[Ski]

#1065665

Hi there,

First, about the soy ~ I know that can be an issue when we’re taking thyroid replacement hormone, so I don’t think it’s an issue in your state. More importantly, your symptoms may mean you’re slipping into hyperthyroid territory again, and that’s very dangerous. I’m sorry no one explained the process of using ATDs to you, because while the goal is attaining normal thyroid hormone levels, the typical path is to just make sure you get the levels out of hyper range, then adjust as necessary to bring you back into the normal range, and hopefully find your normal point, at which point your body can *start* to heal from the hyperthyroidism. I know that some weight can come on during that timeframe, and it’s even more difficult because typically that’s when we’re prohibited from exercise, for our own safety. The bottom line is that things CAN and do improve for most patients, but it takes a great deal of patience, which is in short supply with Graves’ patients, when we’re at our most ill. You need to get back on the right meds, or just do RAI or surgery, so that you can start to heal. The fact that you don’t have insurance may limit your choices, but in the end I think RAI might be the cheapest treatment choice anyway, and if that’s what you want, it’s worth just paying for it to get it done. The replacement hormone you need afterward is one of the least expensive prescriptions there are, so it’s not a big financial impact even without insurance. ATDs still may work for you (that’s the methimazole, it works to limit your production of thyroid hormone), so I wouldn’t necessarily abandon those if you have any reluctance to destroying your thyroid. I believe you can get generics very inexpensively, and with the right guidance (and a great deal of patience) you may be able to find a very low dose that makes you feel right. The weight issue isn’t about the methimazole, it’s more about lowering thyroid hormone levels, and in some respects it’s weight coming back on you that is GOOD weight, because being hyperthyroid literally eats muscle tissue. Getting better means the muscle tissue comes back, and you need that, but it comes back like a baby’s muscle, which you now have to work up to its former strength in order to get the same calorie-burning benefits it used to give you. That may be why weight continues to come on, even if you’re hyPERthyroid, because you’ve lost muscle tissue and now your body can no longer tolerate the same level of calories without gaining weight. In either case, what will resolve your issue is normal thyroid hormone levels, and even then it’ll take a while. It’s important to get started, so you’ll get where you want to be sooner. Things can go badly, quickly, when we’re unregulated.

SO glad you found us. ” title=”Very Happy” />

[snelsen]

#1065666

Hi Lefty! This health insurance thing is crippling, I am sorry. I would like to think the health care would kick in and help you, but it is a big thing, and I don’t know the time line. I don’t have any idea what RAI costs, but you can bet it is more cost effective than surgery.
Regarding Reliv, there may be nothing wrong with it, but I looked at their website, and probably there is a better time than now in your life to begin using it, and spending the money that it costs to use it.
Ski is right on! It is so so so hard to deal with all of this. We understand. If you have a rapid heart rate, be sure to stay on the metoprolol for your rapid heart rate.
I don’t know if you live in a small town or big town, but I imagine there might be resources for you in a city that would not charge. We want you to move toward being well. YOu are with a whole lot of people who are so discouraged by this thyroid business, and so encouraged by this site. But hyperthyroidism is dangerous for you. I am sure after you get the right treatment, you will feel better, and the weight will begin to go away.
I have learned from this site, that there IS an end. IT is very hard for me to believe, but I keep clinging to this as a fact.
We are all with you, your new friends, keep writing.

[lefty117]

#1065667

Thanks to both of you for writing back so quickly. Some more information. I live in Northern NJ about 10 minutes from NYC so not a small town by any means. What could happen by not treating this? I know my levels have got to be sky high right now. I can just feel it. My left eye is hurting and bulging. I have a friend who has Graves too but shes insured. She thinks I have Graves Eye. She also is the only person understanding what Im going through. I think its even tougher for me because Im a man and much much fewer men get Graves the woman.

I have been told I can go to the emrgency room and get some kind of charity care. I know they can check my levels but how will they be able to treat me like my endo did? The funny thing is my GP was my Uncle. I have an Uncle who is a Dr and is no help. He referred me to my endo, I went to her for a 8, 9 months then my insurace didnt want to pay her. So she kind of wouldnt see me anymore. Then when my insurance was up for renewal I couldnt afford it. Im so broke and out of work. The one thing Im lucky with is my mother, she is the best mother anyone could ask for. I moved back home. She is out of work herself and looking for work but she is the one person who is here for me right now.

Im so cunfused and depressed. I have every side effect of graves disease.(except for weight loss I now have weight gain) If you knew me personally you would know how much this has changed me. I have always been shallow and cared about my looks. I also have been the most outgoing person you could meet. But now I dont want to leave the house nor do I have any ambition. I used to have all the ambition one could want.

My father was diabetic and later had kidney issues. I watched him dies for 30 years. He died at only 57. I never had any health problems. Now Im falling apart. I always thought taking a shot and checking his sugar levels were so hard. I wish graves had a daily tested like diabetes does. There is no way to get our levels right and know they are. Even when I was on the meds I felt great some days but other days I could tell my levels were elevated but wouldnt know until I went for blood work. I heard its easier to control your levels when you dont have a thyroid and use sythroid? Im affraid of Radiation. Does anyone have any knowledge of the side effects? I heard radiation could cause cancer?

I wouldnt wish graves on my worst enemy. ts like a job that you dont get paid for.

[lefty117]

#1018554

To let you know a little about me Im 37 and diagnosed about 1 1/2 years ago. I went to an Endo for a year was way over medicated at first. Finally after 8 months my levels were in range and I was on low doses of Methimazole. I gained like 75, 80 lbs from taking the methimazole over the course of year. I started feeling like garbage, turned out I was now hypo. I stopped taking all meds about 5 months ago. Over the past 3 or 4 months I have been feeling weaker and tired. Im still gaining wieght even though Im no longer taking any meds (other then metrolpol tart for my heart b/c my heart rate is up from the thyroid) Im very depressed. I no longer have health insurance, so even if I wanted to go back to the Dr I couldnt. Im out of work and just feel like dying. I dont know what to do anymore. I wish I could just have the thyroid removed. No one I know understands what I feel or what Im going through. Everyone seems to think Im just lazy and dont want to look for work or get back in shape. I wake up and dont even want to move. I go from my bed to the couch and have no ambition to do anything. Im in a huge amount of debt and affraid to get in even more because of my health.

Any help, information will be appreciated.

Oh and one question about a product.

My brother and sister in law are very pro Reliv. They bought me some of the products to use and I started about a month ago. I have not noticed any changes so I was wondering has anyone used it? If so does it work or should I not use it? It is a highly soy based product and I have read recently that soy isnt that great for you especially with thyroid problems.

[snelsen]

#1065668

Yes it is hellish on some days. A lot of them. There are several men on this site with Graves, TED (thyroid eye disease) plus one facilitator. YOu will probably hear from them tomorrow and the days after.
I know you don’t feel like doing anything right now, but you do need care and monitering. Have you had a social worker involved in your care at any time? A social worker would know resources and options for you. I have the eye issues, too.
Generally, a neuro-ophthalmolgist is best for following Graves eyes. But I know you do not have insurance.
I know you said your uncle was no help, but would he refer you to a social worker, or might someone in his office be able to help you with options?
Your life WILL get better, you WILL revert back to your old self. And it WILL take a long time. It is hard, I and everyone else on this site shares this with you. YOU are not alone.

[Ski]

#1065669

Jake is one of our founders, our shining star example of someone who got through it and is still smiling ~ he can definitely empathize with your position as one of the rare males with GD, and also as one who suffered from TED (his was just awful, you don’t even want to know). I’m sure he’ll jump into this discussion when he visits.

As to your questions ~ first, what can happen if you go without treatment? The list is long, and it includes the possibility of a fatal heart event. There are a few people here who have experienced the downward spiral of escalating thyroid hormone levels, and they have some pretty vivid horror stories. Your muscles continue to waste (remember, your heart is just one big muscle), your bones are eaten away, you begin to suffer temors, your brainpower decreases (I remember thinking I just couldn’t keep a thought in my head ~ thousands of things were going through my head at any given second, but none "stuck"), your hair can begin to thin and fall out more than usual, your fingernails can deteriorate and actually separate from the nailbed, your digestion can be inefficient and you visit the bathroom quite a lot, you always feel hot, you get anxious and angry a lot, your heart beats rapidly and can randomly go into arrhythmia (this is the only thing your beta blockers are protecting you from) ~ and to top it ALL off, you can go into what they call "thyroid storm," which is a state where everything goes completely haywire, your heart rate goes sky high, and that is an ER event, you would be lucky to survive it. We have a couple of people here who have gone through it, and they’ll be the first to urge you not to tempt fate in that way. Thyroid storm is a rare occurrence, among those who are undergoing treatment, but it is a very real threat when you are not.

In addition to ALL of this, the longer you remain hyperthyroid, the longer it will be until you truly feel well, because it is causing damage in every cell of your body as it goes on unchecked. We find that people suffer in various areas in their body ~ it’s not "standard," because each of us has weaknesses in different parts of our bodies naturally, and those are exploited by the thyroid hormone assault. Think of being hyperthyroid as if you are a car, and someone put a brick on the gas pedal. At first, the engine just revs really loud all the time, but eventually, places where the gaskets were beginning to fail or parts were deteriorating will simply, as I have scientifically named it, go "sproing." And the longer it goes on, the more areas are capable of going "sproing." SOME of this damage may be irreparable. Some of it you may be able to heal from. Minimizing the damage is important for your future health.

Now, about radiation ~ RAI has been used as a treatment for Graves’ for more than 60 years, patients have been followed closely, and they have found no increased rates of cancer. We need to remember that they also use RAI to treat thyroid cancer patients, and they routinely give them doses 10 to 20 times what we get. Even THAT is considered a therapeutic dose, and one that does not risk a future cancer event. Still, some people just have a visceral reaction to radiation, and for those people, there are ATDs or surgery as treatment choices. It is wonderful that we HAVE so many choices, we don’t just have to "take it or leave it," we do have options. The only option we really do NOT have is to NOT get treated. It is CRITICAL that you begin on some treatment path. You can go back to ATDs for a while to get your head back, then you can take the time to research and find out what you are most comfortable with.

I am not sure how much I buy the statement that it’s "easier" to regulate thyroid hormone levels after you have no thyroid, but I know I’ve heard that said a lot (by doctors who are urging their patients to do RAI or surgery). Many patients here are successfully managed on low doses of ATDs and they are very happy. Regulating thyroid hormone levels in either case can be tricky and time consuming. The only advantage to having no thyroid is that you don’t have "spikes" in thyroid hormone levels when antibodies become more active than they’ve been in the past, and I’ll let the longterm ATD patients here jump in to let us know how often that’s actually happened. I think once you’ve been successfully regulated, those spikes may be rare.

So please, get in touch with whatever agency you need to so that you can get some HELP. You need to get your thyroid hormone levels under control, and soon.

[snelsen]

#1065670

HI lefty, how are you doing? Have you had any luck with getting care and feeling better?
Shirley

[lefty117]

#1065671

Thanks to everyone that replied. I went to the ER the other day. They took and checked my blood. The funny thing is everything (other then my thyroid) is working perfectly. I was shocked when they came back with the results and everything was right in the middle of the ranges. Now on to the thyroid. It was totally out of wack. My T4 was 20.2, they said the range should have been 4.7 – 13.3. So its very high. For some reason my T3 isnt on the print out. My TSH is no existent its .010 and they said the range should be .358 – 3.740. The Dr’s didnt say much and didnt really help me. The one said my T4 level wasnt that bad, wow! I think they just wanted to get me out of the ER since I didnt have insurance. They actually told me to contact another hospital in Newark,NJ because it was a teaching hospital and because those hospitals have more "charity" care. I felt like they couldnt get me out of there quick enough. But anyway so Im going to go to the other hospital and take it from there.

Im a little nervous because I feel like crap. My legs are very weak, my eyes always seems to hurt after short periods of time in front of the computer and because my T4 is so high. I have about 100 – 5 mg Methimazole pills here. I was thinking of going back on them. When I first started on the methimazole over a year ago I was on 60 mg a day but my body was real sensitve to the meds (meaning they kicked in pretty quick not sensitve that I was allergic) that they lowered me to 10-15 mg a day within 2 months. Actually I was hypo after 2 months and was taken off the meds for 1 month then put back on methimazole about 10 – 15 mg a day.

What do you think? I was thinking of taking the 5 mg tablets. I was thinking of taking 5 mg 3 times a day so a total of 15mg. I figured its not too much, but atleast it something until I see an endo. Maybe I should take 30 mgs a day to start or only 5mgs a day? Any input would be apprecitated. Im thinking 5mg 3 times a day might be best? But Im open to suggestions!

Thanks again and I hope to get this fixed so I can get my life back to what it used to be. 1 thing I do know is once my levels are normal or the thyroid is removed and once Im back to making money again Im going to help others fight this awful disease. There needs to be more help and there needs to be more resources. I cant believe how little information there is and how little help there is for a disease that effects the entire body?!

[Bobbi]

#1065672

It’s really, really important, Lefty, that you go to a doctor to find out what dose of the medication to take. Not one person here online (anywhere online) is qualified to tell you how much of the medication you need. But with your lab reports in hand, even a GP could. Or should. When I was diagnosed, with labs like that, a GP gave me antithyroid meds and a dose to go along with it. You have to find the "just right" dose of the medication that is going to put you back into normal levels of thyroid hormone. Too little, and you’ll stay hyperthyroid; too much, and you’ll become hypothyroid. So the odds are if you try dosing yourself, that you’ll get it wrong and it won’t help. Even doctors sometimes overshoot the mark, which is why periodic blood tests are needed. "Normal," when you have Graves disease, can be a moving target.

I know you feel awful. That’s what being hyperthyroid does to us. I was (first) sent to a cardiologist by my GP because I was having heart flutters, along with a racing heart. I was put on a treadmill for a stress test. The cardiologist had to HOLD ME on the tread mill because my legs stopped working part way through the test. He said, "Well, your heart is just fine, but you are in horrible shape!" I had been power walking a couple of months before, with no problems. The thing is, I was left undiagnosed for too long, and my physical problems grew — like yours are doing. But once you get proper treatment, you will start healing and start feeling OK again. That is why it is so important for you to find a way to see a doctor.

Here’s a fervent prayer, too. I hope, someday, and soon, that people without health insurance have a way to see doctors and get help without being told they are "charity" cases. Whoever said that to you was a senseless clod.

[Kimberly]

#1065673

Ski wrote: Many patients here are successfully managed on low doses of ATDs and they are very happy. Regulating thyroid hormone levels in either case can be tricky and time consuming. The only advantage to having no thyroid is that you don’t have "spikes" in thyroid hormone levels when antibodies become more active than they’ve been in the past, and I’ll let the longterm ATD patients here jump in to let us know how often that’s actually happened.

I’ve been on ATD’s for about 2 1/2 years. I’ve had 3 "spikes" — and I suspect they were all brought on by stress. (I’m dealing with the third one now). I can tell when this is happening, because my heart rate starts to go nuts again. So far, I’ve been able to get things back under control with small dosage "tweaks". (Usually 1/4 or 1/2 of a tablet). My body seems to respond pretty quickly to the meds, so others may have a different experience to share.

Agree with Ski and Bobbi that you need to keep fighting for your right to treatment!

[snelsen]

#1065674

Agree with Ski and Bobbi. My suggestions:
-do NOT take any thyroid meds on your own. It is tricky enough with medical management.
-I am glad you other labs are fine, and not surprised.
-If you do not have a copy of your labs, I encourage you to have the private hospital where you went, print out your own copy. You will probably need to sign your name to a release of information form, that is fine, if they don’t offer it to you, ask for one. That is how you get your records.
-University hospitals are great, in my opinion. That is where I go for my care, to the department of endoctinology.
Most medical specialties want a referral to see you. This is a long shot, but when you pick up your labs at the hospital where you went, ask for (plead?) for a note from the ER (they can look at your chart) and write a note that they state that you need to see an endocrinologist for your thyroid disease. Hope it works.
-If you have noone to send a referral to the univ hospital endocinology dept., take your labs, GO there, find out where it is at the information desk. Go there, say you do not have a referral, that you do not have insurance, but you need to be seen in this department for management of your thyroid disease.
See if that works.

Now, I have no idea if you have explored options for yourself for medical care. In my state, people have Medicare coupons, probably called different things in different states. Have you explored what is available to you< I am guessing there are provisions for you to get care.

If you are still buying the soy product, I would stop it, save your money for prescription drugs. It will not solve your problems.
I am trying to give you a sort of a map to follow, hoping to eliminate some of the barriers you might face.
Shirley

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