Hello everyone! I am a 37 yo female diagnosed with Graves’ disease July 2021.
I had been taking PTU since then. It came with variety of side effects including hair loss, inflamed liver, skin rash…..however of recent concern is bad knee pain! I have never suffered knee pain before in my life,
I went off PTU a week ago as soon as my knee started hurting.
I want to ask if anyone else had experience knee pain or any of these symptoms? Was this pain short term, and how did you manage it?
Many thanks, I appreciate your advice!
Emily
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Elee16
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Graves is an auto immune disease and something has triggered your immune system to attack your body, and more importantly, when Graves attacks the thyroid the symptoms experienced can be quite alarming.
This is because the thyroid is such a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Your knee pain maybe because of Graves, maybe not, but I've suffered with bouts of back issues from a teenager, and in my 50's diagnosed with Graves Disease.
You may like to read around Graves Disease and the most well rounded of all the websites I found is the Elaine Moore Graves Disease Foundation website-elaine-moore.com .
There is an alternative to PTU - Propylthiouracil - the anti thyroid drug - was Carbimazole suggested as these side effects you experienced sound horrible ?
How is your treatment plan going - do you have regular blood tests for your T3 and T4 and has the PTU been adjusted as your T3 and T4 fell back through the ranges.
What are you considering going forward, as I remember being told I could only stay on the AT drug for around 15 months and then more drastic action would be needed ?
You might like to read the following links as this is the most recent research and I just wish I knew all this back in 2005 when I had had RAI thyroid ablation.
You might like to also look into the Thyroid UK website who are the charity who support this forum and where you can find all the information available on all things thyroid.
Thanks so much! I have been doing bloods 2-3 weeks, the last ones should my t3 and t4 have normalised, which makes me wonder is the knee pain caused by PTU not Graves.
I have been off PTU for 1.5 weeks now, ever since my knees started to hurt, but my knee pain is still gradually getting worse by the day. I was on Carbimozal but had a bad rash. So now I’m not going to be take any medication and hope to God I don’t relapse. I’m taking Thyroid Balance supplement.
I’ll get some bloods this week to see if it’s arteritis related.
Graves Disease is an auto immune disease and something has triggered your immune system to attack your body.
Graves is said to be life threatening it not treated and if your antibodies are still high and still raging you need to take the AT medication - I'm just sorry neither Carbimazole nor PTU seem to suit you.
The only way not to relapse it to take the PTU:
If you were told your last T3 and T4 bloods had normalised I presume that means that they have fallen back into range, but this doesn't necessarily mean that your T3 and T4 are where they need to be for you to feel well.
Can you share your T3 and T4 results and ranges at diagnosis - before AT medication - and can you also give us these latest normalised T3 and T4 result and ranges
hello there, I too have graves(diagnosed 2018).I have been on carbimazole only and am now on carbimazole and Levothyroxine as block and replace.Before I was diagnosed I suffered terrible joint pain and muscle weakness.It was painful to even turn over in bed and I struggled to get up from kneeling.My feet wrists and hands also hurt.It did ease as the carbimazole kicked in but really has not gone away.I read carbimazole can also cause muscle and joint pain so for me I can't really tell which it is.My knees feet and wrists are sore again.I am currently awaiting a thyroidectomy so I suppose I'll find out when I stop carbimazole which it is.Somedays I feel so old compared to how I used to feel but I suppose I am 4 years older and am now also menopausal so it's to be expected.Hope this helps in some way.I just used to take over the counter painkillers if it was really bad(ibuprofen and cocodamol)Before I was diagnosed the doctors tested me for arthritis but it wasn't that.
Good morning to you - and just to add another piece to the Graves jigsaw -
I am now 17 years post RAI thyroid ablation for Graves and I still get bouts of debilitating back and joint pain - for which - mainstream medical have never found an answer and yes, I too resort to OTC painkillers and NSAID.
I've been taking thyroid replacement most of my life and have Hashimoto's. Neither of these was/is the cause of my knee pain. For a few months, both of my knees were giving me enormous pain so that I could hardly walk. I went to physical therapy for several months which improved my mobility but did not take away the pain entirely. After the therapy finished and I continued with exercises, the pain got so bad I had to go to the emergency room and they said there was nothing in the x-ray showing a cause. They suggested painkillers. That worked but didn't address the cause.
Finally, I went to visit a friend in Hawaii who was a retired bodyworker. She told me the problem I was having was not the knee itself but the Tensor fasciae latae. It is a muscle that runs along the outer upper thigh. She treated me and within days I was pain-free and the pain in the knee has not returned. That's three and half years now. What she did was have me lie down on my side and she took her forearm and pressed very hard along the muscle until I could hardly take the pain. She said that there are fibers covering the muscle that get bunched up like saranwrap and block the nerve impulses and blood flow from reaching the knee. She said the pain in the knee is remote and not related to the knee itself. It is caused by the connection with the thigh problem. Maybe from standing, sitting, and/or walking wrong for years.
Another time, long ago when I was your age, I also had serious pain in one knee and could not sleep at night or walk normally. I was lying there on my back one night and I could feel a subtle line of pain going from my knee up to my abdomen. I pressed on the pain I was led to in my abdomen and the pain went away. Perhaps I had a tense spot in my intestines and the pressure I placed on it with my fingers released it and the pain connected with the knee was resolved - instantly!
That is my experience, and you may not be suffering the same things. But there are reasons and causes we each need to explore. Good luck with finding the cause.
Thanks for your reply! I am glad you found a solution, you have been pain free since. That’s very interesting that it wasn’t actually due to caused by thyroid or medication?
I will def explore if it is the Tensor fasciae latae.
I feel my left knee cap area has just lost strength and muscle, and sudden sharp pain. Is that what you experienced?
Yes, I experienced sudden sharp pains but didn't focus on the muscle. My knees were weak of course and I could hardly walk. That's why I went to a PT. One PT told me I would have to have a knee replacement eventually, without even looking at an x-ray. My friend in Hawaii told me there are so many people getting unnecessary knee replacements, due to the ignorance of some PTs and other doctors.
I think I was exactly your age when I massaged my abdomen and the pain in my knee immediately stopped after constant pain for a few months. Can't hurt trying that, and even taking a rolling pin and having someone, gently at first, roll up and down the length of the outer thigh. You never know, it might help. I use a handheld roller from time to time on the leg my friend did not work on and it does relieve some of the pain I have once in a while.
It's a good idea to stand, sit, and walk correctly as I mentioned before. Yoga seems to have instructions for placing the feet properly, even when you are washing the dishes.
Strongly massaging the Tensor fasciae latae breaks up the build-up of crunched fibers that inhibit the flow of blood and nerve impulses to the knees. My friend took her forearm and went up and down several times to break up the blockage. Then she showed me exercises to do to keep my knees and legs strong. Mostly stretches of the thigh and calf muscles.
I think this is gold, my friend who is like your hawaian friend got rid of my sciatica pain doing this two weeks ago which was linked to pain on my right knee and top of right feet. Now ingot pain on my left knee and top of left feet. I am going to see her again! 👌
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Interesting medical article on multiple auto immune diseases
Why is Hashimoto's not on my physio's list of auto-immune disorders? 
Hypothyroid Knee Pain 
Not hashimotos but auto immune thyrioditis.. 
Auto-Immune Disease
