Lora7again4 years ago

I would only have my goitre removed if it was cancerous because you face a lifetime of trying to manage your condition. Some people do fine but having been a member of several sites a lot really struggle to control their levels .. That is just what I would do for my own thyroid.

greygoose4 years ago

First of all, how were you diagnosed with Grave's? Did you actually have your antibodies tested: TRAB or TSI?

Santos82 in reply to greygoose4 years ago

T3 = 2.66 (previous 2.8)

T4 = 14 (previous 11)

TSH us = 6.57 (previous 0.044)

Anti-recepteur (tsh) = 5.04 (previous 2.52)

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greygoose in reply to Santos824 years ago

I'm afraid we need the ranges for those results, as I said. Without the range, results are meaningless.

Are the two results for now and when you were diagnosed? Because going by the TSH, it is now hypo.

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Santos82 in reply to greygoose4 years ago

I was not able to upload the photo to this post... however i already posted a thread 2 months ago with the pic results and ranges.

I was hyper then with medicines became hypo

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Lora7again in reply to Santos824 years ago

I just replied to and it seems to have vanished into thin air!

Here was my reply.

I know people who have graves' and have been taking carbamazepine for years adjusting the dose accordingly. As long as your Doctor does liver functions tests routinely (I had liver function tests and was fine) to check your liver isn't struggling. I have met a lot of people on sites in the US and here and I haven't come across many with liver failure although rarely it can happen. Doctors always tell you the worse outcome to cover themselves.

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Santos82 in reply to Lora7again4 years ago

But as you said, it will be difficult to maintain the correct levels if i do not remove the thyroid.

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Lora7again in reply to Santos824 years ago

I went into remission for 4 years and then my antibodies rose to 4000. I showed the blood results to my Doctor and he said they didn't matter it was the TSH that counted. I then decided to support my thyroid while it was under attack by taking Thyroid S for 6 months because my Doctor wouldn't help. Unfortunately Thyroid S made me hyper so I stopped it and here I am 6 months later. It is all in my profile except the thyroid S and the time I took levothyroxine when I was under Dr Skinner. Thyroid disease can be difficult to treat as you have probably already found out.

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pennyannie in reply to Santos824 years ago

It can be difficult to maintain levels whether hyper or hypo - both extremes need time and careful monitoring by an experienced thyroid consultant endocrinologists. In my experience many suggest " loosing the gland " as it's the easiest option for them, but not necessarily in your best interests.

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greygoose in reply to Santos824 years ago

Sorry, didn't realise you'd posted before, I thought you were new.

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Rustypoo4 years ago

Hi. The second doctor if this is your first occurrence of an over active thyroid. You may be lucky and not have a second occurrence so treat with meds’ first then see what happens.

I had about 6 occurrences before taking radio active iodine and now under active, so if it does “come back” then there are other options to surgery (although this does depend on symptoms eg if your eyes bulge then I believe surgery best, not sure of correct details on this though)

Good luck. Graves is not nice x

Erin604 years ago

It’s a tough choice and a Hobson’s choice to be honest. Graves’ disease is a bloody nightmare and very difficult to keep under control in my experience. I’ve been battling for over 9 years. Only experienced 18 months remission within that time.

Not sure if you are uk, but NICE guidelines on managing hypothyroidism isn’t great or optimum and many many people justifiably complain of being under medicated and this is a real concern to me as it’s virtually a foregone conclusion that definitive treatment for Graves RAI or thyroidectomy will result in hypo then the next lifetime battle begins and you are left with symptoms that although not critical or life threatening they can be life debilitating and as long as your tsh is ‘within range’ up to 4.4 it doesn’t seem to be addressed or titrated very often.

Going from Graves to this is scenario is not ideal but maybe you are not in the uk and have different options.

If it was me I would definitely give carbimazole at least one try (18 months) as this will give the best opportunity to go into remission then continue with blood tests every 3 months for 1 year and then 6 monthly for next year then once a year.

Good luck.

Mnmnmn in reply to Erin604 years ago

I totally agree with Erin90. I think you should give it a try for 18 months on anti thyroid meds and see if you go to remission and fell well.

I did get my thryriod removed in the end as I also had big nodules and positive antibodies for Hashimoto’s. Carbimazole worked for me at the beginning but then fell in a hypo phase also probably more exaggerated due to the concomitant Hashi’s.

Three months later after the TT and after only one dosage adjustment 2 months ago I feel great. I am full of energy, have a normal heart rate, I do lots of sports, I am sleeping deep, I having normal bowel movements, my hair is regrowing... It is a tough decision to take, and I am very glad I took it. However, I read in many places I am one of the lucky ones that work well on only Levothyroxine.

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Donna56584 years ago

Hi there,

There is a great website administered by a woman named Elaine Moore who is a science writer and also had Grave's Disease. She answers all questions and gives well thought out replies. She has been enormously helpful to me and hundreds of others who struggle with Grave's Disease and its aftermath. I just need to find her website address and I'll pass it on to you.

Donna56584 years ago

elaine-moore.com

pennyannie4 years ago

Hey there Santos

Sorry I missed your first post.

I am with Graves Disease and had RAI treatment in 2005 and became very unwell some eight years afterwards, I was very well on the anti thyroid medication and continued my work but I had no choice and no treatment options were given to me. I trusted the doctor and thought he knew best, and was totally compliant.

I regret this treatment and have learnt of my situation back to front.

Graves is an autoimmune disease, and it is your immune system attacking your thyroid.

The thyroid is the victim in all this, and not the cause. The cause is an auto immune disease and doctors do not know how to treat the cause, and simply treat the symptoms as they affect you, and by removing the thyroid, the target of the attack, remove many uncomfortable symptoms, some of which can be life threatening.

If I had my time over again I would stay on the anti thyroid medication and keep my thyroid. it is a major gland responsible for full body synchronisation, it regulates your core temperature, and your mental, physical, emotional, psychological and spiritual wellbeing.

T4 medication after thyroid removal does not necessarily solve your health issues.

The thyroid produces approximately 100 T4 + 10 T3 daily, and T3 is the hormone that drives and ignites your body, and this vital hormone needs to be available to you should you not find optimum health on T4 replacement alone. I now take Natural Desiccated Thyroid which I buy for my myself as I was not well on T4 only.

The second doctor is offering you the chance of staying on the anti thyroid medication.

I would stay with her, and discuss your concerns regarding liver damage. She can monitor this for you. Considering you are wanting to play football, I'm guessing you are relatively well on this treatment regime and think this is where you should try and stay until you symptoms tell you otherwise.

It will be a good idea to ensure that your core strength building blocks are optimal, and suggest you have your ferritin, folate, B12 and vitamin D tested. When your metabolism goes too fast, or now maybe too slow there is the chance that your body hasn't been able to utilise the nutrients it needs through food and this area needs to be strong to support your body through this period.

Graves tends to be stress and anxiety driven. It might be an idea to take a look at the following website. Elaine Moore has the disease and has dedicated her life for research and helping other people with the disease. Apart from covering the factual, there is a strong suggestion that we Graves people need to take back some control, look at life style and work choices and seek some understanding and acceptance of why this might have happened. I read Graves can be triggered by a sudden shock to the system, like a car crash or an unexpected death, or just maybe something happening totally " out of the blue " and upsetting you .

beesting1966 in reply to pennyannie4 years ago

Thank you for sharing this as I have found it of great use.

I have hyperthyroidism and Graves. I was started on 20mg of Carbimazole and then reduced to 5mg this has been for 18 months but it took 12 months for me to start feeling a bit better. After my last visit to my consultant 6 months ago he decided to stop my Carbimazole, since stopping it all my symptoms are back with a vengeance my core temperature too high feel like I'm boiling up inside, and my mental, physical, emotional, psychological and spiritual wellbeing all over they place feel low inside. He also suggested that I have RAI which I really don't want to and would just like to go back on the medication.

I just don't know what d to do and do not want to be pushed into anything.

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FarmerDJ4 years ago

If this is the first time you've been hyperthyroid with graves the yes the second doctor is correct, it can go away. If it returns a second time then that is normally when they would consider surgery or radioactive iodine treatment to make you hypo. There was a 15 year gap between my first bout of hyper and my second. The liver function will be monitored.

FarmerDJ in reply to FarmerDJ4 years ago

Sorry I meant to say the second doctor is correct, its early and my brain isn't working yet 🤣

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Lora7again in reply to FarmerDJ4 years ago

Sorry I don't agree with you ... I am going to treat my thyroid and I won't have it removed just because a Doctor tells me to. Doctors couldn't even diagnose me for years and I was offered antidepressants and counselling .... I have no confidence in the medical profession when it comes to thyroid disease. This is only my opinion btw

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FarmerDJ in reply to Lora7again4 years ago

I meant to say the second doctor and not the first is correct. We need an edit button

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Lora7again in reply to FarmerDJ4 years ago

there is one under more

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FarmerDJ in reply to Lora7again4 years ago

Thanks I found it.

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hattersteapar4 years ago

I was diagnosed with Graves over 2 years ago, I'm on block and replace at the moment. My consultant has not even mentioned RAI or removal.

I'm due to see him again in September so will wait and see if my anti body levels are low enough to begin stopping treatment to see if I go into remission. There is a 50/50 chance it will begin all over again, at least if that happens I'll know what the symptoms are.

I'm not prepared at the moment to do either surgery or RAI .

I'm going to try and continue with block and replace.

Ryanzz4 years ago

Don’t be pushed into having TT. Second dr from my understanding is wrong. Graves‘ disease will not go away. You have it for life. There’s always the chance it could go into remission.

Santos82 in reply to Ryanzz4 years ago

So you would suggest surgery? Why not give it a chance?

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Ryanzz4 years ago

No. Definitely not as a first option. Total thyroidectomyis loosing a major gland and no going back. My first option is meds. I can then reassess at a later date if necessary. This is what I am doing at the moment and it works for many people. My thinking is I’m only stopping one lot of meds for another and no guarantee it will work.

pennyannie4 years ago

There is no cure for Graves Disease, it is an auto immune disease and as such, that means that you have it for life, it is in your blood and in your DNA and something happened to trigger it to attack your thyroid.

Removing the thyroid simply reduces the most extreme symptoms that you may have experienced. The thyroid is such an important gland, that when it comes under attack some people experience life threatening symptoms. and do not have any option but to have their thyroid removed.

My symptoms were minor, compared to what I read others have experienced.

I was ok on the anti thyroid medication and would have liked the opportunity to stay on the medication in the hope " riding out " the hyper phase .

I think my age at 56/57 was the deciding factor as to treatment offered, and I was told I was to have RAI. I didn't know enough to question the doctor. More fool me.

My thyroid is now burnt out, and I live with some symptoms that maybe Graves related. I have also lived with the more debilitating symptoms of hypothyroidism and have also suffered the consequences of drinking the RAI toxic substance that has caused damage to my salivary glands and gastric mucosa. In fact I have been more ill since RAI treatment than before when on the anti thyroid medication.

As previous mentioned I am now buying my own thyroid hormone replacement as T4 only did not work for me.

P.S. RAI also left me with thyroid eye disease as well as Graves and hypothyroidism to try and manage. I know you are not considering this option, but just thought you should be aware, that sometimes, some medical people don't necessarily tell you the full details and living without a thyroid does not solve the problem, you are simply swopping one set of symptoms for another set of symptoms that may be equally difficult to manage as it needs expertise and understanding on the part of the endocrinologist.

Sorry, end of rant - take good care, read up and equip yourself as best you can.

beesting1966 in reply to pennyannie4 years ago

When I see my consultant next week I will be remembering this and refusing RAI

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purple644 years ago

I would go with the second doctor. Just make sure they check liver function as well

Tconn734 years ago

Hi

Sorry to hear to are going through this , I also have been diagnosed with Graves’ disease about 3 years ago I was put on carbinminozole for 12 months in this time my levels were good , my dr then said come off the medication and within ten months I had gone back hyperthyroid again , so I saw another dr who said to remove my thyroid I’m back on medication again since January and will be taken off it again around Christmas, was disappointing as I feel so well on the medication however I’ve been told I can’t stay on it long term as I’m 46 they think surgery is a better option my dr said if I were in my 80s they’d just leave me on medication , so I think it seems to be the procedure to leave on medication to see if thyroid returns to normal and if not it’s then the operation

Good luck with your journey

beesting1966 in reply to Tconn734 years ago

I'm going through this now but I will be fighting not to take the RAI as i have only had one bout of medication

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Tconn73 in reply to beesting19664 years ago

It’s a very difficult situation isn’t it , I’m on my second round of medication but I don’t think it’ll work I feel as though as soon as I stop the tablets I know it’ll go back to hyper again ! But at least I’ve given it two goes ! Good luck with your journey x

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beesting1966 in reply to Tconn734 years ago

I know as soon as he said it and he told me why was I scared to stop it 'I said I knew I would go back hyper and have the awful pain and feelings back.

Good luck to you also, thanks again.

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beesting19664 years ago

Stay with the second doctor, I am going through the same thing with the Registrar to the consultant trying to keep me off medication and do RAI I will be fighting it.

Good luck

barbarela24 years ago

Try everything else and time before surgery. There is no going back and it seems to be a lifelong balancing act. There is lots of information on here regarding diet and supplements. It is true it can resolve in time.

Valarian4 years ago

I have Graves, and although I’ve been mostly euthyroid for quite a while now, after more than two years I still haven’t reached the point where I can come off the medication.

In your position, if it’s the first time you’ve been hyperthyroid, I would definitely stick it out with the medication for at least 12-18 months to see if I could achieve remission.

After that, you may need to weigh up how stable your Graves’ is, and what dose of medication is required to keep your thyroid levels in range. Unless you achieve remission, there are probably only ‘least worst’ options, and although lots of people here will tell you what they believe is best for them, in the end, they aren’t in the same position as you, don’t know your full situation - and only you can decide what is right for you, although people here can help you be better informed.

Perhaps the main thing to consider at the moment is that if you stick with the medication for now, RAI and surgery will still be potential options for the future. However, once you’ve had RAI or surgery, you no longer have the option of remaining on medication.

Santos82 in reply to Valarian4 years ago

Thanks for your message.

If i do rai or surgery i will need to take medication rest of my life.

You are 100% it is me that needs to know better what to do... maybe surgery (removal of thyroid) will be more convenient decision since i wouldnt feel tired (hypo) and have few insomia .

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Valarian in reply to Santos824 years ago

Yes, but you would at least be taking a synthetic version of a hormone which is produced by the body rather than an antithyroid. The worst side-effects of antithyroids may be pretty rare, but they never vanish entirely, even on a comparatively low dose and after some time taking them. There are also the risks of having an elevated heart rate when your thyroid levels are high, and even thyroid storm.

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tgirlnc in reply to Santos823 years ago

Hi Santos82

Just curious if you are still debating? I have Graves and have been in remission for nearly 2 years..and was on anti-thyroid drugs for 6+ years. You can stay on the drugs for a very long time if you tolerate it well and get liver values checked.

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Santos82 in reply to tgirlnc3 years ago

Im

Trying to reach remission now

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Hidden3 years ago

Did you see either or both doctors privately?