Thursday, 30 August 2012

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

11 comments:

  1. I just wanted to say thankyou so much for this blog. I have just been diagnosed with an Underactive thyroid and have been terrified and upset by all the horror stories online particularly in relation to thyroxine. I just hope that if I too find difficulties in my treatment I can be as positive as you. Fx

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    1. Thank you so much for letting me know you've found the blog useful. It really means the world.

      If you've just been diagnosed hopefully you will find you are feeling much better soon, that's most people's experience.

      If it turns out that you don't respond well to treatment then it does get more tricky, but most of us get there in the end. I hope the hints and tips here will prove useful if you find yourself in that situation.

      I am always wary of getting caught up in horror story dialogues that are inherently negative, they don't tend to be very helpful. There is a lot online sadly that fits into that category. Steer clear is my advice!

      Sending you warm wishes for vibrant health. :)

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  2. Hi, My daughter was born without a thyroid gland and although doing great, she is two now, I am scared to look into what the future may hold for her. Do you know anyone that blogs with congenitial thyroidism or kids that have that diagnoses.

    I look forward to keeping up to date with your journey.

    http://motherhoodormadness.blogspot.co.uk/2012/09/my-daughter-my-miracle-story-about.html

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    1. Hi Lisa, I am happy to be able to say that the one person I know born with congenital hypothyroidism is now an adult and a mum herself and doing extremely well. Danielle shared her story with me in full recently and I have been meaning to post it on here with her permission. I'll do that today and I hope it will make you feel a lot more optimistic when you read it.

      I believe BTF also has a kids section on their website, and old newsletters have a children's section that used to be edited by a child, I'm not sure of the latest status on that. They also have two dedicated telephone support contacts for issues to do with children and thyroid disorders, who's details are also listed on the support section of the website, so you might want to contact one or both of them and find out more about what specifically relevant support is available.

      I look forward to reading your blog too, I just got back from holiday so sorry it's taken me till now to respond to your comment.

      x

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    2. I wish I could Hug you, thank you so much

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    3. I feel hugged and return a hug back. so glad Danielle's story has helped reassure you. I feel sure Issy will have a bright future ahead and she is lucky to have such a caring mummy looking out for her. xx

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  3. I was researching Thyroid blogs for a blog post I was writing and came across your blog. This was a good article and helpful. I was typing an introduction to a testimonial a friend of mine wrote up for me. She has been able to control her thyroid issues with diet and natural medicine. I thought you might be interested in the article.

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    1. Hi Cara, thanks for commenting and I'm glad you liked this post. Of course I would be interested to hear your friend's story and hope she continues to keep well.

      Having said that there are some "natural medicines" out there which I understand can cause long term problems for thyroid patients though they may seem to initially help (iodine supplements for example). It seems to be a bit of a minefield working out what to do for the best sometimes. I'm afraid I'm very wary of alternative health claims but I recognise that we are all individuals and I once met someone who had apparently overcome a thyroid problem with meditation (!) so I know the the world and our bodies sometimes work in mysterious ways.

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  4. Thank you so much for this post! I have just recently begun the fight with hypothyroidism. I have thought about switching to taking my meds at night. I think I can remember better that way too. Although my regular dr. has been wonderful with my issue so far, I have decided that if my bloodwork comes back abnormal again and I still do not feel right I am going to ask to be referred to specialist. And thanks to your post, I think I will stop second guessing my own intuition. Blessings to you. ~Amber

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    1. hi Amber, thanks for commenting, I'm so glad you found the post useful, usually a referral is made if the blood work looks normal but you still feel unwell, that's when it's worth an endocrinologist doing more tests and looking at your case in more detail, unless your doc is at a loss with what to do about any "abnormal" results. that's the UK system anyway and it makes sense to me. If your blood test shows you need more thyroid hormone your GP can prescribe it. Hopefully as you are at an early stage since diagnosis you will be feeling much better really soon. Good luck and wellness vibes to you!!

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