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AuthorPosts
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kallikat
November 20, 2008 at 1:31 pmPost count: 29I’ve always been positive – the glass is always half full with me! The problem with being an optimist is the frequent letdowns when things turn out negative. I’m upset for a "minute", until I figure out what the "silver lining" is this time. (I have always been one to "figure out" everything – definitely type A!) So I guess I’ve always been on a mental roller coaster. (No – I am not manic-depressive, I asked a psychologist about that once, and he assured me I’m just anal retentive!) Then GD introduced a physical roller coaster.
Now, if I can only get the mental and physical roller coasters to go up and down at the same time! LOL
Also – I often wonder if God is using GD to teach me that there are some things I just can’t control in my life. I fear I am failing this test horribly!cathycnm
November 20, 2008 at 1:47 pmPost count: 284Killikat – Lessons, indeed. I look at Graves as my chronic burn-out illness and osteoporosis as my chronic under support illness by what they symbolize in my life!
My lessons seem to be about creating better balance in my life and about building supports that are really there when I need them. When I was going hypo rapidly after RAI, I woke up each day picturing my life being about 3 priorities – Health, school and work. In about that order. If one considers all that goes into health – job satisfaction, happiness, friends, optimism, as well as physical illness – that was a tall order and a huge shift.
My insurance uses a firm called healthways where you do an online assessment that gets "scored" with labs and physical findings. My score started great but has slid 3 points a year the last two years – so I am a low B now! There is a similar type of test on line (free) at http://www.realage.com – I take that one every few months to remind myself that work, work, work is not where I need to be headed. Balance, balance, balance – keeps me from breaking hips! Cathy
JoyWV
November 20, 2008 at 7:41 pmPost count: 4I am kinda shocked reading some of these posts. Is it true that stress is a big trigger in Graves? I’ve been under astronomical amounts of stress since Christmas of last year. I’ve made some poor decisions that I take the blame for but mostly going through domestic violence (nonstop since then) and multiple issues at work, since he destroyed my equipment once, I do transcription from home. So this can go away if I get rid of the stress???? I still think my doctor will think I am cookoo if I tell him this stuff. I just recently came back to my husband a few weeks ago. I am already feeling the pains of wishing I would have stayed gone this time. I am paying the price physically, emotionally and financially to give him his dream of having a baby of his own, just to get a slap in the face. Seems he only wants to fight more when I am sick. I am not looking for sympathy, just answers. I would do anything not to have to deal with this stuff.
Joy
cathycnm
November 20, 2008 at 8:35 pmPost count: 284Joy – You ask good questions. First of all – most diseases take the right mix of genes and environment – personalities may play into that. So, maybe my osteoporosis would be an example. I gotta da genes – pure and simple – lot’s of maternal relatives. I also am the right age (post menopausal) and small frame. At the same time, I have eaten OK most my life but not great. Too much pop and fast food during my on-call years, for sure. Started taking supplemental calcium at 35, after I reached the peak bone mass at age 30 (as strong as bones ever get happens at that age so supplements are most effective BEFORE). I am very active – so that is in my favor. So – environment in this case is diet, supplements and exercise. I can add to that environment some medication that may even reverse the damage to some extent. Will I always have osteoporosis even if I am effectively treated? Yes!!! It is in my genes.
With Graves, stress may factor in because it is autoimmune. Stress has major impact on the immune system. Immune cells "talk" to stress cells – they are close enough to be family with each other on "autodial". So, when stress comes into the environment – if we have the right genes – it may tip us into the autoimmune response we call "Graves". Will getting rid of the stress mean we don’t have Graves anymore – unfortunately not. Though it may increase remission rates (??????????? I have not seen research but it is feasible) or lesson symptoms. Stress is something we do have some influence over – any of us can improve resilience to stress even when we are in a bad place. Genes are not influenced so easily.
Many illnesses are positively impacted when we reduce stress (or said more positively, improve optimism/resilience). A huge part of the healing for me is to look at what my environment may be telling me about susceptability to disease and to work on that to improve my resilience – or ability to bounce back from stress. Hopefully that may help me to age more positively and live a longer, healthier life – even though the chronic illnesses will always be part of my life. Hope that helps. Cathy
Ski
November 20, 2008 at 10:19 pmPost count: 1569Cathy, you say it all so well!
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Just wanted to jump in and say that’s right ~ once we are in this disease state, we are ill, and it’s not reversible. All the stress reduction in the world won’t change that, and we need to proceed with some type of treatment. We can use stress reduction to assist, because it is always good for us to have more balance.
To Joy, I just wanted to say that continued stress has the possibility of "flicking the switch" on even more autoimmune conditions, so lessening stress is very worth it. It may save you from some future difficulties. YOU are worth it.
ohiolady
November 21, 2008 at 12:25 pmPost count: 12I’ve just been diagosed with Graves and I am a bucket of nerves. If I choose antithyroid meds and later want RAI will that throw off the RAI so it doesn’t work as well?
Ski
November 21, 2008 at 1:24 pmPost count: 1569Nope, feel free to go for ATDs first, and if you don’t like them or other issues arise, you can stop taking them for a short period and go ahead with an RAI. The only issue is that their chemical function would keep the RAI from getting in, but once you’ve stopped taking them for a short period of time (not enough time to go hyper again), you are back where you would’ve been without them and can proceed with RAI if that’s your choice.
ohiolady
November 21, 2008 at 6:29 pmPost count: 12I am 50 & just started menopausal symptoms when GD entered my life – There are two antithyroid meds – everyone talks about PTU but what about the other – I understand PTU is safer if you are pregnant but I am past that stage – is the other med better or stronger or just different? The symptoms of this disease seem to appear for me when I am trying to concentrate or do small things – if I stay doing something (like using the leaf blower to blow the leaves) I’m not feeling them. How does this work? They seem to come and go.
I am a type A and noticed that others have posted they are the same. If I can control stress it will help relieve the symptoms? What is the longterm outlook on life being normal again? I’ve noticed some have said that it is a roller coaster to get the thyroid under control. Is that with the meds &/or RAI?
I have seen an endo and he has said it is my choice on which treatment to choose – My uptake was 34 – how does that fall in the range of those diagnosed with GD? For those of you who have chose the meds how long did it take for the thyroid to slow down? How about with RAI? Did the meds or the RAI make you feel sick after taking it?
My husband & I have planned a trip to Hawaii in February and would like to feel normal but I think that is out of the question that soon – I am trying to get a positive outlook on this but am really struggling. Right now the lack of being able to concentrate and make my fingers work the keyboard properly is a bit much.
WOW after reading what I wrote it is all over the board but I don’t have the mental concentration to fix it.Ski
November 21, 2008 at 6:44 pmPost count: 1569Hello ohiolady,
The two ATDs differ slightly in their function, but they accomplish the same thing. I’m not sure why a doctor or patient would choose one over another (other than pregnancy, or difficulty with one of them). I know PTU needs to be taken throughout the day (typically multiple pills at each dose), and methimazole is once a day. I’ve heard PTU tastes horrid. Methimazole does not.
The ATDs are really your best bet to feel better quickly, as long as you tolerate them well. You’ll need at least six weeks just to let your body flush out the excess thyroid hormone in it when you began taking ATDs, so factor that in to your calculations.
It’s a bit of a roller coaster to find normal levels, no matter which treatment you choose. Thyroid hormone levels adjust in the body slowly (it’s a protective thing the body does for itself), so we really need to be patient between adjustments in our medication dose (whether it’s ATDs or replacement hormone). If we try to get in too close ~ testing and changing doses every few weeks, for example ~ we can actually make things more complicated, because we’re reacting to something that isn’t finished processing yet. I hope that makes sense.
If you can limit your stress, and improve your response to stress, it will absolutely help your symptoms. Stress stimulates the immune system, and that’s where our damaging antibodies come from, so when you stimulate the entire system, you stimulate these as well, which increases our symptoms. Limiting stress can’t change your thyroid hormone levels, but it can help you to feel better overall.
It’s hard to say how you’ll feel in February, but you may be well enough to go on the trip. At least it’s a relaxing trip.
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Your uptake percentage actually doesn’t correlate to how sick you are, or even how bad your symptoms are. It can tell you that it’s higher than a normal patient’s uptake percentage, and so point to Graves’, and it is used in the calculation for figuring out your dose of RAI. It means that 34% of the RAI dose would be taken up into your thyroid, so then they "backwards figure" the number of millicuries you’d need in order to get as many into your thyroid as they think you need.
For now, take it EASY on yourself. You may not look sick, but you are fragile right now.
ohiolady
November 21, 2008 at 6:55 pmPost count: 12ski
Thanks for responding – I have been riding a spin cycle for excercise. I read in another post that excercise needs to be scaled back – my endo did not say to be careful. Can I ride?Ski
November 21, 2008 at 7:26 pmPost count: 1569Check with your doctor, but typically we are told to limit exercise while we are still hyperthyroid. There are a few reasons ~ first, our muscle "tear down" mechanism is accelerated, while our muscle "rebuild" mechanism is suppressed, so you can actually lose more muscle mass if you exercise than if you don’t. Muscle mass is very important ~ it burns calories even at rest ~ so you don’t want to lose it if you can help it. Most of the weight loss people have when they are hyper is muscle mass, so it is NOT the good type of weight loss.
In addition, hyperthyroidism can cause irregular heartbeats, which can be very dangerous because they can get out of control. Obviously, exercise speeds up the heart rate, which may complicate matters further.
I’d stay off your cycle until you talk with your doctor.
ohiolady
November 21, 2008 at 7:29 pmPost count: 12Thanks for the answers –
cathycnm
November 21, 2008 at 8:13 pmPost count: 284Ski – That is great info about exercise. I am always learning something new here. Before RAI, I was really going by pulse and keeping that reasonable. Of course – my uptake was only 33% so my Graves was mild and my pulse was 80’s at rest. I limited to slow walking with my i-pod. Of course, I have the osteoporosis and am on the med to build bone for 2 years – I already had my thyroid working against me on that. I guess I felt like I needed to keep moving some for the bone’s sake. I am wondering if there is any research on the impact of exercise on bone with untreated Grave’s. I am wondering if – since it is the "stress" of the muscle moving the bone that triggers new bone – it does as much good. I am sure it is really hard to know – give what Graves is doing to the bone, anyway. Your post jost got me wondering . . .
skichick732
November 22, 2008 at 11:46 pmPost count: 6I can’t believe how many posts and unique experiences all of you had. Not to mention all of the advise. I am also Type A and feel like I am awful because I can’t do it all. My endo on weds said he overshot the mark with me and increased my PTU this time instead of reducing. I have a question – how long do I fiddle with the meds before it is time to think about RAI or thyroid surgery. I would rather not do the RAI since I want to have a baby and I have heard that you can’t until 1 year after treatment. Is this true? Thanks again. Jill
mamabear
November 23, 2008 at 3:02 pmPost count: 484Hello and welcome.
I too have graves disease although in remission for 18months now with no meds. I just wrote a thread on Skin and hair treatment with thyroid issues feel free to read it. it might help.
Your hair will come back but like Ski and the others said it will take time. I personally I have about 3 feet of hair (from forehead to ends). Mine too was coming out in chunks and yes it is very very depressing. It was the last thing that started to get fixed once I was on meds. Also know that hair does come out on its own and the more hair you have the more it will look like it is a lot. Of course having Graves disease doesn’t help but your hair naturally will shed so don’t be fooled once you are better. Since you are going through this you will be very very in tuned with your body and your hair so you will notice your hair shedding, that will be normal hair shed obviously if you notice it more often then not then see your dr. to make sure your levels are ok.
I had had one child at age 21 pregnancy at age 20 with 1st marriage. When I married my 2nd husband I was 26 and it was not something he signed up for either. But this was me and that was just the way it was going to be. I did go on meds (PTU) and I did go within range much faster than most people do within 3months time. I went to see an RE(Reproductive Endocrinologist) and she helped me get pregnant. It was much easier than we thought it would be and again it was faster than most people. Some people have to have procedures done several times and use drugs to induce ovulation and such. I did get pregnant and after baby was born and 5months old started to try again with the RE and when he was 10months i would up pregnant again with 3rd child. It was wonderful to be able to get the help I needed.
In between I did go out of remission but again I was back on meds and did fine, then went off meds and 7months later while I was doing great got pregnant on my own with 4th child. It is never easy but it can happen. Just make sure you have an RE that will do testing to see where you are having a problem. A Gyno or just Ob wont be able to help, unless they do fertility in their office. If you are looking at what types of fertility tests and want to talk privately please PM me.
As far as your DH please ask him to stay informed by researching the disease. It will help him be able to understand your pain and anger and depression. THe snapping and the "SHUT UP’s!"" that will come out of your mouth. HE will be able to see changes in you that you might not be able to see. If he needs to vent please tell him to come on here as well. He willbe more than welcome. Any venting that he will do or you will do should not be personally. He should be able to have a place to vent about you and vise versa as well. This will only help you both get through it.
I have to go for now. Things will get better even though it stinks. we are here for you!!
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