[catsmum]

in reply to: Hi everyone, we are back! #1065220

Update;

Cat had her bllod work redone at the clinic & her TSH has dropped significantly in 2 weeks (still in norml range, just). Waiting to speak to endo on monday to see what the next steps are. We knew things weren’t right as all her symptoms have returned & goitre has enlarged yet the doctors don’t do anything as her levels are in this magical ‘normal’ range – obviously normal for her is not in that range. When will doctors realise that everyone is different & people don’t always fit the standard ‘normal’. We know our own bodies & can tell when all is not right. They need to listen to the patient & not rely soley on the stats.
Ok, rant over.

[catsmum]

in reply to: Hi everyone, we are back! #1065219

Thanks for that. I’ll pass it onto Cat (she’s 19 by the way). I think it will reassure her alot.
We saw the endo nurse yesterday but despite all her symptoms she’s still in the ‘normal’ range so they are refusing to discuss treatment at the minute. Just a case of sit & wait again.
W x

[catsmum]

in reply to: How do I find out about UK endocrinologists & surgeons? #1065178

Thanks, Kimberley.
I’ve tried the internet search but the only info we can get on Cat’s endo is from the hospital trust he works for and only tells us were he had his training which doesn’t help. It’s at the point where we would like to get a second opinion as we are constantly been told ‘we’ll do nothing for now, just wait & see what happens’. Which, a you can imagine is very frustrating when she is suffereing from all the symptoms of Graves except that her blood work is ‘within the normal reference range’.
I’ll check out the link you gave & see if I can find anything there.
Thanks again.
x

[catsmum]

in reply to: Hi everyone, we are back! #1065217

Thanks, Allison.
It’s reassuring that you got through RAI with little problem.
Cat saw the endo nurse today and her blood tests show little change in fT3, fT4 & TSH levels, which are still within the ‘normal’ range despite all of her hyper symptoms returning. Her goitre has increased insize so it’s possible that the nodules are growing but the thyroind isn’t overactive. Yet again we are being told to ‘wait & see’ which is so frustrating.

[catsmum]

in reply to: Hi everyone, we are back! #1065215

Thanks, guys, I’ll check those posts out now.
prknight – Cat simply went to her doctor as she was feeling unwell then her bloods showed her thyroid hormones were off the scale. She was immediately started on betablockers along with carbimazole. Once she went hypo they began the block & replace of carbimazole & levothyroxine for 7 months. She didn’t tolerate it too well to it, although her levels went down into ‘the normal range’. She was really fatigued all the time. She also developed a goitre & ultrasound showed nodules, one was pretty large so they did needle biopsies. Thankfully that was benign but it is apparently very rare for GD patients also have multinodular goitres, or so we were told.
After 7 months the block & replace was stopped & she has had bloods done every 3 months since We’ve notived her symptoms increasing and her fT3 & fT4 have been going up too, although still in the ‘normal range’. Her goitre has reappeared & all her symtpoms are back. We get blood tests back tomorrow so will see what happens then.

[catsmum]

in reply to: Hi everyone, we are back! #1065211

Thanks, Ski.
You are right, it’s not an easy road we travel. Cat due to get test results on wednesday & we are sure she’s hyper again so likely to need treatment. She is trying to decide which option she’d go for, RAI or thyroidectomy. She seems to be veering toward surgery as she can’t face the thought of being quarenteened (hmmm…not sure I spelled that right…) during the summer as she’s home from Uni & wants to spend time with her friends. I’d rather she had the RAI than surgery ‘cos I’m her mom & don’t want her going under the knfe. So as you can see, not an easy decision.
If anyone has had RAI or thyroidectomy in the UK recently maybe they can let us know what is involved after the treatment – what precautions need to be taken etc. It would be good to hear of the experience of others. Maybe that would help put our minds at rest.

[catsmum]

in reply to: Mamabear Checking in to say hello #1070011

Hi Mammabear,

Glad to hear all is well with you right now & life is good – enjoy!

Hyperm,
Well done on the huge step forward! You are so strong, well done ” title=”Very Happy” />

Wx

[catsmum]

in reply to: Finger joint pain-severe #1070700

Hi All,
Interesting thread. I immediately thought RA, with GD being an auto-immune disease I think I read somewhere that your are at higher risck of other auto-immune diseases such as RA.
My daughter often complains of joint pain (mainly hands & neck -which makes awful cracking sound!). She’s struggling to write in her exams because of the hand pains. WOnder if HyerM could give me any handy (sorry about the pun ) litlle exercises she could do if it gets too bad when she’s writing?

Take care everyone.
Wx

[catsmum]

in reply to: Hi my name is Jorgie Ana and i’m thirteen.. #1070872

Hi Jorgie-Ana,

So sorry they’ve changed you date – that stinks!
But I’m sure you can stick to your diet for a little while longer & remember it will be all worth it.
Cat has her biopsy on tuesday so you’ll both be recovering at the same time ” title=”Smile” />
Your mom sounds great, she’s really spoiling you right now. That’s her way of saying she loves you & is there for her. Remember to give her a (((((((BIG HUG))))))) to show her you appreciate it. As tough as these thigs ar they can really bring mon & daughter even closer together.
I’m off to see how Cat’s doing now, she’s revising for her A-levels (they are the exams you need to pass to get into University in the UK), so she’s a bit stressed about them & then has the biopsy stuff on top. I get amazed by how strong you teenagers are!
Take care,
we’re thinking of you.
Catsmum x

[catsmum]

in reply to: need informaion on my condition #1070858

Hi Sheila,

Welcome to the board!

Sorry you have Graves. My daughter was diagnosed with it a few months ago & i felt h4elpless as I knew very little about it BUT then I found this board. It is fantastic!
Ask anything you want & someone will be here to help. Also feel free to vent your feelings, we are all here to give you support.
Take care of yourself,
Love
Wx

[catsmum]

in reply to: Hi my name is Jorgie Ana and i’m thirteen.. #1070864

HI Jorgie Ana,

A BIG welcome to the bulletin board.
Sorry to hear you are feeling unwell & having to go through all this GD stuff. It’s tough enough being a teenage girl without this too! Believe me I remeber how tough it was when I was a teenager (back in the time of the dinosaurs )
My teenage daughter, Cat, has GD. She’s going into hospital on June 9th for a scan & a biopsy (that’s when they stick a needle in your neck & take out a tiny bit of thyroid – sounds gross, huh?) She needs this ‘cos she has a big lump in her thyroid, so don’t worry you probably will never need to go through that. But she knows just how you feel. Sometimes the scariest thing is waiting for the test. It can be worse than having the thing done!
I know your Mom will be with you every step of the way so don’t sweat it too much. She’ll be there when you are scared, when you are mad & when you feel like crying.
Remember too, this thing won’t last. It might seem like forever now but one day soon you’ll think ‘Hey, I feel good today!’ ” title=”Very Happy” />
Take care of yourself, we are all here to support you.
Love
W x
P.S.
If you’d like to chat with someone around your own age just send me a private message & I’ll pass it on to Cat. I’m sure she’d like to hear from you.

[catsmum]

in reply to: radioactive iodine treatment #1070969

Hi,

Isn’t SKi just a Godsend when you need info? ” title=”Very Happy” /> I don’t know what I would have done without this board over the last couple of months.
Hope your daughter is doing ok, let us know what happens as regards her treatment.
Take care of each other,
Wx

[catsmum]

in reply to: is there a light at the end of the tunnel. #1071031

Hi M,

I can totally understand your frustration. Until I became ill I was teaching full time (including PE), head of Science department & running afterschool fitness clubs aswell as setting up my own business. However when I became ill I was unable to stay awake for more than about an hour without a 1-2 hour rest. I was so weak I couldn’t even pick up a saucepan & I couln’t step outisde my front door alone, and even with my hubby there I was incredibly anxious if there were any people around or I was somewhere unfamiliar.

But things do improve, that hardest thing when you have been so active, is accepting that its a long, slow process & you need to take it one small step at a time. I’ve started attending a Health Start programme my GP referred me to. I can have up to 2 hours supervised exercise with a personal trainer twice a week. I was really nervous to go at first but once there I met alot of people of all ages & abilities who were there to try to get their lives back on track. It is good to know you are not alone. I only managed 30mins aerobics & 30 mins circuit training today but that is a lots more than I could do 1 month ago so ‘GO ME!!!’ ” title=”Very Happy” />

Try to focus on what you have or can do, no matter how small, rather than what you can’t do. Celebrate your achievements – you took the kids out today, that will have been tough but you did it ” title=”Smile” /> Well done!

Cat is totally wrecked at the minute. She went to a music festival at the weekend and it has really taken it out of her. She too is so frustrated that she can’t do what her peers are doing. She managed one full day at festival but only 2 hours on second day. She’s been really upset today & despite her extreme fatigue she can’t sleep. I guess things are praying on her mind with the biopsy plus A levels etc, although she won’t admit that she’s worried. Just hope we get called in for her biopsey this week, the waiting is awful.

Take care of yourself & remember to celebrate small achievements.
Love Wx

[catsmum]

in reply to: radioactive iodine treatment #1070960

I too have a teenage daughter with GD, it can be tough on you both. We too are waiting for ‘the call’ to go into hospital, although Cat is going in for a thyroid biopsy, not RIA at the minute, so I know how you must feel.
Your little girl is really lucky to have such a thoughtful, caring & loving Mom.
You are both in my thoughts & prayers.
((((((((((BIG HUGS))))))))))
Love Wx

[catsmum]

in reply to: RAI Double Pneumonia and sons’ boot camp graduation #1070954

Take care of yourself.
((((((((((Bug Hug))))))))))

Wx

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