Unacceptable side effects of Levothyroxine

Hi sim 69520 I am British from York but I am living in Va on the border of Wash.D.C. and I can get any thyroid meds I choose and I have but I still feel ill I also go on the americian forums and a lot are still ill too

but I have met many people that have gone into remission too I have been trying to follow the book

Hashimotos the root cause. I don't know weather this is from unbalanced hormones food or infection but

all I know with me it started towards menopause It seems like I wake up to another new symptom everyday My sister

lives in leeds and has the same thing going on as me and cannot even get to see the endocrinologist but her GP gave her t4 and t3 but she still feels lousy.......Athina

Further to my grand idea of taking t3 instead of the t4 I am intolerant to... seems I am now intolerant/sensitive to t3 as well. I took 10mg t3 Friday morning and 24 hours later my skin was burning and my shoulder joint had began to pain me... now 38 hours since taking the 10mg and my shoulder is extremely painful... reminiscent of the beginning of my physical downfall in 2010... so the idea that t3 may be ok is now out the window for me. so t3 is in fact worse for me than t4. so what to do now? spend my life hypothyroid?

I don't know how I came across this forum but I am pleased I did. I am a Levothyroxine taker and have been on the same dose (125mcg) for more years than I care to remember. I NEVER felt it made any difference to my well-being and I attributed weight gain, hair loss, muscle and joint pains to the disease itself. Recently I have been feeling worse and am being treated for so called "osteoarthritis of the collar bone" which really boils down to an extremely painful shoulder, with injections. On Monday I woke to a painful, stiff, hip, worse than usual painful knees, feet and hands and, at my age, four days of the week spent in pain is absolutely ridiculous. I have tried for a referral to an Endocrinologist but my Dr. poo-pooed that idea. I have tried for more than just an annual blood test and have been told this is not necessary. After reading this forum, I am concerned that my mobility has been affected by this drug and I need to make an appointment with a totally different doctor in the practice and practically bully them into doing something for me. Will keep you informed.

Hi Roaring Girl, why don't you keep a diary of all your ailments for a week and then stop taking the Levo and note all remaining ailments for the next 4 weeks then you can show your Dr and request a blood test and Endo appointment. This is basically what I did, I am having other tests done at the moment but I'm sure within 6 weeks I will need meds for hypothyroidism and this time I will try Armour (or similar) but definitely never taking Levo again as it severely reduced the quality of my life.

Hi sim 69520 what kind of symptoms were you having?I was on levo and thought I was dying but I am on armour now and still having all kind of side affects as I listed in my previous post

Hi Athina where to start with side effects: painful joints (knees, hips, elbows, shoulders), back pain, muscle pain, acne, bleeding gums, hair loss, weight gain, bloated face, hot flushes, nightmares, nausea, headaches, shaky hands, insomnia, sore throat, fatigue, lack of concentration, forgetfulness, constipation. Most of the above are now gone since stopping Levo, I still have problems sleeping and haven't lost any weight on the scales but I look like I've lost 4-5 kg as I'm not as bloated, although I do find if I drink Lager I get very bloated very quickly (this never used to happen).

I'm sorry to hear you are still having a tough time, have any side effects improved for you since switching?

Hi Roaring Girl. I see you have, like I did, increased meds to 125mg because we have more symptoms which we attribute to hypoT, yet all the while we seem to be poisoning ourselves. I spent two years unable to walk and it seems it is all down to thyroid meds. Apart from the osteo, I have had your same symptoms. The other day I trialled T3 only and my shoulder pain returned. I haven't met a doctor, rheumatologist or endocrinologist that recognises the symptoms of intolerance to levothyroxine so be prepared to be blanked. I have had to prove it myself. So the diary is a good idea. My endo and doctors now say just to stay off it and stay hypoT. And that's what I'm doing but I know I can only do that for so long until I cannot stand hypoT symptoms anymore. I wonder if taking too high a dose in the beginning caused an insensitivity and now I am hugely intolerant of the stuff. Unfortunately I am alone now in working this out for myself.

Hi sim 69520 I swear I have all of your symptoms plus many many more the one that really concerns me is the breast pain as my sister has breast cancer now after starting thyroid meds I have seen 6 endos and they are clueless to why I am having these side affects in fact sometimes I think they don't believe me and most of the time they say its not the thyroid meds I hope you will feel better on armour I am taking it now but still the same old side effects with me. I am searching now for a alternative doctor so I will keep posting if I find any solutions.....athina

I still won't increase my dosage as the doctors at the hospital say to 125 I'm staying on 50 the shaking as stopped I still have aching shoulders. But no one will tell me what could happen if I just stopped taking these awful drugs. As it stands this drug is causing more problems than its solving I have told my GP he has a few months to do the tests and tell me what benefits I get from this drug or I'm coming off them myself.

Thanks to jltntl and Sim69520 for your helpful comments. I am grateful. I spent this morning doing some of my own research and reading peer reviewed articles on line on this problem - obviously I do not advise anyone else but I thought if I gathered some published information, I might be able to put across my case to my doctor in a better light! We'll see eh? A couple of things I found interesting were (a) up to 20% of older patients are overtreated on Levothyroxine and (b) if I can persuade my doctor to reduce the dosage and prescribe a small amount of T3, I may see some improvement. I would stress that the two articles I printed off were research from America and Canada, although one of the articles was peer reviewed in the British Medical Journal. The other thing which slightly concerns me is that there is evidence that other medications can interfere with the efficacy of Thyroxine and of course I have, over the years, taken medications for what I thought were "arthritic" symptoms and blood pressure medication. Now I am sure that my Doc knows about the interactions between the various drugs but it does make you wonder I think. The only way people like us, who are experiencing a miserable life style most of the time, is to take control and try to find out if it is because of prescribed drug therapy.

Please do not stop taking the medication. It is an awful drug but it is better to take it than become underactive, look up hypothyroidism , I have been on thyroxine 125mcg for 31 years , I have palpitations n theshakes sometimes. My main concern is the muscle weakness, tiredness and unable to concentrate for very long. but I am alive. People suffer from so many things but if the Drs refuse to prescribe a more natural drug what else can we do. I myself know that when I eat healthier and do gentle exercises and quit the cigs then I do feel much better, so that's my plan.

I was first diagnosed at age 41 with Graves Disease. A series of horrific family events in a short time frame,

caused the disease to be apparent. I was given Synthroid at the time. Within a week I had severe hives on my back, arthritic symptoms in my joints to the point that I could not put any pressure at all on them. I felt like I was a 104 years old. My hair started to fall out as well. By chance, I forgot to take one dosage and I immediately

notices my symptoms abate somewhat. I returned to taking my meds, and the symptoms got worse. After three weeks of this, I took myself off and went to the doctor explaining why I had done this. He had a radioactive iodine test done. It came back that I was just borderline hyperactive. The decision was made to not return me on the Synthroid, but just monitor my thyroid levels.

For the next 7 years they remained in the normal range. Now, instead of higher levels than normal, I was going to the hypo side of the disease. I was placed on a low dosage of Levothyroxine instead. It seemed to help. A few years later, I was diagnosed with severe anemia. It was so bad that I was having pica cravings. My hair was brittle and I had dark circles under my eyes. I was also skinny as a rail, but I didn't mind that so much. I also started to have hip and joint pain occasionally. I figured it was just old age setting in after having six kids. I was close to menopause as well and figured it could be related to other hormonal changes. It took six months of in tense iron and B vitamin supplements before I was up to normal levels again.

At the end of that time my dosage was up to 88 milligrams of Levothyroxine. I was going through college and fuzzy thinking was a serious problem for me. I also started to notice that I was having gastrointestinal symptoms. The severity of the symptoms grew over time. If it wasn't for my daughter telling me that she was being tested for Celiac disease, I would be dead or close to it by now. She described the symptoms which were exactly the gastrointestinal problems I was having. I experimented for a week without gluten in my diet to the best of my ability at the time. My dark circles under my eyes immediately disappeared. I had energy instead of lethargy for the first time in years. I felt young again. I got the blood test for Celiac and it was overwhelmingly positive. I have been gluten free for four years now.

Unfortunately, my new diet added 50 extra pounds in six weeks. I felt so much better, but the tiny hints of arthritis in my joints felt worse over time. Two years ago, I added Meloxicam to my list of meds in order to be able to just walk without stiffness and pain shooting down to my knee. It does the trick. I began exercise, three months ago. It too seems to be making me feel better.

That is until this month. The hair loss has returned. I noticed that the Meloxicam is not as effective as it use to be. The final straw happened this week. For no reason, my back muscles froze up. Stiff as a board, I could hardly move. For the first two days, I added another NSAID to my med to help take away the extra swelling and soreness. I have always struggled with bloating on the Meloxicam,and so I stopped taking it and replaced it with the NSAIDs. On the third day, with little relieve, something triggered my memory of that first terrible reaction I had on Synthroid. I decided to take a break from the Levothyroxine to see if that would help. Sure enough, with in twelve hours, I noticed a huge difference. My joints are not aching as usual, and the back muscles are almost back to normal. I will see how it goes over the weekend, then return to the Levothyroxine.

In my research on Celiac Disease, there has been a clear connection with thyroid disorders and anemia linked to it. I wish my doctors knew that back then. I am now wondering if my dosage level needs to be reduced due to my body being healthier than it ever has been in over 20 years. The symptoms of Celiac disease was there all along, but I could not know it. I will find out how this Monday, when I get back on my Levo. If my symptoms return, I will know it is the meds, and not my aging body. One last note, I met a woman who has a low thyroid problem as well. Her endocrinologist made her go gluten free. He was convinced that thyroid disorders and gluten intolerance were linked together. Food for thought is all I offer here.