Thursday, 1 December 2011

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


  1. having a chronic illness is challenging, especially when the medical profession don't have a consensus on the best treatment plan!

    You're doing all you can to pro actively manage your health, which includes (and arguable shouldn't) managing the medical professionals that are responsible for your care.

    If the local endocrinologist has to wait a month for the results of blood tests you'll probably be better sticking with your London clinic, although it involves travelling, at least you'll have the vital information to guide your treatment a lot quicker.

    As for the Vit D, many medical professionals & classically trained nutritionists would say taking vitamin supplements can be dangerous, I'd say the possible risk and harm of taking them would be less than having to experience the symptoms of not having sufficient Vit D!

    Be gentle with yourself, and as I am learning too- that means even though I am feeling a lot better, it is wise NOT to do as much as I feel I can, because invariably that results in a set back!

    A case in point is myself today; 2 days ago I was celebrating being able to organise the clothes in my wardrobe- having the energy to stand up and fold clothes was amazing! Today my body feels absolutely AWFUL, in a lot of pain, discomfort and really very groggy.

    We keep going, and keep making progress, even with the ups & downs, because we are winners and there's nothing that will get the better of us- especially not any chronic illnesses!!

    We are winners!! :)

  2. Why doesn't it suprise me that, still, doctors have no real clue on the best treatment methods for thyroid patients (and others with various chronic illnesses). It's sad and scary really.

    I can't believe they said your blood work could take up to a month to come back...that's beyond unbelievable. It's quite astonishing really. Makes me thankful I have it the way I do here, if my GP puts the "urgent" stamp on it (which he usually does - because I'm too impatient) I get them back within 9 hours!! Even without the's barely longer than 36 hours. But a month...that's insane!!

    You're doing so well, being so proactive in your health. It's great to see that your want for wellness is so strong you're doing everything in your power to get there. That alone, will make you well one day!!

    Be kind to yourself Lorraine. As a friend said to me about a year ago (and it's stuck with me ever since) - you may be one tough woman...but you're not superwoman. Be very kind to yourself, listen to your body and wellness won't be too far away.

    As Claire said (Hi Claire!!) We are winners!! :)