Hi there, I am on 125mcg of thyroxine and sadly I also experience many diff aches and pains and I have been told by my docs that this is normal, but the one side effect that I seem to have that I utterly detest is what I term my 'preggy belly'. My tummy has swollen to the extent that I look pregnant, hopefully this disapates.0 Report this reply to Guest
I've had all those side effects being on 75mcg and even worse is that I am been emotionally unbalanced by crying most days. I decided by myself - yes, by myself to reduce my own dosage after being on 5 months of 75mcg and after 2 weeks the crying stopped! Also my swollen abdomen which got so big with levothyroxine has gone down! I went to see a herbalist and I've decided to ween myself off thyroxine and try the herbal stuff. I know I'm doing wrong but I've been through so much over the last year that I'm thinking what can be worse. So I'm going to experiment and see if it works for me. I believe the thyroxine hasn't had a good effect on me and my condition is a lot worse than it was when I first taking thyroxine last July. The medical profession isn't pulling up their socks, they are useless and we are fobbed off. I am seen to have mental problems by my GP and it's absolutely crazy that having reduced my dosage I am feeling so much better. So I question who really does have the mental problems or incompetent to be a Doctor. Don't get me started cos I'll never stop!!
My advice is learn to know yourself and your body and you will automatically know what is you and what is the medication.11 Report this reply to Guest
hi, i'm really concerned about the above post, i am a fellow sufferer i was diagnosed at 18 and am now 32 and have been on thyroxine ever since, i take 125 mcg, my concern is (don't shhot me down) i'm a staff nurse and know alot about this condition and you can't just wean yourself off thyroxine, trust me there are severe dangers the worst being death. you can't replace it with a natural remedy, no matter what a herbalist tells you. i can't put it strongly enough without trying to scare you. you risk long term side effects with not taking your thyroxine including cardiac problems, coma..... i know the nhs is frustrating but don't risk your life, make a double appt with your gp and tell him what you are thinking of doing, that should make him sit up and listen.7 Report this reply to Guest
Hey I also don't want to scaremonger as I agree fully with the above post about the dangers of stopping your thyroxine....
My mother died at the age of 52 because she refused to take the tablets.No joke. I am also hypothyroid and know a lot about the condition. It does take quite some time to get back to normal, but you do get there with the thyroxine.
So please talk to your doctor immediately.. get another blood test done and discuss your concerns. [b:15b1795c8a]Please![/b:15b1795c8a]2 Report this reply to scriv
Hi Helen W. I was diagnosed 11 years ago at the age of eighteen and had really bad side effects at first including the ones you mentioned. Your dose will probably go up and down a few times before you stabilise so your body is just getting used to the thyroxine. It will all stop though I can guarantee it, once you are used to the tablets. Obviously hypothyroidism does have some really crappy symptoms but as long as you take care of yourself, I try to eat well (most of the time ha ha) and do a little exercise every day, I think it's manageable. I am on 225mcg a day now which is a high dose, but most of the time I feel pretty good (if a little tired!) so don't worry. Most of all just don't let it get you down and you'll be fine! Take care !2 Report this reply to Helen29
hi there all
Please ms please don't stop your medication as it can cause all sorts of problems as your body needs this hormone to function properly........
I don't want to alarm anyone but the doctors are there for a reason.......
The main focus in hypothyroidism treatment is to replace the missing hormones in your body. For this reason, hypothyroidism is always treated with medication, most commonly levothyroxine, which is a synthetic form of T4. Treatment for hypothyroidism is lifelong; you cannot discontinue your medication once you start feeling better. Once you have started treatment, your symptoms should start to improve within a week or two. However, it can take a few months before your metabolism has recovered.
There is no one correct dosage of hypothyroidism medication for everyone. When you first begin treatment, you will need to be closely monitored through regular blood tests until the appropriate dosage for you is determined. It is also important to not receive too much medication as this can cause you to develop hyperthyroidism, another type of thyroid disease. If you feel restless, have quick weight loss or increased sweating, notify your doctor, as these are signs of hyperthyroidism.
It is also important that your thyroid levels do not drop too low as this can cause myxedema coma, a potentially life threatening condition. Signs of myxedema include slowed breathing, low blood pressure and blood sugar levels, and abnormally low body temperature. Treatment of myxedema involves thyroid replacement through IV and steroid therapy. Causes of myxedema include infection, illness, and exposure to cold or certain medications in people with untreated hypothyroidism.
Left untreated, hypothyroidism can cause severe depression, heart failure or coma. Although there is no way to prevent hypothyroidism, it is possible to detect early in children who may have congenital hypothyroidism.
SES5 Report this reply to SES
Thank you for your concerns, I really do appreciate it. I know I'm taking a risk but I am so low, so depressed that I feel I want to try something else. You're all right, I do understand your concerns, in fact I'm kind of concerned myself. But I'm looking at it that I'm not a a very high dosage of levothyroxine, I was on 75mcg and have been on 50mcg for four weeks now. I think I just have to learn from my own mistakes and just hope that reducing the dosage doesn't create severe problems for me.
I saw a herbalist who's been practising for 30 years and he has left the decision to me. He said he has treated many people successfully but it all depends on their dosage and my dosage isn't very high.
I know I'm being ridiculous and stupid, but right now I feel like a child, I feel so vulnerable.
Thank you for your support
Mary3 Report this reply to Guest
hi there Ms
do you know the overall amount you will require as it is normally built up, until you are on your correct dosage, so yes you may think you have a low dosage but I started off on 50mcg and ended up to 200mcg until my levels settled down.......I have been on 175mcg for the past two years.......You have children right??? well they NEED a healthy mum, you maybe depressed at the moment, as its a kind of the shock to the system knowing that you HAVE to keep taking these medication, but you will be ok as long as you be patient........... just give it a chance...please think of your loved ones.
Sara2 Report this reply to SES
hi again, my initial response was to be cross with you :x That is my medical background speaking) but my human side says this:
when i was diagnosed at 18 it irritated the hell out of me that i would have to take tablets for the rest of my life, in fact i don't think i really grasped the severity of the situation, i would skip doses for anything up to 1-2 weeks at a time and obviously feel dreadful, i always found it amazing that i could remember to take my contraceptive pill but not my thyroxine lol! i tried to join the army not long after and failed the medical due to the fact that i had to take the tablets, their doctor told me i should stop taking the medication and see if i really needed it and if i didn't i could join..... anyway i had a chat to my gp who had some strong words to say about the whole thing needless to say i didn't join. it took me a long time to get to grips with things, i can't say i am the best person at always remebering to take my tablets i occassionally forget for a day or two but i know my body, i get this strange sensation of looking through a haze or binoculars, typical thyroid symptoms. i always feel the cold, have cold hands and feet, and still get tired sometimes, no matter what the doctors say i think most of us still get some symptoms but greatly improved and you can carry on with your life, i promise it will get better. read as much as you can but from the right sources and talk to your gp.
the main thing i wanted to say is that hypothyroidism can cause depression. there is areason we are all on thyroxine and not herbal remedies...... think about your family and most of all think about you, just give it some time.. x3 Report this reply to Guest
I have read all the comments on this post and have something quite unusual to report. I understood from all the literature that I have read that I would be on thyroxine for life. My levels were all over the place TSH was low, T4 was going low too, GP thought maybe a pituitary problem. So I was finally referred to an endo consultant earlier this year, after two years of taking thyroxine. He considered that I was 'NORMAL' and my original levels were never below the blood test levels (I was borderline). His opinon - my GP had made a mistake, (bless her, she was treating me for the symptoms and looked at me as a whole person and not just a blood test number). And here's the rub, he told me to stop taking Thyroxine straight away and have another blood test in 6 to 8 weeks time!
So I did as I was told, had the blood test and back in April I was 8.3 T4 and 4 TSH. The lowest T4 I've ever been, but both results were just within our local labs 'NORMAL' level (which had been reduced from 11 to 7.5 for T4 probably due to funding and having a huge elderly population). I did not go back to him as I found him to be unsympathetic and obviously a number cruncher. I have tried homeopathy, acupuncture and kelp in the last few months. My symptoms have not gone away totally, but I am holding my own. However, I am worried about what is going on inside! Cholesterol, blood glucose, other hormones? Last week I went to a different GP, (as the diagnosing GP had left the practice a while ago) and she was brilliant. I smugly told her that my periods were now regular every 28 days, although they weren't before Thyroxine, (oops spoke to soon). I am having bloods done tomorrow, so will see if the positive thinking and alternative therapies have worked.
I really don't want to go back on Thyroxine, I certainly improved when I first started taking the drug, however later on I went down hill even though I was taking 175 regularly.
I don't think there is any real answer to a thyroid problem. My advice would be to look at your family ancestry and try to eat in the way they would have done many years ago. That probably means low carbs for most people! Look at yourself holistically, check out any food intolerances, try to get out and take some form of exercise even for at least 20 mins, even though that's probably the last thing you feel like doing and generally listen to your body. I do believe that you can take Thyroxine and do all the alternative stuff. Ultimately for me, I would like to take animal thyroid if I can get hold of it, rather than a simulated hormone (sorry to all you vegetarians) but it's got to be better than taking something that is manufactured by a drug company.
I wish everyone with this problem the very best of luck, take control ~ don't leave it all to the Doctors!
Binna3 Report this reply to Binna
Was really interested to find this site and to read about your experiences.
I was hyperthyroid 3 years ago and after developing \"rare\" side effects from carbimazole had radio-active iodine which resulted in hypothyroidism.
Talk about one extreme to another !!
Am STILL trying to stabilize myself....as a registered nurse I feel I should be better at it !! Am amazed at how my mood is affected and was concerned when reading some of the comments posted that I am definitely not the only one to experience this.It can get so bad that I fear that I am at risk of true depression .
Has anyone had a feeling of tightness or a \"lump\" in the throat ? A scan of my thyroid was normal which made my doctor look at me as if I was mad !OH WELL !!!![/b]1 Report this reply to Dee
Hi all and thank you for all replies and advice
Today I feel, and am sorry to use this language - 'crap'. I am down and depressed. I went away to the Lake District last week for a holiday and was nauseous and had vertigo. It's the kids summer holidays and I am so depressed and in my own world that I can't give them a good time. I won't go to the gp cos I don't want to hear about anti depressants.
I am going ahead with the herbal stuff in september and am weening myself of this thyroxine. I will keep you all informed of my progress. I know you'll all be thinking I'm a nutter and am not educated enough to know about the thyroid. Perhaps, you're right but I've not been right for a while and I'm doing this to experiment, may be it will work for me. If I go really downhill I will let you all know and you can all say 'we told you so' and I'll slap myself from you all!
Once again, thank you for all your concerns. I will keep you all informed.3 Report this reply to Guest
Sorry to hear that things are not going well..if you are insistent on taking the alternative route try the website “ stop the thyroid madness\". I must add I have nothing to do with this site and I myself am on the thyroxine. However I believe we are all different and need to listen to our bodies…..so before you set off on your own have a look at this site and make your decisions from a position of knowledge..
Jack0 Report this reply to jackfrost
Just a thought for you and the others that think they may be having side affects from the thyroxine.
Synthetic T4 (Eltroxin, Levothroid, Levoxyl, Oroxine, Synthroid, Unithroid) Most brands contain lactose as a filler.
Levothroid and Levoxyl do not.
Symptoms of Lactose Intolerance
Common symptoms are nausea, cramps, bloating, gas and dihorreha which can begin between about 30 minutes to two hours after eating or drinking foods containing lactos
Are any of you Lactose intolerant, might be worth checking with your doctor!!!!!
Could be what is making you unwell.0 Report this reply to jackfrost
Hi there all
Yeah I agree with Jack Frost, you should ask your doctor this if you could have Lactose Intolerance, as there is a possibility?
The thyroxine does take a while to get into your system so looking at other angles could solve your anxieties? Talk things through with another doctor, they might have a more sympathetic approach too.
SES0 Report this reply to SES
I have been on Thyroxine since 1998 and now take 125mg. This drug causes as side effects, many of the actual symptoms of under-active thryroid that it is supposed to prevent, i.e.: Weight gain, especially around the waistline, Thinning hair, Dry skin, Problems with heat or cold adjustment and Lethargy.
I have received little or no interest or help on this issue from any GP's or Endocrinologists who often tend to be very dismissive and patronising. They just brush and worries aside giving them no importance and I am made to feel as though I am taking up their precious time.
In the USA this is at least taken more seriously and there is an opinion there that Levothyroxine in particular is known to cause these syptoms and that Synthroid is preferred. However, Synthroid is not available in the UK, (at least that is what I have been told by GP's) so it seems we have to put up with Levorthyroxine and its awful side effects!
To stop taking the medication is highly dangerous so should no be done without the supervision or consent of a doctor. It looks like we are stuck with this awful situation!!!8 Report this reply to falconry
side effects you get from L-thyroxine are fatigue, anxiety, headache,and weakness. Long term side effects involve cardiac and bone problems. The heart may pump more than usual due to the increase in energy and it may lead to cardiac overload. Also, bone mineral density decreases resulting to osteoporosis when used for quite a long time because it disrupts the work of calcitonin, a parathyroid hormone for
bone mineralization.0 Report this reply to heykevin
The three most common side effects of L-thyroxine are changes in appetite,increase in sweating, and noticeable hyperactivity. Due to the increase in energy, your appetite will surely increase because the stomach gets emptied faster due to quicker metabolism. By that, you get hungry and tend to consume more than your usual consumption. The increase in sweating is also linked to the idea of more energy. One way in metabolizing waste is through sweating and because of L-Thyroxine, the energy is increased, leading to a hastened metabolism leaving the person sweaty.0 Report this reply to heykevin