Posted , 9 users are following.
does anyone else have both? It's taken me a year of persuading docs my symptoms were more than a thyroid flare and have finally been diagnosed with PMR.
I know both are auto immune in my case. Trying to work out how to separate the symptoms. Any help greatly appreciated.
0 likes, 30 replies
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amkoffee Sladey
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Sladey amkoffee
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Hi amkoffre
Really appreciate this. Have only just started prednisone and the magic ain't happening yet so will make sure I get my thyroid levels checked next week. Kind regards
Sladey
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Sorry spelt your name wrong 😀
Daniel1143 Sladey
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Sladey Daniel1143
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Both mine were way out but thyroxine got them back to normal within 3 months
pam7653 Sladey
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In 2011 I was diagnosed with hyperthyroidism, overactive thyroid. My symptoms included mental issues, loss of weight, rapid heart rate and hunger. They sent me through numerous tests for weeks. I was put on medication which subsided my symptoms. I remember complaining of my hands hurting in the morning at this time too. No explanation. My hand issue continued on and off. I spent a year and a half on thyroid meds. Toward the end of the first year my thyroid reversed and I had. hypothyroidism. I spent a few more months on those meds. In 2013, two years later I was fed up. My thyroid numbers were normal. I took myself off of them. I felt something was seriously wrong. I wanted my body meds free, so I could find out what was wrong. The pain after sitting long, my hands, getting out of a car hurt, bad heartburn, it was unbearable. I ended up in ER thinking I was having a heart attack. All tests came back negative. I demanded a rheumatologist and was diagnosed with PMR. I'm into year four and on 5mg. Thyroid is normal.
I've been told that sometimes when you get one autoimmune disease, you will get two.
I'm not sure if I just had a case of thyroiditis or what it was, but to be safe I randomly get it checked.
Anniecurd Sladey
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Yes, I've had Hashimotos for 15 years and the symptoms were different. I had the I inflammation and pain in my joints instead of the muscles. I was extremely tired, but I didn't have the weight gain and depression that a lot of people get. That's why it took a year to diagnose me. I've been on a natural thyroid medication for years and felt great until the PMR struck. I knew it wasn't the Hashi.
julian. Anniecurd
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much the same for me.
Hashi was simply a loss of some mental energy. Lethargic is a good word. Enough to know something not right. Totally resolved with thyroxine.
PMR was screaming pain. The fatigue with pmr/pred is deeper for me and a mixture of mental and physical. Lethargy doesn't even begin to describe it. At its worst its mind numbing, and physically incapacitating, fatigue. The muscular pain and stiffness is fairly distinctive for me, bi-lateral, local to particular muscles. I notice "twinges" when I overdo things. Currently on 5mg/day and stable.
My back pain (aftermath of back op) is unchanged by pred. A squashed nerver that didn't recover, one sided.
I didn't know all that when pmr hit. The carefully chosen GP diagnosed it in about 5 minutes.
adette01750 Anniecurd
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Anniecurd adette01750
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Hi, I'm on a medication called Naturethroid. It's made from pig's thyroids. I think the reason that it works for people who don't tolerate the synthetic hormone is because it has more of what is in the thyroid gland naturally. It is obtained by prescription from the doc.
adette01750 Anniecurd
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artfingers Sladey
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amkoffee artfingers
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Well I did look up that disease and all I can say is oh my gosh how awful it must be for you. I don't know how you can get through a day with it. How long have you had it? I read that it does go away in most cases but I also read that in rare cases it can cause cancer. Yhat's gotta be scary. I am truly sorry that you have this condition and I wish there was something I could do to fix you
amkoffee Sladey
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Let's talk about autoimmune disease. Let me count the ways. I have of course PMR which is the latest thing I was diagnosed with. But in my history I have been diagnosed with asthma, alopecia, hypothyroidism, and I haven't been diagnosed yet but I'm pretty sure I have Sjogren's syndrom
adette01750 amkoffee
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Hi everyone and amkoffee,
yes it's awful with all these diagnosis, I've struggled for 5plus years with the doctors all saying you have 'mild osteoarthritis' in keeping with age but I knew I wasn't that pain intolerant, I could barely move at this point. Then last July when I could barely move, a GP diagnosed PMR and started me on steroids, then I've paid to see other consultants and had second opinions re sjogren's, in the process had ultrasound scan of my thyroid and yes I was right all along, Hashimoto's thyroiditis and sjogren's also confirmed, I thought I was a head case, how could I have all this pain with mills osteo, I could barely move some days.
i wish you well and hope they can give you relief of symptoms. I'm reducing steroids 1mg a week consultant doesn't think it's pmr now as the other things cause pain but I still think the GP was right, and it is pmr as each time I reduce the prednisolone I hurt even more in my original places. But he is not nice when I tell him how I feel and this is chapel Allerton.
Take care amkoffee and each and everyone of you.
Anhaga adette01750
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Entirely possible the pain is due to steroid withdrawal as 1 mg per week, after you've been on steroids for a while, is rather quick, whether or not you actually have PMR. Would you be allowed to slow down that reduction so at least you can avoid some of the withdrawal pains? Does the pain ease after a few days at the new dose?
adette01750 Anhaga
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The consultant hasn't much patience, I keep telling him I have to fit work in too and feel dreadful all the time, I've been doing it really over 10 days, and still feel dreadful but he isn't for changing, just says it's the steroids making me feel ill.
I cant wait till I'm off them and then we will see, I'm already getting much stiffer and feel more pain on a daily basis, yes I do feel better after 8-9 days but still feel stiffer and more pain after each reduction, I'm struggling with doing my hair and repetitive cleaning jobs i.e. Dusting windows, let alone walking upstairs, pulling myself up on the stair spindles again. It's a backwards result with extra withdrawal pain, but have to do it I suppose to see what happens.
EileenH adette01750
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adette01750 EileenH
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I asked him if I'm back at square 1 with pain when I have done as he asked what then? As I'm so frightened of that he just said we would have to re look at things.
That's no help to me really, just playing with things I fear.
EileenH adette01750
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If he won't help - then request a second opinion. You will feel "better" in terms of the withdrawal problems after 10 days - but then he is moving the goal posts again without allowing you a chance to feel well again, However - if you have PMR and pred is helping the symptoms of that - reducing will just allow the PMR in again.
adette01750 EileenH
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I know it seems a catch 22. He is my second opinion, my first opinion also agrees so will have to do what they say, hope they are right I really don't want to start this journey again with prednisolone, as you can imagine.
Thank you for your help. Time and time again you are there for us all.
Anhaga adette01750
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adette01750 Anhaga
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No I don't think so, how do they test for this, is it a blood test?, years ago I thought we did not have the facility for this in the uk, am I wrong?
Anhaga adette01750
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I asked only because Lyme disease has become an issue in North America, and it it tends to be very underdiagnosed, often it presents eventually with symptoms that sound like pmr. But if Lyme is not an issue in your area, and you haven't visited areas where it is, then it would likely be a red herring. It's transmitted by ticks, so people can be bitten when they are in the countryside, or their pets can pick them up from long grass, etc. I know someone who lives in Pennsylvania who had been suffering from an unknown painful ailment for a couple of years and finally it was thought he might have picked up Lyme disease when he was camping or hunting. I think it's treated with antiibiotics.
Anniecurd Anhaga
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I live in Pennsylvania and know lots of people with Lyme, my daughter and brother-in-law both have it. You have to treat it with antibiotics early or it can become very serious and start affecting other organs besides the joints. But blood tests aren't always reliable in diagnosing it.
Anhaga Anniecurd
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If the initial symptoms are missed, how do they determine whether it's Lyme or not? It's here in Nova Scotia now, and apparently even in the city, so people with dogs have to be aware. Scary. There keep being news reports, and all the time we're told doctors miss the diagnosis. Don't doctors pay attention to the news?
adette01750 Anhaga
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I have had bites some really nasty blisters etc over many years, the insects seem to like me worst luck!!!
All have been itchy in nature I think, limes seem to be non itchy in nature.
I have definitely missed out on the antibiotic windows, so I suppose if it is Lymes disease I can't do anything about the situation.
But when I see my consultant will mention this as I've never mentioned this possibility.
Thank you.
Anhaga adette01750
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The tick apparently can cause a kind of bullseye rash, which is useful if seen because it aids in diagnosis. I don't think you'll have missed out on all treatment possibilities, just that it's harder if the disease isn't caught right away. I only mentioned it because you've been having trouble getting a definitive diagnosis, and this is another possibility which isn't top of mind with the doctors. Whatever it turns out to be I really hope "they" find out soon and you get some relief! ?
adette01750 Anhaga
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