Hyperthyroidism Support Group

Some people do not feel better until the Iodine stores are used up (about six to eight weeks). Have patience! :-)

I am still in denial after two years of carbizomole and Co. Taking the treatment that has not worked. I don't know where to go. I can't live with this and the treatment gives me terrible side effects..and I mean terrible. Now my doc wants to destroy my thyroid and condemn me to further symptoms and a life-long dependancy, along with all the pointless monotoring that never seems to work for me.

I fear that if I agree, because I am so exhausted by my condition, I'll end up with a life time of more of the same horrible bullshit. I can't stand being underactive, it makes me feel like the living dead, plus I have a weight problem and can't aford to get any more flustered or fatter. I am obese and currently 8 stone over my body weight. Any more and the weight will kill me anyways.

It is not like I gave up. I managed to shed 5 stone over the past year so there is another reason why I am afraid to let this idiot destroy my thyroid. He assures me i'll gain weight I can't afford and undo all my hard work. He seems to think my symptoms are okay and that his one size fits all answers are good enough. I have no faith in him or either of the other two doctors who have also failed to help me over these past years.

As things are now, well, I just want to die. I am so tired of being tired in my body and soul. I don't know where to go from here. Death looks good to me. It would be a release. I can't keep living with this crap. I hate it. I hate how it reduces me and makes me this depressed inept idiot all the time, accident prone and ranting. I hate blood tests too. I hate taking drugs and the thought of being hooked up to a synthetic chemical for the rest of my life really makes me want to let go.

Maybe I just don't believe I can find pece with this condition. I know that just as the treatment that was meant to help me but did not, and worse, gave me further distress in terrible side effects, this new approach with his cell killing organ destroying Iodine treatment will also not help. It'll be like trading one type of hell for another. I was originally told I would have no side effects and then I did. I was told I'd feel better but never did. I don't trust anything anymore including myself.

I don't know what to do. I am tempted to do nothing, stop the pills and just live with the symptoms--if they kill me then i'll be free. I don't believe I have all that much to lose except my frustration. I have had no quality of life or support. I have had condscention and indifference handed over in trite replies for answers, coated in smugness. I hear the same tomes. They keep telling me the Iodine treatment is safe and the after care will help me feel better. But then they told me the pills would help and have no side effects. After two years of not getting better I no longer trust.

I am sorry for anyone who has this illness. I hope I did not upset anyone with my shade of it ...but I feel so lost. I don't know where to go.

I suppose my reluctance to make peace with my pain is my denial. But I can't help feeling this way. I wish you better and more help.

Hi margaretkelly and welcome!

I am sorry you are not doing well after two years of being put on meds - ATD (antithyroid drugs). Having a thyroid disease is a lifelong disease no matter whichever treatment is done. I've had thyroid disease for about 35 years now, undiagnosed and diagnosed so I know how this feels like.

Now I would like some info from you on how you are going about treating your thyroid disease, on being proactive and to make it work for you.

What ATD are you using now? How often do you take it? It is meant to be taken in divided doses several times a day.

Do you get labs? How often? While on ATD, it's best to get labs done of the Free T3, Free T4, and TSH every six weeks on the average. The Free Ts need to be kept at mid ranges, at least, to stay well. Doses adjustments of the ATD need to be made to have the Free Ts in the mid ranges. If you fall below mid ranges, you are heading hypO and will need to reduce the ATD.

This will likely explain the weight gain you going through.

I am guessing you may from the UK, Australia, or whatever since you are using the word stone for weight.

Please post your labs with the ranges and what ATD you are on and how much so we can help you better to get on track.

As I said, having a thyroid disease is a lifetime process. We must take care of it with meds, diet, environmental, etc. to stay balance.

{{{hugs}} :-)

Hi ...and thanks for the {{{hugs}}}

I am on a morning and night one tablet dose of 50 MG PROPYLTHIOURACIL. That dosage gives me some minor effects like neck, back and arm pain, nausia and stomach cramps, which I decided to put up with to try and deal with my illness..but my doctor says it is not working. I'm rampant right now. I'm anxious and irational and very depressed. I know I am not being myself or 'normal'. In his letter to my GP he says he is concerned and wants to take a sample from my growth in my neck. He says I *have* to take the iodine treatment. Could you tell me..how is it, I mean, what is it like living post this treatment? How do you feel in yourself?

Like I said, I strongly disliked the under active condition the pills caused when I took four a day. That lasted for weeks and was a year ago. Now I'm back to rampant. My blood test says am 36 of a count..or something like that. I live in the U.K. in Scotland and they don't seem to be so clear about such things. I had to ask and didn't know what to ask for or what thier reply meant. Hence my uncertanty about it. Can you help? Does it mean anything to your experienced ear??

Anyway..thanks for replying. I've been very upset. I think I'm not reacting well to anything..so please forgive anything inappropriate I say.

{{hugs}} back at you, you sweet thing. :)

Hi Margaret:

Thank you for letting me know where you are from! Just go to your doctors offices or labs and ask for hard copies of your labs. Then you can post under a new thread of your labs from the last few months and the ranges. I'll help you to see if you got the 'right' labs done and which ones you need to get. Also post how much PTU (Propylthouracil) you were on at the time of labs to give a better idea of what's going on.

I'm sorry to say that not all doctors or Endos know how to run the right labs and tests. Some do not know how to dose us properly either, making us get very hypO and sometimes even very hypER.

The correct labs to get are called the Free T3, Free T4, and TSH. Many doctors dose by the TSH when it's the Free T4 (especially) to dose by.

You don't want to get an RAI yet if you can stabilized by dosing properly on the right amounts of PTU and all the while keeping the Free Ts at mid ranges to feel your best at. Some people have a hard time stabilizing on replacement med after getting an RAI done and this can be just as bad. :-(

I'm sorry I do not know what the 36 pertains to. I am wondering if you may be hypO based on the symptoms you describe? :-(

I'll be waiting to hear from you when you get all the information together and post at a new thread.

{{{hugs}}} :-)

Hi there,
I know exactly what you are going through. I was diagnosed about a year ago and have been in denial as well. I thought that this was caused by the stress that I was under at the time. I felt that as soon as the stress was over, this would go away too. In addition I have no family history so in my mind this was not possible. I have the elevated heart rate, night sweats, hot all the time, heart palpitations etc. The one thing that I don't have is any rapid weight loss. My weight has been the same for years, so this just added fuel for my denial.
I went back to my doctor a few weeks ago to find out that my T4 & T3 levels had worsened and that my heart rate was still too high (120bpm). Sitting with my Doctor I realized that this was something that I could not will away. I left his office and filled my prescriptions.
I got home with them and had 10 million exuses for not taking them. The number one exuse is just sheer fear. In addition to this, I have suffered with Panic Disorder for the past 24 years. Taking medication is one thing that sets my Panic off. I have had the medication at home for the past 3 weeks trying to get the courage to take them. Finally this morning I took my first pill. Only the Thyroid blocker though. I don't quite have the courage to take the heart medication just yet. I have the support of my husband who sat with me when I took the first pill. I cried and had myself all worked up about it and probably will again when I take the next dose. I am very angry and still can't accept the fact that I have Hyperthyroidism, but after all the blood work, the uptake exam and all the sypmtoms, the writing is on the wall.
I know you are scared to start the medication as am i, but what will happen if we don't. Even though I am terrified that there will be nasty side effects from the meds, what will be the side effects to our health and bodies if we don't. I guess we both need to try to accept what we have and just deal with it. As hard as it is to do, think positive and look forward to the day when all the symptoms are gone and we don't feel like a bag of smashed assholes anymore..
I wish you all the best and hope that you will start your medication soon.
Take care

to margaret,
if you have been on meds for 2 years and take 100 milligrams of ptu a day(is that right?) it might be too much for you now? You sound more hypo than hyper but until you post some kind of labs (with ranges) we won't know. It's hard to figure out without them. Don't give up!

p.s. I re-read your post and it seems the ptu isn't working now? I hope they are not going by your tsh alone which is usually low with Graves, so doctors over treat. Can you take Carbimazole instead, I take it you are from the U.K? It can be somewhat more potent with less side effects.

Hi LuciB..

many thanks for your reply..and regrets for the delay in my own.

I'm a little more reconciled since I last posted this rant. But I'm not well or happy. I guess you and my other advisers are right. I must accept my condition and make the appropriate compromises. And I do. I have kept up with my medication and have decided to take my doctors advice when I next see him. But I am still considering suicide.

.... I will not and do not believe in living at any cost. Quality of life has to have meaning. I'll continue so log as I am still me and its is still possible to remain so. But if I come to a point where I hate myself or what I've become----I will let go.

LuciB, I am sorry you are suffering in the same way. I've been living with this for several years now and nothing is helping me. I play about with my dosage as I feel I must., Sometimes I am on two pills a day..sometimes 3..and when I have to ( because my symptoms get much worse) I top it up to four pills. But nothing resolves anything.

I've come to understand our feelings are tethered to our disease. How we feel determins our symptoms as much as our symptoms determine our feelings..or so I sense. My depressson, irratic mood swings and deep sadness comes from the imbalances within my body. I am agitated and bitterly unhappy. I lack peace and sometimes I lack hope. How can I live with all that?

I don't like or respect what I've become. I am the terrible caracature of the histerical overly sentimental and insecure female....and I was never any such thing. People now see me in this way, and I hate it. For example, I recently had a diasagreement where I had to confront a stranger over an issue concerning his over charging me some serious money. He was a younger man, aggressive in his manner and tone, and ultimately dismissive of me.

I can usually speak up for myself and do so very well, with cleverness and presence. However, ever since I became over-active I sound and look upset all the time. I did so with him. My words kept running out of my mouth and my body was trembling, even though my mind was rational and I was not bothered about the confronttion. It gave him licence to dismiss what I was saying. He treated me like a foolish middle age woman with a grudge.

My disease had disabled me so I was unable to stand up to him properly ... or walk away feeling better about the issue I was disputing. In fact I was left feeling angry with myself.

How can I live with that?

I am in business. I work alone and support myself. I have no husband or company other than my grown up daughter, whom I see once a week. I have no friends and my mother was abusive to me because I asked for her help----she was never one who respected weakness.

I think we do have to try and accept our new limits and accommodate thier influence. I will keep on trying to do that for as long as I can.

For what it's worth, I suspect our frustrations down to our condition. If I do then I must also conclude my attitude to my disability and discomfort just as tainted. I don't know how we can deal with our reactions properly when we are being this influenced?

If you have love and support, maybe that can help you. I do hope so.

You sound kind. You sound like me, a worthwhile person. I wish you well and ease. I wish you peace, and peace of mind.

(((hugs)))

MK.

Hullo dearest 'bransnana'..

I thank you for replying to me and for the advice.

Yes, I have tried carbizamole..only the side-effects were as bad.

Actually, I've come to live with them. I too experienced the same type of reactions you describe. However I now hardly notice them anymore.

And I am sorry to hear of your own discomforts..

My doc says he thinks the treatment is not working anyways. He's advicing the iodine solution.

I can only hope its a better road.

Take care..

MK.