[SallyB62]

#1062001

The Mayo Clinic website has some articles on Grave’s disease and possible long term effects.

I, too, am worried about this. I started bugging my doctor in about year 2002 that something was not right; and, I thought it might be my thyroid. It’s a shame. . . all those symptoms and not getting treatment until late 2010. Early last year, I had the classic ankle swelling and eyelid retraction; but, the doctor only concentrated on the ankles. Couldn’t find a reason for the swelling and said that I must have overloaded my kidneys with salt (I don’t salt food or cook with salt). Luckily, mid-year, I went to donate blood on a Saturday morning. They told me my heart rate was too high and to have a doctor check it out. By that Sunday night at bedtime, my heart fluctuated between 120 – 136 bpm resting.

But, I could go on and on about all that. I worry about the lasting congnitive affects. Could there be long term heart and bone consequences? Etc.

If you find any good resources for answers, please post.

Michele

[erica]

#1062002

thanks for your responce Michele.

if I find anything i will totally post it! Right now i am paranoid, lol, so it is on my mind. Any time i get too down about it, i just think, hey, it is better than cancer. It is better than having had crazy chemo. That said, my mom tells me i used to be different in the head. She knows me more than anyone and she would know. it lists the emotional effects of long term untreated graves on most sites, yuck. i guess i just want to hear that someone else went years without treament and they are ok ” title=”Smile” />

[erica]

#1017979

Did anyone else have a large amount of time before they actually got a diagnosis?

I apologize if this has already been asked, I didn’t see it. I had always thought it was just stress so it took me years to get my first diagnosis. The doctor told me I probably had it about 8 years or so. Funny because I had seen an ophthalmologist who said I had high eye pressure, had gone to the dermatologist for hair loss and acne-they said stress, and family doctor who told me my palpitations and sweating were probably from stress and hormone changes. When I heardall that, it sounded logical and not serious, therefore I went years without caring, meanwhile, more symptoms slowly got worse and worse. I went years with accumulating and ignoring symptoms, just thinking it was stress.

I worry about the effect that has had on my body and brain. People tell me I look young for my age, but it is what they can’t see that matters. Like my anxiety for instance, I never remember having that before the other symptoms. And it left when I went into remission. So, I am wondering if all those years of having untreated Graves has been hard on my body and brain? Has anyone else gone through his and if so what do you think?

[mamabear]

#1062003

Hello, I look back and know that I had symptoms as well. When I was 18 mom even brought me to the gyn for a first time visit and said she needs to be checked for thyroid issues, I think she has them. It said on a paper that I had a copy of from that very dr. what moms words were so i know she really felt that way.

My levels were always "within normal limits", but looking at them they were always on the low side of the range. You have to take into consideration that we were raised in a house that wasn’t so nice and we were stressed and it was quite scary at times. I wont go into details but it was a lot for a child to take on. So saying "normal" as an adult well that depends on what normal is to you. ” title=”Very Happy” />

I have memory issues, but after diagnosing my ds16 with learning issues many years ago I realized I too have learning disabilities, you know the types of thigns that schools now give kids help with to help teach them techniques to over come how well or poorly they learn. So again, not sure if that is Graves’ related or not but it is something I have. If I dont write down what i need to do I WILL forget it, again it’s is it from a learning disability or is it from Graves’ or is it just who I am? You don’t know and you might not ever know.

My skin was bad as a child, peeled all the time, itchy, painful but I had eczema or so it seemed so really don’t know if that was really Graves’ or not.

I wasn’t diagnosed with Graves’ until I finally had the flu and about 3months later went to the dr. for this weird feeling and my TSH level was 0.03 (range at the time was between 0.35-5.5) So it confirmed Graves’. That was back in 2001.

I went through ups and downs and medicine and pregnancies and a lot of things. CUrrently right now I am 4 years in remission and I am at my own "normal". I function just fine, I don’t think about Graves’ every day, I do watch out about getting sick and my stress levels. I know one day I will no longer be in remission but I’m ok with that, why be upset about it is how I feel. When it happens then I’ll deal with it.

I have lower back pain and upper back pain but I also played sports as a kid and I had Lyme disease last year so again can’t say it’s from Graves’ or not. It is what it is and as long as I am healthy I wont fuss about things. I wish my back didn’t hurt as much and am working on strengthening it but to say this was from Graves’, (which many have said it must be) is really not what I want to do. I’d rather just try to fix the issue with exercise and see where it takes me.

[Bobbi]

#1062004

Certainly, there’s no point in fretting about something we cannot change. But there are some known issues for those of us who spent any time hyperthyroid.

First of all, we have lost bone. What this means, going forward, is that we are likely to develop osteoporosis earlier than we would have without the hyperthyroidism. That doesn’t mean we WILL develop it. Some folks have very dense bones and therefore may never have been in line to develop osteoporosis before their deaths. But getting your bone density checked at some point is not a bad idea. A study a few years ago found that a larger percentage of those of us who have been hyperthyroid suffer hip fractures as we age. This is nothing to take lightly. So looking after our bone health is a good thing to do. And taking any calcium supplements if ordered by the doctor. And getting weight bearing exercise on a regular basis. This means walking, jogging, playing tennis, etc. Weight bearing exercise. Swimming, for example, while excellent exercise, will do nothing much for our bone density issues. Riding a bike, ditto, unfortunately. Pumping iron, however, may have some bone density benefit.

[Ski]

#1062005

I just wanted to jump in and say it is actually very common for us to go a long time before diagnosis, for exactly the reasons you all mention. We all (along with our doctors) tend to brush off symptoms with a "stress" excuse, or "age," or something else that can’t be corrected (exactly), that we somehow "buy" because it doesn’t seem "that bad." No one wants to be sick, and we all think that one good night’s sleep, just a week’s vacation, etc. etc., will put us back where we should be. The symptoms we experience early on are very much the same as minor symptoms of at least a dozen other conditions (If I really sat down and added them up, I’m sure it’d go beyond even what I imagine), and most doctors assume a "simple answer" stance, at least at the start. We buy into it, because we believe it ourselves to some extent, and time passes, and here we are. I was very lucky to have a diagnosis within 90 days of my first measurable symptom (I had probably been "flirting" with it for more than 10 years at that point, but I don’t believe I was truly hyperthyroid for any length of time prior to that), but that’s because I had a fabulous doctor who took the opposite stance of "brushing it off," she took every test of every body fluid she could think of, and then took a look to see if anything jumped out at her, and of course it did.

Unfortunately, before we are sick with a thyroid disease, we tend to know nothing about thyroid disease, so we don’t even know to ask for the simplest, least expensive test to find out if our symptoms are related to thyroid imbalance. The fact is that it is not a very common reason for those symptoms, so we’re likely to find more patients waiting a while for correct diagnosis than those getting a rapid diagnosis. The real challenge is that we need to get to people who don’t even know they may be affected, in order to let them know to be proactive. Once they’ve gotten the diagnosis, the entire conversation changes, and that’s when they usually find us. It’s something we’d really like to correct ~ the overall awareness of thyroid symptoms and their causes, and the need to just get tested to know for sure. Not everyone will end up finding out they have a thyroid disease, but it could save so much pain and heartache for those who do, just by starting treatment sooner.

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