I need some serious help right now, never been so down! :'(

After having my radioactive treatment in September I am now on 150mg of levothyroxine, after years and years of treatments of Graves' disease I feel like I'm going mad.. I used to feel what I thought was normal, I'm not an anxious mess, anxiety attacks, panic attacks, depression, I will not leave the house unless someone is literally dragging me out or I know I have to go to an appointment at the hospital but even then I'll be up for hours trying to pluck up the courage just to go.

Things are fine if I have an alcoholic drink on the anxiety side, but I stopped it off because when I was hungover or had a few to drink I was questioning my own existence, and I promised myself after one of my best friends killed herself when we were 13 that I would NEVER Evver get so low to have those thoughts...

I've started these antidepressants, martizipone or something? 15mg, which are helping with sleep with I am sooo thankful for! as I'd been up for days before.. and I am not as tearful when someone simply just asked me 'are you okay?' But the anxiety is ruining my life, I feel as though I'm stuck in this rut that's impossible to get out of.. I haven't been at work for nearly 6 weeks now but I can't bring myself to go to work because of the panic attacks of going there and being there.. I have this routine planned out to help me.. but it's still nearly impossible for me to leave the house :'( my fiancé has left me because of all of this and says he wants to help and come back to me now but I know I need to sort myself out, myself.. Has anyone got like this? :(

I've only just turned 21 guys, I shouldn't be like this :(

Does anyone have any tips on how to help me out? With diets and lifestyle.. Or just to give me a pep talk! I feel as though people think I'm attention seeking but I've brave faced this madness for years now and I feel broken now :(

Just want someone to know how I feel to help me out a little :'(

12 Replies

  • Hiya. I'm so sorry to hear you're unwell.

    I have the same problem leaving the house. I can do it if I'm meeting someone or have an appointment but it is a struggle and if I'm home on my own I'd never choose to just get up and go out alone. I know my anxiety gets worse when I reduce my levo so I'm sure it's connected. I'm not an expert on Graves' - I have Hashi's - but from my limited knowledge it sounds like your dose may be too low or maybe levo doesn't suit you.

    Do you have your latest blood test results and ranges? They would be very helpful.

    Keep coming here to ask questions and gain knowledge and you'll feel better eventually. It just takes time. And focus on your own health, don't worry about your fiance. He has to make his own decisions about how he can support you. If this is too much of a challenge for him, how can he stick by you through your life together? He needs to work out his own plan too.


  • Well I've had a blood test on Thursday, I've never had print outs or noted my ranges or anything because my consultant overloads me with so much information and it's hard for me to even speak sometimes! :( but I've got a letter I've wrote for him so then I can't forget to say anything and actually try and get somewhere and just hope he wants to help me out a bit more :( xx

  • Sure, try not to worry about taking it all in. The results themselves will be helpful.

    Do your tests come back to your consultant or your gp? If you had a test Thurs, when they're ready, ring up and ask the receptionist if you can have a copy. They may have to clear it with the doc first but they can do you a printout to collect. You're entitled to it.

    Once you know more about what the tests are telling you you'll have a clearer idea of what questions you want to ask the doctor. x

  • Mirtrazapine ? I was on that for a couple of months, it put my anxiety levels through the roof, though like you mentioned it helps with sleep. (pre thyroid diagnosis) I couldnt cope with it at all, and got it changed for a different AD + sleeping pills, which then caused other side effects.

    One of the symptoms of hypothyroidism is depression, while I have no idea if you need to be on AD's or not, only a phsychiatrist can advise you of that, I do know that if your depression is caused by being underdosed with thyroxine then AD's wont make much difference. You need to treat the cause!

    If you are due blood tests to check your thyroid function, then get them done, post your results and someone will be able to comment if you are on enough or if you should be asking for them to be increased, or if you should be asking for a T3 trial. If you are under a psychiatrist, then ask them about T3 for treating depression, pointing out your thyroid doesnt work!

    ( I didnt recover from depression until I was on T3)

  • Isn't it funny how they affect people differently? I was on fluoxetine. Though it isn't usually the best choice for anxiety - some people feel much worse on it - it helped me enormously and even made me sleepy so I ended up taking it at bedtime instead of in the morning.

    Everyone is different and sometimes ADs can help us through a transition but as you say they are not a substitute for optimum thyroid treatment.

    I think jrosebud if you were awake for days, feeling so low that you were questioning your own existence and self-medcating with alcohol, you're perfectly entitled to help with these feelings, and if you're feeling a little better on ADs then that's good news. It is always a concern here if people feel their thyroid problems are being ignored and they're being misdiagnosed with depression instead. No one wants you to be fobbed off. If the meds are helping you don't make any sudden changes to them but if your anxiety is worse rather than better you need your meds adjusted.

  • Hi, you are suffering aren't you. You need to seek help now. Don't put it off go to your GP, this is agoraphobia. I had it years ago, the results of stress and medically prescribed Lorazapam. Getting off these was difficult.

    You need support from your GP and maybe other services. Don't feel guilty or inadequate. It's a real phobia and I got over it eventually one step at a time.

    Don't push yourself to much it won't help it will just reinforce your fear.

    I started by going a short distance then going back home. Always saying to myself you can turn round and go home. Going on a bus so many stops and still saying, you can get off at any bus-stop and go back. Just going down the garden path, round the block.

    It's hard I know but it is curable, don't give up.

    I used to take my children to school and dread leaving them at the school gates. The journey home with perspiration trickling down my back and the urge to run to get indoors was a nightmare, but I got there.

    So can you.

    Accept it's a problem, don't feel guilty, seek help and take the first steps to beating this.

    You can do it.

    Sending a big hug.

  • Thank you! I do need a big hug hahah! it's so sad but I'm even proud of myself if I leave my room, it's gotten so bad! Half the time when I'm out and done it I'm okay, one morning the other week I just got up, got dressed, walked to the shop and back (it's just literally a 2 minute walk away) and I'm fine for the rest of the day I feel I could take on the world and think 'yes I CAN do this!' But then the next day, just to get out of bed, to go to the loo or the kitchen to make some food petrifies me! and I have nothing wrong at home, at all! to try and get an appointment at my GP is like winning a small fortune on the lottery, after being prescribed the AD's I have a follow up appointment next Tuesday to see how I'm feeling so I'm still ringing up until then to see if I can get an earlier appointment.. she has also referred me to some counselling - I already have counselling from a Macmillan nurse but she says herself she doesn't know much about thyroids and my treatments, she's just there for support from my ovary opperation, but that's a completely different story! (I realise I'm rambling now haha)

    I just have different people telling me different things and I know certain drugs I can't have because of other treatments and a whole load of other things haha! just feel like I'm stuck :( and because for sooo many years I've been over, under, then told I have graves and then having the Radioactive iodine, it's confusing for anyone if they haven't gone all the way through it with me haha!

    I don't see my consultant (I'm not too sure who it is tbh) I see their specialist nurse, and he bends over backwards for me.. Or seems like it anyway haha, he just tells me to trust him and he's going to get me normal, and I know it takes a loooong time, but I think because I'm feeling so low I'm just not seeing the light at the end of the tunnel like I used to! :( xxxx

  • You have been through a lot for someone so young. Medication and hormones can play havoc with our bodies and minds. Just remember that and keep fighting. Just don't feel guilty it's not your fault. There is a light at the end of the tunnel. Take all the help and support you can.

    Another big hug, xxx

  • After graves disease and rai its likely your body simply cannot function on low thyroid levels ...old swedish research showed that graves disease senstisesvthe body to such high levels of thyroid hormone that after rai or thyroidectomy you need a far higher dose than doctors recognise

    also i suspect all your vitamin and mineral levels are rock bottom

    so my gut feeling is take a really good multi vitamjn at lunchtime and last thing at night and slightly increase your thyroxine dose every 4 weeks till you feel a bit better

    you might find you will do better on natural dessicated thyroid meds and if you PM me i will tell you where to get them from

  • I suffered with anxiety for many years and it eventually developed into agoraphobia. I worried that I was getting like the women in my family who also suffered and there was no way I would be like that. I loved life too much to be kept out of it. Strangely, I was diagnosed with hypothyroidism and it would appear I had it for years, possibly 17 years. Once treated, I started to feel like I could do things without constant fear and eventually I have become almost normal (Im afraid the memory of it still haunts me and makes me worry). I would say you are undermedicated. Check your results and make sure you either take more or a different type of medication. I am on purely T3 now. I feel fantastic apart from tinges of depression once the amount needs increasing. Good luck and dont ruin your life over it. Be positive, make sure you will do anything to improve it. I started getting it in my late 30s and I feel cured now but Im 56. Too late to pick up some of those pieces.

  • Bless you petal - my heart goes out to you. Being young and ill particularly when you've always been fit and healthy is a terrible blow. Big hugs all the way.

  • My daughter will be 21 next month. For her whole life I believe that she has had thyroid problems, but her blood tests are always normal. She has suffered from anxiety and was diagnosed with clinical depression when she was 17. She used to self harm, and could not go out on her own. I have had to rescue her from the local shop in the past because she panicked and just sat on the floor in the shop...couldn't move because of the intense fear.

    She has had counselling and CBT.

    Her illness was such that she could not cope with the simplest of tasks. Her bedroom was a tip, but she couldn't cope with clearing it. She could not cope with me offering to help. It was all too much for her. She was gaining weight too. Much like the lovely girl in My Mad Fat Diary.

    The reason that I'm telling you all this is because you WILL get through it....just like my daughter has. She is now taking T3, and her life has changed. She CAN go out on her own. She drives. She goes shopping. She runs her own business. She has decided to have weight loss surgery (scary for me and for her, but we hope it will proved her with long term health benefits).

    Your hormones are shot to pieces at the moment. The thyroid controls so much of what goes on in our bodies. Hopefully, you well be put on the right medication, and you will start to feel better.

    You are right to write everything down. Is there anybody that could go with you to your appointment? Maybe to help you remember what is being said, or to write some notes for you?

    Just remember that your current situation should not be long term. Once your medication is right, you will be able to conquer the world!!

    Don't give up, and don't lose hope. Thinking of you. With love from a mum. Xxxxx

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