[IrishPoet1920]

#1019925

I am 24 and I was diagnosed with Grave’s Disease Jun 16th 2008. I am still trying to understand this illness, and the toll it is taking on my body. For starters, I was a very athletic girl, solid muscle, and very active. I am also a work horse, an prefer at my already petite frame of 4’11" 100 lbs soaking wet, to be out doing manual labor jobs like my most recent one as a plumber. Unfortunately, due to this ailment I am out of a job, because my heart rate went from the normal 60 beats per min to 124 upon just standing…an often at a sitting position. So I lost my job, because I just couldn’t dig ditches, stand on a ladder, or anything that the job required of me. Also my solid muscle is gone, not from inactivity, but because apparently my body is eating away my muscle, and I am having the worst time gaining it back. I dropped ten pounds the first two weeks after my diagnoses, and have only gained 2 pounds back.
I am very frustrated because I have a very active 7 year old daughter, that I can no longer keep up with. I am always tired, and my medication just isn’t helping. I am unable to work, because my medication makes me almost narcoleptic, and I am often falling asleep in mid conversation. I no longer drive, my own choice, because I if I am in the car for more than 30 minutes I start to fall asleep, even though I am well rested and wide awake. So to prevent anything from possibly happening, I no longer risk it. None of these things happened to me prior to getting sick. Oh yeah, and I am always sick with one thing or another. I catch everything, despite taking supplements of vitamin C, Calcium and the like.
I am just mentally and physically exhausted……I no longer have health insurance, and cannot receive medical assistance, because apparently I do not qualify. Since I am out of a job and its Christmas time, I am beyond frustrated, and depressed. I desperately want to work, and would take anything just to be able to support myself and my daughter. Unfortunately I live in an isolated small town , with the smallest wal-mart (yes it is true) in the country.There are no jobs available that I wouldn’t have to drive 30+ miles to get to.
I just am at a loss as where my life will lead me, and how I will cope with this disease. If anyone feels compelled to give me any advice, or lend their knowledge this way, I would greatly appreciate it. You may email me if you need to at IrishPoet1920@aol.com
Thanks
Sheana

[Jeff_Thompson]

#1075067

My wife has Graves. I would tell you to hang in there but I know that’s not what you want to hear. There is the old God opens a window deal and the new oppertunities line and think outside of the box…. I work in manufacturing and was layed off four times in three years from 2002 to 2005. It’s not fun but it is what it is and the way to get through it is to realize that God always opens a window and there are always new opertunities and you have to think outside the box. We live in Mpls. MN and I drive 45 miles one way to work, no big deal in a large city. I also grew up in a small town where 30 miles is a long way. I filled up the tank this morning at $1.53 a gallon. If the jobs are 30 miles away then drive 30 miles, don’t make a mountain out of a mole hill. Check out the plumbing and industrial suppliers for warehouse and city desk jobs. City desk people that know their stuff are worth their weight in gold. Go to youtube and search EFT, emotional freedom therapy or tapping. Tapping isn’t a cure all but it may help you focuse on staying positive.

[mstywine]

#1075068

I am 54 and was diagnosed in May of this year. By the first of August my eyes were involved (protruding and double vision at all times) and I had RAI by the middle of August. That’s when I started feeling a lot like you sound. Very weak, losing more weight, not recognizing myself in the mirror and just generally feeling awful. I was fortunate to have sick leave and was able to take the next three months off. I found that taking the time for myself was very good for me. I hold an ice pack on my eyes for about a half hour after I go to bed and if I wake up in the middle of the night, I go get it again and it helps me go back to sleep; i would sit outside in the sun for a few minutes each morning; I love to read and found that I couldn’t so I got recorded books from the library and began to enjoy them. And eventually I gained some weight back and felt stronger. I also live in a rural area and have to drive 30 miles to work and it took me a couple of months before I felt ready to try driving at all. I now drive with a patch and do okay with it. I have gone back to work half time for now. The important thing is to find things you can do and still enjoy and time will help. I hope that sometime in the future I will be able to enjoy riding my bike daily again (in the summer, I live in the mountains in Colorado) and can get out and take walks (right now the wind bothers my eyes too much). Sometimes it just the simple things that you have to take the time to enjoy when there doesn’t seem to be much to be joyful about. I know it doesn’t help much, but hang in there. You sound like a very strong, capable individual that can get through this. Keep trying. It will be worth it when we are well and can look back and say I MADE IT!!

Mary

[Ski]

#1075069

Hi IrishPoet1920,

I’m sorry to hear that you’ve joined our little club…. I certainly hope you are getting SOME treatment for your Graves’ Disease, because hyperthyroidism will not go away on its own, and it is extremely dangerous.

I can tell you all the individual reasons for your symptoms, but the bottom line is that your body is under attack, unfortunately from its own immune system. There are antibodies attacking the thyroid and pretending to be thyroid stimulating hormone in order to fool your thyroid into releasing more and more thyroid hormone. Thyroid hormone is the fuel for every cell in the body, so each and every cell is "revved up" when we’re hyperthyroid.

Some processes are interrupted as well, as you have discovered. When you work out, hyperthyroidism accelerates the muscle destruction, and suppresses the rebuilding process, which results in loss of muscle mass, even though you’re working out.

Consider the fact that you are like a car with a brick on the accelerator right now ~ engine is revving, for no reason. You end up completely exhausted, and yet strangely anxious. We have all been there, we know.

One thing we all seem to have in common is that we’ve been the "do everything" person in our circle, the one everyone counts on, and the one thing we all HATE is that we can no longer do that. Perhaps it’s a life lesson. Not sure ~ I guess we have to take it that way, for our own preservation. ” title=”Very Happy” />

Bottom line, no matter what the cost, GET TREATMENT. You will not get your life back until you get treated. And I don’t mean to scare you, but back in the days when there were no known treatments for Graves’ Disease, it was fatal 50% of the time. With treatment, you will have some tough times to slog through, but you’ll be there for your husband and child.

[IrishPoet1920]

#1075070

I am still taking the PTU and a beta blocker, I was able to have a very flexible doctor that would still supply my meds an under Walmarts $4 plan too. Personally I hate taking the meds, because they irritate an already existing ulcer, which started acting up again upon getting sick.
I am just a jumbled mess so to speak. I also found out that I have the protruding eyes (bug eye as my mom likes to call it) only to find out that it has always been there since birth, it just became more prominent since June 2008. I know that three years ago I was scarfing own pizza at work, I always had a spare pizza in my car while delivering because I was always starving. I didn’t notice the weight loss then, until a family member I hadn’t seen in years freaked out because I was skeletal. So, perhaps this issue has been there for quite sometime but happened in small storms. THe panic attacks I was diagnosed with many years ago could have been the start of it. Out of nowhere in 5th grade I began the panic attacks. It is scary what may have happened if I took the ER doctor’s words this june and didn’t worry about it, because I was healthy, sent me on my way with vicodin for a 2 week long migraine. My mother begged me to get a second opinion that same day, and I did. Immediately my normal doctor knew what it was in the first 10 minutes.
I do know what caused the start of the thyroid storm….STRESS!!!! I was very stressed due to my daughter’s bio factor after 7 years of no show, pops in and starts threatening. So yes that can do it. Plus working a physically stressful job did help I am sure.
Overall I am gad to finally put a name to my symptoms, and yes I do have plenty of good days. If I have a bad day, and my stress level is high, my tremors are severe. So, during finals week (this week) I have been taking my happy calm meds. I never use them any other time. However its take it or endup in the er with a heart attack.
Oh yes, for those that are experiencing pregnancy with this disease: I am truly terrified. I want more kids, and I am with a great guy, who I will in time marry. We want a brood of children. If anyone could give me some advice on this, and chill my nerves on possible scary events please talk to me. I found numerous issues that arise with Graves + pregnancy, and it is frightening. What safe avenues can be taken to ensure a healthy baby, and will the child be affected by this ailment from me?
Thank you everyone that responded to me. It feels good to know I am not alone.

[Bobbi]

#1075071

You asked about pregnancy issues: Before you even think about getting pregnant, you need to get your health straightened out. Pregnancy puts added stress and strain on the body, and thyroid being out of kilter can adversely affect things.

But, once you are healthy, if you get pregnant: we are considered riskier than normal for pregnancy simply because our thyroid levels must be "manually" monitored. The demands by the body for thyroid hormone change throughout the pregnancy. Normal folks’ bodies make the proper changes automatically. Ours do not. So, even if we are healthy to begin with, we still need more attention than the normal pregnant lady. We are not in danger, typically. Nor is the baby in danger if we are being appropriately monitored, our thyroid levels are normal for pregnancy, AND if the medication we are on is not hurting the baby.

PTU is known to cross the placental barrier, therefore it has the potential to suppress the baby’s thyroid function in utero. So, whether or not it is "safe" for the baby depends upon the dose that is required to keep the mother within the normal zone. To determine this type of thing, you would need to have a heart-to-heart with your doctors (including perhaps, a pediatrician).

Those mothers who had chosen to remove their thyroids (either via RAI or surgery) would be on replacement hormone which does not present a risk to the baby. They still have the issues about monitoring thyroid levels, but the drug is safe, again provided that the mother is being properly monitored for thyroid hormone levels.

Sometimes, but not, I think, always, the babies of Graves moms are born temporarily hyperthyroid. The mother’s antibodies (of all types) are in the babies’ blood at birth, and those antithyroid antibodies can cause the baby’s thyroid to overproduce thyroid hormone. This is temporary because the antibodies are not the baby’s own antibodies. The baby is not producing the antibodies — it has simply inherited them, temporarily. If this does happen, the baby may be given antithyroid medications for a while, until the thyroid function is back in the normal zone.

Any children born to Graves’ parents have a slightly greater risk of developing thyroid disease than the normal population, and perhaps are at greater risk for another autoimmune. It does not mean that any child of yours IS going to develop thyroid disease, but their risk is slightly higher than another person’s. I have simply told my children about this increased risk and advised them to watch for symptoms. Because my mother had Graves, I got diagnosed much quicker than I would have otherwise. It helps.
Bobbi — NGDF Online Facilitator

[IrishPoet1920]

#1075072

For starters thank you so much everyone for all of your input, and wise advice. Although more children may bless my life later down the road, I already had the intention of getting my health "crisis" so to speak in order before hand. Now, I am not sure if this is relevant, since we cannot exactly pin point when the disease reared its ugly head in my life, since there have been thyroid storm occurrences throughout my life at various points. When I was pregnant with my daughter 7 years ago I had a great many complications. I was high risk and at six months along I was put on strict bed rest, thus leading me to drop out of school. (a bit hard to rest properly and attend scheduled classes) This alleviated many of the symptoms. Upon labor, it was a whirlwind of elements that seemed to go wrong. I stopped breathing, my blood pressure sky rocketed, and my daughters plummeted. I actually passed out, but could hear everything around me. Could this also be connected, seeing as I had no health issues during pregnancy except weight. I was a strict eater, no junk, water and milk, and only the best, and small portions several times a day. Yet I gained 65 pounds, and the doctors could not figure out why.
When my daughter was born she had the largest appetite, and yet wouldn’t gain much weight at all, until I switched her to formula. More like had no choice, I dried up in the second month. ” title=”Smile” /> Is this what you meant Bobbi, about them being born possibly hyper thyroid?
After much thought these things came to my mind, as I must say this damn illness has wiped much of my memory out. I was like an elephant, and I could remember everything, and yet it is hard to be confronted with memories by those involved in them, and no longer recollect them.
Perhaps this also may be related to my petite stature from birth… don’t know
I will say that we do not have a history of it in our family, or well we didn’t. Upon my diagnosis, many family members who have similar symptoms are being tested. Thank God for small favors right? However, those being tested, fit the hypo-thyroid after many years of what now seems to be hyper thyroid. Oh yes, and if that isn’t strange enough,my 15 year old cat was almost two months ago with hyper thyroid. LMAO!!!! I didn’t even know cats could have that. Poor baby. Thankfully it is just a digestive disorder, and easily fixed by a diet change. Things get weirder and weirder everyday.
Does this mean that I may become Hypo-thyroid? There is still so much to learn and absorb. As strange as this sounds, I took an Anatomy and Physiology course in college this semester, and we had a whole section on endocrine gland dysfunctions. So I was earning much from that as well. Strange, but very educational.

[Bobbi]

#1075073

There’s no way of knowing, IrishPoet, whether or not hyperthyroidism caused the situation with the birth of your daughter 7 years ago. Eclampsia causes skyrocketing BP during birth events, too. And there may be other conditions that do it, as well — I’m not medically trained. The body is hugely complicated and one of the reasons why some of us had trouble getting diagnosed properly is due to the fact that the symptoms of many diseases can overlap. And, if your daughter had the normal contingent of blood tests after her birth, they would have spotted hyperthyroidism, I think. I’m not sure, but I think newborns are monitored for hypOthyroidism. The hypo condition in newborns can lead to mental retardation. The retardation is preventable if caught sufficiently early. It would make sense for that to be one of the standard tests on newborns.

The genetic issue is more complicated than just Graves. One family member could have Graves and another Hashimotos. Also, the "purpose" of the antithyroid antibodies is to get rid of thyroid cells, so all of us could anticipate going hypothyroid over time.

[cathycnm]

#1075074

Irish – I will make a couple comments on your pregnancy. If your blood pressure was high and you had a large weight gain (esp if this was swelling of face, hands, etc) then you may have had pregnancy induced hypertension or preeclampsia. That is not directly related to Graves and IS related to kidney function during pregnancy. It has a genetic component – often people go on to have high blood pressure later in life. Graves does not specifically cause those things – though it might make pregnancy induced hypertension less stable if it is present at the same time.

If you had pregnancy induced hypertension – then your placenta was stressed and probably could not function well once contractions added additional stress. Something like that is a likely cause of the baby’s slow heart beat. Sometimes, babies roll on their cords during labor, too – causing a slow heart beat – and that is more common if your amniotic fluid was low. Again – Graves is not directly related to fetal intolerance to labor. Without knowing your specific medical history – I don’t know but can only tell you what usually causes these issues.

As far as the baby not gaining – I think there are many reasons why babies don’t gain well. Sometimes they suck a lot because they are hungry – but they are not latching on to the breast in an effective way so they are not getting much nor are they stimulating the breasts to make enough milk. That is a far more common reason for poor gain on the breast than thyroid problems in the newborn. The fact that your baby gained on formula makes me wonder if it was a latch issue or poor suck – formula is much easier to slurp down than breast milk. It requires much less work on the part of the infant. So, my suggestion is if and when you do get pregnant again – if you want to breast feed – find a qualified lactation consultant to work with you to see if you can have a different outcome. Good luck to you!

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