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Zingara
15-05-08, 12:41
Hi....I wrote a few weeks ago about all my problems...I had a total thyroidectomy eight months ago now, and since then my life has been a disaster area. The irony is that physically everything went very well. I had a very large goitre (a swelling of the thyroid gland, in the neck) which affected my confidence badly. Basically I had to wear roll neck sweaters all the time, or large scarves in the summer. It caused me a lot of distress, and I got a lot of hurtful comments about it, because it was visible even through my jumpers. I kept avoiding surgery, though, because I was terrified of it. Anyway, early last year it began to grow even bigger and an extra lump appeared just above it. I endured a terrifying week while tests were done, the consultant telling me it was likely to be a cancerous lymph node and I would need to undergo a five hour cancer operation. I had an MRI scan and was told that the extra lump was just thyroid tissue. I then went to see another surgeon in Cambridge, and finally had the operation in September. I was originally supposed to have it in May, but it had to be cancelled because I had an ear infection.
The operation went very well, but since it took place I have been terribly, desperately overwhelmed with emotion. I cry about it nearly every day. I have developed an intense nostalgia for the goitre (which I hated!) and for my stay in hospital. I left hospital a day early because I had a sudden intense desire to get home, and then got stuck in a terrible traffic jam on the way home, which brought on an overwhelming panic attack. I had to go and lie down at a Travel Inn at the side of the road. When I finally did get home I was overwhelmed with the most desperate sense of anticlimax you can possibly imagine. I also could not stop blaming myself for leaving the hospital a day early. On one level I knew it was trivial, but somehow I could not stop feeling that somehow I had 'spoiled' things. I still have this feeling now, eight months later.
Everything about my operation is emotional for me, I can't look at photos or listen to music that I listened to then without crying. I can't take any pleasure in having a 'normal' neck, which was the one thing I wanted so desperately before the operation.
I also have crippling anxiety attacks and attacks of IBS, which take the form of bouts of diarrhoea, which is embarrassing and unpleasant and makes it difficult for me to be spontaneous. I hyperventilate a lot and worry that I will be sick when I go out. I have a poor appetite and am quite thin.
I can't work at the moment, despite being well qualified (I am 29, have a law degree and a Masters in Criminology). I'm not able to put any of this to any use because I am nearly housebound with anxiety and distress.
I have gone on a bit, I know, but there is a lot to tell! What I am hoping for is that someone will be able to relate to this weird, and very distressing, post-operative 'grief' and nostalgia. I have talked to a counsellor about it but she didn't seem to understand at all. Please help me, it's unbearable to feel like this.

LindyF
15-05-08, 12:55
Obviously this surgery and removal of the thyroid has messed up your hormones, I assume you are on some type of hormone medication it could be that your medication needs reviewing there may be an alternative that might work better for you. xxhugxx

Zingara
15-05-08, 13:14
Yes, I'm on levothyroxine.... At first my blood tests were normal, then a week ago they came back abnormal and the doctors are a bit stumped. Basically my hormone levels are normal but my TSH (thyroid stimulating hormone) is quite high. They don't know why and can't do anything much about it, so I'm on my own with it! Whether it's linked to all my problems or not I really don't know.

LindyF
15-05-08, 13:24
Samira I would absolutely ask for a second opinion of results come back showing a problem it is your right to know more. Do call them and request a second opinion please. xxhugxx

samc100
15-05-08, 13:45
Hugs and please do as Linda F says and see someone about this.

Print off what you wrote on here if you think you'd get there and not go into enough detail on what is happening to you. I think you can get help for this but they need to know the situation.

It all sounds horrible - so good luck and please keep posting to let us know how you are doing.

Sxxx

helenclaire
15-05-08, 14:00
Hi Samira,
I also think you should go back to the doctor and get this sorted out,
the thyroid controls our hormones so if it is not functioning properly can cause all sorts of symptoms.
I suffered thyroid problems for years then a couple of years ago i had radioiodine treatment which basically killed the thyroid, i too had a large goitre which has now gone and i have blood tests to check the thyroid function.
I have to say i am pleased i had it done as it got rid of the goitre but at times i feel very hormonal and also it looks like i am now going through the menopause due to the treatment which i was not informed could be a side effect.
My blood tests show that my TFT fluctuate so its hardly suprising that we get emotional and anxious at times.
Speak to your doctor i am sure there is something that can help you feel better.
Take care
Helen

Zingara
16-05-08, 12:27
I really hope you're right...thank you all for your help. I really am struggling at the moment...the anxiety and the physical problems are bad enough, but what I really find impossible to bear is this awful heavy sadness that seems to sit over my heart! I don't know if I'm making myself clear, but just being able to write it down helps. I really feel as though the best of my life is over, as though I'm living in a perpetual state of 'after the operation'. I really do try to do all the things that are supposed to help, I try to keep busy, I've even started an Open University course, but I find it hard to get any real enthusiasm for it, I seem to be emotionally stuck in the past. All sorts of little and insignificant things make me cry.
My fiance has been very supportive and helpful, he is a very kind person, but even so sometimes he gets a little impatient with me because he can't understand why I can't move on, why I keep harping on about the past. To be honest, I can't really explain it myself. I worry that I'm becoming a burden to him. Likewise I spend a lot of time talking about my problems to my mother...she's generally very good to me, but occasionally I can tell she gets sick of me going on about it. So I try to keep it to myself, and try not to let them see when I feel like crying. I feel very isolated, because no matter how much people love and support you, ultimately you're on your own with it. Or at least that's how I feel right now.

LindyF
16-05-08, 12:29
You should print out everything you have written on his thread and let the doctor read it, he might just then realise you do need help. xxhugxx

Zingara
16-05-08, 12:40
I think I will... I'll also try to get this levothyroxine sorted out once and for all! Thanks for all your help.

Zingara
18-05-08, 18:18
Hi...went to see my counsellor again on Friday....not much help really, as she seemed a bit stumped as to which of my problems are physical in origin and which are psychological. She said my anxiety, tearfulness and agitation could be due to my high TSH but could also be a simple anxiety state after the operation! I told her about my confused feelings about my operation and my goitre - at first she was quite understanding and I felt better, but then out of the blue she said I might have Body Dysmorphic Disorder! I looked it up on the net when I got home and it doesn't sound at all like what I have - felt quite depressed at being misunderstood yet again!
The doctor has altered my medication and put me on 25mg more levothyroxine a day, so we'll see. It's sooooo frustrating not knowing why all these upsetting things are happening to me.
Today I felt all right most of the day...my mum came round to see me and stayed all afternoon, but as soon as she said she had to go I flared up with panic and anxiety...as she drove off I was in tears at the thought of being on my own, even for two hours until my fiance gets in. I used to relish time on my own but now it panics me. I've just got another attack of IBS and I'm shaking all over. I'm supposed to be going to work tomorrow morning as well. Last time I went was a week ago on Friday and I ended up having to go home in tears, so I'm not feeling too positive about tomorrow!
Sorry to go on, but if I don't tell anyone I'll explode... and I feel like I have to give the people around me a break!

smudgie
18-05-08, 18:23
Hi Samira

Im sorry your going through such a hard time of it at the moment.

Ive read what everyone has said and I dont think I can add anything else, I think you have been given good advise.

i just wanted to send some care
love
smudgie:hugs:

Zingara
18-05-08, 18:55
Thank you Smudgie, that makes me feel better! x