meetings. 

I have learned that hypothyroidism in the UK is mostly caused by an autoimmune disorder called Hashimotos Disease. Whether or not the doctor talks about Hashimotos makes no difference. Some doctors name it, some don't. Most people respond well to treatment with thyroxine via their GPs, but around 20% are harder to treat. I am one of the 20%. 

I have learned that thyroid hormones govern a lot of functions in the body: food metabolism, weight, brain function, feeling the cold, emotions, hair condition, skin and nails, they also impact on heart and bone health. When our thyroid hormones are unbalanced we can feel and look pretty dramatically terrible. It's not much fun. 

I have learned that anyone exhibiting mental health issues should have their thyroid tested.  I experienced extraordinary tearfulness and low emotions for a while when my thyroid hormones were clearly badly out of kilter. It was pretty strange but fortunately very temporary. Generally I'm a happy soul, explaining that to my doctor as I found tears welling up when I was talking to her helped her to understand that my tearfulness was a thyroid symptom and not the depression it may have looked like to begin with.  

I have learnt that sadly some doctors are not very on the ball when it comes to thyroid conditions. However there are plenty of good doctors out there and there is no need to tolerate one who is either unsympathetic or  ignorant about our conditions.  BTF is working with the BTA, the endocrinologists professional body in the UK, to help raise the standards of GP care for hypothyroid patients.  I'm not sure how well that project is going as I haven't had an update for a while but I am determined to do what I can to support it to progress as it's very clear from various websites and conversations I have with patients at meetings on the phone that action needs to be taken. In the meantime, if your doctor isn't giving you the care you need - change them. Ask around to find a doctor in your area who has a good reputation. 

I have learned that often patients who don't feel right when their blood tests are in the normal range may feel better when their TSH is at the lower end of the range and their T4 is at the upper - end and GPs have the flexibility to adjust thyroxine doses, within the range, until their patient feels better. 

I have learned that the official treatment guidelines for hypothyroidism state that if a patient still feels unwell when their blood tests are normal and the GP has done as much as they feel confident to do around tweaking the dose of thyroxine, they should be referred to an endocrinologist who can do more tests and may suggest alternative treatment. 

I have learned to always insist on being given my blood test results and to take my results and a brief symptoms summary to every doctors appointment. 

I have learned that a suppressed TSH can cause serious heart and bone problems and that's why doctors don't want to risk prescribing too much thyroid hormone and are mostly not keen on prescribing T3 meds. (my TSH was less than 0.05 for quite a while and I now know it wasn't wise to let it stay that way, hence my recent dosage reductions).

I have learned that taking T3 (liothyronine) medication alongside thyroxine did not solve my thyroid problems although it seemed to be helpful for a while.  I have found that ultimately other factors seem to have been more significant in my recovery.

I have learned that symptoms can be down to causes other than thyroid, if we have one autoimmune condition it basically means we have a weak immune system and will be prone to others. Aren't we lucky. Other possible causes should be investigated as a priority when a patient isn't responding to hypothyroid treatment as expected.  It was discovered that I had a vitamin D deficiency, when this was addressed I quickly felt  lot better and now I take vitamin D every day, as well as my thyroxine. 

Absorption is a big issue with thyroxine. We take tiny amounts, micrograms of the stuff and if it's not helping us feel better there's a good chance that we're not absorbing it properly. Lots of things can impact absorption: first and foremost thyroxine should be taken well away from food and caffeine, even just a cup of tea drunk alongside your medicine, can really have an effect. The BTF guidance for hypothyroid patients says to leave at least 30 minutes before eating or drinking anything other than water after taking your meds. 

It can be worth switching when we take our medicine, to evening instead of morning so that it can be absorbed over night in an empty tummy. This can have a really profound effect on how well we feel.  There is some recent research in favour of this and I have lots of anecdotal evidence from people I've spoken to who've done it and been surprised and delighted with the results. 

I have learned that trialling a gluten free and generally low carb diet seems to be helpful for quite a few thyroid patients, even when we haven't tested positively for celiac disease. It doesn't help everyone and it can be a bit of a controversial area but my view now, on going gluten free, is that it is worth a try - and it has made a big difference for me. I have spoken to several endocrinologists who agree that patients who are struggling would do well to see how they get on without gluten. I cut out wheat first, for a month, that definitely helped me so I went the whole hog and 2 months later I have lost a stone and feel much better.  It's still early days but I feel very positive that this has been something I've been able to do for myself and seems effective. 

Finally I've written a lot in other posts about mindfulness and gentle exercise and all that good stuff. On the Expert Patient Programme I learned that we are always managing our  health, whether we do it positively or negatively.  I know that when I allow myself to get upset about stuff I am exhausted afterwards, so I cultivate serenity. I treat myself and others nicely. I communicate clearly, I take time out when I need it and I accept that I can't always do everything that I want to do. I'm only human, everyone has their limitations, I count my blessings, literally, regularly - and when I do that it always makes me smile. 

I hope this summary of things I’ve learned on my journey with hypothyroidism has been helpful.  Let me know what you think and if you have anything to add.

With Love and Light and Hope

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 :)

My experiences with t3 treatment.... part one

To anyone who's noticed how quiet I've been on here since moving house, okay, I'll come clean, it's because I've not been brilliantly well.

This post will only make sense if you know what TSH, T4( FT4) and T3 (FT3) are. So if you don't but are curious, all that is explained here.

I had my thyroxine dose reduced in September, by a tiny amount, didn't notice much difference, then moved house, started to feel a bit rough, put it down to the move, had my thyroxine reduced again and slowly started to sink into a bit of a muddle of unwell-ness, hello again bad hypothyroid symptoms.

Why was it reduced? Well, since I started taking T3 (liothyronine) alongside thyroxine my TSH reading  has been around 0.03 which is very low. My doctors in London seemed pretty relaxed about this but I'm aware that there are long term risks to my bones and heart of having a suppressed TSH, especially after Professor Graham Williams' talk to the BTF London Group last October so I was slightly uncomfortable about it. And although I felt better than I had before starting to take the T3 meds, I still didn't feel 100% well so was hoping that some sort of a tweak might make a positive difference.

So it turned out that reducing the thyroxine did not make me feel better, it made me feel worse. In fact, I ended up feeling quite lost in space. Brain fog descended, I seemed to be in a muddle a lot of the time,  constantly tired and short of time, occassionaly a bit tearful and low in mood, which is not the normal me.

Reporting all of this to my new endocrinologist and looking at my blood test results when I first saw him, which showed my FT4 had become very low in the range, he promptly put me back on my original dose and also suggested reducing the T3 medicine instead - but I protested!!

"No please!", in fact I cried a little bit, I was very, very scared that if my T3 was reduced my cognitive function would go completely down the tubes again, because before I took T3 I simply couldn't think straight, I was really in a mess back then. I didn't want to end up like that again, it's too scary to contemplate. Seeing my distress the doctor agreed just to change one thing at a time and we just upped the thyroxine.

That was back in February. Last week was time for another check up. My TSH is still too low. I still don't feel properly well. I've been ruminating on the stuff I learned at Graham Williams' talk (I am overdue to write more about this event and I will soon, promise) I really don't want my bones to crumble away or to have a heart attack so I was kind of open to the possiblity of reducing the T3, but also still very anxious about the idea.

Clever doctor pointed out to me that when I felt like a cabbage I had an undiagnosed vitamin D deficiency. This has since been picked up on and addressed. My vitamin D is now replete (nice word :) ) When I started taking Vitamin D supplements I noticed a profound improvement in my wellbeing and particularly my mental function. Perhaps that was the problem all along and it may be that T3 medicine is not actually required after all.....

Hmmmm, well perhaps, but I am scared, I am really scared. I am scared of being taken off this medicine that I believe is helping me and I am scared that if I stop taking it but then want to go back on it I won't be allowed to.

So I tell him my fears and he listens and he says, "T3 medicine seems to help some people but we don't really like giving it because it's not physiologically right - your body should be converting the right amount of T3 from the thyroxine you are taking - and because of the problems it can cause, particularly as your TSH is so low. Let's try reducing it, if that goes okay let's try stopping it altogether, let's take things slowly and if you feel unwell again you can go back on it."

Which I thought seemed very fair. So I agreed. He also told me to increase my thyroxine a little, to make up the difference.....

It's now day 5 of no T3 medicine. Guess what, I feel pretty good, possibly better than before in fact....... hmmmm, watch this space.

I'd love to hear from other people who have or are taking T3. It's great to be able to compare notes. Comments on here are always welcome.

Learning all the time. Ever hopeful. Sending smiles.

x

Shifting sands

I’m now in my new house by the sea and loving it. We moved at the end of October. I’m so excited to be here and everything appears to have gone pretty smoothly. But I must admit the move has taken it out of me a bit; that and the fact that I am now working, on a freelance basis, for two different clients, so work has gotten a whole lot busier. I’m pretty tired at the moment.

Mindful that it’s winter again and the last two winters my health went rapidly downhill. Wondering if there’s something up with my Vitamin D levels again, I went to my new GP to ask her to test it which she was happy to do but the results may take up to a month to come back!! That’s living outside London for you. So I’m unsure whether to just up my Vit D dose by myself in the meantime, in the hope it might do me some good, after all it’s just a supplement from the health food store I don’t think I’m likely to do myself any harm, or hang on and find out what the test says.  I want to do things properly and wait for a steer from my doc...

Also torn between changing to an endocrinologist close to home, which is an option, or to stick with the one(s) I see in London. The clinic in London is pretty shambolic, (patients waiting to be seen sitting on the floor / blood test and follow up letter mix-ups, not good really) and I generally see a different registrar each time I go there. But I know them now and they know me. I have a lot of anxiety about moving doctors in case the new ones don’t agree with the regime I’m on and I end up worse off. I’m also totally unsure about whether what I’m on is actually the right thing for me. It’s tricky, there seems so much controversy around thyroid treatment and here I am, over two years after diagnosis and still not wholly well, not knowing if there’s something else that could be tried that might make a big difference for me, I really don’t know what to do for the best...

Oh and my blog is under attack from spammers promoting desiccated thyroid supplements and like most thyroid patient who ever go digging around online for help for their condition and end up bombarded with people pushing this stuff, I do wonder a tiny bit whether that might be something worth trying.  If you see a two line comment with a link to an online shop in any of the comments on here, before I spot it and delete it, please be aware that this is the standard format for these spammers and is just someone trying to sell us all something. Bah, bad spammers, go away!

I spent yesterday talking to some endocrinologists as I was volunteering at the British Thyroid Association’s annual meeting, manning an information stand for the British Thyroid Foundation. 

Happy smiling volunteers on the information table at the BTA Meeting 2011, l-r: Judith Taylor - BTF Editor and Trustee, me - for BTF London Team and Lin Welch - from Thyroid Eye Disease Charitable Trust

They are a friendly bunch, the BTA people and no-one was trying to push anything on me but a couple of them were questioning my treatment to date and they have really got me thinking.

I mentioned in my last post that Professor Graham Williams’ talk at our last London meeting had challenged some of what I thought I knew about thyroid hormones.

I haven’t posted in detail about his talk because with the house move and work stuff I just haven’t had the chance to write it up, yet.

The key thing that he was saying that really got my mind working was that he would NEVER prescribe T3 for hypothyroidism. I am one of those people who takes T3 as well as T4 (click here for more info if you have no idea what T3 or T4 are). The official UK guidelines on treating people state that T3 can only be prescribed by an endocrinologist. I thought that was just because it’s a volatile substance and needs to be managed by a specialist, some GPs apparently were over prescribing it and this can cause bone and heart problems, hence the guidelines.

But Graham’s position, as I understood it, (and he is a world class expert) is that most T3 used by the body is converted in the organs, rather than in the blood stream, and those organs can only use T3 that they have converted themselves, from T4 in the blood, as they only have specific T4 receptors, so having extra T3 in the bloodstream (via meds) is probably not going to have a positive impact on wellbeing.  This despite my experience and belief that it has made a difference for me. 

Plus which, he made a very compelling case for the danger to the skeleton of thyroid hormones being out of kilter. He showed us photographs of healthy bones and bones that are weakened by both hyper and hypo thyroid states.  It wasn’t pretty.

So I said to him, back in October, how would you have treated me then? I was topped up to the max with thyroxine (T4), TSH as low as you’d want it, T4 right at the top of the scale, but I still felt rotten. He said he would have looked for other causes, such as vitamin D deficiency. Well lo and behold, about 8 months after I was started on T3 meds I was also diagnosed with that and lo and behold again, starting Vit D supplements appeared to have as profound an effect on me as the T3, perhaps more!

So now I’m wondering if the Vit D on its own might have sorted me out, with just the thyroxine. But I’m scared to consider coming off the T3 incase my brain goes back to being fuzzy mash it was before I was put on it and I then can’t get a doctor to agree to put me back on it!!

What to do??

Anyway, lots more discussion at the meeting yesterday has got me thinking even more. I will have to post again to share the rest. Sorry this post has got very medical. Let me know if you’ve been in a similar quandary and if you have any insights to share....

Ever hopeful, sending smiles.

Lorraine J