I was diagnosed with Graves' Disease yesterday via a thyroid scan. This is my second bout of hyperthyroidism and I've never felt so rotten. I have no energy, my emotions are all over the place, i'm distracted and can't make decisions and I feel sick a lot of the time with a constant headache, sleep patterns are all over the place too. Now i have a big decision to make and Radioiodine seems to like the best option but I've read about so many people who have had awful experiences on this.
I'm still managing to go to work but i'm literally eating, sleeping and working. I'm wondering anyone else in the same position is getting on, are you managing to keep going? Have you any thoughts / experiences on radioiodine versus surgery...... An added note that i'm 29 and although my partner and I weren't planning on trying for kids any time soon it is something we both want to try for in the future, can RAI affect fertility??
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Lynsey83
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why do you have to make a decision just now when you are feeling so rotten. I was put under a lot of pressure to have either RAI or surgery, I have Graves and have just got my bloods back to normal after my second bout of Hyperthyroidism.
I have dug my heels in and refused either just now. It has taken 2 years to get things normal but to me I preferred that and didn't feel enough confidence in my Endo or the after care support she offered to go down that route.
I am one of the unlucky ones that put on loads of weight and have struggled to get it off and am still struggling but for the time being I would rather stay on carbimazole than make what is such a final route.
I told my Endo if it was life threatening then I would definitely go that way but only once I have seen another Endo because mine is dreadful. I am now refusing to see her full stop.
No one can force you to do anything you don't want, it hasn't been easy but I am glad I have stuck it out. You can stay on carbimazole long term if you choose. I notice you didn't mention that as one of your choices.
I only had the courage to stand my ground because of the great advice I have had from this site.
This is your choice do not be rushed into anything
I'm generally quite confused about it all to be honest. I returned to the thyroid clinic for the first time in about 2 years after I started having hyperthyroid symptoms again and saw a very matter of fact consultant who said basically as far as he's concerned I have recurrent thyroid disease so he would send me for a thyroid scan but I should start thinking about whether I'd want to go for surgery or radioiodine next. I wasn't expecting this and was at the clinic alone and left a bit shell shocked. I went and got my thyroid scan yesterday and they were very nice, explained the pictures taken and said that I have Graves' disease and that I should start thinking about what treatment I want, either radioiodine or surgery.
I'm not currently on Carbimazole, I had a bad reaction to it the first time my thyroid went hyper and it made me physically sick quite often so was put onto Propylthiouracil, this worked fine last time and I was then put on both Propylthiouracil and Levothyroxine and eventually was able to come off of both when my T3 levels went back to 'normal'.
This time however I've felt sick all the time and had constant headaches, I feel more nauseous when I have to take the Propylthiouracil tablets and I get really bad acid reflux right after taking them for over an hour. Everyone I've seen has said I have two options, I guess I need to ask about the possibility of staying on medication as they seem to be very against this. I have an appointment with my normal doctor tonight to get my latest blood results, I think they were concerned about some of the Propylthiouracil side-effects from the symptoms I've been having.
Thanks very much for the reply, i feel very lost / overwhelmed and I guess I tend to assume that doctors know what they're talking about so don't feel confident questioning them.
I feel for you, Lynsey - it's horrid when they throw all this at you. And I see that you've been offered as much advice as most of the people who use this site: 0. I'm a bit puzzled as to why you're anti the radio-iodine or the surgery when you're feeling so rotten, and the meds that you've been taking make you feel rotten too? When I had my thyroid blasted the consultant mentioned surgery in passing as a last resort - and as I sing a lot there was no way I was letting anyone with a sharp knife anywhere near my vocal chords! I'd been on Carbimazole, which I hated; and Prop-thingummy, which was no longer hacking it. So I agreed to have my thyroid zapped with RAI. This didn't kill if off completely - I still have some function, as I understand it (!) But a few months later I became hypo (as 'they' explained to me, most people in this situation do) and needed thyroxine (which is when the trouble started ...). But RAI itself worked pretty well for me. I had a goitre which disappeared quite quickly after the RAI (I had wondered whether I was stuck with it for life). Is it the prospect of being hypo for life that puts you off the RAI/surgery solutions?
Sorry it’s taken me so long to reply, I’ve been burying my head in the sand a bit of late. To be honest I wasn’t anti radioiodine until I joined a few forums and found out about so many people with bad experiences. I’ve always been anti surgery, probably because my mum had hyperparathyroidism in her twenties and they took too much of her glands leaving her on countless medication for the rest of her life and as vain as it sounds a big scar. The surgery thing also terrifies me because of the risk to your vocal chords and I don’t know why but I’ve always been funny about my throat, I hate even touching my own let alone letting anyone else near it.
Otherwise the forums have been amazing but just a bit scary. It really helps to see that other people are dealing with similar stuff because it often feels like no one understands because they can’t see anything physically wrong with me. I guess the thought of thyroxine for the rest of my life scares me a bit too…I don’t think I was prepared for any of this; I think I just thought it’d be like last time, my thyroid goes wonky, they play around with meds until they get it under control, I’d be on medication for 6 months to a year and then it’d go back to normal.
I feel a bit like I’ve had this diagnosis thrown at me with very little support or info from any doctors I’ve seen and trying to research this stuff yourself is a minefield. I’ve also seen various things about how Graves’ disease is an autoimmune disease so either surgery or RAI will try and sort the thyroid side of things but that there is still some underlying cause of the autoimmune disease which makes me think shouldn’t they be looking for that.
I’m being a very mature 29 year old and taking my Mumsie with me to my next endo appointment so hopefully that will help since she can take in and help explain stuff I don’t understand and ask the questions I’m not brave enough to ask. I’m starting to wonder if it’s to do with Graves’ or not but I can’t seem to focus on anything or maintain a logical train of thought. Wah this isn’t fun! Everyone’s help, suggestions and comments are soooo appreciated though so thanks xx
I've recently stopped my Carbimazole and am doing fairly well, although I now have a doozy of a cold (nobody should produce this much snot!). It is up to you what you decide although the Endo should be giving you the unbiased info for all 3 courses of action (surgery, RAI or pills). The way I think of it, do I want to put up with recurrent hyper thyroid intermittently in my life, or hypo thyroid for the WHOLE of my life, as that is the likely course with surgery or RAI. You could say it looks like a lose-lose situation but my hyperthyroidism was never bad enough that I was hospitalised or off work, in fact I won many awards for my "amazing contribution", I felt like I was on rocket fuel before it all burnt out. Weigh it all up. I am also 29 and we are looking at trying for sprogs in the future but I want the energy to be able to run after them. My fear is that I would become hyPO and undermedicated, unable to look after myself of my family, therefore being a bit hyPER every now and again might not be such a bad thing. Unless it kills me :-S but then I would hope I would be smart enough not to let it get to that stage.
Thanks GraniteCityGirl, i think the endos are very much of the opinion that something has to be done so I need to ask why they feel that way in my case. I have a friend with 2 kids under 4 who has hypothyroidism and she manages great. It's confusing as I didn't feel this awful last time, I have zero energy and only the occasional late night energy burst. I've taken 2 days off work since I started back on medication and I'm really struggling to keep going at the moment. I don't want to take time off as I'm not going to wake up feeling magically better but I'm so worn out and forgetful / scatty minded I don't want to make mistakes at work.
I think it's difficult for managers as they can't see anything physically wrong with you. I'll speak to my doctor tonight and see what her thoughts are as a gp. The WHOLE life things is scaring me too. But I'm confused by the doctor yesterday telling me that their was a 25% chance I'd go hypo after RAI as all I've seen online is that EVERYONE who gets it goes hypo and as I've not bee hypo I don't know if it's easier to live with or harder than hyper.
Thanks for the info though, you've given me more to think about. I hope the snot clears up soon
I myself don't react well to being pushed in a certain direction, particularly from Doctors or Vets. It is enough to set my back up and dig my heals in It is also enough to make me very suspicious of their motives. Where I am, as a hyPER patient I am the responsibility of my Endo. HyPO patients are looked after at the GP level, which is great if you have a knowledgeable GP, but alas as we find out on this site, those are far and few between. At least with the Endo I have my bloods taken regularly, TSH, FT3 and FT4. Many people only ever seem to get their TSH monitored.
They are both really rubbish , Ive had both Hyper in pregnancy and then due to too much Carbimazole after I gave birth it went under active. There isnt a lesser evil Im afraid x
I had recurring Graves many times ( first in my teens and last in my 40s ) and always difficult to control. I had partial surgery in my teens and RAI in my 40s, I am now Hypo but it is so much easier to manage.
You only read the negative stories on the forums, very rarely the positive side of things as all those people are well and busy getting on with life. Don't assume you will be worse off after surgery or RAI, nobody has a crystal ball but there is no reason to think that. I know many who have had either and also had both and are absolutely fine.
You have the chance to be rid of the ups and downs of Graves, I didn't hesitate, in fact I asked for RAI as enough was enough.
Only you can decide which way to go, good luck.
Hi there
Sorry to hear you're feeling so bad, you have my total sympathy as I know exactly how you feel. I was diagnosed with Graves in 2001 and had RAI in June 2002. I wasn't offered surgery and Carbimazole made me feel ill so I felt it was my only option. I didn't research it that much at the time as to be honest I was an emotional wreck and just wanted to feel better so wasn't aware of side effects. I think sometimes we can research things a little too much and it can get quite scary!! Anyway, after the RAI I felt great for 3 months and then started to feel really tired and was diagnosed with hypo. I was started on thyroxine and have been on it ever since. I know it sounds scary to think that is it for the rest of your life but if I think about how I felt when I had Graves I never want to feel that ill ever again. Everyone experiences hypo symptoms differently and at times I feel so lethargic, but I try and eat quite healthily and get plenty of exercise when I'm feeling good. My opinion on RAI is that it was the right decision for me at the time.
As for your fertility after RAI, again everyone is different, but I got pregnant first time trying 6 months after RAI and my lovely girl is nearly 10 now.
I hope you manage to come to the decision that is right for you and wish you all the luck in the world.
Thanks for this Liz, I meant to reply a while ago but I've been avoiding dealing with things and avoiding trying to make a decision. Everything you said is really helpful so thank you very much. I have a friend who is hypo and she manages it well so she could give me tips if I end up that way after RAI...which is the option I think I'll go for. I'm just wondering how long it will take to schedule treatment as I've got my anniversary with my partner and my 30th coming up and really don't want to not be able to hug anyone or be close to anyone for either. Can I ask how long you had to be off work when you had RAI? I'm worried about work as my manager hasn't had any conversation with me since I told him my diagnosis.....I won't be allowed to be in work for a while since i work in an open plan office and I don't even know half of the people who are mostly female and could be pregnant. The thought of being radioactive is definitely scary....
Hi Lynsey, I was told to take a week off work (that was back in 2002). I think I had it on a Friday and didn't return to work until the following Monday so that was about 10 days away from the office. Also, my partner spent a couple of nights sleeping at his sisters and then for the rest of the week we slept in separate rooms, just to be sure! I also stayed away from my nephews and nieces for that week as well but after that I was told it was fine to resume close contact. I made the decision to have RAI 2 months before I got married...a time when you don't want to be making major decisions about your health, but I just wanted to feel better and get on with my life and for me that was the easiest option. Whether it was the best option, who knows, but I'm doing good 11 years on. Let me know how you get on will you and feel free to ask me anything!
Thanks Liz. It really helps to hear from someone who's been through it and come out the other side. I'll let you know how I get on at next week's appointment after which the next step and time-frame should be a bit clearer. Thanks again xx
It's a very difficult decision but not to be made in haste.
Everyone is different especially as the support for both hyper and hypo is so variable. RAI wasn't a difficult decision (aged 30) for me because I was dangerously ill with Graves.
However - if I had my time over again and with access to much more information from sites like this then I don't think I would have made the decision in haste like I did and with no knowledge of the consequences.
That said, I was also incapable of making rational decisions. It makes me extremely cross when I hear the same old rubbish about RAI still being sprouted all these years later. It would be good to know from reliable statistics how many people actually do go hypothyroid after RAI. You need to be better informed and they aren't going to help on that front.
I find it very difficult to believe it is 25% of people going hypo after RAI. I believe there is much information on the net to say the vast majority outcome is hypo.
I would suspect their motives for pressuring and misinforming you as it is an easy way for them to get you off their books - easy enough to 'mislead' you on that %.
I would ask them to provide their evidence.
When faced with difficult decisions especially when you feel you have no control, I find lists help. A table of all the possible options and the advantages and disadvantages of each option can be really helpful to sort the wood from the trees.
You need to ask more questions so they see you cannot be bullied or fobbed off with half truths. It is their job to provide full, honest and unbiased information and it's your life.
There's no going back from TT or RAI so be kind to yourself and give a bit more time to make a considered and informed decision.
Good luck and keep posting xx
To cut my reply short I have very severe Graves' disease and thyroid eye disease, I am extremely ill but since my thyroid removal operation my antibodies have gone scatty and are seeking revenge on my whole body and mind, my life since my operation has been hell on earth. I get superb support from this forum and many other Graves' disease forums, check out the surviving Graves' disease face book site and recovering with T3 Facebook and website, the internet is full of wonderful helpful people and advice, please really study your options and don't let anyone pressure you into this massive decision, try and stay on your hyper meds until you yourself are ready to make your own mind up. My heart goes out to you, big hugs xxxxxx
Check out Paul Robinson he has helped me so much. He has published a book called Recovering with T3. X
HI L. It's impossible to advise on what is a personal and far from objectively clear matter, and a difficult decision. This is just to set out a few perspectives from when i had a look at the topic thinking it was on the cards.
I ended up losing my thyroid to a total thyroidectomy following a diagnosis of cancer, also in rushed circumstances where there was no official discussion whatsoever of the possibility of alternatives. My doctors didn't welcome my questioning the stock protocol either - my refusing radioactive iodine post op caused considerable disquiet and i was required to sign a waiver.
Presuming there is no serious risk in delaying (gaining a view on this may require advice and/or reading) the reality on this sort of stuff is often that if we can manage to start reading and digging that we get led to the information we need - and that over time we may intuitively come to know what we want to do.
Good luck with it whatever road you take.
This won't necessarily be much help, but there's a lot of potentially conflicting views about - although mainstream medicine will tend i think to apply fairly well defined criteria based on a standard protocol. Which likely won't be much explained, which the doctors will want to stay within, and which may well only offer (and consider realistic) the options you have listed.
I'm personally cautious about RAI on the grounds that putting radiation in the body is questionable - especially when the total dosage from possibly multiple scans etc is added on top as was my own case.
One view expressed at times is that the outcome (in terms of effect on the thyroid, and the the subsequently required replacement) of RAI can be a bit unpredictable.
Surgery (partial thyroidectomy) is held by some to be a bit more predictable - the part of the thyroid left behind hasn't at least been toasted by radiation.
Either way there's a view in many quarters that hypothyroidism is almost inevitable following either procedure - that the basic protocols presume the need for partial thyroid replacement afterwards to top up to the required level. It's likely a bit hit and miss to target exactly the required thyroid output by surgical or nuclear means - and it seems unlikely that a doctor/surgeon responsible for either procedure for hyperthyroidism will want to risk leaving the thyroid in a condition where the output remains on the hyper side. Possibly too open to the accusation of a failed operation?
I've wondered at times if there may be a possibility of the remaining part of the thyroid growing to take up the slack and eliminate the need for replacement? It may not be a possibility, and anyway might require staying pretty hypo/with high TSH to encourage it though..
I posted earlier about (based on a US paper from some years ago that revisited sample thyroids reoved from patients as having contained cancers) the possibility that there's quite a high level of uncertainty in the diagnosis of cancers - of at least certain types anyway. Which if true suggests that some proportion of thyroids are removed to be on the safe side.
The diagnosis of Graves is probably rather more reliable, but the above may suggest that assessment of cellular changes in the thyroid based on biopsy results etc is perhaps a less than exact science.
Recovery from auto immune disease is said by some of a more holistic/alternative persuasion to be possible if its caught early, by fewer if the thyroid is more damaged/the condition is advanced, and realistically unlikely by others of the conservative persuasion - with the caution in the latter case very possibly again to do with the perceived need to eliminate subsequent health risks.
The recovery road if feasible seems likely to be a slow affair requiring lots of lifestyle change, and quite a lot of self discipline.
Some argue that thyroid replacement seemingly can be more difficult when part of the thyroid remains as a focus for auto immune activity - and report doing better after a subsequent total thyroidectomy necessitated by further progression of the auto immune damage to the remaining thyroid.
These are just some of the different views i've tripped over - there are no doubt others.
Recovery would clearly be the jackpot. What's harder to bottom out if considering the possibility of trying this less common route is perhaps what approach to follow, how often (or not) people in reality manage to pull it off, what the treatment should be, what sort of path it entails, what outcomes are possible, what the likely inputs/costs/risks/benefits are vs. the other options, and how the specifics of one's own situation (inasmuch as they can be known) might influence the scenario.
I am in exactly the same situation as you & it is so confusing! I've pretty much decided that RAI and thyroid removal is just not an option for me at the moment as I'm not willing to risk feeling any worse than I do right now! Have you looked into trying to control your graves through nutrition? That's what I'm doing at the moment, it's a strict regime but if it works will be so worth it, I've just read a great book by Dr Sarfraz Zaidi, he is an American endo but gives pretty clear instructions on what you should/shouldn't be eating etc. there is also a great website someone on here pointed me to a while ago, I don't have the link but think it was called Elaine Moore - she gives some great advice. x
Hi,so sorry they have only given you the two invasive options.I have been told if my Graves recurrs i will have the same options,But i have already told my endo that i want to go back onto a block and replace therapy of Carbimazol and thyroxin.He has told me that i would have a lesser chance of it bieng successful a second time.But i am going to stand my ground and insist on the meds as onace you have RAI or surgery there is no going back.Good luck on which ever decision you make.
It must have been a horrible shock to hear that on your own. It's interesting you say the consultant said 'matter of factly' I'd be very wary of anyone making a major health decision without some empathy for you. I believe I had my first hyper bout post first baby, it resolved without medical help (I thought it was PND) and the next happened when I was 49 after my fourth child at 45 - so fertility not a problem in this case. I was put on carbrimazole in Feb this year - RAI was discussed. I was asked to go on block and replace but opted for the more unusual (and against wishes) up and down dose of drug according to monthly blood results. It's worked for me. I am on 5mg of carb and bloods normal. I feel fine, got energy and confidence back which is so important. I read a lot about Graves and decided to ditch wheat completely which has worked wonders - I notice you said you had acid reflux that can be exacerbated by wheat. I've looked at the LowFod map diet - the recipes are great and easy even if the info is a bit complex, also cut down on dairy and drop lovely wine out during the week (love my Fridays!) I do Iyengar yoga with a teacher who gives me exercises for thyroid and calmness, have a massage once a month and acupuncture. I also take a number of supplements to help with autoimmune conditions. It's hard not to be swayed by medical profession when you feel vulnerable and scared of their confident decisions - despite how well I feel there's always a worry that I'm doing the wrong thing but instinctively I feel I'm OK, touch wood.... perhaps you need to speak to another consultant, take someone with you who writes down answers and have a list of questions you are concerned about. This forum is a brilliant support.
PLEASE OP - PLEASE - FIND alternatives, they exist!!! There is a more healthier way of treating your Thyroid problem. DON'T let ANYONE Take your Thyroid or use RI on it! Noooooooooooooooooooo! I did not find out until after it was TOO LATE - that there are better ways of correcting it, balancing it. Do research - use Nutrition and natural Homoeopathy methods - THEY DO WORK!
My husband had Radio Iodine treatment and now, our lives are a LIVING HELL! He's changed totally and completely and does not love me anymore. He's very mean, bitter, emotional, worn down, depressed and badly neglected by his Endocrine specialists. For what this has done to our family, to us, I am now seeking a law suit against him.
They are TOO quick to ZAP it. STOP!!! Get control of it by TAKING control. Focus on making your Thyroid healthy, using foods, raw vegetable juicing, coconut oil and other NATURAL foods that will enrich your thyroid and HEAL IT!
Please believe me - if you don't feel up to the research, checking around, get a good friend and a loving and patient family member to help you in LEARNING about it, and how to get it back to HEALTHY - there are ways! We all need to back off of depending on certain specialists who have a quick remedy that will land you right where I am, and my husband is now. It's a HORRIBLE existence and you just may come to regret it.
ONCE it's done... it's done! There's no going back. You cannot reverse it. You CANNOT - you are then forever changed by the decision and you will NEVER be the same again. Take the natural, healthy route. REAL FOOD heals! Get off of processed foods if your diet consists of them. Please, I beg you, I don't want ANYONE going through what my husband and I are going through now. Our lives and livelihood is now DESTROYED!
Maxi some of us with Graves had no choice but to have surgery or RAI, I had to have both. In some cases it is NOT possible to control Graves with drugs or alternative methods.
I understand you and your husband have had a negative experience with RAI but it is not the same for everyone. I know many people who have had successful RAI and are living perfectly normal busy lives, me included.
To demonise RAI is not fair on people who have take that route whether it be because they have to due to uncontrollable symptoms or because they choose to rather than staying on long term drugs.
I truly understand your point, but there are many methods of normalizing - and I have found so many even for Graves disease. Sadly, so many of us are suffering with these various ailments do to our dirty air, bad diets, body damaging habits, and lack of healthy overall nutrition. Although it came little too late for my husband, before I left - we'd been transitioning over from eating any type of processed foods, fast foods, vegetable oils, which is VERY bad for you, yet it's in everything we eat if we eat processed. I'd began vigilantly buying and cooking only FRESH veg, fruits, healthy fats and natural herbs, juicing and consuming them raw as well cooked. But because my husband's Thyroid was already gone, this change over came a bit too late to help him. As I too have signs of thyroid problems, I'm taking my health into my own hands, because I've learned a lesson with all of this I will never forget.
We have to take charge of our lives, our health and what we consume before an important organ of the body, or a gland begins to act up.
My heart goes out to anyone going through this, having to make this decision - with possible limitations to try something else. But I do so encourage it - even cancer, regardless of what's reported has it's natural cures. People are waking up - because they realize we are the sickest generation that has ever lived and there is a reason for that. Diet, lifestyle and habits.
I wish you only the best Lynsey - and of course good health and success in making the right decision. This has inspired me to find a list of all the FOODS that promote a healthy and HEALING thyroid. As I find the information, I will most certainly bring it here. Right off the top of my head, coconut oil - is VERY good for the thyroid. Eating it directly as is twice a day does wonders. But there is MUCH more in natural foods, that are also medicines.
It escapes me, who said it, but the quote is something like, "Let they medicine be thy food, and thy food be thy medicine" - That will always be the best route to take, but - not all of us have the ability to take that option. We all want you well - we all stand with you - we all know what you're going through.
For some of us Graves/thyroid disease is hereditary so no amount of fresh veg or whatever will make a jot of difference, please don't put us all in the same box, some of us need the medical treatments to survive. I would have died without surgery and RAI.
I had graves about thirty years ago and opted for radio iodine. After about five years became hypothyroid. Levothyroxine made me feel awful. I now take Nutri thyroid and Nutri Adrenal Extra and feel so much better If you go on to the Joseph Mercola site he gives a real insight into Graves and the treatment that is available with alternatives. I know I pondered over my situation for ages - I asked and received many answers to my questions. The book by Doctor B Durrant Peatfield "Your Thyroid and How to Keep it Healthy" has a section on this particular thing. Hope this helps just take your time and do what's right for you. Take care - it can be a long haul - keep going - there is a light at the end of a very long tunnel.
I was diagnosed Hyper in 1999 and was on carbimazole for over 14 years and they were always pushing me to have RAI but i just hated the thought of it so stayed on the tablets which i was fine with, then this year i developed a lump goiter in my neck and they said it could be cancer and i should have my thyroid removed so because of that i decided to have half removed where the lump was and great news was not cancer which i was so relieved about scar is healing ok and i am feeling well just in process of getting my levels right . The surgeon said i made the right decision he wanted to remove all my thyroid but too be honest my thyroid has never really caused me any problems thank god, i always felt ok on carbimazole although they say they shouldnt be used long term so i wish you luck with your decision.
So far... number 1 cause of Thyroid problems is Iodine deficiency. Seek the BEST source of it! And dig and seek information to HEAL yourself!
There's a lot of information out there. Just make sure you find it all and give your body a chance to do what it was made to do, heal itself... IF... given the right foods to do so. Iodine is a start.
My situation is similar, I was diagnosed as hyper about 5 months ago and with graves about 2 months ago, I've been advised to have RAI when my thyroid is more manageable, I asked what the other options are and the endo said I can have RAI or go cold turkey from carmibazole, he said I couldn't take carmibazole long term and after 1 year I couldn't take it anymore, I've been really Ill and feeling rotten, I've been off work pretty much for four months and I've decided I will have the RAI, the endo said it's easy to predict who will have reoccurring symptoms and said I would, I can't continue to feel this poorly.
I'm leaning towards RAI too as although medication has my thyroid levels under control i feel so awful all the time I'm willing to try something that could help. My endo said I'm likely to keep getting recurring thyroid problems which is why he said I should consider the two main options. I'm preparing a load of questions to ask him at my next appointment at the end of the month. I hope you're feeling better soon x
Hi Lynsey , are your bloods normal... I was diagnosed by scan as well and I'm feeling so terrible ... I get scared because of the emotional side and also feeling like death waned up. I initially lost weight and put it back on but all the other symptoms remained. Went from
Anxiety to depression and feeling so flat and empty like I'm crying everyday coz I hate the way I feel. I'm tempted to take my thyroid out but they haven't said I needed that as my bloods are normal . Do you have graves antibodies as well? I have high ANA levels .. Just wondering your input sorry u feel this way it' is so exhausting
Yes my bloods were normal on my last test but scan VERY abnormal. I haven't had bloods done since my scan but I can ask about graves antibodies...I'm struggling to get my head around it all. I'm so sorry to hear how awful you're feeling, one thing I can guarantee is that other folks on here understand how you feel and what you're going through.
I had 3 days off my work and literally slept for the first 2 days and staying in my pjs for the whole weekend after and went back to work last Monday. I tend to live in pjs at the moment, going to work, eating and sleeping. My home is an absolutely bomb site, it's really getting to me, cat hair everywhere but I've just not got the energy for housework at the moment.
You mentioned the anxiety and depression symptoms, have you spoken to your doctor about this? I've had issues with depression since I was a teenager so I'm already on medication for this and I think this is probably helping me keep going a bit so it may be worth looking into. I mean your Graves' isn't going to fix itself any time soon so I guess I'm starting to think its more about managing your symptoms. I've bought a book to try and help me understand things better and to see if making changes to my diet will help (amazon.co.uk/Immune-System-.... I've not really read enough of it yet but I'm willing to try some things to try and feel better....
I'm off to see the endo on 31st Oct (spooky) and despite being nearly 30 I'm taking my Mum with me for moral support and because I know she'll think of good things to ask and remember everything he tells me.
Try and hang in there and don't be afraid to pester your doctor, you don't have to keep feeling so bad if there's something that could help.
Thank you my dear friend in Graves your advice brings peace to my troubled soul I'll look into this book and will definitely consider meds to help with the process. Just goes to show bloods can be normal but symptoms abound . Makes sense ! Thank you and please let me know how you go with your appt Hugs to you too xxx God Bless you x
I'm glad I've at least helped a little, honestly being on here has been very good for me, just seeing that there's so many other people in the same position. I'm not sure how good the book is yet but it looked less 'out-there' than some of the others. Take care x
Here is the Elaine Moore Website that someone mentioned above:
It is a very personal decision, and one I've not had to face yet (I'm currently stable on 5mg carbimazole), but maybe these links will help. I was also very physically sick when I first started on the carbi, but I found that titrating the dose up and down slowly, 5mg at a time, helped my body to tolerate the drug. I was never on any more than 15mg. If they put you straight on a high dose to start off with that could be a reason as to why you were so sick, just a suggestion anyway.
I am very interested in unravelling the reasons for Graves, and in the process possibly minimise my chances of recurrence. Things I have thought about are heavy metal toxicity (dental work in my case), and vitamin and mineral deficiencies. There are some interesting articles on the Elaine Moore website about links between Graves and vitamin D deficiency, and you can find some supporting research for this on PubMed. In my case I've uncovered so far B12, folate and zinc deficiency, and low levels of iron, vitamin D, copper and magnesium. I have given up gluten despite testing negative for Coeliac Disease, and this has also made a massive difference to my well-being.
So I guess what I'm saying is that, even if RAI or surgery are the best options for you (particularly if you can't tolerate the drugs), you may not get totally well unless you take a more holistic approach alongside this, even though this is not something our doctors are interested in exploring.
Thanks so much to everyone for all of your responses. I've been burying my head in the sand a bit and just avoiding the whole issue of late. I will check out the links when I'm home later, thanks. I've bought a book that I'm trying to make my way through just now (although not getting far at the moment) amazon.co.uk/Immune-System-... so I'm looking into dietary changes I can try and make to see if I feel any better. It’s all really confusing, some sites telling you to avoid iodine as much as possible but there’s iodine in so much food it’s confusing. I’m also a self-confessed Carb addict and I love dairy and the thought of giving up two things I love isn’t very appealing at the moment.
The hardest thing about trying to control the dietary aspect of things is that the last thing I feel like doing is shopping for new foods and taking time to prepare new recipes etc. I’m so knackered all the time I’m lucky if I can be bothered bunging something in the oven for tea! I understand that these changes could help so I will try and preserver and make some changes to my diet. I’ve seen loads of links suggesting a paleo diet but I was vegetarian for 19 years and have only been eating meat for just over a year so I’m not a fan of red meat so I don’t know how I’d do this. Wah it’s all just so confusing.
I’ll have a good look through everyone’s comments later and thanks again for your responses. x
Hi lynsey.I was wondering which decision you made in the end? I am getting my results next week about whether or not I have Graves but the endo thinks it most likely as I have eye problems.I am currently on carbimozole but still very sweaty and cant sleep n palpitations etc.Since starting meds 10 weeks ago my t4 and t3 are nearly in range.Its all very frustrating this thyroid businesses!.Would be interestef ehat you decided and how you fee, now.Thanks kim
I went for RAI but it wasn’t an easy decision. Carbimazole made me sick so I had to take PTU which made me feel awful. RAI was difficult, I won’t lie to you, staying cooped up, not cuddling anyone or even the cats, I was pretty miserable and terrified when I was out and someone appeared near me who was pregnant or kids were near me, I probably overreacted but I didn’t want to risk anyone else’s health. I felt exhausted and pretty bleh after RAI but I think that may have been more to do with finally stopping and not keeping myself going.
After RAI I now feel great. I had RAI on 6th Dec 2013 and on 30th Jan I’m doing great, I’m healthy eating and even back to swimming twice a week, I pretty much feel back to normal. I had my check up last week and my T3 levels were normal but my TSH was only 0.8 but I didn’t ask for my other levels to see what that means. The specialist thyroid nurse I see is amazing, she thinks I will go underactive but she’s told me what symptoms to look for and I have her direct phone number and email address so I’ve just to get in touch if I start to experience any underactive symptoms.
I think RAI was the best option for me but I couldn’t do it again, it was too hard being isolated and I decided before my check-up that if it hadn’t worked I wouldn’t be doing it again. Fingers crossed things are improving for me but all I can say is that it’s really your choice and it has to be completely your decision. I went to the consultant with a list of questions and sat and went through them all before deciding on RAI and I read up a lot too. I think information is key so read as much as you can but try not to be swayed by the people who’ve had awful experiences and remember that most of the people who’ve had good experiences post treatment aren’t on forums anymore because they’re feeling better and getting on with their lives. If there’s anything you want to ask me just get back in touch, I’m happy to help or just listen.
One last piece of advice for you, give yourself a break and don’t let anyone else tell you how you should be feeling etc. No one who hasn’t been diagnoses with Graves’ can know just how awful you feel and so many people don’t understand the effect on your hormones and mood etc so just take care of yourself and do whatever you can to help those around you to understand how you’re feeling. All the best, Lynsey x
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sorry u feel this way it' is so exhausting 
Having private blood tests, which ones please do I need the most please as this feeling urgent now?
New member here - I asked GP to increased my dose of levo to lower TSH, but she said it needed decreasing – now I'm confused!
RAI or continue on Carbimazole? 
