Club zero.....but

[Mischevious]

Happy to report that I have been steroid free for three weeks now, many thanks to all who have provided invaluable advice and encouragement. I have having the anticipated difficulties of adjusting to being without prednisolone but I know that they will pass. The problem now, however, is that I have an underactive thyroid. I wonder if this is part of the adjustment process or if it is a separate problem. My GP is not going to do anything for now, he is going to wait for three months and check the position again before deciding if any action is required. Has anyone else experienced this problem? Any advice would be appreciated.

[suzieh]

My thyroid has been under active for about 20 years and I have taken thyroxine for all of this time. I developed PMR about 2 years ago and was prescribed pred. Within a couple of months Blood tests showed I needed to half my thyroxine dose! My dose of thyroxine had been static for years. The pred does obviously affect all body systems so without it things for you may change......

Go back sooner if you notice tiredness, extra hair loss,dry skin, putting on weight- all symptoms of under active thyroid. Better treated sooner than later- hard to lose weight once gained!

[PMRpro Ambassador]

It could be the hypothalamus/pituitary/adrenal system getting back to normal and that could take up to a year. It is usually the adrenals that get a mention here but the thyroid is governed by this too so in fairness your GP may be right.

I do know that one group in the UK specialising in chronic fatigue syndrome - which has many similarities to PMR - also often treat their patients as being hypothyroid even if their blood results are OK and they do much better. I have to admit - I'd love to see that tried in PMR and I know at least one doctor who wonders the same.

[Hidden]

I would ask to be referred to an Endocronologist for an ACTH test.

[daveD]

I also have a underactive thyroid + pmr. tests show thyroid normal. i have had fatigue foggy brain constant from 15mg now on 5mg,I sometimes wonder if blood test always give true reading. I am now on 5mg pred, my hope is to stay on 5mg for a while,i feel this is going to be the hardest step of my journey & I dont want to blow it so to speak. I was just wondering if you have any tips on how you managed the last bit of this long and winding road. just to add well done and all the best.Dave

[Mischevious in reply to daveD]

Hi Dave, I found that the very slow reduction that has been mentioned here several times has worked for me. When I reduced more quickly, as suggested by my rheumy, the symptoms returned. The fatigue and foggy brain have been a problem at times, also taking a long time to get started in the morning. I suppose it has just been a question of being stubborn, being aware of the symptoms and so long as they do not return, gritting my teeth and getting on with life. I also have a very supportive wife, she get up when I do and does everything, lays out my clothes, gets breakfast etc. so that I can concentrate on waking up and leaving for work in a reasonable state. I do not need to work but enjoy what I do, it is not arduous - I am a trainer so I just need to be able to stand up and talk. I gives me a focus which I feel is important. Hope this helps - best wishes.

[daveD]

Mischevious. IT is good to for us all to hear when some one gets off the pred.IT must be good but hard for you to work. I worked till i was 70 mainly to keep me active.As you say one has to kick ones self up the backside to get going in the morning. I hope to stay at 5mg for a while,then its One small step for Man. down in halve mgs has you say slowly.I hope all goes well for you.Dave