I have CFS and fibromyalgia and I am on a trial of thyroxine for 3 months.

I have only been taking 25mcg for a month so far, so no noticeable benefit yet except my stools are more frequent, smoother and don't have any undigested food in them anymore! Could that be due to the thyroxine? Seems a bit of a co-incidence otherwise.

Thanks

24 Replies

oldestnewest
  • Constipation is a symptom of hypothyroidism so yes, if nothing else has changed it is the thyroxine.

    When I was first diagnosed I didn't know which symptoms I was having were related to my hypo and was surprised so many things I was dealing with were because of it. I found the Thyroid UK symptom list helpful:

    thyroiduk.org.uk/tuk/about_...

    25mcg is a starting dose for older people and those with heart problems or complications. 50mcg is the regular adult starting dose but what dose a person needs is very individual. The full benefits of thyroxine dose/increase dose happen up to 2 months after starting so you may yet notice more benefits.

    Has your doctor said you can get an increase of medication after 3 months if it's benefiting you?

    Totoro x

  • Thanks for the info. She said she would check my bloods again at 8 weeks but I want to be able to tell her that it has made a difference to something because my TSH is already low and my T4 was 12. So if T4 goes up she will probably want to keep me on this low dose but I know I will be much better on a higher dose. I think she is humouring me actually! I genned up from this site and told her lots of things she didn't know. She said it wouldn't hurt me to try it!

  • .....did you have your FT3 levels checked when you were diagnosed ? Often when these are low your Fibromyalgia will persist in my experience....also D3 levels need to be towards the top of the range and B12. Both these aid absorption and a host of other symptoms are alleviated when they are OPTIMAL. Lots of advice on ....' see more tags ' ...on the right side of this page.

    It's all a slow process.....

  • No, the labs wouldn't do it! They won't do T4 either if your TSH is normal but the GP managed to get them to to do that one and it was 12 so she sgreed to the trial. I will ask again when I have the bloods done again in 4 weeks. Thanks very much for the info

  • When are you due for a follow up test?

    x

  • After 8 weeks so in 4 weeks time. I have been concerned about the undigested food for some time. I am seeing a nutritionist and I was going to have stool tests done so it is marvellous they have improved.

  • As a fellow ME sufferer, can I just ask who gave you the 3 month trial? Was it your GP or an ME specialist? Was it done on 'normal range' bloods? I've been trying to get a 3 month trial, and have had no success with my GP at all.

  • It was my GP because my sister was diagnosed with under active thyroid recently after developing a lot of the sympyoms I have. Her GP said TSH was not reliable on its own and T4 must be looked at. I had never had T4 tested only TSH. I told the GP this and she agreed to ask the labs for the test. My TSH was always normal - around 2, but my T4 came back as 12. I told her what I had read on this site, about the link between ME, fibromyalgia and under active thyroid. If left untreated you can develop heart disease and other auto-immune diseases and my father had heart disease and Parkinsons, so my sister and I think he probably had what we have got now!! Hope this helps you

  • Thanks so much for the info. You sound like you have a great GP. Mine won't budge - even though my mum has 9 close relatives with hypothyroidism!

  • What were your results? Did you mention the close relatives because it does run in families

    The GP isen't that great but she didn't have a clue what I was talking about but because I knew what I was talking about she decided to give me a trial to shut me up! I think she is humouring me because she sadi it won't hurt you to try it for 3 months! She is still going to decide on the blood tests in 8 weeks and if that hasn't changed she will probably say those levels are right for me!!

  • Hi there I am exactly the same am just 1month into 25mg trial .prescribed for 3 months but have blood test at 7 weeks in to see what happening. I noticed the same as you within the first few days so can only assume its the levo or something in the fillers doing that trick!

  • Great! Thanks for replying. It is useful to know that it is the Levo. I have been worrying about the undigested food for some time and I have been going to a nutritionist. I was going to have stool tests to see if it revealed anything that we could work on, but it's really good news that an improvement has been made already. I am having blood tests at 8 weeks

  • Hi

    I also have been diagnosed with CFS and Fibromyalgia. I've been on Thyroxine for 3/4 years, 50mcg. After an initial difference my symptoms kept getting worse but I was never given an increase. However, under an endo I now get T3(Liothyronine), which has made much more difference but I'm fighting for an increase in that now.

    Just thought I'd say incase you get to a point where the Thyroxine isn't working any longer.

    Good luck with it :)

  • Thanks very much, it is useful to know that. How long were you on the thyroxine for?

    I hope you get the increase in T3 :-)

  • Hi

    I was on Thyroxine(T4) for 3/4 years. My endo thought there might be reverse T3 problem, which would mean I'm not getting enough T3 from the T4. That could be why Thyroxine hasn't worked for me or there could be other reason too.

    Thank you :)

  • I have noticed after an increase from 100 to 125 that my 'IBS' (Doctor told me that's what it is) has almost gone, onny VERY occasional constipation/diarrhoea cycle if I eat onions!

    Also pain in arms and shoulders almost gone, this is after 3 months. Yes, it is likely to be the thyroxine. Great news.

  • Thanks for your reply. I know I have got a long way to go yet but it's good to know there has been an improvement already. Good luck

  • I am glad your GP has given you a trial of levothyroxine but 25mcg is such a small amount it may not give you the relief you need. Many GP's will only prescribe due to the TSH and not clinical symptoms so you were lucky.

    It would been better if he could have raised it after 4 weeks to 50 and then after 6 weeks to 75mcg.

    This is a link re fibromyalgia and there are other topics at the top of the page which may interest you.

    web.archive.org/web/2010122...

    web.archive.org/web/2011041...

    In order to get well you have to have optimum medication to resolve your clinical symptoms which wont be achieved with a low dose.

  • Thank you for the info. I have learnt a lot from the site and I have taken it all to my GP! She doesn't know anything about it but she has gone along with it as I had genned up on it and I told her to look at the site. She is going to test again after 8 weeks. I have had TSH tests for 15 years and they have been around 2. I only found out recently about the other tests because my sister was diagnosed with under active thyroid and her GP said you had to have the T4 as well as TSH. I told my GP this and she asked the lab to do it but they wouldn't do T3 because my TSH was normal. My T4 was 12 so the GP agreed to a trial.

    I realise about the low dose but she will hopefully give me a higher dose after the next blood tests.

  • I never thought I would have to learn about a disease which, in theory, seems easy to treat but in practice you have to learn enough to get better. It is a great pity nowadays they don't know about clinical symptoms.

    I think it is awful people have been ill for as much as 20 years and some housebound. Thank goodness for the internet.

  • Absolutely, and for this site. I had a bad relapse 5 years ago and had to give up my teaching job. I got myself up and running again in 12 moinths, started a new job and all was going well when one day I just couldn't get out of bed. It was like someone pulled the plug out! I was housebound for a few months and couldn't walk very far so it was the worst I have ever been. The fibromyalgia symptoms started with this relapse. That was 3 years ago but I have very slowly come back up again and now I am better than I have been for years. The underactive thyroid in my opinion explains a lot about my symptoms over the years and it makes sense. I have two sisters - one with CFS and fibromyalgia, the other one with underactive thyroid only recently diagnosed but with a very good GP! My father had heart disease and Parkinsons and a load of odd symptoms that he was always moaning about but GP's thought he was just moaning because he was old!

    Thanks for your message

  • Hi,

    Have you looked at Dr Lowe's Book on Fibromyalgia/CFS. He says that a lot of these patients needed adrenal support as well as T4/T3 or natural dessicated thyroid and in some cases just T3 to feel better again. I myself was diagnosed with CFS over 10 years ago and to be well I do need to have adrenal support and take Erfa which is a natural dessicated thyroid. I also found the B12 sub-lingual helped with the uptake of the thyroid hormones as I was had many symptoms of deficiency of B12 9 now all gone :))

    hope you start tot feel better soon. x

  • Thanks for the message. I have looked at Dr Lowe's book but I will have another read about adrenals. What do you take for adrenal support and where did you get the Erfa? Was that something you found for yourself? I have had two relapses over the past 5 years and I get myself up and running again, as I am now, and then I have a relapse with no warning, like someone pulled the plug out! Last time, three years ago, I was house bound for a few months. I am now working again, very part-time, having paced myself over the past 3 years and I don't want to lose it all again. I am pretty good really at the moment, but I have a lot of pain and stiffness which is helped by exercise but I have to be really careful because of over doing it!

    I am hoping the under-active thyroid could be the key.

    Thanks x

  • I was treated with levothyroxine after finally being formerly diagnosed with an under active thyroid by my GP. it helped but not loads so eventually i went onto natural dessicated thyroid of which I have found Erfa is best for me. I do get it on NHS prescription now but did have to pay for it myself for a couple of years....lol. For my adrenals I use the circadian method prescribe in Paul Robinson's book -which means that I take some of my Erfa early in the morning -requires an alarm clock to wake you up...lol). before using this method I took Nutri Adrenal as advised by a private doctor. I also take a high dose b12 and vit b complex tablets. i found i was vit D deficient so have to daily support myself with vit D supplements. (You can get a blood test from your GP for vit D levels). Low vit D causes fatigue, poor restorative sleep, aches and pains, muscle loss...amongst many other symptoms -all of which seem to mirror CFS/ME -so it is definitely worth checking out further if you haven't already...

    You're welcome to email me if you want.

You may also like...