Thyroid UK
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Recently diagnosed with Graves hyper advice needed please.

Hi I was diagnosed with toxic graves hyperthyroidism 2 mths ago. I'm a 39 female and dare I say I'm a smoker. I had high t levels of t3 25 t4 50 with low tsh 0.02. Still learning what all these numbers are about. My antibodies where at 6 which diagnosed the graves bit. I've been on 40mg of carbimazole and 120mg of propanadol a day for 8 weeks. Bloods now show just below normal levels as the carbomizole is kicking in. Have felt pretty normal throughout the treatment so far. Hasn't really stopped me doing anything. I have an enlarged right lobe to my thyroid but with no visible signs of enlargement to look at me. So endo has just put me onto block and replace and I'm 2 days in to 100mg of thyroxine with 40mg of carbimazole a day. I'm also Slowly dropping the propanadol over the next week. I'm Now feeling a bit strange in my head. A bit fuzzy and my focus is a bit off and I burst into tears earlier. Haven't cried for 6 years! I'm a happy person and full of life normally. So my questions are: is block and replace okay? How does it make you feel ? How often should I have bloods done now? Can I still achieve remission when they stop the pills? Can I be on this regime for a long time? My Endo is already talking about rai in December! Im scared of that. But is long term thyroxine for hypo better than being in remission then relapsing etc etc. I have never been ill in my life so this one has knocked me for 6. Any general advise welcomed as I'm new to this and don't know what's the best path to take. Food guidance also welcomed. Just not sure my endo is doing what's right for me. I feel pushed down a set route without understanding what's happening. Thanks Alex

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I had radioactive iodine treatment which made me hypothyroid. I'm not sure that was a good decision. I made it because I was told that there was a higher risk of getting throat cancer. I have never felt as well as I used to feel before.

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So sorry to hear that. My neighbour had cancer in his thyroid when he was 20. After 2 doses of rai and then surgery to remove everything and the other little glands in his neck responsible for calcium he has now been on thyroxine for over 8 years and is feeling fine. It just seems to depend who you are and how you are medicated. All very variable it seems. Doesn't help us all much dose it. Alex

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Hi Alex,

I am about 2 weeks behind you in block and replace so I haven't started taking thyroxine yet. I have spoken to an ophthalmologist about RAI and she said that she sees many patients who have had this treatment for Graves who then go on to develop Thyroid Eye Disease (TED). Apparently there is a very strong connection between the two but they don't know why. She advised me to avoid it if at all possible and stick to drug treatment for as long as it agrees with me. She also said to take 200ug selenium daily as this is thought to help considerably.

My end is also pushing for me to RAI three months after commencing block and replace. He said that this was because it is only effective when the Graves is active and if I didn't have it I will probably go into remission and then have a relapse several years later and need treatment again when I am older and less likely to want to deal with it. I am only 48 so not exactly ancient!

One other thing the eye surgeon said was that smoking increases the likelihood of TED - sorry :(

I also asked my GP to do a blood test for Coeliac Disease as that is also often related to Graves and it came back positive so I am now on a gluten-free diet which isn't easy but I am getting to grips with it.

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So if you are on block and replace can you go back to just the carbimazole meds treatment? How long can you stay on that? My eyes defo feel a bit weird only 2 days into block and replace. They also felt a bit of pressure behind them before any treatment started but were fine when I was just on carbimazole. Alex

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Hi Alex,

I am seeing my endo tomorrow so I will ask.

I would advise seeing an optician about your eyes -I was also told to use natural tears eye drops three times a day as well as the selenium.

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Coolio. My endo said I didn't have any of the visible signs of eye disease. I just know they don't feel quite right. He said I didn't need to see an eye specialist!

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So did mine but I am glad that I did! He also said that I didn't need to be tested for Coeliac disease. I am not impressed and yet he is supposed to be a leader in his field.

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Thanks for sharing. I'll be asking for a referral and more tests then. :)

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Yeah I've read about the smoking thing. I have had a 15 a day habit for over 20 years :( so it's not going to be an easy one to fix. Wish I didn't smoke but I do. May have to face that demon too ontop of graves ! I'm 40 next year, so maybe that will be my year. x

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Alex I was able to stop smoking cigarettes by using an ecig and I have tried and failed many times before, Up to last week I had gonec18 months without a real cig then spoilt it all under a stressful time and smoked for 3 days.The ecigs contain nicotine but not tar or tobacco. My GP kmows I am on them and says it is the lesser on 2 evils.He counts me ad a non smoker.Look into it x

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Hi Alex I have been on block and replace for over 4 years, no problems and just about back to how I used to be. Looking on here I feel I made the right decision to stick to the drugs instead of rai or surgery. I was firstly on the drugs for a year then came off but went over active again within 4 months. I do sometimes suffer with bad eyes and was successfully treated and wear my contacts again. Only the odd hiccup. If I were you I would think before making a decision. Hope you feel better soon.

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Thank you. It's a mine field out there. Just glad to hear about how others are being treated. My endo doesn't give me much time. Alex

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Hi Alex, try and learn as much as you can about Graves.Even if you have your thyroid removed by surgery you still have Graves antibodies and ithey then tend to go for the eyes.

A member named Girlscout is very knowledgeable about Graves and hopefully will see your post.She always says the thyroid is not the cause of the problems but the victim .Its the Graves antibodies that are the problem. Good luck x

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Very wise words :) I like and understand that principle. so how do we fix the antibodies? I guess that's the question We may not find an answer to. Alex

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No idea Alex! Hopefully someone will know.

Am I going loopy again? Last night I replied to you and told you about my oen Graves treatment but it seems to have disappeared! X

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Was it on the bottom of the other persons thread? I started a new post as suggested. Alex :)

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Oh yes it was thought I was going loopy again! Thanks x

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Hi Alex, my advice would be to read and learn as much as you can about Graves and autoimmune thyroid disease so you can make informed decisions that are best for you. Try the following sites;

thyroiduk.org.uk

Thyroid manager (Google it)

NHS choices and Patient.co.uk sites (search on the sites)

Map of medicine (if you can get access. Try via the NICE site?)

I have Graves, diagnosed in May and started on carbimazole 20mg. I have gone from hyper (TSH <0.05 range 0.2-4.0, and T4 46 range 10-20) to hypo (TSH = 10.8, T4 = 10). I resisted being put on T4 (ie block and replace) and opted to titrate the carbimazole down as the evidence for block and replace vs titration is finely balanced and I felt it would be easier to come off a low dose of carbimazole than off block and replace when they want me to do this. i also felt I wanted to stay in touch with any variations on my naturally produced thyroxine levels. I'm about to have my first blood check after reducing the carbimazole so don't know what effect it will have had yet. I will resist RAI and/or surgery as I don't think they solve the problem - just replace one problem with another (hyper with hypo). As someone has said the thyroid is the victim in Graves not the enemy. I will want to stay on carbimazole long term if possible as I tolerate it well and it works well for me. If it stops working or I get side effects I may need to revise this decision.

You also need to learn to manage stress well - stress is often a significant factor in people developing Graves. Refresh is also a lot you can/need to do with your diet - but read up and learn for yourself.

Finally there is hope for the future. New therapies are being developed - hopefully in time for us to benefit. Google Apitope for some further information.

Good luck with your journey - stay in touch and gain support through this forum.

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Thank you all for the pointers everyone. I had 2 more spontaneous bursts of tears today. I feel like a nut job :( so out of character for me. Must just be the thyroxine kicking in. I did however speak to my gp at lunchtime and she has put my mind at rest for now anyway. I'm not sure I have the choice to move away from block and replace as my thyroid bloods where so toxic to start with according to her. What's the highest t's anyone has seen? Is there anything out there to sort out the antibodies? My gp was lovely and listened to me balling my eyes out:) All your guidance at this exact moment in time has really helped me. Think I just reached the point where it sank in that I'm not invincible and actually I'm not well on top of feeling a bit weird from the tablets. The info you've shared will really help me to jump the learning curve here. I'm very grateful. It's good to know I'm not alone and just maybe that's half the battle won. Think Ive now got some homework to do. Thanks again everyone.

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Hi again Alex, I know what you mean I was exactly the same very reargul and anxious. Almost fell out with a couple of people I was si irritable.It all came to a head one day and I booked myself into a converted barn in the middle of nowhege , just wanted to be on my own.My family thought I wad having a breakdown. I did alot of thinkingbthere by myself and was determined when I hot back to get to the bottom of it all.i knew it was more than menopause I had changed from a happy go lucky , funny , tolerant person to a wreck! 2 weeks later inwas diagnosed with Graves.As soon as my levels became more 'normal' I started to feel better.3 months into treatment I cracked a jokecand my hubby thevbig softy nearly cried andcsaid'i feel like I have got your back ',

you will feel better too.Until then pamper yourself a bit, take it easy and take time out,

As for the eyes, thankfully mine dont orotrude and I dont need to see a Graves eye specialist but they do get dry , gritty and itchy.Eye cream such as lacralube helps alot, take care kim x

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Awesome. That's great advice. Gunna take a leaf out of your book :)

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Hi, I was diagnosed earlier this year Hyper and had it confirmed in August I had Graves rather than toxic nodules following a scan. Endo has said Carbimazole is the right treatment for 12 months although he would have suggested RAI if it was nodules. I did an awful lot of research and got opinions on here and was determined not to have RAI if I had Graves because of the potential eye issues and my personal circumstances. I also am not willing to agree to probably being hypo for life until I have exhausted medication and lifestyle options. As Slakin said above stress is a huge factor. I have a highly stressful work and home life and when my stress levels rise, it is noticeable my thyroid symptoms worsen despite the medication. Good luck, it's a horrible illness but 3 months into treatment and I am now starting to get more better days

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Thanks. It's nice to hear about the light at the end of the tunnel. I haven't been offered a scan! Does everyone get these? my endo said I didn't need it! I just have an enlarged right lobe that he can feel bit not see in my neck. alex

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IHi alex, no I didn't get a scan either x

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hi. you have exactly what i have. i've been on carbimazole for a week and haven't really felt a difference yet.. i think stress is the cause too with me... what about diet? maybe the thryoid would respond to a different diet... i'm trying to cut down on sugar and E numbers....

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Hi I was diagnosed with Graves back in May 2011 but probably had flare ups for years. I was on carbimazole alone for 2 years until July 2013. I have been in remission since then.

if you are young then staykng on carbi for years is not a problem. If you have no nodules then do not be pushed into RAI as this is a lazy optkon for the endod as they kick you off their books and you are then treaged by ylur GP.

Graves can cause lots of issues including, sweating, diarhea, anger, weeping, palpitations, TED which is directly linked to smoking. So good luck and feel free to ask any daft questions.

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