Overactive thyroid completely removed 6weeks ago now have some many more problems being underactive does it get any better?

Hi I had an overactive thyroid for 9years since age of 14, half of my thyroid was enlarged so had a huge lump in my neck because my thyroid has never been normal always over even with meds they couldn't stable my thyroid specialist told me to have it completely removed for the sake of my health when I get older, on there advice I went for the op and now I really wish I never did been 6weeks since my op I spent 10days in hospital instead of 4 as the thyroid surgeon had to remove 3 of 4 of my calcium glands that means straight after I came around from my op my hands was tingling(sign of low calcium) spent so many days on calcium drips in hospital was really ill my body went into shock as they messed me around not giving me calcium when I needed it but the same time I had this dizzy/light headedness straight from coming around from surgery. I've now got a calcium deficiency I'm on 18 calcium tablets aday, if that ent enough to deal with and the side affect of low calcium I'm having such a hard time with having no thyroid meaning I'm underactive I'm on 125mcg Levo (t4) and 20mcg livo (t3) I still feel like rubbish constantly tired minute I wake up I get out of bed for 10mins then I'm back in it all day my legs are so weak I've still got this light headedness no energy can't walk far, I have a 3year old son I can't even take him anywhere as I feel so ill, its depressing Ive put on 6lb was really slim but I liked my size 8 body that's another side affect I hate.. I get seen by my thyroid specialist every week to two weeks so blood tested then it says my bloods are normal with this dosage but I don't feel normal, my body used to be working so fast being overactive that I think I need to be on a higher dosage just to feel like my old self.. Has anyone else been in this position is there light at the end of the tunnel will I ever feel normal again how long did it take you? I honesty say I wouldn't recommend having the thyroid completely removed from being overactive it will change your life not for the good can cause more problem they you actually had. I'm 23 and I feel like my life has gone its depressing..

10 Replies

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  • I hope someone with experience replies soon - I am sure they will.

    On the matter of the calcium glands, I think you might benefit from some reading. One web site is all about the issues:

    parathyroid.com/

    Not always an easy read but it really is meant for patients. (Based in Florida, USA so some things are not quit the same - things like blood test numbers might be different.) There is a lot there so take it in small bits - otherwise it will be too much in one go!

    All the best

    Rod

  • hello, I know where youre coming from. I had radiation to destroy my thyroid 3 years ago and I regretted it straight away . I went from diagnoses to treatment with 2 or 3 weeks and felt that I was rushed into it.

    I too had the weak legs, dizziness, tiredness ....... etc etc. My GP told me that it could take 6 months of being at normal levels to feel any improvement as my body had been so ill for so long ( about 5 years before diagnosis ).

    It took about 18 months for my levels to stabilise, im not saying I feel great now because I don't but I am able to function day to day.I am able to walk the walk the dog and do housework without needing to catch my breath and wait for my heart to stop pounding.

    I get sick to death of people thinking thyroid disorders are trivial and mean a bit of weight gain , if only they knew :(

  • Thyroid disorders are life changing it affects your whole body I try to explain to NORMAL people about how ill I feel now and the tiredness they just think I'm making it up the only people who understand is my specialists I don't know anyone else with this problem so hard to explain to my partner and my family only when they see me just falling asleep at any time they realise I'm really struggling with my body.. The regret is the hardest bit to deal with before this surgery I was constantly on the go never stopped had loads of energy felt happy all the time I had this sparkle my mum always said I've got now she sees it gone I just want to have more energy I don't make it to the shops Im timed on what I can do i have to sit down when I've done a little housework.. And worst I can't drive my car some days as this light headedness so bad more when I'm so tired so I'm just sat in my house.. Oh the weight gain stupid really they should pre warn you about it as being overactive your used to be slim now that's playing on my mind of what I can eat and can't eat I look at myself and see a different person now.. So glad someone else had this light headedness because the doctors think I was making it up in hospital only when I sat down with a specialist he said it could be to do with my thyroid or the calcium he isn't sure.. Thank you for replying I think I need to comes to terms with il never be that old me anymore feel like I'm morning the loss of my old self at the mo.

  • im now thinking my lightheadedness is down to anxiety, if I could beat that I could live with everything else :)

  • snap i would feel so much better without the light headedness.. ?? Mine gets worst when I'm tired but saying that I've been suffering with anxiety of the unknown 'will I ever feel normal'.. I'm thinking of asking my doctor to see if they can send me to someone who deals with panic attacks as I've started having them when I feel so tired and not at home end up needing to get back home soon as poss then I feel better.. Never had them before now..

  • Hi Mummbwebb09 - sorry you are having to deal with all of this :( Dizziness/vertigo/panic attacks/anxiety were my worst symptoms of hypothyroidism, but they are gone now that I am well medicated.

    Just wondering if you could post your latest blood test results on here together with the ranges (these need to come from your own report as they vary a lot by lab)? Doctors often say normal when they are not optimal. Also do you have the blood test results from before your TT as it would very useful to be able to compare before and after?

    It is good that your doctor has prescribed T3 - lots don't :) xx

  • Thanks rod il have alook at that website..

  • Hello there, I was diagnosed overactive at age 13 and had a partial thyroidectomy at 18 after nothing worked. I was OK for some years but in my 30s I started getting overactive signs again, even had hallucinations and thyroid storm, so had a total thyroidectomy at 37 years of age.

    I did feel pretty bad for some time, it took about a year before I felt stable, I must say though that I didn't have the parathyroids removed (did get my vocal chords damaged though - bit of a problem for a music teacher - so had to give up anything involving singing. That WAS a major life change for me. singing had been my whole life from childhood.

    The feelings you are having are due to the shock to your system, plus some residual feelings, which are quite hard to handle, from when you were over-active. You have had it dealt with quite early which from the point of view of preventing damage done when you were overactive is very good. I agree with you, by the way, that when you are used to being overactive it's even more of a comedown, most hyperactive ones actually like the overall feeling of being active and hate being less so without the thyroid. It's a psychological thing which they never warn you about! The good news is, that does fade, but again it takes a little while, and you can get back to an active life once the body has adjusted itself.

    Now, the most important thing is to be sure you are be optimally (not just adequately) treated for your lack of a thyroid. You seem to have good care at the moment, which is a great plus. There is no reason why, with the correct medication, you should put on much weight. You are bound to be a little bit bigger than you were because you started, like me, at such a young age. I was a size 8 too, and in 1960 a size 8 was smaller than today! You probably never reached your 'natural' adult weight being hyper at such a young age, so please bear that in mind and don't agonize too much if you are a little bit bigger.

    Another vital thing is to feel healthy for your little one. That will take a little while but hopefully with support from this forum and your specialist that should happen very soon. So take care, and remember if you have any concerns that this is the best place to be.

    As Clarebear says, if you can get your blood results and put them here, you will get some advice and support. We all know the feeling of being told we are 'normal' when we don't feel it.

    Hugs

    Marie XXXXX

  • Clarebear I've been to my doctors today to try get my meds up but because I'm under thyroid specialist she wouldn't do even know I had blood done yesterday, also I've tried to get my blood test results also from her from before op and past 6weeks but she couldn't get them as they on hospital records not there records so I've got to wait till the 15th this month till I see my thyroid specialist to have my blood results ion as I get them myself I will post them on here, but I do know last time he said my t3 was high and my t4 was mid range normal.. And I'm still symptomatic so I know I need to be upped again.. Thanks for replying

  • Clarebear my thyroid specialist let me have t3 as the t4 take time to work and t3 fast acting my symptoms was way worst when he gave it me I felt it work the very next day didnt feel as tired as I did.. So that's good it's a shame they don't give it to people as readily as I got it as it sure works faster then my Levo..

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