Thyroid graves disease..!: Had Tgd for just over... - Thyroid UK

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Thyroid graves disease..!

Yazz1 profile image
Yazz1

Had Tgd for just over 20yrs had eye operation to stop my eyes from bulging out. Body is under active and brain is over active. Brain is in constant over drive going 100mph. Body is under active always tired feel sleepy through out the day feet freezing cold hands dry skin dry feet get baloon spots cracked heals. Bloated stomach, weight, under weight, hair loss teeth loss gum disease, am on 150mg now as thyroid levels really high. Fed up. Thinking of triening cbd oil. Hurd gets rid of thyroid problem. Any other suggestions...?

32 Replies

I was just like you, Graves' TED, eye opps and then underactive, Levo for 10 years, feeling like death. Natural Desiccated Thyroid has helped me feel better and loose weight. Still not the me I was 20 years ago before Graves' (diagnosed very late in 2000). it affected my brain badly, the frontal lobes, so some things I just have to learn to live with, I use to have diner parties, now I struggle to scramble an egg. I cannot plan or organise and the house gets in a mess. It is a horrible illness and doctors really have no idea of the effect it has on your life and on the lives of family and friends.

Gilly81 profile image
Gilly81 in reply to Gilly81

Oh, and the teeth loss, broke my pelvis too and my shoulder, Graves' is not good for teeth or bones :(

Alexkjones profile image
Alexkjones in reply to Gilly81

Crikey. I'm only 2 years into Graves' disease. So I have all this to come right? Currently on titration method with just carbimazol and feel okay most of the time, but do get many symptoms as My blood thyroid levels seesaw every now and then. Alex

Are you staying on the same dose for at least 6/8 weeks, between drops? I found I needed to go the full 8weeks so I had a proper picture of how the Carb was affecting me.

Have you been tested for Hashimoto?

Yazz1 profile image
Yazz1 in reply to Alexkjones

Just try staying fit and healthy eat the right foods avoid weat and any other foods that can trigger any related symptoms. Get regular blood tests think you will be okay. There's a lot more info out there now then 20yrs ago when I was diognosed. All we can do is help each other. And give the best advice we can. Stay well.

Silver_Fairy profile image
Silver_Fairy in reply to Gilly81

Gilly81, have you had Vit D tested? The body metabolises things so much faster when you have Graves so it doesn't have the chance to get the full nutrition from food.

If you can get the GP to test, go for Vit B, ferritin and folate too.

Gilly81 profile image
Gilly81 in reply to Silver_Fairy

Yes, after breaking my pelvis and shoulder, like all Graves' patients I was very low, doctors do not tell you this. Now I take D3 and K2. since starting NDT a years ago my mouth is no longer dry so my teeth are much better too.

Yes, I was low on iron and I also take B12.

Gilly81 profile image
Gilly81 in reply to Gilly81

I was on Levo for 10 years after the Graves' and TED, I had the myxedema for 17 years that only cleared up four years ago.

Yazz1 profile image
Yazz1 in reply to Gilly81

My mouth gets really dry too. So will try getting some vitamins of doctor.

Yazz1 profile image
Yazz1 in reply to Silver_Fairy

Thank you for that. am currantly taken vitamin d3 which I got from Holland and Barrett. I have an appointment with the thyroid specialists on the 19th so I think I will ask them to do all the tests. Thank you for your input. Great help.

Angelic69 profile image
Angelic69 in reply to Gilly81

Think I might have graves, my bones and teeth are not healthy. Wouldn't my Gp have told me grasves rather than thyroid

Yazz1 profile image
Yazz1 in reply to Angelic69

Best way you can tell if you have graves is threw the eyes, eyesite gets weak and eyes start bulging out. Doctors don't tell you anything you have to ask them. I had to research and then tell my doctor what I wanted done.

Angelic69 profile image
Angelic69 in reply to Yazz1

I've had trouble with my eyes since they first put me on levothyroxine, I thought it was the medicine that causes it

Angelic69 you can only be sure if you have your antibodies tested. Not all Graves sufferers have TED

Yazz1 profile image
Yazz1 in reply to Gilly81

Torn cartilage in my knee they can't opp as thyroid levels to high, loosing My teeth too. dentist don't want to know. Yes it's hard but hey we just got to get up and get on with it. 😕

Yazz1 profile image
Yazz1 in reply to Gilly81

Feel exactly what you going threw so sad and frustrating unless you going threw it no one really understands. I was diognosed what I was 19 never was hurd off. Now so many people have been diognosed. My 2sisters have it and my brother. Terrible illness.

HughH profile image
HughH in reply to Yazz1

Just read this old post after looking at your new post. Your family history points to a genetic condition, thyroid hormone resistance. It causes hypothyroid symptoms but can also cause bulging eyes. It requires very high free t3 levels to overcome the resistance.

Yazz1 profile image
Yazz1 in reply to HughH

After being recently discharged from Q.E because they think I have depression and need to see a therapist. But wont give me what I need which is T3. Referred me back to gp. So argued with him that I need T3. So he said he has to refer me back to an encrologist to authorise it. Which we all will never happen. 🤦‍♀️🤷‍♀️

Angelic69 profile image
Angelic69 in reply to Gilly81

Omg, that's terrible, I have similar issues. Everyday I have headaches too and my vision is intermitten. I've tried all sorts of skin oils but nothing can replace our natural oils that our bodies have decided not to make anymore. How do they treat graves

Yazz1 profile image
Yazz1 in reply to Angelic69

Graves is connected to thyroid so your whole body kind of messes up. I had decompression of the eyes where they brought my bone around my eye fwd to stop my eyes from bulging. I had really bulging eye as a child and was bullied at school. It attacks the whole body but no one understands that. Now that am older I kind of taken control of it myself by doing research and looking for natural remedies. Am going to try cbd oil. I will try it and if works I will let yous know. Stay well.c

Yazz1 profile image
Yazz1 in reply to Angelic69

Best skin treatment I find works for me as I've tried loads of different ones is the organic coconut oil. My skin is do dry it absorbs everything. Raw virgin Coconut oil by optima 500g jar you can get from tesco works wonders. Skin is so soft and doesn't dry out.

Yazz1 profile image
Yazz1 in reply to Gilly81

Gilly81 I know how it feels I'm still suffering headaches I feel my brain is going to explode it's almost 3.00 and am wide awake can't sleep. My body feels like it's shut down and my brain feels like I've just woke up. So stressed. I hope can find a natural cure. 😩

Angelic69 profile image
Angelic69 in reply to Yazz1

Doctor told me to take naproxin for the headaches. my

I do not think I am typical.

Yazz1, it might be better to put up your last test results (with ranges) and the more knowledgeable members can comment.

Do you still have your thyroid? You say you are on 150mg (I presume Levo?) as levels high. Has your GP dropped the dosage? As all your symptoms are hypo (apart I think from the racing brain!)

Yazz1 profile image
Yazz1 in reply to Silver_Fairy

I was on 100mg levo but now the doctor has put me on 150 because the hospital did a test and my thyroid level was really high. Am due a knee opp. But can't have it done due to my thyroid so high. I have an appointment with the thyroid specialist on the 19th so I will ask to get tested for the hashimoto.

Yazz1 profile image
Yazz1 in reply to Silver_Fairy

Silver_fairy

yes I still have thyroid graves disease. Doctors just recently put my dosage up from 100mg of levo to 150mg. Last checked it was at 2.8. Couple weeks ago. So finally been refered to specialist at the hospital after appointments were being pushed back from March up until now, complained to gp so got my date now for the 19th of this month. I hope the specialist has like a 2hr slot because that's how long it will take going threw my m.o.t lol... will let you know once been to my oppointment.

Stay well. Yaz1

Silver_Fairy profile image
Silver_Fairy in reply to Yazz1

It may help to write down all the things you want to talk about, good luck

Silver_Fairy profile image
Silver_Fairy in reply to Yazz1

Sorry, I meant do you still have your thyroid gland, or have you had a thyroidectomy? Sadly, once we have Graves, we have it for life, although we may go into remission.

You need to have your FT3 and FT4 tested, TSH on its own is no use. Try to get your GP to do B12, Vit D (stop taking the supplement for a few days before test0 Ferritin and folate. If any of these are low the Levo will have problems converting to T3

Yazz1 profile image
Yazz1 in reply to Silver_Fairy

I will do when I see the specialist at the hospital doctor doesn't know how to deal with it. I still have my thyroid gland. It's The graves that's causing the problems with my brain.

Silver_Fairy profile image
Silver_Fairy in reply to Yazz1

Do you mind me asking what treatment you had for Graves when you were first diagnosed?

Yazz1 profile image
Yazz1 in reply to Silver_Fairy

No treatment from the doctors,my optician got me refered to an eye surgeon in Leicester where I had to under go an eye operation where they brought me eye sockets fwd so my eyes sit back and didn't look so glared and large. But no treatment from the doctors.

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