[lauren]

#1019219

Hi, cant beleive Im back on here with the same old story. I have sent private messages to some of the moderators and they have been amazingly encouraging and and informative. But I just thought Id go public with my story. So here goes….

Had RAI for Graves Disease in January.( Had Graves for many many years maybe over 20 and was diagnosed with Graves for ten years, and was on and off Carbimazole duirng that time. In that 9 years I had stable levels for about three months only.) After the RAI I went Hypo after 2 weeks so they started my on replacement but then I went HYper very quickly after two weeks, so then they stopped the Thyroxine and I went into range for one week and then five days later crashed HYPO hell ( TSH of 28!!)

Its been a nightmare for the last two years. Have almost lost my mind with Anxiety Disorders, OCD, Depression and all the physical symptoms that go along with it. Have only been able to manage part time work but no socialsiing so feel very isolated with lots of time to think, think, think. But I have tried to keep myself busy with volunteer work and night classes ( hard when you feel so strange and anxious). But the whole experience has left me feeling very damaged.

Anyway, finally three weeks ago my bloods went into range FT4 12.5, TSH 3.2 and FT3 4.3. This is on 128mcg Thyroxine per day. Then one week later FT4 12.7, TSH 2.1, FT3 4.5. I was pleased as I was actually converting well and felt like I was on the road to recovery.

But do I feel better, in some ways yes and in some ways worse. Its so hard to know as the synptoms change frequently. Some hours I have extreme nervousness and anxiety about anything and everything goes but then it comes back. But now the intense nervousness has kind of gone, in fact Ive been able to cut my Valium down. But then I still dont feel normal or calm, Just a weird void feeling. Horrible.

Then this week, latest tests are FT4 12.3, TSH 1.8, FT3 4.3.
so I thought that was a bit strange that my FT3 is doing well but my FT4 is low.

Then two days ago I was so depressed about this whole thing, my life, my nervous breakdown,the social agoraphobia and the complete and utter chaos and madness it has caused to my life plus the never knowing how I will feel one hour to the next and feeling not myself ever ( except for some very fleeting glimpses, which have kept me going. Where I feel strong and calm and normal) But Im.constantly assessing how I feel and working it out how I can get back to being the person I used to be – I cried that day hysterically for over six hours. Iver never felt so scared and alone. I am trapped. All the way through this ive thought it was my thyroid but what now, if my numbers are in range why do I still feel like im on shaky ground. I beleive i have Post Traumatic Stress Disorder. I have never cried so much in my life as the last two years. My parents , who I am staying with dont know what to do anymore. My mother has got so ill watching me suffer in this way.

I know that I need to stabilise at a level before my body can heal but Im so exhausted of never feeling calm or happy.
How can I rebuild my life when I have no faith. How long will it all take.

Sorry for ranting , its just that having these symptoms for over 20 years and never knwoing what it was and then now finally having definitive treatment and still not feeling right and left me reeling. I worry that the times in my life when I was full of life and excited and kinda joyful were just because I was running Hyper with Graves and that now I dont have a thyroid my whole personality has been changed.

Does anyone have any ideas why I still dont feel better.
By the way my Iron levels are very low so Ive started taking Floradix Iron supplement.

Thank you for all your support. It really helps to keep me going.

Lauren

[ely2009]

#1070185

Lauren,

Have you read The Thyroid Solution by Ridha Arem? It goes a lot into the emotional side of Graves. It was very helpful to me.
I’ve only been dealing with this since December of 2008, so I CANNOT imagine what you have been going through all these years. My relatively short exerience with GD has seemed to last forever. I’ve said many times before that the emotional part has been the hardest. I just wasn’t myself. I’m sorry that I don’t have the answer for you – I’m fairly new to this and just figuring it all out. But I’ll say ba prayer for you. I dod read somewhere that PTSD can occur after/during GD. I found that interesting, not good, but interesting. That just shows how this disease can affect that part of our brain.

Hang in there,
Emily

[RhondaG4]

#1070186

Lauren,
I can relate to what you are saying. I have PTSD even before my GD Dx. Which of course didn’t help much in getting my dx, and I suffer from Anxiety beforehand also from my stroke, so I can relate somewhat. They were contributing my high heart rate and other symtoms to left over effects from my stroke and to my anxiety. I haven’t gone thru this as long as you have, but can understand your frustration. Just getting the Dx for me was a God send. It gave me some hope that well at least they have found something they can treat, it isn’t all in my mind, and even if it takes a while, at least there is something they can do about it. I found your words about feeling "damaged" interesting. Somehow it rang true for me when I read it.

You probably have a phych doc already that is helping you deal with anxiety and OCD/Depression. I was told recently that they have some meds that work really well with PTSD.

I also wanted to mention maybe getting your Endo to run a "female" hormone panal? Or going in to see a GYN that could run it? Yes in fact you have the GD, but maybe your other hormone levels are off as well. I’m no doctor by any means. But this is your body and your life, if you think something else could be at play making you feel ill, then don’t stop looking for a reason. If I would have given up and just accepted the idea of my high heart rate due to my stroke and that is why I was having headaches also, they wouldn’t have found the GD with me, or at least not when they did. It could have continued with me until the GD did serious damage.

I hope this helps you some. Feel free to PM me anytime. Your in my prayers. Hugs Rhonda

[hyperm]

#1070187

Hi ,

Wow you have had a very hard time of it. As someone who has suffered and still do – especially at this moment from anxiety I completely sympathise. Firstly, its not the main reason but low ferratin (iron counts) results in anxiety, feelings of being strange and spaced out.

The anxiety has been with me since I was attacked when I was 14 by 3 girls. It comes and goes. Since the TS the panic attacks have been awful so I can completely appreciate how you are feeling with trying to battle on. Have you ever read "self help for your nerves" by Dr Claire Weeks. A life saver for me….even now like when I had to walk out the supermarket a few weeks ago .. I knew that it was panic and I could "float" by the attack until I got to the car.

After the TS i most definitely have PTSD – I still have flash backs and if I hear my mum or husband speaking about me collapsing in the house etc.. I need to go out of range of their conversation. It has had a huge impact on my activities of daily living and confined me to the house most days or I have to take diazepam to get over the front door. Lauren I have been where you have been and still are sadly. I had a complete breakdown in my final year at uni..I found a fantastic counsellor who helped me to get out the emotions which were like the mangled balls of elastic bands inside a golf ball – you getting me? I have sat up at nights sobbing – sitting in a bath fully clothed… There is light at the end of the tunnel – I promise you! If I can come through it so can you! You don’t say what age you are?

OCD I know about from working with patients….its something that needs to be treated at a higher level such as a pyschiatrist – my friend has been ill for many years with this condition and its very sad to watch someone go through that – however, with the right help she is getting better.

Please PM me if you feel the need. In the meantime I am praying for you.

lots of love and hugs

m xxx

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