A Conversation for Graves' Disease (Hyperthyroidism)
Stardust Started conversation Mar 3, 2002
Hello, I have just found your article on Grave's Disease. I have not read it all yet - it is very thorough and I am sure very helpful. I am just replying because I have been suffering from it for a number of years - probably between 10 and 20 off an on, but am now feeling a lot better. It crept up on me, and probably "yo-yo'd" for a long time, so I did not realise what was happening to me until it was very serious. It is also hard to get it diagnosed. It was exacerbated by relational and work stress. I was exercising hard but getting weaker not fitter. I was very hot and thought I had an early menopause. I had shaking hands. I got out of breath. I was anxious and afraid all the time. I had a bad chest so eventually I thought I might have TB. When it was diagnosed I did not want surgery, but had treatment with carbimazole. This helped, but every time I came off the drug, the symptoms came back again. I had very good help from a Chinese doctor, with herbs acupressure, and acupunture, but the problem was with my autoimmune system and hard to control. Eventually, I agreed to a sub-total thyroidectomy. That was almost a year ago, and I am now feeling much better - better than I was with the thyroid levels controlled with carbimazole. I now take thyroxine every day, probably for life, but that is a hormone supplement, not a drug. I have been left with atrial fibrillation, which is affecting my fitness levels. I am having weekly acupuncture treatment which is helping, while waiting for an electo-cardio-version to put my heart back in sinus rhythm. If that is successful, my specialist tells me, I will be "cured"! I am currently working on my fitness and stamina to go for my second degree black belt in Aikido, hopefully by the end of the year.
I hope this will give hope to anyone suffering from this disease. If you suspect you have it - ask your doctor for a thyroid function blood test (also ask for one if you are tired, overweight, have puffy eyes etc - you may have an under-active thyroid). A friend of mine who is a nurse told me I had an over-active thyroid - she put the symptom picture together. Unfortunately I did not believe her - I was trying to hide the symptoms, for some strange reason, and had thought of a different cause for every symptom. My GP did not diagnose it - she was about to send me to ENT with suspected nasal polyps because I was having problems with catarrh. It was only because she also did a broad spectrum blood test, that my ridiculously high levels of thyroid hormone came to light.
Thyroid disorders can also cause "mental" and "emotional" symptoms - depression, anxiety, over-the-top emotional reactions. Sudden unexplained weight loss or weight gain are also indicators; weakness of the thighs and upper arms, and breathlessness when going up hills or stairs, can indicate over-active thyroid.
If you have any suspicions - get help and a diagnosis as soon as possible. Thyroid disorder of any kind is harmful and debilitating, if left untreated, but can be controlled and even cured with the right treatment.
Amanda Posted Mar 7, 2002
*hugs for Stardust!*
I'm so glad that my entry was helpful to those who suffer from Graves' Disease or who need to learn more about the condition. I wrote this entry because I was diagnosed with Graves' in September of last year, and have spent the last several months learning as much about this condition that so completely changed my way of life as I could. There isn't much literature or knowledge of Graves' out there, so it was the least I could do to raise awareness of this life-threatening illness.
The last six months of my life have been very difficult ad trying, but I'm so glad that my doctors finally diagnosed me and discovered that it was Graves' that had made me feel so bad for so long. See, for the longest time they just thought I had an anxiety disorder, or some such nonsense. Like you, I've probably had this condition for 10+ years (like my grandmother who was diagnosed with Graves' when she was 18, and my father who was diagnosed with Type 1 Diabetes at the same age), and in all that time not a single one of my doctors thought of checking my thyroid levels. In the meanwhile, my heart rate spiraled out of control, my emotions were wrecked and I was miserable. For a long time after my diagnosis I harbored a lot of hate for these doctors who didn't treat me effectively... now I am doing everything I can to raise Graves' Disease awareness, from starting up a Graves' Disease support group in my area to taking part in the online Graves' community to this article. It appears that doctors need to be educated on this issue just as much as anyone else.
I had my RAI about 5 weeks ago and I feel FABULOUS. I seriously feel better than I have in ten years. I feel 18 again. I had NO idea that I was as sick as I was until I started feeling better, and it put everything into focus. Now I'm taking care of myself-- exercising and eating better-- in an attempt to ward off the bad effects of hypothyroidism, and I'm doing all of the little things I never had the energy to do when I was sick... like clean the house or invite friends over. I am so happy I made the right decision for me in treating my Graves' and I have committed myself to making sure that I take my health by the reigns from now on.
Thank you for sharing your Graves' story. I don't think many people understand what it's like to live with this condition unless they are actually suffering from it, but perhaps in time the awareness of this condition -- and that of all autoimmune disorders -- can be raised.
Take care, and the best of health to you!
Stardust Posted Mar 10, 2002
Thanks for your reply - I found your article very informative and helpful.
When I was very hyperthyroid but undiagnosed, my husband and I were going through a very difficult time in our marriage. At the time, one thing I did to try to deal with my feelings was to keep a diary, and also to write some poems. One of them in particular, I realised a year or so later, was a catalogue of hyperthyroid symptoms:
My bowel trembles
My stomach shrinks
My brain gasps for air
Crystalline forms of fear
Creak down the veins of legs
and arms, fingers hesitate,
My heart grinds behind my bones
My eyes ache, my face burns
My lips pull down even if I want
My lungs are pumped too hard
By a tight drum of muscle
Stretched from bone to bone
Sprung by sudden gusts of love
My body hangs loose and ineffective
Held tight from rib to rib
Pain rises up my throat
My mind can understand
My heart incomprehends
I only know I love you,
More surely, with each glimpse
of our unchartered present.
Eventually we parted, but are now both healthier and happier than we were then. I realise now I must have been terribly difficult to live with, my emotions were so extreme with the over active thyroid. People could be helped a lot more if they were properly diagnosed - if the cause of the over reactive emotions was understood and treated, they would perhaps be easier to deal with, one could adapt as one was recovering.
Currently I am receiving great benefit from acupuncture for my residual irregular heart rhythm, and, like you, pay close attention to my diet and get plenty of exercise. At the end of April, I am going for an electrocardioversion to correct my heart rhythm, and hope then to be back to "normal" for good!
Thank you again, all the best and good health
Amanda Posted Mar 15, 2002
What a powerful poem! You're right-- that does mirror various symptoms of Graves', one of the biggest being the emotional side effects. When I was hyperthyroid I would go into "rages"-- for example, once I threw a bottle of soda across the room because it sprayed on me when I opened it, and I didn't care if it hit anyone. Mostly I would just rant and rave, slamming doors, screaming and go into hysterical bouts of crying-- then I'd be fine, like nothing was the matter. I co-habitate with my fiance, and this time when I was really sick was SO difficult for him... but I was incredibly lucky to be with someone so caring and understanding. Not every Graves' patient is this lucky, and many of them have to weather the storm on their own.
We're both doing really well now, and I'm so glad you're doing better! It looks like you're going au natural on treating your arrhythmia... but if acupuncture doesn't work for you, have you concidered trying beta-blockers? They worked miracles for me in leveling out my heart rate and beats, and now I have a nice, even 75 bpm heart rate. At one point I was on enough beta-blockers to drop a horse in its tracks (back when my heart rate was 150 bpm and wildly irregular), but now I just take a pill at bedtime (until we determine that my thyroid levels have gone back to normal) and I'm fine all the next day. It's a nice feeling.
It makes me wonder how many other H2G2 researchers have this condition... surely we're not the only ones!
Stardust Posted Mar 16, 2002
Thanks for your reply and glad you're more on balance now. The emotional swings are awful. I didn't have rages, but I did get awfully emotional and cry a lot, and I was afraid of everything all the time (I may have been too afraid of the consequences of having a rage, to have one!!!). I was also physically very weak - your article said Graves disease is not debilitating, but I found it was. I do Aikido, and I was getting less fit, not more fit. My thigh muscles got weaker and weaker.
Now I am rather overweight as a result of the thyroidectomy, but am gradually getting back into regular Aikido classes. The acupuncture seems to be working, though you have to be patient. I've been having it once a week since January (a bit expensive, but it is important). I did have beta blockers when I was first diagnosed, and they did calm me down, but I don't like them. My Chinese doctor gave me some herbs for my heart last week, and they have also helped, though they made me sleep rather heavily. He said they also make you calm - maybe they are like a herbal beta blocker.
I'm sure we are not the only ones on h2g2 with Graves, or any other thyroid problem. Maybe if they get to notice us, yours won't be one of the most neglected postings! Actually, I found your posting because I noticed it on the most neglected list - and it's not there now!
Keep well and balanced.
Researcher 203924 Posted Sep 20, 2002
The article was very informative. Like others, I thought my anxiety was just part of the crazy, hectic world we're a part of. I ignored the "heart's exploding in my chest" feeling. You know, chalk it up to stress. It wasn't until my hair was falling out, my hands were shaking and then, one day my legs completely gave out on me that I thought mmmmm....something's not right here. I've been on/off Tapazole since 2/01. I'm still dealing with severe muscle weakness and I had periods where my thigh, abdominal and arm muscles would shake uncontrollable. When I was really sick, this would last for hours and my family thought I was possessed by the devil and could use a good exorcism. Now, the temors only a last few minutes and only come on when tired, stress or overworked. Surprisingly, that is not every day. Wondering if anyone else out there with Grave's has experienced these types of muscle tremors and rigidity.
Researcher 231913 Posted Jun 20, 2003
Hi. Please help. I'm going berserk. I had to stop medication by Neo Mercazole to do a thyroid scan and am feeling dizzy all the time. Unfortunately I don't have much support. The people around me act as if they think I'm lying about how I'M feeling. It's really frustrating. I have recently been gaining weight as well.
tonystark Posted Mar 4, 2004
I've been diagnosed with, and treated for Grave's Disease over the past 6 months. I'd probably been suffering with it for months before and completely failed to notice the symptoms. Yeah, I know: heart rate at 120bpm, sweating like mad, trembling hands, mood-swings (interestingly only while at work but I really hate my job so that's normal, isn't it?) and eyes like a startled woodland animal.
I'm having regular blood tests and check-ups with my consultant and am currently on 40mgs Carbimazole and 75 micrograms thyroxine daily and it's all going really well. But I was wondering if anyone could suggest any dietary measures that they've found helpful. My osteopath suggeted raw tofu. Just NO!, OK. I was thinking more - broccoli. That sort of thing.
Also, I'm definitely selling up and going travelling this year (a decision long overdue, and one for which I reckon all that extra thyroid energy can be thanked) so any tips for longer-term, holistic (and inexpensive) measuers would be helpful. I'm working with my doctor on this, obviously, and won't be giving up the meds; I just don't fancy communicating my medical history in Laotian much.
Anyone with any top-tips/experience, I'd love to know.
Remember kids, love your thyroid!
slipdip Posted Mar 9, 2004
I just wanted to add a few words on top of those of my fellow sufferers of Grave's Disease, who have already encapsulated the horrors, downers, weight swings, depression, anxiety, shakes/tremours, mood swings etc., etc., they have already summed (very admirably) up everything about having the condition of Grave's Disease.
I have just had RAI today, and I hope that it will be the answer to all my prayers!
I have spent a lot of time now looking at all the various sites about RAI and Grave's, and you know what scares me most is that we still seem to be completely unaware as to what causes this problem.
When I was first diagnosed I was told there were 3 possibilities: Pregnancy; Overuse of steriods; and Menopause. Non were applicable. But no one bothered to look any further.
Once stabilised 2 or so years ago my consultant then asked if I had any trauma in my life at the times my symptoms started. The fact my Father had died suggested to them a reason why I suddenly triggered excessive hormone action.
I was given a 50:50 chance of recurrence. One and a half years later I was back in the same boat. This time with no deaths in my family. So why did it happen?? They never bothered to ask. It just recurred and so I had to have treatment.
Don't get me wrong, I'm not knocking the treatment I received, within 6 months they stabilised my thyroid sufficently for me to have RAI. But the question remains what caused the trigger to start my hyperthyroidism again???? And is any one really bothered?
I have read a lot of the American articles on the subject and it seems to me that we seriously lag behind them in acknowledging the potential side effects of Grave's Disease alone, never mind the effects of RAI.
I think I was asked once if I had double vision. No one ever asked me if I thought I experienced a change in my eyesight. Yet, from what I read there can be a considerable effect on vision through Grave's disease which is exaggerated by smoking! Did any one ever ask you if you smoked and noticed a change in your vision??
And then there is the immediate effect of cancer. Apparently within the first few months there is a higher risk of developing thyroid cancer having had RAI!! Did any one ever mention that??? I know I wasn't told.
The effect diminishes over 10 years, ... I guess that's good news.
After today I have to say I now know that this affliction isn't just a cross to bear by women. There were two men in front of me awaiting treatment and they both received a higher dosage than myself.
I believe there are so many questions that remained unanswered. It at first seems so wonderful to get a "Quick Fix" for the problems we have endured for a number of months. But!? At what price? And at the end of the day does the problem just come down to what we have been eating for a number of years???
There is an article that referred to babies with Soy in their compound that developed thyroid problems. The minute Soy was taken away they reverted back to normal within a couple of months!!!
Ok, I know I've said a lot that most people may not agree with. Let me know.
My final question is this: Where is the Grave's Disease Support Group??? Everyone else has one now???
If you are interested in either forming, supporting, getting more information, helping, etc., etc., contact me on [email protected]
I look forward to all your comments and suggestions
Good health to you all
Asheley1 Posted Mar 9, 2004
I just want to say that the article and your response has inspired to keep fighting!! For years i have been fighting a whole host of different symptoms and until recently were disgared by many. A recent major relapse called for further investigation by my doctor. They have determined that i am suffering from stress and have prescribed me anti-depressants.
I have had most of the symptoms like hair loss, weak muscles, irritated eyes, exhaustion, funny vision and the likes, which have in turn caused me so suffer from panic attacks. I have had my thyroid checked by the doctors many times and it keeps coming back as "normal" but after reading these articles and going with my gut feeling i do not think i have anxiety depression? Do you know if there is another blood test i should be asking for? Or if there is any way the test could miss the diagnosis of Graves' Disease?
I would really appreicate any response that may give me some hope as to a correct diagnosis.
Sheep in wolfs clothing Posted Jul 26, 2005
I have started a new conversation titled ‘complementary treatments’, based on my own experiences of thyroid toxosis and Graves' disease, if you are interested.
I had missed this article when it came out (despite my relevant medical history) and only found this accidentally. I hope that it gives someone some useful information, or maybe just provides support or other options. My view (backed up by my own and others direct experiences) is that there are options out there; the conventional medical profession does not know it all or have all of the answers/treatments. If you are open enough to follow the complementary treatments, have faith and try it out (with careful supervision, of course). The ‘natural’ treatments are not as powerful, so they will take longer, but should not have the side effects that are associated with ‘conventional’ medicine.
ironJackdaw Posted Oct 3, 2005
I have been sufferering with Graves disease for probably over 20 years although with all my childhood illnesses could have been longer. Doctors have refused to treat me because my results were never conclusive with just a slight T4 abnormality. I was bedridden for years but when my heart rate went up to 130 in 1998 was then given beta-blockers. With the help of alternative medicine which I found for myself I have existed but not had a life. I now believe both my children are showing the signs of this illness.
Last year was particularly bad for me and although I had always digestive problems with this illness, started to loose weight and not absorb any food. I started on a downward spiral.
Over December and January I was admitted to hospital for tests and an abnormal reading of my pancreas was also showing.
After tests and scans still no answer was forth coming and I started to believe that the consultants thought I was a hyperchondriac although they had no answer for my continual loss of weight.
At the beginning of February I felt suicidal there just didnt seem to be anyone who could help me.
As usual when I feel desperate I search on the internet and I think this particular day although I am not religious, feel someone must have been helping me. I came across a company selling herbs to recover the thyroid back to full health, which I was obviousley sceptical about but in desperation I ordered these herbs. Within a week they arrived and I have been taking them ever since which is 8 months. They have changed my life not over night but gradually. I feel better now than I have ever felt, every symptom I have is gradually diminishing.The first thing to go was my anxiety and panic attacks, gradually my eye sight has improved and my muscles are now noticibly stronger. Most important my digestive system is practically normal and I have gained all the weight that I have lost. My daughter has also started them and I am seeing huge changes in her she is getting back to her old self. These herbs are for anyone with thyroid disorder whether its hyper or hypo. You can also take them if you are also on existing prescription medicine, which you will gradually be able to wean off as the herbs improve your health. I will probably have to take these herbs for another 8 months to completely clear out my thyroid and then hopefully just a nominal dose to stop it from returning.
If you would like me to do further postings on my progress I will be quite happy to do so.
Sheep in wolfs clothing Posted Oct 3, 2005
I'm pleased for you that you have found something to help, at long last. By the way, what was the herbal medicine that you took? I would be interested in knowing, in case my Graves returns in the future.
ironJackdaw Posted Oct 3, 2005
It is called Thyroid Thru, I dont know whether I am allowed to tell you what the company is called but if you search Thyroid Thru it will sure to come up.
They have a huge informative website with even doctors to answer any type of question. It seems that they have treated over 30,000 people all over the world but mainly in asia. The herb has been researched for the last 10 years and now holds certificates of safety and toxic free standards. It is expensive but this is only temporary until you are cured.
I have left at least half of my alternative other vitamins and herbs off and find that I am better off finacially.
It really is an exciting find and I am still pinching myself every day because I am beginning to feel so well.
ironJackdaw Posted Oct 5, 2005
I dont know whether you will see this but after reading your posting, I just had to try and make contact. Up until the beginning of this year I was like you, and received no help from my doctors, this had been on going for 20 years. I have tried everything, then at the beginning of this year I found a herb called Thyroid Throu from searching on the internet. This has completely turned my life around and I am actually recovering, this is a very slow process I am now in my 8 month of taking the herbs. One treatment can take between 2 and 3 months to complete. I act and feel like a new person and I know this will work for you. From the beginning of starting the herb I could feel something different happening to me and I just knew it was helping. The site to find the herb is called Greenlife-herbal.com I have just become a consultant and you will find me on their international site under Gt. Britain. If you wont to contact me please do.
twiinks Posted May 13, 2007
Hi, im hoping someone will be able to answer some questions i have concerning my 9yr old daughter who has suffered with Graves Disease. Bethany was diagnosed with Graves about three an a half years ago after 2 very nasty Thyroid Storms only weighing 2 stone at the age of 5! Bethany was prescribed Carbimizole for just under 3yrs, with regular blood test. Bethanys T3 and T4 levels settled down so therefore medication has stopped and been Carbimizole free for nearly a year. How ever things are still not right. I am constantly battling with her weight and very stange eating habits. Bethany still has the most ravinous appertite but still struggles to gain weight. Her weight will fluctuate between 3st 8lb and 3st 12lb. This has been going on for about two years and when her weight drops she looks painfully thin, with a waist size of a 5-6 year old. Should this still be happening if she is in the so called remission of Graves or is this normal? All the hospital want to do is for their dietitions to put Bethany on to supplements, but felt very strongly that by doing that it is just masking the real problem we have with the lack of weight gain and that obviously her metabolism is still running overtime. No matter what Bethany eats the calories are burning off almost immediately. With the responses i have read Bethanys metabolism running overtime is putting a strain on her heart!!!! Is this true? So to sum this long winded essay up (lol). Why is Bethany not having a normal appetite and not gainig weight like any normal child of her age, when she is supposed to be in remission?? Is Bethany heading for another Thyroid Storm Im hoping someone can help?? Twiinks, the worried mum!!
Sheep in wolfs clothing Posted May 14, 2007
I would recommend going to someone who can do some kinesiology on your daughter. This is not accepted by the conventional medical world, but is useful in picking up problems that are at a lower level than conventional testing can identify. If you accept complementary medicine, they may be able to suggest some treatment to help as well.
luscombe1 Posted Jul 3, 2008
I have been taking Carbimazole and propranolol for my hyperthyroidism and it made me really ill but the doctors would not believe i'm feeling as awful as I do, I started taking it about twelve weeks ago and in that time I have passed out, felt dizzy thrown up been rushed into hospital twice with a heart rate of over 160 bpm been really tired and not slept properly shaking sweating. I just couldnt cope with it and thought I was going insane and went back to the doctors loads of times to get help.
I am booked in to start radiotherapy on wednesday and am really not sure what to expect, whatever happens it cant be as bad as carbimazole that stuff is awful.
I have had the symptoms of hyperthyroidism for the past 10 years or so and have been to my doctors many times trembling and exhausted along with a multitude of other sysmptoms over that period only to be told I had a viral infection and handed a course of antibiotics. I have only just really started my journey into the treatment of this disease, still feel awful and am scared/unsure of whats to come. I wish I had been checked for this years ago though as maybe I wouldnt have spent all that time thinking I was going insane .
luscombe1 Posted Jul 3, 2008
Key: Complain about this post
- 1: Stardust (Mar 3, 2002)
- 2: Amanda (Mar 7, 2002)
- 3: Stardust (Mar 10, 2002)
- 4: Amanda (Mar 15, 2002)
- 5: Stardust (Mar 16, 2002)
- 6: Researcher 203924 (Sep 20, 2002)
- 7: Researcher 231913 (Jun 20, 2003)
- 8: tonystark (Mar 4, 2004)
- 9: slipdip (Mar 9, 2004)
- 10: Asheley1 (Mar 9, 2004)
- 11: Sheep in wolfs clothing (Jul 26, 2005)
- 12: ironJackdaw (Oct 3, 2005)
- 13: Sheep in wolfs clothing (Oct 3, 2005)
- 14: ironJackdaw (Oct 3, 2005)
- 15: ironJackdaw (Oct 5, 2005)
- 16: twiinks (May 13, 2007)
- 17: Sheep in wolfs clothing (May 14, 2007)
- 18: luscombe1 (Jul 3, 2008)
- 19: luscombe1 (Jul 3, 2008)