[NZCate]

#1058644

I read on your F/B pages a comment that one could be dealing with "the actual DISEASE not just the thyroid" And I’m wondering if anyone can tell me what that means. Does it mean that aside from trying to get your thyroid level down that you can be dealing with masses of other symptoms? Right now I have symptoms coming out my ears. I did two hours work yesterday and felt like I had been run over my a train. The muscle aches were horrendous. Not to mention the tremors which have left me unable to print or even sign my own name. Yet my thyroid levels are apparently normal. How can they be unless the disease exists separate to what the thyroid levels say. Is this how it works? And if that is so, when did my doctors think they would tell me? I was told that once the thyroid was right then everything would be fine. Curious to know what others think. I am wondering whether there is this big conspiracy to keep the light of day from the patients. In New Zealand at least. Here I go to the doctor with symptoms that are making life unbearable and they just say it’s nothing to do with Graves’. It must be Graves’ because everything else has been ruled out. I must sound completely crazy but if anyone can shed light… PLEASE!

[Kimberly]

#1169158

NZCate – Here’s a cut & paste from the response to the Facebook discussion…

Thanks!
Kimberly

Hello – My guess is that this poster was referring to the fact that Graves’ Disease at its heart is an *autoimmune* disease.

In autoimmune diseases, the body’s immune system mistakenly launches an attack against its own healthy tissues. Different autoimmune diseases affect different parts of the body. The “family” of autoimmune disease consists of 80+ different conditions, including Type I diabetes, multiple sclerosis, rheumatoid arthritis, lupus, and celiac disease. In Graves’ disease, the immune targets can include the TSH receptors on the thyroid gland, the connective tissue cells surrounding the eyes, and the pretibial skin located on the front of the shin.

The problem is that there currently aren’t any good treatments that specifically target the autoimmune process. For patients whose autoimmune conditions are causing extremely serious complications, there are some really powerful drugs out there that can knock out the *entire* immune system. But this comes at a price. Because the entire immune system becomes compromised, something as simple as a cold can turn very serious and end up requiring a hospital stay. So the treatment for most autoimmune conditions, including Graves’, is to minimize the “collateral damage” caused by the immune system’s attack.

The thyroid gland is just an innocent bystander in Graves’ disease – it didn’t *cause* the problem. However, because it is dangerous, even life-threatening to remain in a hyperthyroid state, the treatment options for Graves’ focus on eliminating the hyperthyroidism.

Once hyperthyroidism is under control and thyroid hormone levels are stable again, most patients *do* feel relief from symptoms such as rapid heat rate, insomnia, hand tremors, anxiety, etc.. However, we still hear from many patients whose levels are “normal” – but they still feel symptomatic.

This hasn’t been well researched in Graves’, but there was a study out of Vienna done on Hashimoto’s Thyroiditis, another autoimmune thyroid disorder. The researchers found that a certain percentage of women still had symptoms that affected their quality of life – despite having “normal” thyroid hormone levels. One theory is that the autoimmunity itself might have an impact on symptoms.

Bottom line, if you aren’t feeling well, you need a doctor who will work with you to try and help you find some relief. That might mean searching for another related condition or changing your treatment/dosing regimen. You deserve to get your life back!

[RebeccaJT]

#1169159

Hi Cate

I’m in the UK and I really identify. I now see my endo privately (he’s very good) and my GP does my blood work and we email the results in. Since switching docs I’ve had fortnightly testing and a very tight titration of my dose. First off my endo told me that there can be a time lag of up to two weeks on blood to symptoms. So you could have had a hyper blood result two weeks ago, a normal blood result today, and still be feeling hyper. It is very confusing!

I strongly recommend shopping around for a good GD doctor – this would probably be in a big university teaching hospital. My doc sees 70 GD patients a week, it’s his life’s work!! He knows his research and he really cares.

The thing to get your head around is ‘normal’ thyroid blood reference ranges. They are worked out by testing 100 female med students, ranking their results high to low, knocking two off the top and bottom (as out of range) and plotting the other 96 as ‘normal’. My endo said this not nearly a big enough population sample, nor is it scientific enough. It’s not statistically weighted to the whole population – male, female, old, young etc. Worse, (bad) doctors will tell you that if you land in ‘normal’ ranges, that there is nothing wrong with you. The test was never meant to be used this way.

A bell curve plots what is typical within a demographic. Like IQ, or height, or exam results, or growth quartiles for infants. Unless you are NZ’s tallest woman, chances are you in ‘normal’ height ranges. I’d also wager you are not the same height as me! Now it’s (pretty much) the same with thyroid – you will have a quartile, even a sweet spot, where you are ‘normal’ for Cate. You need a doc to listen and take an interest in your symptoms as well as your blood. Initially safe ranges are more important, but your doctor should care about how you feel.

My doc really helped me too when told me that elements you consider to be parts of your personality are probably your GD – usually a tendency to rashness and rushing at decisions. The agitation associated with Graves is often wrongly labelled as mental issues, which can knock our confidence. He said the goal of treatment was to slow me down sufficiently so that I and not my illness got to make the decisions. I’m nearly 18 months in and we are finally getting me stable in remission on ATDs. I’d say, unless your life is at risk, or there are complications, then TAKE YOUR TIME.

Also, I found betablockers (propranolol) really helped with the shakes, tremors and going too fast on the inside feeling. They slow down the conversion of T4 to T3.

I’d recommend complimentary treatments too (meditation, yoga, gentle swimming, walking, acupuncture, reflexology etc) to try and calm your nervous system. GD thrives on stress. If you can simplify your life, all the better. I’m freelance which has been scary but I’ve managed to halve my workload. I’ve learned to say ‘NO’ in lots of areas of my life!

I’ve also found the Alexander Technique to be absolutely amazing and I think it’s been instrumental in helping create the conditions for healing (I speak only for myself). Also I’ve found the supplements selenium, COQ10, L-Carnitine, Lemonbalm, magnesium, zinc, Omega 3,6,9, have really helped too. If I track back through my results my levels started falling once I started taking L-Carnitine and Selenium (no doubt combined with good self care, good nutrition, and drugs!) and doing Alexander. See Elaine Moore’s website for some balanced information, beware the web, cranks abound!

Finally, in response to your question, my take is autoimmune element aside, GD is a symptom of a "dis-ease". My own very unscientific research seems to suggest we GD people are of a type. We do seem to be over achievers, people pleasers, million miles an hour, anxious, driven people! We seem to have a hard time relaxing (without chemicals, lol). We put others before ourselves. We neglect our needs. We can’t say no… I could go on!

I decided I needed to change, not just fix the symptoms. I can see now that GD had been coming for a long time. I can’t speak for anyone else, but it is of no surprise to me that I’ve manifested an illness where I am quite literally attacking myself. This, symbolically, is what I’ve been doing all of my life – smoking, drinking, partying, worrying, working too hard, binging, starving, not caring for myself, allowing other people to trample all over me. I have been ‘dis-eased’.

I am a changed woman!!! On the upside, GD symptoms have given me permission to start getting angry about things that matter – I just can’t keep it in. I am finding my voice!! I have also put more time and attention into my spiritual life – I could have died, so what’s it all about????

I suppose what I’m trying to say is on good days I’m starting to see that GD might have turned up as a bit of a warning. And when I can stop fighting with what is, and start trusting my body, I can see this whole process as an opportunity to change course.

In short, I am trying to love myself better – and it seems to be working.

Take good care,

Rebecca

[Hopeful]

#1169160

This is the best post ever. Thank you so much. Thank you for your clarity in describing the disease. That is exactly how I feel most of the time.
Take care of yourself too!

[RebeccaJT]

#1169161

Hi Hopeful

You are very welcome!! I am toying with the idea of trying to write my experiences down. I’m starting to think that perhaps it might help me to help others, who knows! More on the ‘finding my voice’ theme …

Anyway, just to say I looked up your other post, and I hear how distressing things sound right now. I really hope you are getting some answers and some relief.

Best wishes

Rebecca
x

[MikeLSU]

#1169162

NZcate, except for the fist 2 months when I was having blood tests my hormone levels have been Euthyroid (normal). I still have many of the symptoms. My least favorite is the heat sensitivity. I get my levels checked every 6 months now. I was having it checked monthly.

This is really a good site for untying this very deep and tight knot called GD. Read and read some more! It is especially good to read when you feel like %^}#. At least twice I found posts of people describing EXACTLY the feeling I was having physically and or mentally at that the time I was reading. I would cautious call this site therapeutic. Actually, no caution needed, it is therapeutic. Thanks again to the admins!

Mike

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