Foggity fog, damn creeping fog.....

I have been quiet on here again, did you notice? I didn't! Ha ha. No really, I didn't notice what was happening to me. I was slowly getting a bit hypothyroid again the last few months. It crept up on me. Slowly like a snake. it wound it's way around me and squeezed and I didn't notice I was fading away.....

This illness is nuts. Seriously. I think I've cracked it then it's like I've fallen through another trap door and there's a whole new set of lessons to be learned, assumptions to be adjusted, new stuff to be taken on board. And I just pick myself up and carry on.

So, to update you all...... Remember I told you I had my meds reduced in September last year? After going gluten free I was feeling so much better. I'd been able to come off T3 meds and was taking thyroxine only and feeling good and then became concerned I was actually becoming over active so was actually able to reduce the thyroxine dose slightly. And I was SO PLEASED!! It was like, hurrah, hallelujah I am on the mend. I have cracked this thing.

Well I carried on feeling pretty good for a few months. Over Christmas I abandoned my gluten free diet and I felt a bit rubbish again but I was relaxed about that. I just though, hey ho, festive season is here, I shall eat what I like and put on a couple of pounds and then go back on the straight and narrow afterwards and it will be fine.

cakes and mulled wine at Christmas

Then after Christmas we had a death in the family and I had to go overseas for the funeral and obviously while I was there I just ate whatever came my way because I wasn't going to be fussing about my diet when my family were grieving. And we all got into comfort eating a bit. Why not, right? Hard times call for desperate measures. Cake and chocolate is good medicine sometimes.

I got home towards the end of Jan and I just put the fact that I felt brainfoggy and tired down to the poor diet over a few weeks and I assumed it would sort itself out as I got back on track with eating well again.

It was mid March before I realised that something was wrong. I had been tired for weeks. It was getting worse not better. I was becoming forgetful and a bit clumsy. I would be walking up the hill to our house and feel like gravity was pulling me back down it. Ooh, err, better get my thyroid checked.

I'd had it checked before my trip abroad. It, (my TSH, I won't bore you with my other numbers), was 1.7. Up from 0.9 the previous September. Up from the very suppressed 0.01 or thereabouts it had been for the previous 18 months. I thought 1.7 was a pretty good number. If I felt good at 1.7 then  hurrah. My endocrinologist reckons being between 1 and 2 is probably optimal and that makes sense to me. I'd been too suppressed when I was taking T3 and it looked like it was slowly adjusting to a more sensible level.

But in March it had jumped to 3.4. And I felt awful. So now my dose has been ever so slightly increased again. And I am slowly starting to feel better. Phewwew.  Hopefully it won't take long before I am properly back on track.

Lessons learned:

1. Meds adjustments can take a long time to reveal their full effect on the body. That's why it makes sense not to make lots of changes in a short space of time. We  need time to adjust. 
2. Small adjustments can make a big difference. I was taking alternate doses of 100 and 125 micrograms back in September and we dropped down to 100mcg every day. That was, in hindsight too big a drop for me. My endocrinologist has now suggested I take 100mcg 5 days a week and 125 at the weekend. I am hearing more and more about people on very finely balanced doses. We really need thyroxine to be available in smaller doses.  (this is something the BTF is talking to drug companies about and can hopefully influence) 
3. I need to listen to my body more and take action more quickly if I think I might be going hypo. My husband actually said to me in January he thought I might be getting ill again, but I poo pooed  him. I was so focussed on a positive view of the situation "I'm fine, I'm fine, I know what's going on here, I just need to eat less cake/ get over this lingering virus"  (oh fool me, there probably never was a virus, hypothyroidism was creeping up on me again). So as well as listening to my body more I also need to listen to my nearest and dearest who knows me so well and is so sensitive to what's going on with me. I hate going to the doctor because I don't want to be seen as a sickly person. But I am a sickly person and I need to pay attention and go for help when it's neccessary as help is at hand and I am going to be fine now. I know it. :) 

Hey ho, that's what's been going on with me. What's been happening in your world? Send me some #thyroidlife love please. I feel like I need it! 

#Hope :) 

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