Thyroid and preds?: Just wondering how many of us... - PMRGCAuk

PMRGCAuk

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Thyroid and preds?

MamaBeagle profile image
42 Replies

Just wondering how many of us have both PMR/GCA and also have underactive thyroids? How do you manage taking preds and thyroxine in the mornings? I'm just starting the second journey - my thyroid joining in the party - well in this case not!

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MamaBeagle profile image
MamaBeagle
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42 Replies
SheffieldJane profile image
SheffieldJane

I have Graves’ disease, treated with radio iodine in the 90s. So I have no thyroid function now. PMR has made me think of it for the first time in years. I always take Pred first thing with yoghurt, then try to find a time around 3 pm when I take nothing else but Thyroxine and have an empty stomach. If I get timing this right I can ( imagine?) get some energy. Later and I can’t sleep.

MamaBeagle profile image
MamaBeagle in reply to SheffieldJane

Thanx Jane - I was under the impression that thryroxine was to be taken first thing in the morning - so this is really helpful.

Rose54 profile image
Rose54

Hi

I have PMR and underactive thyroid

I take Preds at 6,00am or just before and Thyroxine just before leaving for work I leave it as late as I can but normally about 8.00am .

I have tried taking before going to bed but I forget.I have taken like this for last 3 years with no problem 15 years with thyroid illness.

MamaBeagle profile image
MamaBeagle in reply to Rose54

Thanx Rose - I'm hoping nothing else joins the party or there'll be too few hours left to fit the tabs in!!! Helpful info.

Daisychain12 profile image
Daisychain12

Yes it is a tough one. I had thyroid cancer and take my thyroxine on empty stomach at about 6 am. I then take pred and yoghurt at 8. But it’s hard as I cannot do anything routine due to my sleep and health being so all over the place. I think as long as you have the thyroxine on empty stomach it’s ok and wait a while before the pred. Hope so anyway xx

CT-5012 profile image
CT-5012

Me too, take my thyroid meds late afternoon, no problems.

Grants148 profile image
Grants148

I was wondering myself whether to take the thyroxine during the afternoon so l can take the preds earlier in the morning,thanks for your postings on this subject.

MamaBeagle profile image
MamaBeagle in reply to Grants148

Your welcome Grants. Interesting just how many of us touched by both!

PMRpro profile image
PMRproAmbassador

It is perfectly possible to take thyroid meds at night - or the pred.

jamanetwork.com/journals/ja...

May10 profile image
May10

I have PMR and Underactive Thyroid. I take my thyroxine before going to bed. This works for me.

SheffieldJane profile image
SheffieldJane

I worry that my stomach is never truly empty, except first thing when I need the Pred. Don’t laugh, I am not eating continually, but should your stomach be completely empty?

MamaBeagle profile image
MamaBeagle in reply to SheffieldJane

No clue Jane - you might find an answer on the thyroid part of Health Unlocked. I do know that those on natural thyroid take it on an empty stomach. I'm starting with natural thyroid actually. Eating all the time......it just seems like it when trying to time all these meds. And supplements if you take them!!!

MamaBeagle profile image
MamaBeagle in reply to MamaBeagle

Yes Jane, I have had a look on there. Soany similar stories of women particularly not getting appropriate treatment. Beginning to wonder if there is some sort of connection between thyroid and PMR?......

Casia profile image
Casia

I have PMR, hypothyroidism and coeliac. As long as I take the pred with food , the timing doesn’t seem to matter in relation to the thyroxine . I normally take them in the morning - thyroxine before and pred during breakfast. i expect whatever suits you is fine as I don’t think they interfere with each other though others may know more.

Omanain profile image
Omanain

I have had an under active thyroid for years and have always taken my thyroxine first thing on waking as recommended by the British Thyroid Foundation. When I started pred in April this year I decided to take it an hour after my thyroxine. I emailed the BFT just in case and they replied saying that should be OK.

Because I found I needed to take the pred every 24 hours as opposed to once a day I started setting my alarm for 8.30, taking my thyroxine and then taking my pred at 9.30 with my breakfast. So far this hasn't caused me any problems. I am due a blood test for thyroid today so I hope it'd OK. I am very tired of course, but hat is more likely to be PMR and pred than my thyroid.

The next problem was keeping the calcium away from the pred and the Vit K away from the Vit D!!

All the best

MamaBeagle profile image
MamaBeagle in reply to Omanain

It's hard to know what symptoms belong to which condition.....the more I read the more intertwined it all seems...

Lizzery profile image
Lizzery

I was taking thyroxine long before PMR came to join the party. I always take it was a glass of water just before breakfast. I then have breakfast and then take pred and Leflunomide. It is only recently that I’ve read there should be an hours gap after taking thyroxine before breakfast! As I’m coming up to 8 years with PMR and eventually down to 3 1/2 pred I don’t think I’ll change my regime now.

MamaBeagle profile image
MamaBeagle in reply to Lizzery

Hey, if works....as they say!

daworm profile image
daworm in reply to Lizzery

It’s confusing, all the “rules” ..I’ve taken my thyroid meds with food, without food, forgot it for a day, took a double dose on accident...none of it seems to make much of a difference...my readings are always good, according to my doc...

MamaBeagle profile image
MamaBeagle in reply to daworm

Receiving a lot of similar stories! And all sorts of methods, times seem to work! Thanks for replying..good luck!

Reethebeat profile image
Reethebeat

Hi MamBeagle, I take thyroxine as soon as I get up with a swig of aloe vera juice, then have breakfast and take my pred. Seems to work for me , dont fret too much about it. Just go with what agrees with your digestion.

MamaBeagle profile image
MamaBeagle in reply to Reethebeat

I'm also becoming interested in the number of us with both conditions! Thanks for your words of wisdom!

Godrevy1960 profile image
Godrevy1960

I too have been taking thyroxine for over 30 years and have always taken it at breakfast with no problems. I now take my prednisolone with it and then take my calcium/vitamin D at lunch and last thing before bed. At supper time I am taking my amatrptyline. I feel I rattle from morn to night!

I had not read anywhere that thyroxine should be separate from other drugs and certainly my GP hasn’t mentioned anything. Interesting how many of us are on thyroxine !

MamaBeagle profile image
MamaBeagle in reply to Godrevy1960

Exactly, how many indeed? Lots by the sound of things. Thanks for your contribution to what is becoming a very interesting collection of methods!

Kk22 profile image
Kk22

I have no thyroid. I take 150 of Levi daily. I do not take them working 6 hours. I have had plenty of medications drive out my levothyroxine. Prednisone I take intermittent for two three weeks at a time during flare up. I do have issues, hard to tell if it’s prednsione side effects or interaction of the two meds. Never take it with anything, it doesn’t work the same. I have been guilty many of times😝

MamaBeagle profile image
MamaBeagle in reply to Kk22

I know what you mean about confusion. Is it the drugs, which symptoms are connected to which condition....

daworm profile image
daworm

I’m on both, been on Levoxyl for years, currently 50mcg...I take it before bed around 11:00....I take the pred in morning, but I have taken them around the same time, but the problem being take pred with some milk and food and take levoxyl on empty stomach if possible....I wonder how the prednisone affects the thyroid?

MamaBeagle profile image
MamaBeagle in reply to daworm

Or how the PMR affects the thyroid?

MamaBeagle profile image
MamaBeagle in reply to MamaBeagle

Or the thyroid affects the PMR!

lcove profile image
lcove

I have the same issues. I take my thyroid pill the second I wake up. Then once Im all dressed and ready to start the day (usually an hour later), I eat breakfast and take the prednisone. There's no huge rush to take it first thing in the morning.

PaulinaCanada profile image
PaulinaCanada

I take synthroid when I first get up then about an hour later take my pred. down to 5 mg and it is a bit hellish.

PMRpro profile image
PMRproAmbassador in reply to PaulinaCanada

What's hellish?

Remember you aren't heading relentlessly to zero - you are looking for the lowest dose that works as well as the starting dose did. You should never feel worse at the end of a taper as you did at the beginning.

Bubbsyboo profile image
Bubbsyboo

I too have interactive thyroid, had for many years before pmr this year. Take my 150mg tyroxine before breakfast & pred with breakfast & yogurt. Would be interesting to see how many have thyroid & pmr. I also have to take a daily 180mg antihistamine tab after having had severe bouts of urticaria in the past. All these autoimmune diseases?

PMRpro profile image
PMRproAmbassador in reply to Bubbsyboo

They could be - PMR almost certainly is, hypothyroid can be. Urticaria is more a symptom but can be caused by autoimmune disorders - did the higher doses of pred not help?

Bubbsyboo profile image
Bubbsyboo in reply to PMRpro

Help PMRpro, so much appreciate all the helpful info on here, more than any I ever have from gp or rheum. I haven't had a bout of urticaria for some time, last one was way before pmr came along. Dermatologist I saw way back said to stay on the fexofenadine for good.

SheilasPMR profile image
SheilasPMR

I switched to taking my thyroxine at bedtime with no problems.

charlie444 profile image
charlie444

Interesting the so many people have both under active thyroid and pmr

Have been on thyroxin for many years possibly 15 .Am now on preds for last 3 years but no suggestion from any medics that could be any

Connections?

Have raised my preds off my own bat after reading posts about taking more after bad days (from 7 to 10). feeling betterish! Thanks!

MamaBeagle profile image
MamaBeagle in reply to charlie444

I don't know how to say this.....without being disparaging or arrogant ..it may be time constraints pressure of work etc. But I am beginning to doubt that HP's make connections. They seem to think inside boxes, and flow charts and if you don't fit in the box......

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

With you most of the way there MamaBeagle!

My husband and I were horrified at what a medical school lecturer friend told us recently: medics are no long "taught" physiology, they sit round and discuss it. So the awful suspicion I had, that they don't understand the physiology in health means they don't understand it in sickness either, is right. Now I admit we three are all biased as physiologists - but if they have no real idea what it is meant to be - how can they know when it has gone wrong? They are given flow charts to make a diagnosis, they may know how lab tests show things being wrong but they haven't the clinical skills to make a diagnosis without their computer support and numbers. And when you have the cheek to present with something not quite what they think it should be either you aren't ill (we lie all the time of course) or you are "atypical". The number of people who have been told they are atypical with what I would have said was textbook PMR astounds me!

Casia profile image
Casia

I was advised to take thyroxine before breakfast then gave a very good breakfast before taking pred. The rheumy said one shouldn’t affect the other .

Mks9558 profile image
Mks9558

I had my thyroid removed 5 years ago- I take levithyroxine at 3 or 4 am when I get up to use the bathroom- then take prednisone at 7 with a good breakfast. I am thinking about talking to the dr about taking prednisone at night instead of the morning- I always feel better before I take it, everything seems to go downhill afterwards- Headache increases, shakiness etc...

PMRpro profile image
PMRproAmbassador in reply to Mks9558

You wouldn't be the first to find that nightime dosing made all the nasty side effects happen while you are asleep!!! If he has a fit at the idea - tell him there are doctors who suggest it!

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