Extreme Case?

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Hello

I am 43 years old and was diagnosed with a 'spectacularly underactive' thyroid at the end of July 2007. My TSH level was over 100 (apparently they stop counting after this) and my T4 was only 1.2. It got so bad that I almost fell into a coma; I could sleep virtually all day and all night; my hair was falling out; my joints hurt; and my weight had increased by about 7 stones over the years and though I have always had a good diet, I blamed myself for being a lazy so-and-so. In addition, I was breathless, etc, etc. Despite all this I was holding down a very pressurised job as a teacher in an inner-city school. I think adrenalin must have kept me going for so long.

I started on 150mcg of Levothyroxine and am now on 250mcg. I continue to feel unwell (though many symptoms have eased). The consultant told me that it would take six months for me to feel better after my levels had [i:872c9babc5][b:872c9babc5]stabilised[/b:872c9babc5][/i:872c9babc5]. My doctor has seen the levels come to within the 'normal range' but insists that he does not think it can be my thyroid but is more likely to be chronic fatigue. He is not prepared to do another blood test until about June.

I just wonder if anyone else has reached such a critical point before being diagnosed and if they can share any similar experiences. I have been taking Seroxat for about ten years also and am now convinced that the depression I suffered was probably related to my thyroid illness. I am a very strong character and I think many doctors try to make out that continuing symptoms are down to 'clinical morbidity'. I keep telling him that I am sick of feeling unwell and do not want to contemplate having Chronic Fatigue Syndrome. :?

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13 Replies

  • Posted

    Hi ej

    Im in agreement with you about the doctors I have been on thyroxine for 6 years now and am on 225 mg I still don't feel like myself though, my docter just says well your test results are fine its just you!!! All his other hypothyroid paitents are very happy with his treatment according to him so its just me!!!! Admittally I do have Autoimmune diesease ( B12 deficiency, vitilago,polyartharia etc) but I still feel that they only look at test results not at how you actually feel. I have no energy my memory has long gone i survive on Lists, Its a family joke that I can't hold a thing in my head for more than a few minutes, my hair is thining I actually got a sunburnt scalp, even the doctor had to agree my hair was a tad thin then!! Im just fed up of it all. But its hard to make to much fuss as they can strike you off and thats just scary!!

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  • Posted

    Yep I was where you were My TSH was of the scale and as it turns out I was under active for quite some time before I was diagnosed… I was very near to collapse at one stage…I took the meds but I also then found out all I could about the complaint I found out that the doctors were not the experts…lots of things worked for me I came to the conclusion that my adrenals were suffering and that I needed to be eating the right foods to support my body…..i was on 225 thyroxin but I am back down to 175 and I guess I will get it lower by eating the food that my body needs to support the complaint…you have to find out everything about it and then help your doc to help you ….if you look back about a year you can see my original post “ Thyroid v old git syndrome”

    Remember knowledge is power

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  • Posted

    Yeah the whole thyroid thing has me totally baffeled to :roll: . IM NOW 33 and was diagnosed back in 2002 so i was just 26/27, i suffered memory loss deppresion i think i cried every day at some point, dont know how my boyfriend or famialy put up with me and my mood swings. i couldnt go to the loo naturally and looked about 6month pregnant although i was not.I used to swim with my mam both strong swimmers , iwas always abit faster but got to the point i could not keep up with her just felt so week. I could have slept on a washing line. Like yourself since taking thyroxine certain things have improved , buthave never felt back to normall, infact some days i feel like an old person proberbly feels.I could go on and on i know you will understand. I think everyones diffrent some people are great once taking thyroxine,but like you i struggle everday,and because you get sick of complaining you just get on with it. And im tottaly in agreement that the doctors dont really seem to know enough about.Iam not critisising the doctors as i think its such a hard thing to get right , but its been 6 year of thyroxine for me now and i did hope to feel better than i do! iVE ENJOYED REPLYING to people who understand im not a moped person but have actually felt some comfort from this! good luck for the future.
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  • Posted

    Hi

    I really do sympathesise with you. I am visiting the hospital every six weeks because of my fluctuating thyroxine levels. I feel absolutely awful. I'm suffering from insomnia, depression, mind buzzing but unable to do much at all. I have lost interest in living and am just existing - I have three children to look after and my marriage isn't great at all.

    We need help - not fobbing off.

    Take care and all the best.

    ms

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  • Posted

    I have had what you all call hypthyroidism, for about 9yrs, I was told by letter, and given a prescription within the letter,that was as much as I knew, untill tonight,for several years I was on medication for depression ,Im thinking was I really depressed? all the other symtoms you all have ,I've been there too. for years i have felt lazy,and unable to deal with everyday life,thank god I had a very supporting husband.I'm now on 150 mcg daily, seem to be ok. I have mardy mondays,and very tired days but I have learnt to go with it and only do as much as I can do!!.I wish i had more info earlier,and was more aware that what i was feeling was normal.

    kelly

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  • Posted

    :roll: Hi Thyroid sufferes, Im aged 50 and have suffered this problem for 32 yrs, and like all the letters ive just read all point to the same conclusion! we are depressive lazy moaning hypacondriacs, I have never felt 100% and always seem to have one symptem or another. In my younger years i was severly depressed and attempted suicide on more than one occasion, when i was finaly diagnosed, after a full blood test, I did improve after a couple of months. Nothing ever showed up on normal blood tests, so anyone with syptoms ask for a T4 test

    And life has been a roller coaster since becouse when all starts going wrong and you tell the doc I feel this that and the other, We get \"your stressed \" and it goes on.... Until the dose gets a little higher and you feel back to normal ( whatever that is?) where does it all end and how high can the dosage go....... Im worried. I am currently on 200mg of thyroxine and in the process of needing more My symptoms are swollen neck (goiter) lethargy,miserable ,very tired and aching joints,and im sure my partner agrees a pain in the but to live with. I totally sympathise with anyone who has this dreadful desease. Nobody seems to understand.

    Carol xx

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  • Posted

    hi ej and to everyone that reads this,i was diagnosed last march with underactive thyroid but before i was diagnosed i could'nt hardly speak i was like a zombie,my t3 levels were very high and i lost interest in life very depressed,even though the doc now says my levels are fine i still dont feel right,im always depressed,never wanna go out,i feel everday i have to drag my feet to do things,its so hard cos i have 4 kids and i hate them seeing me like this,i went for blood tests last week and get results on friday,i also suffer with anxiety,migraine and cerebeller ataxia,when i tried explaining to my doc how i felt she put me on anti depressants which i dont think has helped at all,i feel like im being fobbed off and no one understands how i feel,my doc also said that my symptons are worse cos of all the other problems i have and that if i still feel depressed she is going to refer me to a phychatrist{ i dont know whether thats a good thing or a bad thing}has anyone been told that that underactive thyroid is not an illness cos when i tell people how i feel thats what they say to me and then i think its all in my head but i know its not.

    take care

    lynne

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  • Posted

    I am so glad to find out that I am not alone with my symptoms, even when my blood levels appear ok I feel lethargic and tired, I work three days a week and then I'm totally wiped out for a couple of days. I feel unable to do simple things like plan prepare and cook a meal without feeling exhausted.I too suffer from anxiety and panic attacks and I hate my children seeing me like this, I just feel in a daze for a lot of the time.My tsh levels seem to constantly fluctuate and it is usually my husband who sends me for my boods testing as he notices when I am more down and slower.People don't understand the effect an underactive thyroid has on your life.I just keep hoping that eventually I will be settled on a dose that suits me and that gives me the energy to do the things that I want to do.
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  • Posted

    Hi

    We all share very similar symptoms and all have so much in common but, what I can't understand is why aren't the medical profession waking up to this (except a few). We all want to feel well so we can get on with life and enjoy it and be happy. None of us don't want to be like this. I am watching my children grow before me and I've not been there for them in the last two years (when I went really downhill). Even now, my children sometimes talk to me and I really want to respond but my mood plays havoc.

    One day it'll all come out like it always does, and then perhaps thyroid patients will be given the treatment and support that they deserve.

    Take care all

    ms

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  • Posted

    I too had got to a severe state before being diagnosed and was ok and feeling good on 175mg of thyroxine, however each year after my blood test, they tell me i'm taking too much and make me reduce it, after a couple of weeks I start to feel ill again, I go back to doc and he puts it back up to 175mg and I'm fine till the next blood test. This time he insists that its still too high and I can see that the blood tests are showing not normal but I feel fine. Am currently on the 5th week of reduced meds at 150mg and feel awful, usual symptoms numbness in my hands, sweating head , mentally slow, sleeping all the time. surely not everyone can fall into the same range of 0.5 and 5.0 Back to docs tomorrow to see what they can do, as I cant keep on like this.
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  • Posted

    i was overactive then had radio iodine treatment to witch i ended up in hospital with them saying i was very ill they started to do test after test then said i was the worst case they had come across i was on morphine for the pain in my chest and joints all i diid was sleep i was very close to going into a coma too it scared the life out of me i thought i was dying at the time so did my partner but also thinking it was in my head too as id given my sister a kidney 1 yr before this then to be so ill i thought it was that not the thyriod now im getting there 9 months on levothyroxin i sorted my own doseage out ny taking the wrong amount thinking i was taking 75mg to which i took 125mg i felt great then i noticed what id done saw my gp told him he reduced it to 100mg and im doing ok now still got the sweats i dont sleep at night now but the strange thing is iv not put on wieght at all to the gp's concern i have now developed lumps in my nech that are being checked up on now
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  • Posted

    It's almost as though T4 Thyroxine, is the only medication for hypothyroidism, but it's not.

    Some people do better with a combination of T4/T3, some T3 only and some on natural Armour Thyroid (porcine) which is a combination of T4 and T3 and sometimes a combination of all three.

    We are all different and should be treated as such.

    It would be worth reading up on T3 and discussing with your doctor.

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