I’ve been on Zoladex for 10 months and since about a month of being on it I started to get a weak weird feeling in my arms. It feels like I have no strength in them, like a weak and heavy, feeling and kind of like I’m shaking when I’m not. It’s really bad in my arms especially when I’m doing something like washing my hair or peeling vegetables. Along with extreme body fatigue and basically no energy, it’s making me think I should stop the zoladex because these symptoms are making me feel anxious, really anxious. Has anyone had anything like this and what did u do about it?
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Amber83
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I had an awful time on it, did nothing for pain, hormones were awful and BP went up.
Not sure if you’re aware but it’s only licensed for six months and you should be referred for a bone scan. Speak to whoever prescribed it. A blood test including bones, hormones, vit D, B12, magnesium, calcium and thyroid would be a good idea as well.
My consultant said I can have it for two years as long as I’m on HRT as the worry is your bones? And the estrogen looks after the bones? I have made her aware of how I’m feeling and she’s hasn’t suggested any tests x
legally you’re supposed to sign to say you know you’re taking it off licence. They may be finding it can be used longer, I don’t think the actual licence has changed for Endo.
Drs seem to rarely suggest anything these days you have to tell them what you want. I’m sure they think it’s cheaper that way and less liability 🤦♀️😂
Keep everything in writing so it can’t be ignored or ‘forgotten about’
I have been on zoladex for the same amount of time. Im not sure if its the side effects of that or something else.
Like you I have extreme fatigue and little energy. I asked GP to check for autoimmune markers in blood and about 6 months later I was diagnosed with 4 autoimmune conditions after seeing a rhumotolgist.
As well as having your vit D, B12 etc checked I would also ask for a full thyroid panel and autoimmune blood test as well as inflammation.
Often with endometriosis you can also have undiagnosed autoimmune conditions. Not all the time but they often can go hand in hand.
Im not an expert its something I found whilst reading on the Nancy Nook website which has a lot of information.
I have thought for a long time do I have some kind of autoimmune condition but worry about asking the doctor as I feel like they will think I’m a hypercondriac. Do u mind telling me what auto immune conditions you have been diagnosed with? X
I have been diagnosed with mixed connective tissue disease, being treated for the Lupus part at the moment. I also have hypothyroidism.
I understand its not easy to have the conversation with the GP. You know your body better than they do. It wasn't easy having the conversation because I always see different GP's and its not consistent. When I mentioned the test the GP did say and why do you think you have it?
I had kept a diary of my symptoms and I just said if it comes back normal then at least its one thing ruled out. 🤷🏽♀️.
Dont suffer in silence. Dont be afraid to ask for what you need. 💜
Hi Amber, I landed on your thread because I was googling to find out if there is any suggestion that Zoladex is linked to autoimmune conditions. I had endometriosis very badly when I was younger, from late teens and right up until menopause. I am 65 now. I now have polymyalgia rheumatica and what you describe sounds quite PMRish. You don't mention your age, but if you are still menstruating, then my guess is that you are under 50ish. PMR is fairly rare (thought not impossible) under the age of 50. Certainly, I have found references in the medical literature to suggest that endometriosis is linked to an increased possibility of getting an autoimmune illness and I have always thought that endometriosis would eventually turn out to be autoimmune in the end, if only they did the research. Though AI conditions are also much more common in women anyway. What prompted me to start looking at Zoladex is that my PMR symptoms started not long after I had Zoladex, and I started to wonder if the PMR was linked to having taken Zoladex. I only managed about 4 months on it, as I found the side effects unbearable and were very similar to the effects of the PMR .
My thoughts are that you should speak to your GP about this, and don't be shy about them thinking you are a hypochondriac. They are not meant to judge. You have a debilitating and painful chronic illness from the endometriosis, which is bound to have a knock on effect on your health, and you are also on meds which may or may not suit you and that needs to be discussed. The GP is responsible for your care and needs to be aware. I would tell them what you have said here and ask if it could be autoimmune or the effects of taking those meds for so long. Normally, they are only prescribed for 6 months in women. You could ask them to do bloods and ask them to look for the inflammatory markers for an autoimmune illness.
One other thing, a small number of people have experienced PMR like symptoms after they had the covid vaccine.
Thank you for your reply. I have had various autoimmune blood tests and the doctor has found nothing. I came off the zoladex after 11 months on it as I couldn’t tolerate all the weird and wonderful side effects. I’ve been left with this feeling of weakness (the only word I can think to explain it) in my arms and legs and keep getting it in my neck now, it’s horrible. Although I have been to the gp and the autoimmune tests came bk negative, they just said I’ve got tremors. I wouldn’t explain it as tremors as I’m not shaking a lot, more the feeling of shaking from the weakness and sometimes visable subtle shaking. It’s also being put down to anxiety which may be true as I’ve had a lot of stressful events happen over the last few years, one being losing my mum. So maybe having endometriosis and stress have messed my health up. I really don’t know anymore, I just give up x
I'm very sorry to read about your probs., I had Zoladex for just two months and had to stop it was so bad for me. That was a few years ago, but recently I've been refered to a Rhuematologist as I've been having weird and not so wonderful probs. - fatigue, loss of swallow reflex, bowel probs. dizziness, weakness and probably other stuff that I'd put down to M.E. which I'm also diagnosed with. Basically I think you should push for an appointment with a rheumatologist, their tests are more in depth than the G.P. ones, I hope. I hope you are coping, good luck. X
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