Thyroidless - Radio Iodine - 5 years WITHOUT Proper Hormone Replacement & now Unreasonable - help!

This will be my third post here, as I've commented on other's post. But I felt that I needed to start a post dealing specifically with "PERSONALITY CHANGE" and what it's done to us. Us is my husband and I.

Hello everyone, I'm a wife here about my husband. When we married 10 years ago we were the very best of friends. Our first 4 years were like an extended honeymoon that would not end, truly. HE was my best friend. Now, I'm trying to be his. Because of what the Endocrinologist has done to him, our HAPPY marriage is OVER!

Before my husband was treated with Radio Iodine at the age of 54, he was diagnosed with Hyperthyroidism. Having most of the symptoms and especially heart palpitations, anxiety, hair thinning, feeling weak, tired, listless and not sleeping well at night. He was sent to an Endocrinologist and at first they prescribed him carbimazole. OH - MY - GOODNESS! It was incredible! He was SOOOO HAPPY! No more heart palpitations, no more listlessness and he was all over me, loving me, playing jokes on me, acting like a bad and gorgeous little boy. He was a really good guy before this, but down at times, tired and fretting about his heart. But after that prescription it was like he fell in love with me all over again. This man IS my soulmate - he felt the same about me.

Today... we are separated. You see, they called him BACK IN - and did some test on his thyroid gland for tumor or cancer. He tested negative, NO such thing. He explained how great he felt on the carbimazole. YET - they talked him into coming in and allowing them to do a Radio Iodine treatment. When he told me about this, I wasn't sure why they felt he needed this? I mean, he was feeling great on the carbimazole - so why mess with it. Because my husband feels self-conscience about me being on his doctors appointments, I never got to sit and hear the things they were telling him. Anyway, they some how talked him into this procedure against my better judgement. I said to him, "I don't know about this, I mean, you need your thyroid, I'm sure God didn't make it for you just to decorate the throat? Can't you get a second opinion?" Being on NHS - he didn't feel that he could.

Trusting THEM - these specialist, he went in for the procedure. As he was passed the Lead boxed POISON - he was told, that he would be on Hormone replacement for the rest of his life, but they would be able to control it better. Blah blah blah... he popped the pill.

Almost 2-1/2 years went by, NO HORMONE REPLACEMENT GIVEN!!!! He had to BEG his GP to give him something because he felt awful! He was then prescribed Levothyrodoxine 25mcg - that's it! They took a TSH test and told him he was NORMAL!!!!!!!!!

My husband, my wonderful DREAM COME TRUE SOULMATE - began to change gradually. At the beginning of his changing, I didn't relate it to the procedure because I wasn't familiar with what it meant to have your thyroid killed. He became this short impatient, snappish, irritated, easily roused to anger, argumentative over trivial things, accusatory, bringing up old matters long over. Hitting below the belt in arguments. Depression, anxiety, easy to cry, emotional, cold, bitter and even worse, accusing me of not loving him, not respecting him.

Through it all, he's gotten more and more cold towards me. Accusing me of things I've not done. And basically acts as if he hates me. Two weeks ago we had a fight that lasted 4 straight days. It was a nightmare.

I left distraught, devastated and I still can't stop crying. Living with my step-daughter for the time being, the more we talked the more I realized all of these changes and behaviour came AFTER the thyroid procedure. We went and started googling! BAM - and found the source of what's happened to my husband. Now, I'm DOUBLE devastated! All this time I thought I'd been fooled, duped and didn't really know him, when in truth... THEY - his Endocrinologist DESTROYED my husband!

5 years after the procedure - he's REALLY REALLY BAD! Paranoia, suspicious, non-stop arguing, will not hear ANYTHING I try to tell him, including that it is his Thyroid being removed that has done this to him. He's now diabetic and was not before. He has high-blood pressure and didn't before. He's having weight gain problems and didn't have them before. His skin is DRY and flaking alot - little dry flecks of skin are always peppering his t-shirt. The heals of his feet are HARD with DEEP cracks, wasn't that way before. He CANNOT sleep at night, and has gone 26 hours up until he finally came to bed for sleep. He has to drink to get any sleep, so does it excessively. The muscle mass he once had is wasting away.

I'm begging, begging PLEASE... is it TOO LATE, to help my husband? I mean, 5 years now - his memory is also bad, there are so many symptoms now - and he is COLD. PLEASE... someone how can I help him?

One thing I have sought, is an attorney to see if I can bring charges against his Endocrine for negligence!

I've begged his GP, the Practice Manager and NHS for immediate HELP for him. His GP has set up a blood test appointment, but I explained that this is urgent, the BLOOD test is not until 30/10/2013 he NEEDS help NOW!


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23 Replies

  • hi there maxi , what a profound synopsis of this condition and the abysmal treatment that is currently given by 'OUR NHS AND so called SPECIALISTS ' to the proper treatment ..... the only comfort I could possibly say to you is always remember who your hubby was AND NEVER FORGET IT its the condition and THE MISS-TREATMENT that seems to have got you both where you are now heart goes out to both of you .....if nothing else it may be a thought to log this down and send to someone on this site so that they can report this to whosoever might listen to stop this reacurring to anyone else ..... just always remember while you are going through these rough times so is he ----- and we all on this site WILL ALWAYS BE WITH YOU ....even if it is only with empathy ...... [ if you ever need a sounding board to let off some steam please p.m. me ] ....our thoughts are with you ...... LoL alan kim & the nsllo

  • Thank you so much. We've been separated for 14 days now. I know he must miss me, but when we text, email or talk, he's angry angry angry, going on and on about things that have not been an issue for years, little things that he's blowing waaaay out of proportion. I'm suffering from anxiety, constant stomach upset, nervous to the point I fear a breakdown. He won't let up on me - it's constant and non-stop. If I turn my phone off to ignore him, and I finally do reply - he uses that against me.

    I cannot reason with him at all. He's PURE ANGER - HOSTILITY and ANGST. OH my goodness, each time we speak to each other, he's ripping my stomach and heart to shreds. And I KNOW it's the Thyroid, my husband WAS ONCE a GENTLE loving, kind man. He HATED to argue - and had a thing that if I were upset about something and fussing, he would try to make me laugh. He always said, "If you laugh, it's over - gotta let it drop, all bets are off." And I always, ALWAYS ended up laughing, because he'd do the most daft things that I'd have no choice.

    I miss him so much... I miss him so much! It couldn't be worse if he were dead. This is far worse, because this MONSTER they've created... is NOT my husband. I'm trapped in this movie, Invasion of the BODY SNATCHERS... and I can't reach my husband. The last two days, no matter what, to everything he says to me, I just say, "I apologize, for whatever I said or did to make you feel this way, I'm sorry. Forgive me... I love you, forgive me." Over and over... softly, gently, but it doesn't seem to be getting through. Everytime there's a text from him, or an email, my guts knot up and cramp and I feel sick because I know it's more of the same.

    I pray that I'll hear back from the solicitors I've contacted about it. But NHS seems to be well protected, but I have to try. So now, I'm here and we have to wait until the 30th for his blood tests, but that doesn't mean they're going to treat him as he needs to be treated.

    I'd rather have the most horrendous nightmares twice a night for the rest of my life, than to continue on suffering through this. I can wake up from a nightmare and stop it. I can't get this to stop... it won't go away - it won't go away.

  • oh how I can and do feel for you both ...... if the only thing that I can offer you is empathy , understanding and a sounding board ----at least it may help ---- please use it --- and ALWAYS REMEMBER YOU BOTH LOVED AND STILL DO EACH OTHER --- it is this damn miss-treatment that is the cause of this === nothing to do with YOU or HIM ==== HE IS IN A DARKER PLACE THAN YOU ARE ==== we all have serious health worries that we will never pass on to our loved ones that will always manifest in and worry and concern US .....he sounds like a very confused guy and you don't know how to help [ your even more confused than him ] ..... please please try to empathise and try to get through to him that YOU STILL LOVE EACH OTHER AS YOU ALWAYS HAVE .....and you always will ....<<<hugs and thoughts to all of you >>>> .....hope this has been of help .......xxxx alan xxx

  • It has Alan, oh yes, it has. I thank you from the bottom of my heart. xxxx

  • HI M, it's scary the effect that thyroid issues and the associated lack of proper treatment can have on our lives. Well done for putting the topic up on behalf of your husband, and for not reacting with anger to the situation - you're obviously a very caring and understanding person.

    We each i guess end up having no choice but to play the hand of cards we've been handed. There's even good reason to think that we get handed these cards for our own good - that they push us into situations where we have to enage with (albeit tough and potentially unpleasant) life lessons we need to learn.

    We have limited control if any on what this hand of cards will be/on the broader flow of our lives, so our task in effect is to learn to treat ourselves and others as wisely and as compassionately as we can manage. To teach, and to learn how to get through it all for the greatest good. Without taking too much on to ourselves in the form of feeling more responsibility for others and for this flow than we can ever hope to deliver on - it just sets us up for a guilt trip.

    The same despite his illness and situation applies to your husband i guess. The lesson i seem to have been taught by my own very long road of thyroid related life issues is that we're each required to take responsibility for ourself, and to with courage and compassion play the game as best we can.

    My issues included loss of career, many years of miserable fatigue with illness after illness and inability to work effectively as a result - luckily my own family stuck solidly with me, and by now (almost 20 years later) i seem to have made it most of the way back out of the maze. A very close shave - i got to the point where i was developing life threatening auto immune illness and had a cancer.

    My birth family unfortunately never got the message/were not motivated to try to understand the situation/never stopped cranking up the pressure by hysterically trying to force actions on stuff they thought i wasn't doing out of fecklessness/laziness. I lost many friends and opportunities that way too.

    Not only can nobody hande our recovery for us, we'll be lucky if many of those around can even muster enough perspective on the situation to not attack us for e.g. no longer living up to the plans and expectations they had for us. I experienced passive but very clear anger that I wasn't living up to the plans the family had for me, which spilled over eventually into some sort of marginalisation. The bet was withdrawn and placed on my younger brother - who is still trying to live up to the its demands even though both parents are dead.

    There's potentially quite a lot that might help your husband - guessing, but likely stuff like working to sort auto immune disturbances, eliminate problem foods, supplement deficiencies, heal the gut, calm his mind state, and improve his thyroid replacement. Maybe even organise a thyroidectomy if it proves that the remaining thyroid is past healing and by acting as e.g. a focus for auto immune problems is causing difficulty.

    The overwhelming message of this site though is that barring geat luck it probably won't happen unless he (even with lots of help - provided that is he wants and values it) leads from the front. Nobody can live our life for us.

    Pardon my presumption in what's a largely private matter, but one view is that while it's your role to do what you can to encourage this, he's after that responsible (despite being ill) for his own life path. There's lots you can do to help/to support him if this happens, but much less if not.

    He's no doubt feeling a little angry and resentful at the hand of cards that life has dealt him, and judging by the Facebook stuff possibly indulging in a little make believe too. The bubble of his life expectations has no doubt been busted, which quite likely explains some of his behaviour.

    The first step in any of this is perhaps to get over it - at least to the point where the anger and dismay no longer leave us paralysed. To try to see the situation for what it is, and to develop the ability to rest easy with it.

    Whatever happens, and no matter how positive the outcome there's rarely any going back to where we were - but there's equally the possibility of very wonderful outcomes we would never have anticipted....

    There's a well known little book by a Buddhist nun (an American lady that suffered some very hard early life experiences) named Pema Chodron and titled 'Start Where You Are' that sets out some perspectives on working on our mind state and view to help ourselves to cope in situations like this.

    Good reading for both of you maybe, and it might spark something - but finding a way to have him to read it in the right frame of mind is likely the hard one to pull off.

    Good luck with it all


  • Thanks Ian, my plan is to be completely supportive of him even though he wants nothing from me. He's even mentioned divorce - which it may very well come to that. But I can't NOT fight for him. Sadly, he's a very dependent type of person, he NEEDS someone - because he does get low, lonely and hard on himself. I told his daughter, even if at the end of the road, he and I don't end up back together, I STILL MUST find a way to get the information to his GP and other doctors in order to treat him correctly. I will never love anyone but him, and I'm willing to do that from a distance. I just don't want him to go on like this, the way he is now. THIS man is not who HE is. I would settle for maybe being friends one day if that is at all possible.

    If it's not too late and he can get on his proper meds... I believe friends is a possibility. But I cannot abandon him knowing what I've found out about this condition. I couldn't live with myself. For better or worse, till death do us part... I said I do... I will... and I am. I meant that. No matter how much he's working me over now - my total objective is to work off in the background to keep the GP moving with him, and not grow lax about it.

    Again Ian, thank you... xxx

  • Wise words from Ian, indeed. Bear in mind that, whilst loyalty is admirable, you also have loyalty to the person you are, too.

    I've been though similar and vouch that things can turn around from terrible but that people only really learn from their own mistakes and not all do this, even in part.

    You need to remain strong and true to yourself also, in order to bear what life throws at you- as it probably will.

    It's very sad that family, legal system,other lovers and fate will often gang up on the innocent party with vigour- and I hate to see the innocent suffer, whatever the trigger.

    Save something for yourself- you're obviously worth that..

  • just remember that HE loves you just as much as YOU do him .....and if he don't that's his tuff toffee .... where will get another ..... please always remember this is hard and hurting ---at this moment --- BUT BOTH OF YOU HAVE TO TO BE SINGING FROM THE SAME SONGSHEET to get out of this damn tunnel that your both in ==== you will both be stronger and safer with each other when you get out of this than you ever thought possible ....if you EVER NEED SOMEONE TO SPEAK TO DIRECTLY TO PLEASE P.M. ME AND I WILL GIVE YOU MY TELE NO I am always available 24/7 [ even a sounding board ] ----it sometimes helps at 2/3/4/5 in the early hours .....AND I REALLY MEAN WHAT I SAY !!!!! never ever forget I will be here for both of you .....yooos all can get through this sticky patch IF YOU BOTH KEEP THE FAITH IN EACH OTHER ......<<<hugs >>> thoughts and concerns for all of you ......alan xxx

  • Wow Alan, I will certainly keep that offer nearby - but I would never ring you at that time in the morning, LOL. But I will p.m. Right now, I have to focus on my own health. Juicing, eating right, and exercise - as well spiritual focus and guidance, I need all the POSITIVE I can possibly surround myself with. This is one heck of a fight I never knew I'd be in... but I'm in it for the long haul.

    Cheers Alan!

  • ALWAYS REMEMBER that I NEVER EVER say anything that I do not quantify .......please please please if you need a sounding board ---- YOU CAN CALL ME AT ANY TIME [ the early hours are allways the worst ] I will be here for both of you === we will always get through this AND GET TO THE END OF THIS DAMN TUNNEL ===== TOGETHER ====as in the saying from the film ' you are not alone ' ==== <<<< hugs to yooos >>>> alan

  • Wow are you making me smile and feel good. How motivating and hopeful. And you are right about the middle of the night, so true. I toss and turn a lot. Lay up thinking, begging in prayer for the end of the torture. {{Hugs}} back!!

  • just remember that every word I missive to you is FACTUAL AND I WILL PROVE THEM TO YOU AND YOUR LOVED ONE .... if you take advantage of my suggestion it may well help --- but will never hurt or harm .....<<<< returned hugs from all of us >>> alan kim & the nsllo

  • I felt devistated reading your story so god knows how you must feel to have watched this once kind, caring, happy, loving soul mate of yours being torn to pieces by this illness. The only mistakes he has made is not listening to the voice or reason - you - and trusting that the NHS, and the doctors that work in it, will do the best for him.

    Thyroid problems can, and do, cause mental illness so please bare that in mind when you are dealing with him. It isn't really him saying and doing all these nasty things, its the illness that is depriving he's brain and body of vital hormones (and we all know what PMT and post natal depressions can do dont we girls) and he needs to find a way to get these hormones back in his body - sounds simple but that's the bottom line. The hard bit for you is to get him, and his doctors, to realise this.

    Carry on doing your research, with the help of his daughter - who must be as devestated as you - and try and get the doctor to, not only test his thyroid levels, but his iron, ferritin, B12, Vitd and folates and see what this throws up. Is he still on a very small amount of levothyroxine or has that been increased. He needs a TSH of under one to start feeling any better and all the above vitamins need to be high in range for his thyroid medication to work. He needs to take his medication well away from food or drink and with water only.

    I think your hardest task is getting him to see reason and to stop going down the slippery slope that is drink - which can, and does, make a thyroid sufferer feel worse. He must be made to see the before and after man that he was and now is, could his daughter not help with this, maybe some old photo's showing a happy, smiling, loving person or a heart felt letter asking him to let others help?

    Are you going to be able to persuade him to let you help with GP appt ect because if he does allow this I would be asking for a second opinion.

    I wish you all the very best, not just for your sake but for your husband too as he must be a very unhappy man right now and I salute you bravery, courage, kindness but most of all your compassion - if olny he realised what a very lucky man he was having someone like you fighting his corner.

    Stay strong and ask as many questions as necessary on here to gain as much info as you can - we will do all we can to ease your journey.

    Moggie x

  • Thank you Moggie... Thank you for saying what you have. He has 5 kids, and problem is, only 1 of them is trying to see what this really is. 1 of his kids is believing the things he's saying about me, so she's torn, she doesn't know how the illness works.

    Because of my previous IGNORANCE surrounding the thyroid - I spent too much time defending myself against him when he would go off on me. I didn't KNOW it was his Thyroid, I thought he was being a butt-hole.

    NOW that I KNOW - I'm building my health back from all the stress and depression from it all. OH if I'd only known all of this 5 YEARS ago! Or even 4 years ago when he started really ACTING outside of himself. I never imagined it was his thyroid, even though I was completely IGNORANT of what was happening, I feel like a piece of crap for defending myself and arguing back trying to get him to stop acting crazy! Now he goes back to those arguments, reminding me how I said I would leave if we couldn't get past these repeating fights. How I said I couldn't take too much more of this and do you want me to GO? I'm going crazy now because he won't let that go. Now, I tell him it's his thyroid and he gets angry yelling at me, "Stop effen -(replace with real word)- saying it's my THYROID... it's YOU! YOU'RE my effen-(replace word)- problem!!"

    He is holding on TIGHTLY to ALL negatives... refusing ANY positives or reminders about our laughter, play, joy at finding one another.

    People - I crossed an ocean and left America for this man. I gave up my home and all I had because nothing meant MORE to me than what HE used to make me feel. I'm African-American, he's white British - Yorkshiremen he says, hahahaha, Yorkshireman truly bred, strong of arm, thick in head, roflmbo!!! Laughing I'd tell him, should you really be so proud of saying that? Hahahahahahaa

    Oh I miss him so much... he was my best friend, my very best friend. I would die for him. I simply HAVE TO find a way to get that right meds down him, I won't stop - give up until I do. He ALWAYS knew how very much I loved him, we raced to say it in the morning, and all through the day. I will not let him down, I will not abandon him now when he needs me more than ever, no matter how much he hurts me, I don't care... I won't stop asking for help, I won't stop writing letters, I won't stop bugging the doctors, whatever it takes, whatever it costs... if I could get a doctor to write a prescription and charged me full costs I would pay it gladly, quickly and then get his daughter to get it to him. I will not give up hope - It's just having to endure his anger and harshness.

    But I'm so glad I've come here. Thank you all!!!

  • At the end of the day Maxi he is an adult and no matter what you achieve with regards to getting him treatment it will be up to him whether he takes it or not. He has to want to help himself and if he doesn't accept anything is wrong it could be a battle you cannot win. I have a friend with a similar problem with her husband but not as extreme or thyroid related, she has been trying for several years to get him medical help and treatment but because he doesn't see he has a problem the doctors hands are tied, they can't do anything because he himself has not asked for any help. I wish you all the luck and hope you find the answer.

  • All true - I pray he will once it comes down to it. But as you said, it will be left up to him in the end. Thank you xxx

  • Hi Maxi,I too was dealt a bad hand like many on here. I was raped when I was 8 and believe this could have been the start of my thyroid being put under great pressure. At 21 I had my son and was told I had post natal depression for 5 years.(what a joke) The reason I am saying this is because I went absolutely loopy (off my head). I became very angry, psychotic,depressed,suicidal and distrusted everyone. I lost all my friends,my family had enough and I had a partner who threatened to take my son if I ever left him even though he was cruel to me emotionally because he also thought I was a mental case. I never neglected my son though, but I always felt I was a bad mother and a bad person to be this way.How I managed to hold down a job as I was a staff nurse I will never know. I am now 55 and through all this I did come through the other side. I was only diagnosed 6 months ago but I now know I had severe symptoms for 34 years. It continues like everyone else on here to be a slog and a long journey for the right treatment, but one way or another I will overcome this as I have been a fighter all of my life and always will. My heart goes out to you and I can understand your love for your partner and the deep need for you to want to save him. However he has to want to help himself and you also have to look after and take care of yourself, because no-one else will.Remember you are not alone. Love and prayers Helen x

  • OH Helen, sweetheart - what a nightmare to go through. Yes, I can certainly see that I am not alone. Reading the various accounts and struggles gives me a bit of hope, but I despair as well. My BIGGEST fear that I keep trying to force myself to face, and that is - once he comes out on the other side, getting all that he needs, what if he feels too much has happened, too much has been said and he'd just rather not try again. I'm scared of that. But I'm preparing myself for the possibility. I'm 50 years old, this is my second marriage. My first was a domestically violent one. 21 years in that. Not long after I conjured the nerves to leave, I met my best friend, my husband now. So I feel overwhelmed by this happening to me, this time having to suffer verbal abuse and accusations - coming from a man I absolutely adore.

    I am taking care of myself. Eating right, exercising and taking correct supplements. Trying to fortify myself to continue the fight, but also - getting my frame of mind prepared for the possibility that even after everything and his imbalance is corrected, he might not want me back. That will be the final break to my heart, not going to pretend otherwise. I have to face it because it just may happen. If so, I know me - and I know I'll never love another man again. I simply could not take what would be needed to build another relationship. I'm also old fashioned in my beliefs and morals. I don't, won't and will not bed hop and date just to have company or a man - not made that way. Soooo - this is the reason I have to fight to the very end, and I pray the end is not a bitter one.

    Thank you Helen, I would love to hug you right now. Hug you for coming in and sharing your own constant ongoing hell. {{{ HUGS }}}

  • oh Helen what can I or anyone else say ..... my heart feels for your what you have been through ---- but my head has TOTAL respect for how you have and are getting through YOUR problems ----- and you are still trying to be there for others ....... my thoughts , love , respect and prayers WILL always be with you LoL alan kim & the nsllo...

  • I'm so sorry you are both going through this terrible time. My heart goes out to you.

    For what it's worth, I found that, as well as close friends and counselling being a wonderful support, the book, 'Love Must Be Tough: New Hope for Marriages in Crisis' by James Dobson, was the best I've read and invaluable in dealing with relationship breakdown.

    Know that you are not alone and we are all here for any support we can give. xx

  • Will find that book, thank you - heading to Amazon now!

  • love, hugs and prayers to all in their own personal struggle with this terrible illness.xxxxxxxxxx

  • Exactly - we're all in this together, together is the best way to be. xxxxxxx

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