PMR and Thyroid Problems

Hi CathyG,

I have had an underactive thyroid since February 2010, and been on increasing doses of levothyroxine,( now on 125mg) ever since. Last week my blood test showed normal for the first time since then. I must say I've had no symptoms and it was only picked up at a routine blood test. I was diagnosed with PMR last October, and was put on 15 mg prednisolone, and am now reducing (on 12mg at the moment) Don't know where the thyroid problem came from, it's supposed to run in families, but there's no-one in my family had a problem with it!!

I wish you all the best.

Cheers,

Molly.

hi Molly,

Many thanks for your reply. It made me feel less alone!

No-one else with thyroid problems in my family either. I was taking 125mg a day of thyroxine for about 20 years with no problems. I am now down to 75mg but still have palpitations most of the time and am very shaky.

I saw a different GP (you never see the same one twice and they all have different opinions) and he thought it might be due to the pred and wanted me to reduce from 10 to 7.5mg. I refused as I have read a lot of comment about reducing below 10mg on this site. We settled on 9mg but he is going to want to cut it more soon.

I am sure he doesn't think I have PMR as my ESR is very low at 3, but I had all the clinical symptoms which have responded to the pred. Not sure if I am coming or going!

Best wishes,

CathyG

Cathy - if your PMR symptoms are OK on the 9mg after a couple of weeks you could try another 1mg reduction and that takes you very close to your GP's desire. It's not that you can't reduce below 10mg but it starts to get more difficult and small decrements are called for - certainly dropping 2.5mg at that stage would really be pushing it if you did it overnight!

My ESR was 4 when I had full-blown, can't do anything PMR and it took them 5 years to accept that it's the clinical picture that matters not the lab values! If your thyroid problem is an autoimmune one then you were at risk of another autoimmune problem appearing. I suppose your GP is sceptical about the PMR as one thing that has to be ruled out in PMR is thyroid problems as the symptoms may be similar. However - the test is the challenge with steroids: if the symptoms respond quickly to 15mg pred it was almost certainly PMR. You could get the guidelines off the Northeast pmr-gca uk support aite and look and show him! I'm all for educating the doctors when they are too lazy to do it for themselves. :lol: :roll:

good luck,

EileenH

Eileen, I think you ought to publish your posts and distribute to some of the doctors who seem to be in denial if patients miss out on a couple of markers. We seem to hear the same story so often from new \"members\"

I didn't know the word decrements before but, of course, its'obvious when you think about it. Can't be an INcrement if it's getting less, can it?. You learn a lot on here and it's not all about illness. Thank you!

Hi Cathy G and Molly,

I guess there are a few of us that have thyroid problems besides this PMR. My thyroid went wacko - hypo- when I was 18, after the birth of my first child, (I have five children) and now I'm almost 86 and have been on some form of thyroxine ever since. Actually, first, I was put on iodine. I tried going off of thyroid med a couple of times and got into trouble with my heart acting up, so it it one med I have to take besides my prenisone and a blood pressure pill and calcium, etc.

I've had palpitations a few times, but seem to get over them by lying down for a few minutes. I've never had the shakes, though, as you describe, Cathy. One time a Dr. had me wear a harness for 24 hrs. to monitor my heart, but never found anything of consequence. My heart rate has always been a little high, which isn't great, I understand, ever since I had a very scary episode with penicillin. Right now I'm taking 75 mcg of Levothyroxine one day and 50 mcg the next, etc. I have a fasting thyroid test taken about every six months.

I was diagnosed with PMR 18 months ago. Started out on 15MG prednisone and now am down to 3 MG each day and feel almost like my old self with a few aches and tiredness at times, but nothing to keep me down.

This is a great forum to get in touch with others who are experiencing some of the same problems that we are dealing with. I 'm hoping and believing that we can all help each other with the telling of our problems and some of our remedies and a great deal of empathy!

Eleanor (AKA Tinker)

Hi Tinker - great to hear you're doing so well!

Keep in touch, Eileen

Hello Tinker, I am 87 and Have had PMR since July 2010. Was put on 20mg Prednisolone a day. Then 10mg for a little time, and from then, I am trying to decrease the dose. I am now on 7mg one day 6mg next day, and so on. (Suggested by my doctor) Then I am supposed to go on 6mg per day until I feel I can drop to 5mg. So, I then have to take 6/5/6/5 and so on until I can drop to 5, which I then will take for a few days until I feel I can drop to 5/4/5/4 and so on. It is an easy way to reduce, but is it a good one ? Some help please !. Granny Moss

Hello Tinker

How lovely to hear from you again and to read that you have been reducing successfully - keep it up, and do hope you're still enjoying days on the golf course!

MrsO

Thank you Eileen and Mrs. O for your welcome back statements! I've been reading all the posts sor the many months now and finally decided I'd put my two cents worth in, again. A couple of times I would write long paragraphs only to be told that there was someone else by that name - so was unable to get on. Instead of pursuing the problem, I just quit trying and just read everyone else's posts. Also, I had 3 close friends leave this plane of existence this last year, which left me in, what we use to call a \"blue funk\". I'm starting to climb back out of it now and feeling life is still worth living.

Yes, I'm having good luck in reducing my Prednisone dosage. Have been doing it very slowly and streadily. I think my Dr. would like me to come down faster, but as you both have written, your own body will more or less tell you when will be the right time. The last few 1/2mg reductions, I have gone about 45 days in between. I've been very fortunate not to have to increase the dose. If I have a day or two of aches and extreme fatigue, I just excuse from the activities going on around me and seem to be able to come theough them OK. Yes, my hands, legs, shoulders and back still ache at times - but nothing like those first few days and months.

I really have come to admire you both and some of the other \"regulars\" for your thoughtful and helpful posts and thank you very much for them.

Mariarita, from what you have written, I think that you and I must be a lot alike (besides probably being the oldest ones on this forum) in that we've lived a very busy life until this PMR hit us and can't believe that something, that's not that evident to others, can slow us down this much.

I also have alopecia totalis (total hair loss) which came on me about 19 years ago and a small carcinoid tumor in my left lung, which CT scans found over 2 1/2 years ago. After specialists not helping at all conderning the hair loss, I finally gave up and started wearing wigs. It seems as if the Drs. don't want to remove the tumor because of my age. The PMR came along and seemed to knock th tumor right off my worry screen.

In the meantime I live a very normal life. I'm a widow ( for 8 years). I keep a 3 bedroom home for myself and an unmarried son (who works) and do all the housework, shopping, etc. I enjoy playing 18 holes of golf every week and also do family tracing (Genealogy). Have done it for 25 years.

I'll give you my (sort of) routine and diet. Not because I believe that it is something that you should adhere to - but because I believe that we all have our own ways of solving our problems.

First off - I haven't ever taken any coated prednisone pills. I always take them in the morning and take them after eating half of my breakfast - then I finish my breakfast. I also eat a cup of low-fat, fruit on the bottom yogurt after my sandwich at lunch. I like bread and eat my share of muffins sandwiches, etc. We usually have an entre of beef, pork, chicken and sometimes fish every dinner. Unlike some of the others here on the forum, I don't eat oily fishy fish. I just can't eat it. Tuna for me is white albacore packed in water. I usually eat a handful of unsalted almonds during the day and in the evening I enoy a glass of ree (Merlot) wine.

I'm just telling you all of this because I believe there is no perfect way to beat this disease and everyone has their own way of getting to the goal of being pain free! (Looking back over this paragraph--we don't have all that meat every night= just one a night!!!)

I better stop for now or they'll be kicking me off for being so lengthy.

Eleanor (AKA Tinker)

Hello Thinker! Yes, I have had a very busy life. Born in Trieste, married in Udine had my honeymoon in Venice....1946 !....My husband was in the 8th Army, and came up from North Africa to find me !......Brought me to London, where I was Dress designing Ballgowns and Wedding Gowns. Retired and now paint watercolours etc. My terrible morning when I woke up with the terrible pains in my arms/shoulders/hand....and when the pain was so unberable, I REALLY wanted to die. Now, with Preds, I am almost , apart from a little niggle here and there that I can ignore, I am able to do some birthdays cards or small items of crafts. I thought I would knit a scarf.....I managed 2 rows....had to give up, the pain was getting so bad !......I am fine, if I do NOTHING !.......My husband is very helpful, in making coffee and tea...but I have to cook the evening meal.

I can walk now without a stick to help me with my giddiness I had, but will use the stick when getting on a bus....that way I get a seat !...Anyhow, I am old enough to be offered one, without the need of a walking stick !....I stopped my husband driving, when he started hitting the kerbs...I told him, you can drive but do not espect me to share your car......I am now on a reduction programm for the Preds. At present, it will be 7/6/7/6 until I feel confident to go for 6mg a day for at least 2 weeks.....See how it goes....Tomorrow, Monday, I am going to the University Hospital for a full blood check. Several tubes to be filled. For Kidneys, liver, tyroid etc. When I get the results, I will post. My husband , two days ago, had the results of his blood checks. The doctor told him there was no need for any of his (thyroid)and other tablets values to be changed....(he is also Coeliac and had a stroke a few years back) He came home and started to worry, that the doctors do not say how ill he is, because he is too old for them to bother !.......And I am supposed to be kept free of stress with my PMR ! ....Men ! ! ! .......

I am so glad I can do a few things,and I am amazed at some of the ladies here, how active they are ! Skiing, swimming, aerobics....amazing ! Mon Dieu !....they are so so much younger than me ! !.....Bless them for looking after us ! At soon. Granny Moss

I too have had a thyroid problem for a few years. Diagnosed with pmr a couple of months ago. I must admit I have not noticed any difference with the thyroid, but I don't think I have had a blood test for that yet. I must ask next time at the Doctors. I have had an experience this week that I am posting on a new thread because I want to warn others about medication. Hope you get the thyroid problem sorted, it really does take some while getting your head around this. Best wishes pmr jean

Hi All,

I often read the forum but can't raise the energy to type anything. I guess this is pretty typical. Many thanks to all of you who do add regular posts, it really helps me to keep going.

I tried the reduction to 9mg pred for a week, but by then the pains were all coming back and I was still shaking. When I went back to the Doc he at least believed it was PMR and put the pred back up to 10mg. After a few days the pains mostly settled down again. I am still shaky, tired and struggling to cope and am now waiting to see the rheumatologist and the endocrinologist.

I have put in a request for early retirement from work (I'm 55) but will have to get through the next 6months as I can't afford to go any earlier. Did anyone get retirement on grounds of ill health with this? I am a primary teacher with responsibility for special needs so I feel I can't let anyone down by being off ill and no one else does my job when I am not there so it is just more difficult when I go back. Fortunately a lot of it is office based now, but I really suffer from the brain fog, especially in the mornings, and don't feel I am doing my best job any more.

Like Tinker, my Thyroid failed after the second child and the doctors all thought the third one was a miracle. They kept bringing students in to ask them why it was so unusual. I didn't have another as I didn't want anything else to fail!

I know other people who have experienced thyroid problems around the menopause, but I don't know why mine has sprung back to life with PMR. I must go back for another blood test to see if it is still too high. Tinker is right, levothyroxine does come in micrograms (mcg) and I have already reduced from 125 to 75 and don't want to go too low (symptoms of that are cold, tired, slow and achey). I think I will stick with headaches, backache, brain fog, shaking, heart racing and can't sleep. Fortunately I am also taking anti depressants and there is always this site when they aren't enough!

Many thanks to you all,

CathyG

Hello Cathy

Sorry to hear you are feeling so unwell I was 54 when my PMR started and I really dont think I could have done my job with PMR I always worked to deadlines huge pressure all the time but I had taken early retirement at 50 as they moved my job further than I wished to travel

Hopefully you will get to a level of steroid which will reduce your inflamation and you will stabilise and then you will be able to start reducing Ive just checked my records back and when I had a flare up 12 months ago I had to go back up from 4mg to 15mg in a month to control the pain but even then I felt lifeless and stiff and I had to stay at that doseage for 6 weeks before I could start reducing again but by going slowly I am down to 3.5 and just stablising for a few weeks after a sore throat cough etc before I start my slow reduction now of 0.5mg every 8 weeks !!

As for the thyroid I dont know a lot about but isnt it hormonal ? Someone I worked with had hormone treatment for infertility and her thyroid ended up with the highest reading the Hospital they had ever seen and she nearly died Im sure steroids must affect the hormones as several of us have night sweats ( me included ) and I am way past my menopause !!

Caused a real laugh today in Holland and Barrett Saw a herb my horse ( v .old 33) takes to balance her hormones and she is running around like a foal !! and I asked the lady in H&B what it was used for in humans and she said hormone imbalance but no one on the pill must take it as it could prevent it working I was telling the lady how well my horse was doing and it had taken 20 years of her but other customers gathered round not having heard the horse bit !!!! and they all wanted to to take it ( shows how happy we are to try anything !!) Gave everyone a laugh when they found out I was talking about a horse !!

Hope you feel better soon and keep in touch

Best wishes

Mrs G