Learning to live with Graves' disease (hyperactive thyroid)
75Graves' disease
As discussed in my former article, 95% of cases of hyperactivity of the thyroid gland are due to Graves disease.
Symptoms include. unexplained weight loss, sleeplesness, general fatigue, nervousness, frequent bowel movements, skin and hair changes and increased heart rate.
Sometimes a goiter (enlargment of the thyroid ) will be present.
Once an initial diagnosis has been made by testing hormone level of T.S.H, T3 and T4, and hyperactivity has been confirmed, we have 3 options open to us, as left untreated, Graves' disease can develop severe complications such as:
Severe sensitivity to light, blurred vision, and bulging eyes
Eventually it can lead to heart failure.
The three options we have are:
Anti thyroid medication: Unfortunately, this type of medication does not have a high sucess rate, and as an average has only been found to cure Graves' disease in 20 - 30 % of cases.
Radioactive iodine therapy: This treatment involves killing off a proporcion of the thyroid by a series of radioactive iodine therapy sessions. Many people opt against this treatment as they are against treatment that is radioactive. Also after each session, you must be kept in isolation for up to 15 days, and cannot have any contact with for example your children.
Surgery: This is generally the best option in the long term as although it may result in underactivity of the thyroid later, this can be corrected by taking hormone replacement tablets.
Bulging eyes as a result of untreated Graves' disease
Coping whilst awaiting treatment
Whether we are trying to control our Graves' disease with anti thyroid medication, or are simply on a long waiting list for surgery, the most important thing is to come to understand what is happening to our bodies, and learn to live with the symptoms as best we can.
Having a good relationship with your doctor and or blood specialist is essential
Often joining a forum or group of sufferers can help a great deal. People who are experiencing the same as you understand you, for example, where as your partner may not, as in the early stages of graves' disease there are few physical signs that you are actually unwell.
Reading articles written by other sufferers you can relate to. For example, reading that someone else frequently misplaces everything from the car keys to the shopping list, or frequently forgets mid sentence what they were talking about, or somedays take half an hour to actually have the courage to leave the house, only to find they are blinded by the sun and have to return indoors.
Knowing you are not alone is important. There are currently 200 million sufferers of Graves' disease worldwide.
Also we must always remember, when we are in our darkest moments, that there is a cure, albeit surgery, and that although we may have to go through months of testing, confirmation etc, Graves' disease is curable. And full health will be regained.
And in the mean time, we can eat a high calorie diet and be the envy of our friends by never gaining weight!
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Thanks for your reply. my year and a half of suffering ( as i was pregnant for 9 months of it and therefore offered zero treatment was a nightmare). I split up from my partner as although our relationship was already not what i would call rock solid, he refused , or found it hard to beleive that i was sick. There were the obvious signs such as the weight loss, but when he found me still in bed at 4pm, he just thought i was plain lazy.
i was eventually cured on august 2nd, just one month ago, as a scan of my tumour showed a shadow of suspected malignant cells.
I had a full thyroid removal, and a biopsy did confirm a very small area of cancer (4mm) had been removed.
So i am now cured, of graves disease, but had not ever actually convinced my doctor i had it, as my tsh levels were all over the place, but my T3 and t4 were always normal. i had a huge amount of thyroid antibodies present also but ny blood specialist said" some people just do!"
So all in all, i am cured from both the cancer and graves, but am bringing up my 2 sons of 11 years and 8 months alone, something that i will never really know if would have been unavoidable or not.
i just thank my lucky stars every day that the tumour was removed before the cancer spread, and that hopefully in a couple of months I will be able to work again... i have new hair growth and slightly better concentration, but i still have a way to go.
As i said in my hub, it is always nice to know that there are people out there, generally not your doctor or blood specialist, but just normal people who are going through the same as you that you can relate to....
I was diagnosed with a hyperactive thyroid when I was 15, 8 years ago. I took methimozole for about a year and then tried a few natural "cures" including putting ground up orange peels on my throat, high doses of vitamin c and cleanses(my parents were hippies I'm pretty sure). I tried going without medicine and it seemed to have stopped acting up, so I stayed off for maybe 2 years. I got pregnant with my daughter and started having dizzy spells and nearly fainted quiet a lot. My doctor dismissed it to the pregnancy and I went on. about a year later I was driving (luckily not with my daughter) and started to lose my vision rapidly. I pulled off to the closest place (Sonic) and ordered a few things and scarffed them down. Got back on pills.....since then I have been off once more and now I'm on again. 2 kids later I'm up to 6 pills a day at 23. I'm tired of taking medicine, of paying for medicine, of feeling crazy, of getting shaky, of being forgetful, of not feeling normal....i just want to feel normal. My husband is very understanding. He helps me when I need food or when I feel anxious....he makes it better. I just really don't want to have surgery........I just feel like it's coming to that.
I feel great having untreated graves disease. I feel energetic and happy, and I have all the symptoms but it does not bother me at all. I love feeling hyper. I'm in my 40's and feel great. Graves will not kill you. If you kill your thyroid, you will go hypo and get fatter and feel tired all the time, because i have a friend who had her's killed and now she is miserable.
I appreciate your comment Angelina, but it is not always possible to keep your thyroid. I felt more alive when I still had mine than I do now 2 years on; but as I had a cancerous tumor in mine, I had no option but to have it removed...
I am pleased to find this....I was diagnosed a little over a year ago and it has been a tough time. I was on the meds,methmizole, and took so much I became hypo..did not like that at all. Went off the med, and felt great for some time. Now it is back, with a vengence it seems. Heart palpitations is the worst, shakiness, unable to concentrate. It is affecting my life, and I so miss how I felt long ago...but I do not want to kill my thyroid. I did not like feeling hypo, tired, sluggish, no energy. I keep hoping for remission. Anyway, thanks for the site and opportunity to share my feelings. Hard to share with others who don't know what this is like.
leni sands Level 5 Commenter 21 months ago
Interesting and useful hub. It took nearly four years to diagnose my better half with graves disease, mainly because his doctors kept moving on to new practices and it wasn't until a doctor with some knowledge of hyper thyroidism arrived at the surgery and took over his case that we finally got a diagnosis. Life was unbearable over that four year period for both of us. Until the diagnosis was made we had all sorts of things going through our heads - the way his body shook uncontrollably sometimes made us wonder if he had parkinsons. His severe weight loss was another horrible problem. Last February (last year) he had the radio activite pill and yes he had to be kept in isolation which wasn't so bad. I was classed as a comforter so I was able to still be with him. However the treatment didn't work and months later we were no further on than previously. So he had a second dose almost a year on (earlier this year) - they also increased the dose. It was obvious that the treatment had worked almost immediately and yes, once again he was kept in a sort of isolation - easy for us really because we live in the countryside and are fairly isolated. He now appears not to have a thyroid and is on thyroxine for the rest of his life - there is life after graves disease and if you can bear the isolation it is worth having the radioactive pill. He still suffers from gut problems but they are manageable although its really hard to know what to do for tea because he cannot eat big meals or spicy foods. And by the way, the weight he lost has come back and he now has to watch that he doesn't pile it on. Thanks for the hub.