[catsmum]

in reply to: hair loss #1071937

Hi,

I know how you feel! My daughter is a bit older than yours, at 17, and is on block & replace therapy. She too is having problems with her hair & also her nails are thinning & breaking. Apparently there are 3 types of hair loss, the first is general shedding of hair (you’ll notice more than usual around the plug when washing hair, or on the brush.) From what I undestand this is a common symptom of hypothyroid often seen in patients taking Syntheroid & isn’t permanent.
The second type involves circular patches of hair loss & can be due to either fungal infection or autoimmune alopecia. The last is more assoscited with men & you notice thinning at the temple area. From what you say, I think the first is more likely. If you can speak to your endo I’m sure he/she will be able to advise you on wether they think more blood tests are needed.
Sorry I can’t be of more help. I know how heartbreaking it is to watch your beautiful little girl coping with this illness. Take care of yourself

W x

[catsmum]

in reply to: need help being patient #1071943

Hi Emily,

Hang in there!
If you are concerned about ANY symptoms or feelings call your endo for advice or go to your ER. If nothing else it will give you peace of mind. My daughter has GD & we were told if she had any breathing problems or were concerned to get it checked out straight away. I am sure it will just be a bit of a ‘blip’ in your recovery but don’t take any chances with your health, stressing about the symptoms will not do you any good so get intouch with someone who can take a look at you & reassure you.
Take care of yourself,

W x

[catsmum]

in reply to: My Daughter’s Weight Gain #1072750

Hi Again,

The exam officer at school has been in touch with the exam board when Cat was first diagnosed & arranged breaks during the exam for her but I jusr feel that she’s gone through so much during this final a-level year with firstly being very hyper then the effects of the meds, now she’s hypo this has had a detrimental effect on her course work & revision. I’ll call the school next week once they are back from the Easter break & speak to them again.
Off to wake her up now & see if she can manage an hour or so on her coursework.

Take care,
W x

[catsmum]

in reply to: Feel lucky despite having Graves #1071948

Shirlee,

You are my inspiration to get through today.
Thank you for sharing your story.

W x

[catsmum]

in reply to: My Daughter’s Weight Gain #1072748

Thanks girls!

Mammabear – The bears made me smile, I don’t think I’ve done that for a while – thank you x

Hyperm,
I’ve tried looking into why block & replace isn’t recommended for menstruating women but can’t find out. Do you know if it is to do with decreasing fertility or osteoperosis or something specific like that. We’ve just found out Cat’s next appointment is with a different doctor, not the consultant or registrar she has already seen. Maybe he will be more clued up on Graves. As she’s been complaining of dry, gritty eye & her eyes are tearing a lot I thought I’d ask for a referral to an opthamologist too.
I’ve been trying to find doctors / endos in our area who specialise in Graves but can’t find anything. If anyone can recommend someone in North East England I’d be really grateful.
Currently Cat is sleeping all the time & finding it so hard to study (she begins her A levels on 6th May!), poor kid is having a tough time. School have said she can take breaks during the exams but I’m concerned that her inability to focus on coursework & revision is really going to affect her grades. Seems so unfair for her to have all of this right now. Not sure how we’d cope without all the suport from the guys on this forum.
Oh well, on with another day ” title=”Neutral” />

[catsmum]

in reply to: My Daughter’s Weight Gain #1072745

Hyperm,

Thanks for the reply. I’ve spotted a couple of things online about block-replace not being suityable for menstruating women. I will definately look into it before we go back to the endo.
Problems over here are that we have the National Health Sevice (don’t get me wrong, I think every country should have one & I worked in it for a while) but it means we get allocated a consultant endo & it’s not very easy to ask for a different one. You often don’t see the consultant when you go to appointments & it can take ages to get appointments etc too (we can’t just ring up & see the specialist when we need to). It is also difficult to find out about the doctors & who’s recommended in each field so feel like our hands are tied.
I will however question this treatment when we go back, (Lord, do I have a list of questions for that doctor next time I see him….)
Thanks again, I don’t know what we’d do without the support of you guys.

W. x

[catsmum]

in reply to: My Daughter’s Weight Gain #1072743

Thanks, DianneW.

I think it is probably that her thyroxine dose is too low. I took her back to see an endo about 2 weeks back as she was suffering extreme fatigue, gaining weight & had developed quite a large goitre within the space of a few days. He did test her blood & upped her levothyroxine to 75mcg but she’s not feeling any better. I would have thought the bosy would respond to increased hormone levels relatively quickly & we would have seen some improvement by now?
Am I just being a bit impatient? How long does it usually take to notice the effects of increased dose? She’s due to have bloods done again in 2 weeks time so suppose we’ll see what happens then.

Take care,

[catsmum]

in reply to: My Daughter’s Weight Gain #1072741

Hi,

I can so sympathise too. My 17 year old daughter was only diagnosed at Christmas & is getting upset that she has gained about 8-10 lb since she went on block-replace therapy.
I was really interested to hear about Hyperm’s experiences with carbimazole & thyroxine as this is the exact meds my daughter is on. If you read this, Hyperm, can you give me more info about why your new endo stopped this treatment please. We are back at my daughter’s consultants in a few weeks & I’d like to be able to discuss this with him as I’m not sure it’s best treatment for her.As well as gaining weight she is sleeping all the time & has no energy whatsover & has also developed a goitre. It’s hard enough to cope with finding out you have a disease like Graves, without having your appearance change so much when you are already going through the trials of teenage years.

[catsmum]

in reply to: having a rubbish day need a wee bit support. #1072020

Hang in there!
I know that’s easy to say but not every day is going to be this bad. I have ME, my daughter has Graves & my son is Aspergers, so I totally understand how some days are just the pits. I look around my dining room now & can barely see the floor for boxes & clutter (I work from home as my illness has stopped me working as a teacher), i walk into the kitchen & see dishes needing washing, the bathroom looks like a bomb has dropped with damp towels strewn across the floor by my teenage daughter who thinks they’ll pick themselves up & jump into the washing machine! But you know what? It’s ok! It has taken me a couple of years to realize that although, yes I feel better when the house is spotless, it’s not the end of the world when it’s not. If I can’t get up the energy to clean the whole place everyday like I used to, that’s ok – I just celebrate the little things I can do, for instance today I went to the Postal Office on my own! It’s only about a block away but most days I can’t do that. SO YEEE!
As a mum to two kids you want everything to be perfect for them, but when they grow up they won’t remember if the house was messy sometimes, they won’t remember that they didn’t have homemade, fully organic meals 3 times a day every day but they’ll remember their mom loved them loads. So save your energy for giving the kids hugs and smiles they are the important things you need to do every day, not housework.
I can’t give you much advice for dealing with your MIL as my mum & MIL both died when my kids were babies (they are now 17 & 20) but I think you are putting pressure on yourself to be perfect for her. I am sure neither she nor your partner expect you to be a perfect host at the minute & maybe she would really love it if you asked her to help you with little things about the home & made her feel really needed.
Please don’t be so hard on yourself, there will be days (or in my case its only hours) when you have the energy & ability to do some housework until then just go with the flow until then. Try to keep one room, perhaps your bedroom relatively tidy do that can be your sanctuary from the mess & clutter of the rest of your house if need be. I try & do this, just having a place I can go into for a short while & ‘chill’ helps. I also find it helps to set myself small, achievable tasks for each day such as today I am going to empty the dishwasher & wipe down the kitchen surfaces. If I do that I will have done well today, and anything else I manage is a bonus. Over time I hope I’ll be able to increase the number of tasks I can do but for now it’s just baby steps – and that’s ok!
Keep your chin up & celebrate small acomplishments.
Love
Catsmum xx

[catsmum]

in reply to: What are the signs & phases of Thyroid Eye Disease? #1072222

Hi HTH

My daughter is still in full time education so gets free eye tests. I took her to the optician as soon as she was diagnosed & had an eye exam. I told him she had Graves and was concerned about the possible eye problems but he just said ‘her endo will keep a check on that’ – maybe I need to search out an optician with expertise in GD. ANyone know how to locate one of these in the UK?
Catsmum

[catsmum]

in reply to: What are ‘Normal’ levels? #1072407

Hi Dianne,
We’d love to make the conference but unfortunatley we live in the UK. Don’t suppose you could bring it forward a month as we’re in the US till mid-september…..
There does’nt seem to be much in the way of support groups for Graves over here, only a few for general thyroid problems so we are so glad we came across NGDF.org, it’s been a Godsend to us as it provides so much support & info. Big Thanks to all who keep it running.

[catsmum]

in reply to: What are the signs & phases of Thyroid Eye Disease? #1072219

Thanks, Ski

That info really does help us understand this issue.
Many thanks,
Catsmum

[catsmum]

in reply to: What are ‘Normal’ levels? #1072405

Thanks Dianne,

I will start being a bit more ‘pushy’ with the doctors. I know exactly what you mean about them making you feel like you are not capable of understanding & managing your illness. I am actually a trained Biomedical Scientist & although my specialist area is clinical microbiology I have training in clinical chemistry too, so although I no longer work in this area I am fully capable of understanding medical issues. I find it really annoying that many doctors fail to fully inform patients of their conditions etc as they a. think they can’t understand or b. think they can’t cope with the truth. Yes, I think it’s time to stop being so polite & demand a few answers.

Take care,
Catsmum.

[catsmum]

in reply to: What are ‘Normal’ levels? #1072403

Thanks for the advice, I will ask for copies of the levels. We did get a copy of her first ones but there were no reference ranges with them as they were part of the consultants letter to GP. Last time we were’nt told her results, just that she had to increase her levothyroxine dose. She’s been re-tested in 3-4 weeks so I will definately ask for a copy of the results to be sent to us.
Thanks again,
Catsmum

[catsmum]

in reply to: Newly Diagnosed #1072353

Hi Christy,

Hang on in there. My 17 year old daughter has just been diagnosed too & I have ME/CFS so I know how much of a struggle it can be. Take every day as it comes, there will be good days & bad days so enjoy the good ones & know the bad days will pass. Focus on the good things in your life, your 4 beautiful kids, and remember that you have an immense strength inside of you (to look after 4 kids you must be amazing!) and you can deal with this.
There are a lot of people out here to support you when things get you down. Together we can do it.
Take care,
Catsmumnx

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