One month on from Zero.....

[suzieh]

Just to say I'm still feeling great ! No setbacks so far. I've got lots of energy and feel well. No sign of PMR pains returning. Sleeping well. Did start to try a Gluten free diet after a digestive issue, and was feeling great on it. However, Dr told me if I wanted to be tested for Gluten intolerance I had to eat at least one portion of gluten containing food every day for 6 weeks - before the test - or results would not be conclusive. I am doing that currently. Dr is also testing my thyroid levels too as they varied a lot during my PMR years. We need to see if they are stable again. Will post results.

Posting to give hope to others......it is possible to recover and get off the medication.

[Celtic PMRGCAuk volunteer]

Great! Keep up the good work of posting and giving hope to others, Susie.

[suzieh in reply to Celtic]

I will! Positive thinking is so important !

[Rose54]

Hi

Well done

I have underactive thyroid which I now feel at present has caused me more problems then the PMR but since a increase in Levothyroxine from 125 to 150 3 weeks ago a lot of the fatigue has gone and my skin is not so dry .

I only found out recently that Thyroxin should not be taken with food nor should you drink coffee for a while after taking it .And although we are told blood tests for Thyroid function are not fasting you get better results if you fast and take meds after blood test .Its taken me 12 years to find this out .

Sorry if you are all ready aware of this s but I wasn't .

Best Wishes Rose

[suzy1959 in reply to Rose54]

I have been on Thyroxine for 25 years and did not know that I shouldn't take it with food or coffee- I do both! My levels have been steady while on the Pred. for 3 years so far. When is a good time to take it? After food and coffee?? How did you find this out?

[suzieh in reply to suzy1959]

I take my thyroxine when I wake up. Eat about 1 hour later. My dose went down with high pred, then up as I reduced. Now off pred checking to see if thyroid dose has stabilised again

[PMRpro Ambassador in reply to suzy1959]

This study

thyroid.org/patient-thyroid...

says:

"Levothyroxine is the most common therapy for the treatment of hypothyroidism as it is the same as the major thyroid hormone produced by the thyroid gland. The absorption of levothyroxine in the gut is decreased when taking the hormone at the same time as calcium, iron and some foods and other drugs. Because of this, patients are usually instructed to take levothyroxine on an empty stomach 30-60 minutes before food intake to avoid erratic absorption of the hormone. For many patients, this means first thing in the morning before breakfast. This is often difficult for many patients, especially those on multiple medications. This study was performed to see if patients can take their levothyroxine with food in the morning and not have to wait 30-60 minutes. ...

This study shows that the absorption of levothyroxine is indeed decreased when taking the hormone with breakfast. Despite an increase in TSH while taking the hormone with breakfast, the TSH remained within the normal range. Thus, while taking levothyroxine with breakfast could be an alternative regimen for patients who have difficulties taking the hormone on an empty stomach, this regimen is more likely to cause variability in the TSH level. It is still advised that patients with a history of thyroid cancer, those who are pregnant or those who are very sensitive to changes in their TSH level need to likely wait 30–60 minutes prior to taking their levothyroxine."

So, really it probably doesn't matter - providing you feel OK and aren't one of the really sensitive ones. And this study

archinte.jamanetwork.com/ar...

shows that it works just as well taking it at night!

[suzy1959 in reply to PMRpro]

Wow! Thank you so much for the information- I am going to start to take it at bedtime and see how that goes.

[babssara in reply to PMRpro]

Thanks for the really detailed explanation. Now I understand WHY I have to take 30 mins before food. x

[Rose54 in reply to PMRpro]

Thanks for info

It is difficult with all these does and don'ts re meds

but as you say the most important thing is we take them .

Best Wishes Rose

[Rose54 in reply to suzy1959]

Hi

Im glad I am not the only one that did not know ,but it wont hurt us just means taking on a empty stomach it will absorbed better so now I take Levothyroxine to bed with me and take it about 3,00am when I wake up for a wee. Found out looking on line for information .Only was told when diagnosed I had a underactive thyroid only by chance asked GP yesterday to find what sort it was found out it is Hashis

Best Wishes Rose

[babssara in reply to Rose54]

Oh Rose, poor you. 12 years? Incredible!

About 3 or 4 years ago I had my thyroid completely removed (cancer). I now need to take Levothyroxine for life. It did take quite a while to find the correct dosage to stabilise me. At diagnosis, I was given a fact sheet by the consultant which explained everything, from tests, operation, treatment, ongoing care. It said how and when to take medication. So I have been aware right from the start that I must take it before food (at least 30 minutes). I don't think it will harm you, I think it just interferes with the effectiveness (and thereby blood results/symptoms etc( of the med.

Hope this is of help to you.

Babs x

[PMRpro Ambassador]

I had a really itchy rash with PMR that would turn to an open weeping sore if left - I eventually worked out it was due to wheat - not gluten per se, I can eat other gluten-containing grains. I was sent to dermatology for a biopsy of the rash and the doctor I saw was really nasty to me because I hadn't got the rash because I hadn't been eating gluten (this was in the UK when you couldn't avoid wheat without going gluten-free). No-one had said anything about needing to eat a gluten-containing diet for 6-8 weeks and I knew you have to find the indicator in normal skin, not in the rash. I couldn't face the months of itching it would mean so my GP and I discussed it with the local coeliac specialist. He said that , since the only way of managing it is diet, if I had found a diet that managed it for me I might just as well carry on and not worry about a detailed diagnosis given it meant having an endoscopy/colonoscopy which was a bit unpleasant. He told me the only difference with having a coeliac disease diagnosis would be I could have a limited amount of certain gluten-free items on prescription. I had a load of friends who were coeliac (their support group was a great help in finding places you could eat!) and believe me - most of what you get on prescription is disgusting, you don't get the best products! There's so much available these days - but they are VERY calorie dense so it is very easy to put on weight!

Just remember, even if the test isn't positive for gluten-intolerance, you can have a problem with gluten-containing grains that is nothing to do with the gluten - in my case it is something in the wheat starch that causes the trouble as I reacted to gluten-free bread that was made using a specially processed wheat starch. I had coeliac friends who couldn't eat that either.

But so pleased to hear the no-pred is going well - long may it last.

[suzieh in reply to PMRpro]

Thanks for your reply very thought provoking as usual! I am feeling ok eating gluten/wheat once a day so I can't be that sensitive to it. I know I feel better if I avoid it completely! Will have to see what the blood tests indicate!

[Gosingen]

Good to read there is hope in pred reduction. Stay well.

[Lafontainepam1]

I too take this. The directions state you take it on a empty stomach and wait 30 minutes before eating. I have taken it like this for years, no problem.