Graves and smoking cessation - causes flare up?

Hi. I'm new to this forum. I will try to keep this as short as possible. About six years ago I had real problems with swollen feet and ankles. It had gone on for months and my GP wasn't finding the root of the problem. I'd tried diuretics but they made no difference. I was at the stage where I couldn't get shoes to fit. After trawling the internet I kind of self diagnosed COPD. It was the wrong diagnoses but it led me to decide to stop smoking. I stopped for 3 months but was at the end of my tether and could take it no more and started smoking again. I then began to feel really ill. Regular palpitations, shaking, found it hard work just getting up the stairs without getting out of breath. I noticed that when I did smoke I would shake more, that I wouldn't be able to see properly for about 10 minutes after having a cigarette. I had to walk quite a long way to work and I would get so far and then feel like I was walking on marshmellow, I couldn't feel the ground beneath my feet. I then started to lose weight rapidly despite eating loads. - I lost a stone within a couple of weeks. I then started experiencing gold flashing zig-zag patterns in the corners of my eyes and I was getting really worried. I was finally diagnosed with an overactive thyroid. By this time my ankles and feet were huge. They itched like mad and were so bad that when I was referred to a consultant for thyroid treatment he had photo's taken of my feet and ankles as he had never seen such bad fluid retention associated with Graves disease and wasn't sure if that was the cause. I was given Beta blockers to bring down my heart rate which worked within a week of taking them and also an 18 month course of Carbimazole. The fluid retention vanished within a few weeks. After putting all the weight I had lost back on I decided to go on a diet as I was overweight. I lost 3 1/2 stones and by the time I had finished the 18 month course of medication I was as fit as a fiddle, cycling, slim and happy but still smoking. I have never had a problem with swollen feet ever since.

In January this year I decided to have another attempt at stopping smoking. I have been stopped for just over 3 months. A couple of weeks ago I noticed my feet starting to swell. They're not too bad, although my size 9 (yes 9) shoes which were a little bit on the big side have now become quite tight. My engagement ring which I couldn't wear for years but have worn for the last 3 years since I lost all the weight is starting to get very tight even though I have only put on a few pounds since stopping smoking. This is how it all started last time, and I'm very concerned that the thyroid problems are beginning to flare up again now that I've stopped smoking. Last time the consultant I saw refused to accept that stopping smoking had triggered the problem. There's a lot on the internet to say that smoking seems to mask an underactive thyroid but I can find little to say that stopping smoking triggers a flare up of Graves disease. Does anyone have any thoughts on this? I refuse to start smoking again just to make it all go away so what can I do?

I was also quite alarmed to find on the internet that thyroid problems can lead to heart problems if it goes unchecked. It seems strange that the left side of my body ie my left foot and ankle and my ring finger on my left hand seem to swell up more than the right side. Why does Graves disease cause fluid retention, does anyone know?

Any similar experiences or help and advice would be much appreciated. Thanks for taking the time to read, sorry its so long.

10 Replies

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  • Perhaps what we need to recognise is the codependency issues in ourselves that need addressing. It is common for people to give up smoking, which after all is an addiction, only to move on to another addiction, i.e. food for instance. This in turn will need to be addressed and the underlying issues resolved. These are well known facts if you study the nature of addictions. I have worked in addiction clinical situations and it is noted that most people in recovery from say alcohol addiction will be piling sugars in their tea, which leads us on to sugar and simple carbs which are both addictive substances, affecting the same area of the brain as cocaine for example. Sadly we move from one thing to another until we have addressed the underlying codependency issues. Do not be disheartened though as with some hard work on the self much can be achieved with self-reliance with addictive behaviours fading away.

    Hope this encourages.

  • About ten years ago I decided to stop smoking and joined a gym. Had huge weight loss which I took to be the result of exercise,then the other symptoms of hyperthyroidism began. Took carbimazole for a while until thyroid dipped other way.stopped meds and was fine though started smoking after a while. Stopped smoking in January and hyperthyroidism is back.my son who is a doctor is curious about the link and has urged. me to mention it to my endo at my initial appointment next week.

  • If it's all starting again, as I suspect it may be (need to get bloods done to be sure) then this will be the third time my thyroid has played up and this is my third serious attempt at stopping smoking. The first time I stopped the blood tests showed that I was border line hyper so I was never given any treatment, then I started smoking again so it never developed although the swollen feet never really went away. I have smoked since the age of 18 and the only times I have ever had problems with my thyroid are the times when I have stopped smoking. I am now 51. There must be a connection. If you do mention it and you are offered an explanation please could you let me know on here? It would be interesting to see what they say.

  • I was reading an article about Graves disease and it pointed out that physical changes such as severe dieting and or stopping smoking can put emotional or psychological stress upon people who can go on to develop full blown Graves. As can other emotional or stressful periods within our lives.

    As a rule smoking is a big no no with Graves and can and often does worsen the condition especially with regards to the development of Thyroid Eye Disease where the eye muscles are attacked in the same way the thyroid is by an autoimmune response). Smokers are more likely to get TED with Graves than non smokers.

    As for the swollen feet I must mention pretibial myxodema ( bad spelling I am afraid) which is another problem caused by Graves. It can be a reddening of the shins and a thickening of skin or it can be swelling especially within the lower legs. This sounds like it may be your problem. It may be worth reading up about it in any case.

    There are other issues with Graves as with Hashimoto's which can cause further problems with the heart, liver, spleen, low iron or anaemia, joint pain plus muscle weakness and loss of calcium within the bones. These are just a few.

    I hope this helps.

  • Thanks I will see if I can find the myxodema thing. Now you mention it, it does ring some bells, I think they were wondering if it was that at the time. I had a lot of itchiness around my ankles and my feet and ankles used to go very red. I often used to sleep with them sticking out of the covers as they would get so hot and the joints in my toes wouldn't bend when I first got up in a morning. It's strange how all these things are quickly forgotten once they all clear up, but its all coming back to me now just how bad it was at the time.

    I remember thinking last time round that maybe it was the stress of stopping smoking that triggered the hyperthyroidism but the consultant I was seeing dismissed the idea. He just kept telling me that I needed to stop smoking because of the danger to my eyes but its taken me 5 years to get around to trying again. Hopefully I think I've cracked it this time with the smoking I just hope the thyroid problems aren't starting up again, though my feet are quite swollen tonight.

  • My feet and ankles were very, very swollen at the end of my menstrual cycle until my THS came back. I have Graves too. The swelling stopped as soon as my THS was not suppressed anymore, ie after only a couple of months of Carbimazole which is very unusual for a Gravester - it usuallly takes 12 months for TSH to reappear according to my endo. I'm not a smoker. Has your TSH reappared or is it still suppressed?

  • I don't know. I haven't had a blood test since July 2011 as I have been fine for the last 3 years or so. it is only the last 2 or 3 weeks that I've noticed my feet ankles and hands to be swelling. I was like you, the swelling in my feet and ankles went very quickly once I started on the carbimazole and has never come back until now.

  • I guess you should have a blood test then. Good luck.

  • I know :) this is on my to-do-list. I am supposed to have blood tests either every 6 or 12 months I think but because I've been fine up to now I haven't really bothered.

  • Two things.....thanks for heads up on ankle and foot swelling re Graves; this might provide a clue to me over medicating. Secondly, I can remember jokingly saying to our practice nurse..it's all been down hill since I packed in smoking, to which she replied that it was by no means the first time she had heard that. Dr Skinner's book has a section where he reveals his bewildering observation about a strong link between onset of thyroid illness symptoms and smoking cessation. There is also some later links to this and a drug was produced from nicotinamides (spelling) that, in early trails showed it's effect on reducing inflammatory markers in autoimmune diseases such as Hashi's. I have often thought about picking the habit back up but I guess the thyroid issues would out in the end. Smoking cessation did not lead to me picking up another unhealthy addiction, rather, A whole lifestyle change including food, diet and exercise. It did not stop the march of Hashi's.

    ncbi.nlm.nih.gov/pubmed/226...

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