Hi, I'm Adam. 28 and diagnosed with Graves disease with the lovely Hyperthyroidism back in around 2010 though I'd had the symptoms for probably 12 months prior.
I was advised to join this community yesterday after having a really bad day mentally and suffering with the depression aspect for the last few months and needing to do something positive about it.
This site looks like a great mix of those just diagnosed, those who have been having treatment and those who are on the mend and living their lives better than ever so it's great to read all these views.
Unfortunately Graves doesn't seem to be well understood by the public, the name itself scares people when I tell them I have it, so people don't really know what it does and the effects it has on a person. I'm unrecognisable from the person I was before both in appearance and personality.
After taking carbimazole for 18 months and regular blood tests my levels seems to go back to normal. Though I still didn't feel quite myself I was taken off all medication but still with regular blood tests. In what was supposed to be my last one my levels changed and a future tests showed I'd gone back and was put on medication once again. Bloody gutted. The weight loss comments are nice though.
I'm soon either getting an operation to remove that troublesome thyroid or taking radioactive iodine, neither of which I'm looking forward to but if it fixes me, or starts to, then great. That's what we will discuss in my next trip to the hospital.
I just hope I can get advice from everyone and similarly give my advice.
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adamskylark
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Hi Adam, So sorry your bloods are showing you have gone back to hyper. I suffered for a year up and down but never actually managed to become stable, so eventually had a thyroidectomy. I think you should not rush into treatment. I wish I had tried for longer but I also had thyroid eye disease, which you do not mention, so hope you are only dealing with hyper symptoms. I was terrified of the eyes becoming worse and I think it coloured my judgement. I have since been told that Graves eventually often burns itself out. You might then become hypo but at least would not need TT or Radioactive treatment. Why not ask if you can continue on carbimazole for longer? I have read posts on this site where people have been on it for years. The fact that you managed to become stable once is very hopeful I think. Try and wait before you let them persuade you into either treatment. Good luck!
Totally forgot the eye disease, yes I also have that though that's a recent thing that's happened since I went back hyper.
Maybe I will, my doctor didn't give me that option instead saying I has 2 choices, radioactive treatment or surgery. Thank you, I will discuss this with him.
You'll find lots of useful information on here and lots of lovely people who understand, sympathise and helpful.
Try and gain as much information as you can on here - maybe put "graves" in the search bar at the top of the page and spend a few days just reading and trying to absorb as much as possible. This could be doubly important with your pending appt coming up regarding the removal of your thyroid.
Things can only get better now you have found likeminded people to communicate.
Moggie x
p.s. If you want to answer anyone in particular you will need to click on the "reply to this" in blue under their name and they will get an email to say you have replied to them - it saves people missing your replies or further questions you may want to ask them.
Yes it is a wonderful place when you want to research and gather information and if people on here don't know the answer the usually direct you to a site where you will find your answers.
Sorry about my first reply, just read it back and noticed a few typo's. That's what you get for typing to quick.
Good luck with your information gathering and let us know how you get on - especially with your appt.
You need to make the best decition for you, try and get as much advice as you can but do what you think is best for you. I was diagnosed graves in January this year and not getting on well with the drugs, they had to take me off the drugs last week as my immune system was compromised so feeling like a ticking time bomb till i have my thyroid removed later this month. I agree the name of our condition is not good I tend to tell people I have a thyroid problem, and although they all pipe up with "i know someone with an under active thyroid, they got really fat!" and I have to explain I have the opposite! I tend to find it's only people on this forum that actually understand what you are going through. From what I have read in Europe it is popular to try drugs to control the condition as the preferred option but the US seem to go for removal or RAI pretty quickly. I don't think anyone really knows the best way to treat this condition. In many ways I think I am lucky that I don't really have a choice about surgery as my body doesn't seem to be able to handle the drugs and as I have two young children so RAI is not an option for me. I'm sure I will be back on the site post op and hope I can at least give you my first hand experience of the op but if I have learnt one thing it is so personal having graves and the symptoms vary person to person so you only know how you are coping and therefore what next step you need to take for your health and your sanity!
thank you, I didn't notice anything overly terrible on medication though I was picking up colds/flu a lot more which may have been something I should have spoken to my doctor about.
I'd definitely rather treat it to control it, the operation and radioactive treatment kind of scare me a bit. My Dad did the latter and says it's fine but I don't really trust it I guess.
Good luck in your op, hope it all goes well
Hi Adam
I also have Graves, diagnosed last July, on Carbi since August. I'm stable at the moment but doc wants me to keep on the meds (5mg) for the full 18 months, so another 6 months or so. I'm also not very keen on the idea of RAI or TT, and I've definitely seen people on here who are off and on the Carbi. Obviously not ideal because of the neutropenia thingy risk (you can see I'm up on things!) but my Endo did say to me the other day that if you're going to get that it tends to be early on in treatment? I'm sure someone will be along to correct me if that's wrong. Obviously some people have had so much trouble with their overactive thyroid that they're glad to see the back of it, everyone is different so you have to do what's best for you. However, Endo's do seem very keen to do the RAI or surgery option for reasons I haven't worked out yet.
I would say that us Gravesians, like our fellow Hashi's sufferers, can also have problems with low stomach acid and associated mineral and vitamin malabsorption problems. So if you haven't already done so make sure you get tested for the big 4 - B12, folate, ferritin and vitamin D. Being low in any of these could be a factor in the depression side of the condition. If you have these tests done post the results with ranges on the forum, as being told you're "normal" just means you're in range, and those ranges cause more problems than anything else talked about on here!
That's how I felt at one point - I just wasn't 'me' any more and I didn't know where the real me had gone. Very strange feeling.
I write everything down that I want to ask, in fact I keep a diary of everything then summarise it to take the man points with me when I go to the doc or endo. I just say I have written it down because I can't remember things. I'm sure I read on here somewhere about someone who does a copy for their endo and gives it to them when she goes in - then works through it.
Hi Adam, really sorry to hear that you have gone hyper again.
I have Graves too, started block and replace in November. The endo explained all the options and explained the two drug methods, titration where you are on carbimazole only, and block and replace where you take carb and thyroxine two, he said they (that hospital) use block and replace which he described as 'the fast method' then said that I 'would be with them for two years'. Two years didn't seem all that fast to me.
Is it possible for you to have another course of Carbimazole? I have read that some people have done that. I'd try to hang on to your thyroid for as long as possible, once it has gone - it has gone. I'm hoping to stick with Carbimazole if this doesn't work first time round.
Reading about the experiences of people who have either had it removed or had RAI show that often life doesn't get any easier once it has gone so read all you can on here and in books before you make any decisions and don't let yourself be pressured into anything.
That's exactly my worry, I don't want to get rid of it and then have to deal with all the things that comes with now having it when I could just medicate and treat it.
Liz, who posted above, is so right. As I said in my earlier post, I wish I had waited longer before going for TT. My endo was an arrogant, unhelpful, cold man, which probably did not help in my decision making but although the op itself is no problem, I have been left with chronic symptoms which are proving hard to resolve. I won't bore you with it but would say again, hang onto your thyroid until absolutely sure.
Yeah my Endo isn't the best, he seems friendly enough but it's more "Here's whats we're doing, goodbye" kind of thing not explaining and giving me options. I mean I have no idea what al these levels people post mean because honestly I've not been shown them or had them explained to me by my Endo, I've just been told this is wrong so we must fix it
If your endo hasn't given you a definitive health reason why you CAN'T have another go with the carb then I don't see how he can refuse you and possibly he won't
If you do need to have a more permanent solution then try not to get too stressed. As my name suggest I've had a full thyroidectomy (necessary to save my eyesight I also have TED). When it works it works beautifully, with no thyroid to interfere with your hormone levels it is possible to find the dosage that's correct for you and keep you uber stable try to remember that most of the people on these forums are sadly having issues but that there ARE a lot of people out there feeling healthy and happy - one day you could be one of them again xx
Well, I would really recommend those vit and mineral tests, just make sure those things are optimal. You can google "low stomach acid" "achlorhydria" or "atrophic gastritis" if you've got a few weeks to spare! I also have Pernicious Anaemia (B12 deficiency) so it's kinda my pet subject on here and I bang on about it way too much I'm sure annoying lots of people who just want some thyroid type info!
For Graves info and articles it's worth having a look around this website:
If someone asks what's wrong with me when I say I've been ill, I find a quick "I have Graves Disease and Pernicious Anaemia" shuts then up with a stunned look on the face, as they have no idea what either of those things are
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Sorry, meant to post this under your reply above, pressed the wrong dang button again.
haha, yeah saying 'I have Graves disease" certainly suts them up though also led to a few awkward moments where people pay me a compliment, "Oh you're looking slim" and I instantly go "yeah I have graves disease/hyperthyroidism". haha. I can't just say thanks when I've not done anything to lose weight. People are understanding though
You are so lucky to have found this site. I am not sure it existed when I was going through my Graves saga but it is helping me so much now, trying to get doses and meds right. You are at the bottom of a steep learning curve and will soon know more than your endo! I am afraid we are not generally very complimentary about them here. A good one is rare but at least if yours is friendly, you maybe able to coax some cooperation out of him and have him treat you as a real person, instead of just an appointment in his busy day. Learn all you can and go for it!
Welcome to our site. For your information, this is an extract from an article on Pulse online by Dr Anthony Toft who was President of the British Thyroid Association.
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.
Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.
Hi thank you for posting this you have explained everthing i needed to know about hyper, goiters and treatments, why on earth has no one expained this to me before, i now understand the reason behind my forthcoming surgery
I have no explanation as to why things aren't explained. I just imagine that these Endos do not/have not a thyroid gland problem and haven't a clue what havoc it causes.
I am hypo and if someone is hyper and it is difficult being brought under control, every option should be explained clearly and also the consequences. Optimum hypo treatment should be given, with alternatives offered if not doing well on levothyroxine but that is mostly not the case.
Hi Adam, I am a Gravsian, (I agree a fab name) and about to undergo surgery, I have been on mega doses of Carbi to no avail and my thyroid just will not behave. I have my endo appt today as a matter of fact to see when and where. I too have eye disease and have appointment at the eye hospital, next Monday I undergo an MRI (yuk) so I am hoping that a full thyroidectomy will give me back me......I hope the same for you but do read as much as you can and keep informed it is the best way to make sure you are on top of everything. I try and take someone with me to my endo appts as I forget half the time what they say...they just take notes for me and make sure any questions I have are asked if I forget. I am one of the lucky ones in that I have a fabulous GP and a great endo and have great faith in them both. I have found walking is a great andedote for me too, don't ask me why but it works....makes me tired but hey I am tired anyway :o). I wish you well in your journey over the next few months.....this site is quite fabulous at keeping your spirits up. Take time for you you Adam and if people don't get Graves tell them to use google like we had too eh......
I've just had my TT op, 18th June, it was a very rocky road at 1st but I feel on top of the world now , I've had graves for nearly 2 years, and have very severe T eye disease, I saw my eye specialist (well one of his team!!!,,, after being promised a meeting with the MAN himself !!!!!) but I've been told my eyes are still very active even after 2 years!!!!! So no ops yet, I look like an ogre, popping eyes very puffy eyelids, severe double vision, I can't go out alone, because I am too unstable, but hey, I've got a great set of friends, now that my old mates from work know about my illness, i kept quiet about it until I had my op, and the messages on Facebook have been fantastic, I have the old me back at last, onward and upward I say, don't let the evil antibodies win,,,,,,, xxxxx all the best to all you fellow Gravesians my heart goes out to you all xxxxx
I've been fighting graves for three years with all the bells and whistles, weight loss, palpetations, mood swings, no cognetive thought, no sleep etc etc........This site has some great advice and we realize we are not alone. Word of warning, I had the Radio Iodine treatment in March and I feel BLOODY AWFUL!!!!!!!!
GP telling me it takes time blah blah blah, Endocrinologist ???????. My last bloods show me as slightly hyperactive (which I told them I thought I was) but they say can't happen!!!!!!
It was only after some reading of the posts on this site I really looked into this, tell your GP and Endo how you feel, take someone with you as back up. If you are sympyomatic then you are not well.........................( I only have to practice what i preach......!!!!!)
I'm on 5mg Carbimazole and will be coming off it in August after 1 year. I have no idea if I will go back to the "old" me as I don't really remember who the "old" me was. So I am happy to be a "new" me, so long as she is slimmer than I am now. I put on the weight instead of losing it! No text-book Graves for me, so August is going to be interesting
I've never felt depressed, I've only ever felt "down" and "fed up" and "apathetic" periodically. To overcome these I tend to throw myself into cooking (& eating!), reading, painting etc etc - these also relieve stress which is the biggest bummer for my thyroid.
I don't fancy a TT or RAI if my thyroid doesn't stay in remission as if I have Graves, I think I will always have it, and be hyPO too. Then I have 2 problems instead of just 1. I will just have to see how things go. I am hoping of starting a family next year or the year after if all goes well, I don't want to do anything permanent to myself just yet.
Hi Adam, my son became ill around your age. He was in a stressful situation and I think it's a trigger. He was on a beta blocker and one similar to your antithyroid. I told him to take selenium and magnesium. With all the treatment he is in remission and is now 36 years old. I guess it can reoccur but often after two years it will go into remission. I hope it's the same for you. stopthethyroidmadness.com/s...
He was working on a medical PhD so I would send him research papers I found and let him plow through them. And being in another state and in the lab all the time I really couldn't keep up with everything he did. He's even further away now but I see him occasionally and he looks good.
The trouble with testing if it's serum is that those don't really reveal what is going on in the tissue. I know selenium is a concern since too much is harmful. I think you could safely try it for 90 days.
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Spent All morning reading this site now Ive found it.
Hi , new to this site . Autoimmune thyroid !
Set back in recovery looking for reassurance!!
new to Graves disease
