thyroid side effects?

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i am 55 female have been tested 8 years ago for thyroid function after having a gynae problem! would you believe , no symptoms . not complaining of any.

perfectly healthy. looking forward to rest of life .

though i begged to differ over the diagnosis of being underactive with a borderline test result of 10.5 i was told yes it was necessary .

against my judgement i took thyroxine from day one i noticed blurred vision feeling out of things. started feeling cold . heart palpitations . pains i body so severe i stood and cried . burning mouth syndrome . carpal tunnel syndrome . feeling down . rashes . and this was supposed to improve things? though i saw doctor about she did not tie any of it in with the drugs i was taking as thyroxine is natural and harmless.

this i know not to be true now .

years i have been left suffering . even worse when had no symptoms at start . work became impossible. concentration. headaches nausea

in fact i could have lost my job it was that bad .

my gp finally gave up even trying . i saw a specialist after a year who said i may need increase. as i felt well to start and now ill hard to know how that would help!

it didnt i got worse.

he saw me again as i was desperate and laughed me out of his office at the suggestion that this may be caused by drugs, its harmless he said .

he said i was having an anxiety over something so trivial which i wasnt but the pain was getting me down . he said he couldnt help me as tests were fine tsh nearly normal .,

i was then left nowhere to turn . gp treating me for anything that i complained of as a separate issue . joint pains .pre arthritic tests . dizzinesss possible ear infections . headaches eye tests . stiffness joints put down to being old at 47!

this carried on . me knowing things were very wrong . blaming myself for ever agreeing to take pills when new i was ok . regrets

mentally in a right state.

finally last year putting uup with headaches . dizziness. pain . things got worse as i had sinus probs . headaches. feeling tired cold . and ended up lifeless sitting in chaI staring into space for 2 days crying .

my husband didnt know what to do .

couldnt work . felt brain dead. scary and i realised any worse i would be in a coma state. wasnt this the worst state you could getin with thyroid untreated? been off med and fine for a year as dr on phone said i may need hrt perhaps? or change of med. this is first time anyone suggested that in 7 years .

i stayed off med until oct. as i demanded to see a different specialiost at mk this time .

they immediately said that these things are usually down to side effects try liothyronine . low dose see how get on

first day severe pains all over body in bones soreness . worrying on its own . then stomach bloating . irritable bowel . headaches , mood changes . muscle weakness . couldnt lift weights or finding dificult to drive. tried to assume this would go eventually as knew my options for treatment are few .

this got worse so i came off . saw spec again . said i had to take something as thyroid wont keep on much longer . some people dont get on with any treatment . what happens tothem i dont know?

anyway i went back on , pain continuos saw new gp who admitted yes pills dont suit everyone could be that , tested me for esr and bone probs .

esr came back raised . retested month later must have been lower .

saw specialist again by this time levels were .8 less not much . he said try bit higher dose which i did ,

couldnt take as pains so bad . took more in desperation see what happened . finally i got changes in mood cold tired again . and last weekend ended up with severe heads. back in chair off work week . crying . no energy , lifeless. no point to doing anything even if i had energy to .

rang hospital specialist in state . told to come off med as if side effects best to soon as poss. yet i had been suffering it with my gp for 7 years and they think it has no side effects!

this i did anyway as i have no desire to be in a coma and thats next thing i am sure . now i have had to get the drug out of my system slowly iam returning back to my normal happy self energy back no pains. and i just keep wondering why i ever needed to do this to myself . i was so scare to come off the thyroxine when it reacted badly . i asked and asked to come off but was told to give it longer,

i did 7 years longer . had the gp known enough about the trratment and poss side effects i could have been saved all this misery,

but more than blaming her is the fact the consultant in northampton where i live laughed me out of his office at any suggestion of it being side effects . his words were he could do nothing for me take me home!

the anger i feel now is really upsetting as i have no outlet for it . mk have been honest and brillant , really caring i not sure where i will go from this . i feel i would like to wait til i get any possible side effects from not ttreating thyroid now. if i have symptoms which i should at tsh 38 then i would be glad to be treated as have experienced the worst symptoms with treatment .

it has all worked in reverese . started well ended up headng towards coma . as my husband told them when you think she should be ill she is well . when you think she well at 2.5 tsh shes ill .

i dont know whats happening here whether i need treatment or not they say i do . if it had effect of an aspirin like my 2 sisters say then i would take willingly .

it seems worse than a pure allergy side effects to me.

does anyone know whats going on and can help ??? confused . my next appointment is not util june they are going to look into it then . but i dont want to keep testing drugs out being ill . my only daughter gets married next april and i dont want to be in a vegetative state like that and be too ill to go . something i have looked forward to so long .

i wish i could turn the clock back and had never done what gp advised . i thought it was harmless too but not the case. for a lot of people from what i hear. just would like my life back . constantly unsure of whethe it will last now i feel better every day not on them . not worse . it could all end like they say it will but least i will know as been through it all in interests of health , apparrently? thanks

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9 Replies

  • Posted

    hi, i Really feel for you having to go through all that!!!!! Im hypothyroid due to rai i was very oveactive but, now feel much better. From reading your comments it does seem that thyroxine is not the answer for you considering your levels were not reasonably out maybe they should have left you alone for a while. I do experience aches & pains, dizzeness etc but, cant put mine down to thyroxine as, i had all those symptoms before starting it. The trouble with the medical profesion is that they go by text book & what the normal ranges are but, as you will read from other peoples comments everyones range is different but, they dont seem to grasp this. I do hope you start to feel better soon & get the right treatment its funny because when i first became ill they said it was the menopause but your thyroid being out can mimic all sorts of other illnesses & the menopause is 1 of them ( i have since found out that i am menopausal) Its also very common for women of this age to get thyroid problems & this may be only temporary.Well take care. Elaine.
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  • Posted

    Are you saying your TSH is now 38 ? if so you should be getting hypo symptoms and you do need treatment.

    All the symptons you were getting on Levo are Hypo ones which makes no sense if you say you didn't have them before. Levo is a replacement medication and only replacing what your body is lacking.

    Some people who say they cannot tolerate Levo take purified thyroxine, others take a natural replacement called Armour but that is currently unavailable as there is a worlwide shortage, there are other alternative makes.

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  • Posted

    Armour thyroid appears now to be available again. Some patients react badly to the fillers in Thyroxine.

    Also, with such a bad reaction, has your GP or particularly your consultant tested your adrenal glands? Thyroxine can cause severe side effects if the adrenal glands are not working as they should be.

    Interestingly you quote 10.5 as borderline. You would be treated for hypothyroidism in the USA with a TSH of below 3! In the UK the reference ranges for TSH are generally (different lab to lab) 0.5 - 5.

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  • Posted

    Hi, I feel really sorry for all the many people who don't get on with levothyroxine. I think I am one of them! Was diagnosed hypo (TSH 11.5) in Sept 09 after experiencing extreme fatigue and constipation, and put on 75mg. Then after 3 months, up to 125. Felt slightly better (I thought) but blood tests revealed dosage was too high (TSH 0.05). Now have been on 100 for 2 months, and feel like death warmed up! Cannot walk up even minor inclines (My dog is getting bored with short, flat walks!) and one housework task, e.g. hoovering the lounge, means a lie-down afterwards. Even taking my jumper off over my head prompts breathlessness. Worst of all, I have lost my appetite to the point of nausea, and have gone from a healthy 10st 3lb (I'm 5ft 9\"wink to a skinny 9st 9lb. I used to be fit, energetic and motivated - now I'm totally exhaustated and frustrated like hell! I'm also experiencing numbness of the hands at night. I'm not an anxious or depressed sort of person at all. My next blood tests are in December, and I've a horrid feeling that they will be 'normal'.............but I feel nothing like normal!! Anyone any ideas? I'm considering Armour thyroid - does anyone out there takeit, after a similar reaction to mine with Levothyroxine?
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  • Posted

    The fact that you are losing weight could mean you are indeed Hyper, a TSH of 0.05 does indicate that, I have the same 0.05 TSH and am reducing my dose.

    However you need to know what your T4 and T3 are, if they are within the ranges then it's not to drastic, a reduced dose should bring the TSH up a bit, although so far for me it hasn't done so yet.

    Hyper and Hypo symptons do overlap so you might feel Hypo but be Hyper.

    You could try taking 100/125 on alternate days, this is what I am doing. Also many people find taking it at night is better, I am doing this as well.

    If you do take it in the morning are you taking it first thing and at least 30 mins before food or hot drink and well away from vits or other drugs that can affect absorbtion.

    There is no point in going down the Armour route unless you are sure that Levo does not work for you. Firstly it can be difficult to get it prescribed as it is not licenced and there have been supply issues in the past, also for many people it makes matters worse.

    Try and get your results to see what your T4 and 3 are doing then you can decide what to do next but alternating might be the way to go, it's working for me at the mo.

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  • Posted

    Just come across this feed and am so releaved that I am not the only person who gets symptoms of hyperthyroidism when taking thyroxine for hypothyroidism. I have seen a specialist as well as my GP and I am sure they both think I am making this up. I too had no symptoms and was told my TSH was low upon a routine blood test for medication taken for PCOS. The more thyroxine I take the more intense the symptoms of palpitations, depression, anxiety,tiredness and severe PMS get. My TSH was in the high 30's at first and is now 10 whilst taking alternate days of 50 and 75 mcg thyroxine. Am now on betablockers to relieve the symptoms as specialist does not know what to do with me. Think i am just going to stop taking thyroxine as have now felt ill for 2 years and when I have reduced the dose previously did start to feel better but doctor frightened me into upping dose again as said i would make myself really ill. Does anyone else have this problem?
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  • Posted

    hi sorry i havent been on here for years now as wasnt sure what was going on myself , i now know a lot more than i did , unfortunately i cant take on the medical profession to prove what i am saying but nor can they disprove it , i am almost recovered from being ill on thyroid medication , through noticing what was happening by myself with no medical support, i would say to sue , that hearing your problems sounds so much like my experience , i wanted to come on here to at least tell you how things were going now , its been a battle i can tell you, you do get laughed at , i was raising my thyroid levels dangerously by taking thyroid meds when i didnt need to , as i had said from start , i took legal advice but was told would have no case and i should have gone with my own instincts , doctors advice is useful but if i felt ok i neednt have took it , fine to say but at that time i believed the readiung couldnt possibly be wrong , drs didnt make mistakes and knew everything , i trusted my doctor ,

    its been a real battle i noticed effects like sugar cravings , rashes , thrush , my feeling had been that i was making myself ill by actually being hyper not hypo , thats why i had to take beta blockers to stop my heart racing also why i couldnt sleep at night as my eyes were wide open , couldnt relax at all , i wrote letters to the mk hospital telling them how bad had been , they admitted it wasnt how treatment should be ,

    i stopped going to specialist because they hadnt a clue why i was ill either , how many times i rang to try get specialist to talk to me even ! i had adrenal gland tested thru asking myself but that was ok ,

    what i did do was not take the pills anymore as i just could not function anymore , getting worse til in uncontrollable crying state is not good in my opinion , and very scary i thought my life was over , unable to work always sick , but i had been well for 46 years til day they messed with my thyroid ,

    as they only have readings to go by , they cant tell but i think if you have symptoms and they treat you it would be a good idea i didnt , i complained of nothing only gynae prob , reading says needs sorting s that was it , tho specialist told me after he and loads of other doctors wouldnt have but kept eye on it see if got worse ,

    having got my suspicions over this being connected to candida albicans, after reading about it , i decided to try the saliva test which turned out to be very bad , i did the questionnaire on it on line which was analysed by company who said i had a very bad case whch was bordering on toxicity , which i had been saying throughout that i had felt like i was being poisoned , none of this would have become as bad had i not been made hyper by those pills , as the book i now have by leon cantlow which is the only thing i can refer to ,what it does advise is changng your diet and getting the fungal infection under control , which is hard , but i am trying and its getting there i think , having read the book i can say that every symptom i had is in there , and strangely enoughthe first thing the candida does is affect your thyroid , as the book says its a common thing now as people eat so many sweet sugary foods , i had thrush at my first examination by my doctor , who said get over counter meds for it , like all i thought that was it , cured ,

    the book says you wont ever get a doctor on national health to diagnose the problem as it doesnt happen , but it does and is very real , i have not traken thyroxine as i am now believing in my own body , knowing when i am well , off thyroxine my thyroid levels were coming down anyway , something a dr hadnt got a clue why ? they havent a clue as dish out thyroid pills just from a reading , reading this book is just like my whole experience andi know it does happen as unfortunately for me i continued to take thyroxine making my body off balance to the point the candida did get out of control affecting my brain as i said it

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  • Posted

    Thank you for your response Janine. You have given me back confidence in my own instincts being right which doctors had totally destroyed. I had reached the point where I believed my life would no longer be worth living if I had to live it with these symptoms. I too am going to stop taking the thyroxine until such time as I start to get symptoms of an underative thyroid and would need to take such medication. I feel I have lost 2 years of my life and totally sympathise with the length of time you must feel you have lost and will never get back. It is astounding how doctors think treatment for thyroid problems is so cut and dried and how they are so ready to assume that patients are not able to recognise when something is amiss with their treatment. I feel stupid to have been frightened into continuing with treatment by doctors telling me I would do myself harm by not taking thyroxine. Hopefully my work, home and family life will no longer suffer. Thanks again for your post it has helped me enormously.
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  • Posted

    hi sue , i am so glad i got your e mail as when i was on patient uk i was so desperate for answers, the years went by, really it has been hell the amount of pain and illness i had too many to list, i just wanted the pain to stop , all i talked about was why a dr had given me something supposedly harmless and i had told her after 2 weeks that this was making me ill , i had disc like patches she doagnosed as lichen planus , they spread all overfrom waist up , i told her i wanted to come off them not suiting me , she emphatically said no! you havent given it long enough ! so i stayed on them , getting worse and worse , kning that i didnt need them , as i had no symptoms i expected feel no different or better, but i didnt ,

    i searched the internet for years trying find a reason the reading could be wrong something else mus atffect your thyroid , the only thing i had when i went to dr was thrush then had coil fitted after , i went for contraception ended up with 9 years of misery for it , looking back i can only say that i was scared by doctors into carrying on taking them , even the chemist said you are usually on them for life , apart from nat remedies he said there was nothing else, i was totally confused by then and it had started to affect my normal balance of my body so i was emotional stresssed , i couldnt cope with it all just wanted my life back , when my gp finally decided things werent going to her plan about a year later ! i saw a specialist who just did same looked at latest readings said you may feel better taking bit more , i s complaing joint pain coldness , rashes , feeling detached from things from day one , tired , nausea not eating and gaining weight , not quite how it was supposed to be ! . i knew it was wrong to take them but hat specialist practically shouted at me when i said i wanted to come off them , come off them then he said we will check you again in 3 months but if its still underactive and not treated it could be fatal !! ......... needless to say i didnt come off them and carried on suffering , being ill off work dizzinesss, affecting sinuses , severe headaches , pain top of head , by now convinced myself i had undiagnosed terminal illness , but thyroid reading was ok , drs didnt want to know after that , if i complained they said we cant deal with it we arent specialists , yet it was my gp who knew enough about it to diagnose it from one test no symptoms !

    had i not been made ill and too emotional with anxiety i could have dealt with it and seen what was going on , but once it had all started sending me down i couldnt my hubby said yes but drs cant find anything wrong with you , before long i felt like a hypochondriac and was treated like one ! the worse thing was being alone but knowing youre right !

    i can see now how stupid i was to take thyroid med after the first two weeks , but we all trust our drs , and readings dont lie ! , i carried on making myself ill on their advice , i sould have believed in my own health, i have never had any illness or seen a specialist in my life once thyroid treatment started i spent my life hospitals and trying get a dr to listen , but laughed at , .

    having told my doctor that i wanted see a second specialist . i made a complaint about her treating me ,stopped seeing that gp as she had convinced herself she had done it all by the book not her problem ,

    at mk i felt well as had been not taking thyroxine , they again looked at the reading alone and said s really bad 38! , need take something, but its up to you, if you feel well at mo you wont much longer ! i looked at hubby thought that doesnt sound good , phaps better try in case it was med not suiting , so they recommended thyronine , i reacted badly to it from minute i took again cramps , muscle weakness , pain in my bones like acid burning , horrible but i stuck it til next app, hoping that the reading would come down and they would leave me alone stop quoting reading

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