Newbie

Hi everyone! Just wanted to introduce myself I'm Sarah from Gateshead, I have Graves disease and Graves eye disease. I was diagnosed last year but have been showing high levels for slightly longer due to my doctors just not recognising I was bordering hyper a year before the official diagnosis! Anyway medication isn't working and a removal is looking likely, just want to connect with others 😊

21 Replies

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  • Hi miss_graves-uk, welcome to the forum I'm sure you will get help and support from everyone on here. How are you coping if meds not working it must be difficult for you at the moment.

  • I'm 100% getting my arse kicked by the graves at the moment to be frank! Haha. Really suffering x

  • Hi, welcome to the group. What a total pain if the meds aren't working. What have you been taking? Like you I had symptoms for a good couple of years - was constantly ignored and only three months before a complete melt down was told by the GP I saw that 'I was needing my holiday'!

    I'm in remission from Graves at the moment so I'm not much help about when the meds don't work. I started off taking 20mcg carbimazole a day and after a month my bloods were still the same. I was then changed to 40mcg a day and after three months it had worked and I was pretty hypo.

    My eyes were (are still) always dry and my vision was often blurred they were definitely affected but they never bulged.

    I take it you're being looked after by an endo and not by your GP?

    I do know that you won't want to have RAI if you've got TED so if they can't get you sorted out with meds then it will probably have to be a TT.

    This is definitely the place to come to for advice and support, I wouldn't have survived without it. Hopefully someone in you ur situation will come along with advice.

  • Hi miss graves, I'm on the other end of the thyroid spectrum (Hashimoto's) so I don't have enough info to be of much help to you. I just wanted to say welcome to the forum!

    All the best!

  • It is possible to treat Graves with long term low dose Carbimazole. I'm 17 months into my Graves journey and still not stable but I'm sticking with it for now. If you have TT you will be permanently hypo and on replacement meds for life and you may not feel any better... how are you feeling in yourself? You need to do a lot of research before you go ahead so you can make sure it is the right decision for you

  • I really don't like the idea of a removal yet to be honest but part of me is looking for the hope it will make me feel better but it's also a chance I'm not ready to take. I feel rotten at the moment, weak, not sleeping, shakes and nervousness justI feel worse than I've ever felt. My eyes seemed to have calmed down a bit funny enough although they are dry and gritty but no more bulge just yet anyway x

  • Hi miss_graves-uk, welcome to the forum and would like to say that Hyco San Eye Drops are good for dry, gritty eyes. I had Graves, but had to have a sub-total thyroidectomy while 14 weeks pregnant with my daughter. Please read my profile,and it would be good to write yours also. You have come to the right place for a lot of useful information and help.

  • Hi Miss Graves,

    Just as a matter of interest, what medication are you on?

    I was diagnosed as Graves in January 2014, and put on 60mg Carbimazole, and varying doses of beta blocker. My Carbimazole dose was very high for some time. However, I can off it after 14 months, and have been in remission for almost two years.

    Maybe your dose needs altering?

    Arab.

  • Hi thanks for your reply!

    I'm currently on 60mg recently increased I'm seeing my endo end of April to see of the 60mg has improved things and take it from there. She won't do RAI because of my eyes so said we might have to consider taking the Thyroid out. But my concern is removal is only treating a symptom not the disease. Surely it would be far better to continue to try and manage the graves before a thyroidectomy?

  • How do you feel in remission? That's great 😊

    I've had my dose increased to 60mg and back to the endo in a month to see if it's making a difference. I've changed my diet too I'm determined to avoid removal

  • I massively reduced my thyroid antibodies by gong totally gluten free over a year ago so it's definitely worth giving that a try.

    It's not difficult once you get going.

  • Hi,

    I too wanted to avoid RAI or surgery. I adopted a gluten free diet, and a clean eating programme. I made sure that I took all the recommended supplements: selenium 200mcg daily, 1000mg Vitamin C with Zinc. Improved my iron levels, had vitamin D 3 tested and improved levels there too, and took plenty of magnesium (I don't hold on to magnesium very well) especially after the trauma to the body of an overactive thyroid.

    I continue to take these supplements especially the selenium, which the ophthalmologist told me was excellent at improving TED, and also keeping Thyroid antibodies down.

    After I stopped the Carbimazole, I also went to see a Traditional Chinese Medicine practitioner in Oxford, who balanced my thyroid function in a more natural way. I took his herbal remedy for 6 months.

    For a while, I also tried to improve my gut function by making my own kefir, and taking that daily.

    Somewhere along the line, it all improved so that I have been able to go through two knee replacement operations a week apart without any ill effect.

    It takes a bit of grit and determination but it can be done. Good luck to you.

    Arab. 🙂

  • Hi Sarah. I too, have Graves and TED (Thyroid Eye Disease). Welcome to this forum - I am so glad I found it - there are lots of people on here with a vast array of experience and knowledge in all the issues that can effect the Thyroid.

    Firstly, before you do anything drastic I would advise you to publish on here your latest test results. Be sure to include the numbers in brackets - they are very important as they show the ranges. If you don't have that info you can call your endo's secretary and request they send them to you. Stress that they send you the ranges too. It's your right to see all test results. People in here will then be able to advise you based on those results. Secondly, have you had your Vit D, B12, Folate and Ferritin levels tested? If so, publish these results along side your other results. If not, ask your GP or Endo for these to be tested. All of the above need to be at optimum levels before you can start to feel better.

    For the eye disease - I'm so sorry to hear you also have TED. I know how awful that can be. I felt like I was already falling apart due to the Graves and then my eyes started bulging, swelling, weeping just to add to my misery. The Graves had left me exhausted, my hair was falling out, my skin was a nightmare, I had brain fog, heart palpitations - you name it I had it - the only thing I was able to do was sit quietly and read or do a little work in the computer and then even that became impossible when my eyes started getting bad.

    I ask my endo for a referral to an Adnexal eye clinic - for me, living in London, that was Moorfields. You may really need to stress how disabling the eyes are and push for this referral - but it's worth it. I went along and at first they just gave me some steroid eye drops. These eased the discomfort but didn't help with the developing bulging. Next appointment I really argued again for some better therapy and they agreed to give me steroid infusions once a week for 12 weeks and pinpoint radio therapy at Guys Hospital everyday for the last two weeks of the 12 weeks of the infusion treatment. It was obviously a real commitment to do all these different appointments and it took over my life for about 3 months but I am glad I did. My eyes are not as they were before (I still have slightly swollen upper lids) but they are nothing like as bad as before the treatment. The swelling under the eyes has gone and they seem to have settled down. No more weeping gunck and they don't hurt anymore. I occasionally use the steroid drops - when they get a bit tired but they are much improved.

    I am on carbimozole and propranolol and although not better and constantly having to adjust my dosage (after each appointment with endo) I do feel better than when I was first diagnosed. It does unfortunately take time.

    The only other thing I would advise is that you consider very carefully any suggestion to remove the thyroid surgically. My endo said that after 18 months on the meds, if there was not vast improvement, she would recommend surgery. She made it sound as if it was a simple case of 'remove the offending thyroid and all would be well'. After researching this and getting info from real people who have gone through this on this site - it isn't straightforward at all and could well be a case of going from the frying pan into the fire. I would always suggest lots of research before agreeing to anything drastic.

    People on here are great. Post your results and you will get lots of advice.

    All the best and here's to a healthier tomorrow for all of us!

  • Hello 😊

    I'm currently waiting to get my most recent results sent to me but I have the ones before that. I haven't a clue what they mean but my endo is very good in relation to sending me a report after every visit. My previous were

    TSH fully suppressed at 0.02mlU/L free

    T4 37.8pmol/l free T3 13.7 pmol/l

    They make no sense to me at all, I've never has tests for anything else deficiencies ect

  • Thanks for that. Call your endo and ask for the lab print out of your results. It looks like your endo is just sending you the summary. What you need is the results with the ranges next to each result in brackets. The numbers in brackets are really important. Then you can see what your level is and how it compares to the optimum range (which is the stuff in brackets) For example it might say free T3 3.47 (3.0 - 7.5) this would mean that you are 'in range' but only barely. That's just an example but with 3 being the lowest end of the range and 7.5 being the highest - that info would tell you that your 3.47 is only just in range (barely). Does that make sense? So the range in brackets is important. Publish the info when you get it and others will be able to interpret for you. I'm not the best at doing this - but I posted my results with ranges and got really good info on what it all meant from others on here. So really worth doing.

  • That does make sense thank you :) I called the secretary this morning and left a message as nobody was in. Is it worth getting tests for deficiencies too? I'm still not happy about the removal I'd rather try keep going for longer until we even contemplate surgery. It's so frustrating!

  • Hi

    When I was first diagnosed with Graves and put on a high dose of carbimozole and and a moderate dose of propranolol, my endo said I could only use these meds for 18 months. That was in Feb. 2015. Since then, my meds have been adjusted down and up again by endo - depending on the most recent results of blood tests measuring my T3 and T4 etc. The hope was that my Graves might go into remission (this does happen for some people). The endo warned that after the 18 months, if there was no improvement then surgery or RAI (Iodine) threatment would be necessary. I did a huge amount of independent research - particularly looking at the long term effects of having the thyroid removed and decided I was not going down either of those routes - I also discovered that there are many people who take carbimozole and propranolol for years and are not forced to have surgery. The problem with surgery is that once the thyroid is gone you are then, in effect, hypothyroid for life and will need to manually replace the hormone yourself. The tricky thing is that your thyroid naturally produces different amounts of hormone as it is needed and replacing it at the right level is near impossible - you cannot predict how much or little you need - so getting it right is really difficult. Not having enough or having too little in your system will mean you don't feel well. So for me, I decided I wasn't going to have surgery just because of the Graves. It's a personal choice - but I would definitely advise 1) Do lots of research - read up on others stories - especially those who have had thyroid removal surgery. 2) publish your blood test results here (with ranges in brackets) so other users can give you specific advice 3) get your endo or GP to send you for a VitD, vitB12, folate and Ferritin blood test. If they say no - you can have them done privately. 4) if you should consider surgery - get a second opinion from another endo before agreeing to anything so permanent.

    Hope this helps.

    All the best.

  • Hi totally agree with what millea has said.your bloodtest show that your t4/t3 are high though really need the ranges to be sure that's the figures in brackets after numbers, so can see why endo gave you increase in meds.it can take some time to get dose right. The first time I was on carbimazole it was for 18 months then went in to remission for a while then went back on meds was like this for 12yrs on and off meds but felt reasonably well, then 7yrs ago had Rai was very ill after as didn't get right meds till very hypo. Don't let your endo make you have tt till your really sure that's what you want to do, in my experience they are just trying to make their life easier as it's easier for them to treat hypothyroidism cause once your on levo and are stable they put you back in gp's care.

  • Couldn't agree more Raventhorpe that's the same conclusion I came to abut the pressure to give you rai or a TT. Once you've had that you are then your GP's responsibility and it's up to them to give you enough thyroxine to make you feel well - or not, depending on your doctor's views on Levo - T3 - NDT. So do research and don't be pushed into making a decision unless you are sure it's what you want.

    I do have to say that I'm sure there are people out there who have had rai or TT and are doing well and very happy with their decision. People who use this site tend to be people who are having problems.

  • Like you I on,y ever had At4 and TSH tested. I felt shocked Hat they would talk abut rai should I relapse when they hadn't even tested my T3. At that point I started doing the Blue Horizon home fingeprick tests and now I know all about what my antibodies, my T3, T4 and TSH, plus vitamin D and B12 ( both really important for thyroid health) are doing.

    If it's any help when I started on carbimazole my pharmacist came out spit tell me to be sure and take vitamin C with the carb. I didn't ask why but I took 1000mcg slow release vitamin C every day all the time I was being treated and I felt very well.

  • I was eventually diagnosed when my thyroid swelled into a goitre and eyes bulged. Also lost loads of weight and periods stopped but was not pregnant. That was in 1970, so long time ago.

    I was given only carbimazole which was 12 pills a day- do not know what dose. But blew up like a balloon in 6 weeks and had agonising cramps. Also slurred my words, so was overdosed. The dosage was then gradually reduced until I was pronounced OK.

    2 years after remission it came back. I had a sub-total thyroidectomy which was a complete success. There was no RAI treatment in those days mentioned, but I was given iodine mixed with milk 3 X daily in hospital before the op to calm the Thyroid right down despite being on the carbimazole for 6 months beforehand. I rather liked the taste I remember.

    I never needed Thyroxine untill1996 when my Thyroid became slightly sluggish and have been on 50mcg since then.

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