[catsmum]

in reply to: Swine Flu in the news…. #1071624

Hi,

Here in the UK we are being advised to reduce the risk of catching this virus (and any other) by washing hands for at least 20 seconds after using the bathroom, public restrooms, etc. (apparently 20 seconds is the length of time it takes to sing 2 choruses of ‘Happy Birthday to you’! ). As an added precaution we have taken to carrying a small bottle of alchohol hand wash, as used in hospitals, with us so we can ‘wash’ after touching things such as door handles when out & about.

Take care everyone,
W x

[catsmum]

in reply to: Newly Diagnosed #1071660

Welcome!

You aren’t alone! I am mum to a 17 year old recently diagnosed with Graves & a 20 year old with Aspergers so I know only too well how difficult these times can be for a mum. Also, I have ME / CFS so totally understand how difficult it can be to get through a day. Half the battle is realizing that you are not alone. There are so many wonderful people here feeling just like you but together we get through each day.
Don’t try to do it all – no one can! Prioritize & do what needs to be done, I mean REALLY needs to be done & don’t sweat the rest.
Your daughter is old enough to help too! Make sure she is aware of how you feel right now & that you need her help. If my daughter is anything to go by, she’ll relish the challenge to show how mature she is.
Take every day as it comes & know that you’ll have good days again. Try to get out & enjoy some sunshine (if the weather is kind ” title=”Very Happy” /> ) & remember to take some time out to relax & let your body heal itself.
Be good to yourself,
W x

[catsmum]

in reply to: My intro…… #1071694

Hello Marie,
Welcome! Your in exactly the right place for info & support.
Look forward to getting to know you.
W x

[catsmum]

in reply to: Daughter Just Diagnosed #1071897

Becky,
I know exactly how you feel. When my daughter was diagnosed a couple of months ago I had so many questions and concerns and no definitive answers.
Firstly – good news! Your daughter is diagnosed and the doctors are onto this disease. That means you are able to manage it. It’s when it is left unidentified/unmanaged that it causes serious problems. My daughter was also put on what seemed an incredibly high dose of beta blockers to begin with. The idea of these is slow down her metabolism, including her heart rate. Her body is producing too much of the thyroid hormone which is sending her organs into overdrive. This is the dangerous bit. If the heart is going too fast, well you can imagine what might happen. BUT… the doctor identified this & your daughter is now on meds to bring her heart rate etc down to a safe level. She’ll need these drugs until the doctors get her thyroid hormome levels down to ‘normal’. They can do this several ways. Often, here in the UK anyway, they begin with ATD’s (anti-thyroid drugs) which stop the thyroid producing the hormone. Another approach is the use of Radio-active iodine (RAI) which ‘kills’ thyroid cells thus reducing the amount of thyoid hormone produced. The third method is surgical removal of part or all of the thyroid.
Whichever method you choose, as the thyroid hormone levels in her body fall then heart rate etc will also settle & eventually she’ll be able to stop the beta blockers. My daughter took 3 months to cut these out.
Next, if she isn’t producing thyoid hormone because of the treatment above, she’ll be given it artificially through meds. It is likely to take a while for the doctors to get her levels of hormone correct, so you’ll both have to bear with it. It may go too low & she’ll become hypothyroid which in itself has problems, however it is not as dangerous as hyperthyroid.
I was told that my daughter might get immunosuppressed, basically the drugs could stop her immune system working properly & she could become very ill. I pannicked & watched her for any signs of cough, cold etc. However, I’m told this is very rare and does not happen overnight, so as long as she is having regular blood work done it should be picked up. (ask for her White Blood Cell count). We now know that we don’t panic, we just watch out for viruses, sore throats etc (stuff all kids get) that doesn’t clear up in a couple of days as we would expect, or if she runs a fever, has a rash or difficulty breathing. Then we get her checked out.
As for her eyes, I believe not all Graves patients get problems with these, however I am not an expert. I had my daughter checked out by her optician but she’s complaining of watery, gritty eyes so I’m going to get her to an opthamologist for a check. ASk you doctor about referring you to someone with experience with Graves or Thyroid Eye disease (TED).
You must be really confused and scared right now, I was too (and still am at times) but there are people here who will be happy to answer any questions no matter how silly you think they may be (chances are one of us has asked the same thing at some time!). My daughter is older than yours,at 17, but we explain her illness to other youngsters by telling them that they have good cells in their body, called white blood cells. It’s their job to fight off anything that gets into the body that might make you ill, a bit like an army. However, some of these cells have gotton a bit confused & think that some of her own cells (thyroid) are invaders so they are attacking them. This is stopping the thyroid cells doing ther job which is to keep all her organs running properly, such as her heart. The medication she is taking is to do the thyoid’s job for it. Maybe this isn’t completely scientifically correct, but it can help kids understand a little of what’s happening.
Hope this helps answer some questions. I’m sure others will give you more advice.
Try not to worry, now you know what’s happening you can deal with it. This is much safer for your daughter than if you didn’t know.
Take care,
W x

[catsmum]

in reply to: Thanks #1071700

Hi Saint0317,

Sorry to hear you’ve had a tough time but rest assured things will improve. A very wise person on this site told me recently that the mantra for Graves sufferers is ‘patience’. I’m recently new to the site as my 17 year old daughter was recently diagnosed, & like you is extremely fatigued & frustrated that she can’t do things she used to at the minute. It takes a while for levels to get sorted out & your body to adjust so hang in there.
You say your heart is still racing? Has your doctor prescribed meds to slow it down? We live in the UK & Cat was given beta blockers when she was hyper to slow things down until her thyroid levels went down (she takes carbimazole for that). It only took a couple of days for the palpatations & heart racing to stop with the beta blockers. If you are still experiencing a fast heart rate maybe ring your doctor for advice.
In the mean time, enjoy watching the softball (as I’m English I’m not really sure what softball is! Is it a form of baseball? Sorry for being so dumb ” title=”Confused” /> )
Take care of yourself & listen to your body. If it’s tired, rest!
Keep asking questions, that’s how you get to understand this condition.
Love
W x

[catsmum]

in reply to: Something with inspiration…. #1071739

Thank you so much for this.
I have ME & it can be difficult to stick at things. This will inspire me to keep going
W x

[catsmum]

in reply to: New to Grave’s and need advice #1071726

Hi Lynne,
Welcome! You are in exactly the right place to get all the support & info you need.
My daughter has Graves & has been on antithyroid meds for 4 months (now on thyroxine too), and she’s had no problems at all with immunosuppression. Despite being at school amongst all the nasty viruses & bugs kids get she’s been ok. Obviously there are side effects, she’s really, really tired & has a few other minor problems. We were also worried about the risk of immunosupression but just kept an eye on her.
As we are also pretty new to this illness, this is the only therepy we’ve tried so far but I am sure that some of the others here will be able to give you more advice.
For the time being, take care of yourself.
W x

[catsmum]

in reply to: Flaxseed Oil #1071832

Hi All,

I’ve just bought ‘vegetarian omega 3 capsules’ which are pure flaxseed oil. Just take them like fish oil capsules once a day. Nice & easy! ” title=”Razz” />

W

[catsmum]

in reply to: Anyone else dealing with nausea? #1072000

Hi Lindkanne,

My daughter has Garves an actully presented with nausea. Initially the GP diagnosed hiatus hernia but blood tests showed she was dangerously hyper. She is on carbimazole & thyroxine, and is now hypo but still gets nausea. She has been prescribed cyclizine to take as needed & finds this helps.
Take care,
W x

[catsmum]

in reply to: Still wondering about my throat? #1071758

Hi Emily,

Sorry to hear you are still having problems with your throat but at least you had the all clear from the ENT, that’s good to know there is nothing sinister going on in there. My daughter also has this feeling of a lump especially on swallowing, however she has developed a goitre & when she tilts her head up you can actually see the butterfly shaped thyroid gland sticking out. We were advised to measure her neck regularly to check if it is getting bigger (it can be hard to tell just by looking when you see it every day). Maybe you could do this then if there are any changes let your endo know. When enlarged the gland can press on the airway & / or gullet causing this ‘lump in throat’ feeling.
Also, as your body is effectively at war with itself,and if you have a cold or virus, you may find your neck glands are swollen up giving you that ‘lump’ feeling. If it’s the effect of a cold or similar it should go back to normal in a couple of days. If not, ring your endo again.
Take care,
W x

[catsmum]

in reply to: Help-Exercise, still tired, brain fog and loss of sex drive #1071856

I’d really be interested in the symptoms of hypo too. My daughter has been on levothyroxine noe about 7 weeks & is totally wrecked, hardly able to stay awake at times. Also complains of being cold all the time & not being able to think straight.
How long does it take for this drug to get into the system? Her dose was increased a couple of weeks ago, should we not have noticed any improvement by now? Do these symptoms indicate she’s hypo or what????

Thanks in advance for your answers.

[catsmum]

in reply to: Help-Exercise, still tired, brain fog and loss of sex drive #1071850

I can sooooo empathise! I have ME & feel exactly the same. I sleep 2-3 hours every afternoon & feel that I am sleeping my life away. Well done for the exercise! Wow, wish I could do 5 minutes a day never mind 50! I am sure this will help with your mood & physique. My doctors also recommend exercise for me as it is generally accepted that as it releases endorphines (the body’s natural ‘feel good’ hormones) it lifts mood. However, I know just how frustrating it is to not be able to do things due to fatigue. As I keep saying, my mind is willing but my body’s not able. Do you manage to get outdoors much? If the weather is good I find just a gentle walk can help perk me up. Maybe a walk with hubby, hand in hand… would help you both?
As for the brain fog, welcome to my world! My daughter, with GD, is also suffering with this at the minute as her levels are not right yet, but i understand that even when levels are ok it can take time for your body to readjust. So hang in there. It is so annoying to not be able to think straight or hold a conversation of more than about 30 seconds. Again, a litlte fresh air can sometimes help.
Sorry I don’t have all the answers for you, but at least you know you aren’t alone in this.
Take it a day at a time.
Wx

[catsmum]

in reply to: Worry about cold/sore throat? #1071859

Hi,

I wouldn’t worry too much about your throat unless it doesn’t improve over a few days. We were told that signs of agranulocytosis (when the bone marrow suddenly stops making white blood cells that fight infections) were persistant coughs & sore throat of flu-type symptoms which are severe or do not improve over the course of a few days, as a normal cold etc would. As your kids have been unwell it’s likely that you are coming down with the same thing. Do however be vigilant, if you have any shortnes of breath, unusual bruising or red spots, or feel more unwel than you would usually with a cold etc get in touch with your physician. Also, it’s worth mentioning the sore throat etc when you see him on tuesday anyway.
My daughter has had a couple of sore throats since begining her therapy but they’ve cleared up fine after 24-48 hours so try not to panic (easy to say, I know;-))
Hope you are feeling better soon.
Take care,
W x

[catsmum]

in reply to: Daughter Just Diagnosed #1071894

Hi Becky,

I know exactly how you feel, my daughter is 17 and was diagnosed a couple of months ago after routine blood tests. I too can now look back & see that things I thought were just ‘normal teenage’ things were actually signs of the disease, such as mood swings, fatigue, excess sweating etc. It is really scary at first, but once you get over the initial shock & begin to learn more about the disease you calm down a bit.
We recieved a phone call on Christmas eve from our doctor saying they’d recieved her blood test results and we had to ‘drop everything & get up here now!’ By that evening Cat was taking 18 pills a day! She went onto high dose beta-blockers initially, along with carbimazole to ‘switch off’ her thyroid. We were told to be observant & contact her doctor imediately if she had any difficulty breathing, cough, sore throat, chest pain…. the list went on & really panicked me! I felt like I had to watch her day & night She, however just got on with things. It’s amazing how resiliant our kids are.
Now she is on block & replace (still taking carbimazole to keep her thyroid switched off, but also taking levothyroxine to replace the thyroid hormone she’s not making naturally). Some days are better than others.
The main thing is that you have a diagnosis, so you can both now deal with & control this illness. I am eternally grateful to the doctor who picked up Cat’s condition. Without her we would have just dismissed things as ‘teenage hormones’ & my daughter could have had major health problems. Now we know what it is WE are controlling the disease.
I have found this forum invaluable when either Cat or I have questions we type them in & know that someone will be there to give us advice. Never feel embarrased or silly for asking a question on here, we have all been were you are right now and know how scary & confusing this is. There will always be someone here to offer advice & support to you both when you need it.
Take care of yourselves,
W x

[catsmum]

in reply to: I over-reacted #1071932

Hi,

Glad you are felling better now.
Never be sorry for taking your symptoms seriously, yes we all over react at times (sure my doctor thinks my middle name is ‘Neurotic’!) but better to get things checked out & be safe than leave it & regret it.
Have a good evening ” title=”Very Happy” />

W x

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