Posted: 8/29/2010 3:34:15 PM EDT
anyone else have to deal with this shit?? Ive been on thyroid medicine for about 5 years now. My energy level and metabolism has gone to shit,on my days off all I do is sleep,and my medicine fucks with my nerves
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Yes. Graves' has destroyed my life for the past two years. I'm hoping things are finally starting to get back on track now, but only time will tell. It sounds like you're still too hypothyroid? Why doesn't your doctor increase your medication? I get my blood work done every 6 monthes,ive been on the same level medication for almost 2 years now. Im due up for more blood work next month,hopefully I can get things changed around. |
| I've been taking thyroid medication for hypothyroid (thyroid issues run in the family so does diabetes- I'll take thyroid any time) about 2 to 3 years now. How often do you get your thyroid level checked? I get checked every 6 months to make sure my dosage is correct. I have never had problems with palpitations or nervousness. I have a good doctor that stays on top of it and adjusts the dosage when needed. But that's kind of weird that you are swinging that much between nervousness and lack of energy. |
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I had mine out last year. It caused sweating, chills, fatigue and a host of other problems. About 2 years ago I felt pressure in my neck and had swelling in the lower neck that was choking me and all the while the Doctors said it was a benign goiter. I started burping, yes I know not much to go on there but it was constant. Then I had trouble breathing and bypassed my local doctors and parked myself in Mass General. The goiter had grown the size of a softball in my chest and collapsing my lung when they decided, after 16 needle biopsies, to remove it.
Most of my symptoms resolved overnight but now I'm cold all the time when I never was before. The problem with Thyroid problems is it's a boring condition and that's the way patients are treated, ho hum. Good luck |
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Yes. Graves' has destroyed my life for the past two years. I'm hoping things are finally starting to get back on track now, but only time will tell. It sounds like you're still too hypothyroid? Why doesn't your doctor increase your medication? I get my blood work done every 6 monthes,ive been on the same level medication for almost 2 years now. Im due up for more blood work next month,hopefully I can get things changed around. Which TSH reference range is your doctor using? The lower end of the new range is 3, though a lot of doctors are still going by the old range and using 5 as a cutoff. If your doctor is using the old range, that might be why you're still feeling too hypo. Hope it gets resolved soon. |
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My energy level has been horrible and my doctor recently determined my thyroid levels were way off and I do not produce vitamin D so I have no clue what will be done to resolve it. If your doctor tells you to take vitamin D, then I recommend you asking your doctor for a once-monthly pill. I was using over the counter vitamins before I asked for the once a month pill. It's much more convenient and, if it's covered by your insurance, cheaper than OTC. |
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BTDT
I have no thyroid. After discovering a 50mm x 70mm tumor they decided that removal & I-131 ablation was the way to go. It was a long road. The tumor was "discussed in lecture" @ Hopkins. Now that I am 6 years in remission, I have a good grasp of how fucked up the replacement hormone business is. I rely completely on an outside source of T1 through T4, I have no tissue on board to make the stuff. (also lost the parathyroids in the fray, but that is another story) 1 in 4 people do not do well on synthroid. They experience the same symptoms you are describing. Adding something like Cytomel can help, but it is not really the solution - it just covers up the problem. The assumption is that the T4 in the synthroid will break down to T3 at a rate that matches the thyroid gland's normal output. For some people that does not happen. Compounding this error, many doctors measure the TSH level, and call it good. Not so. They should be checking the free T3 & free T4. The TSH is a signal to the thyroid. They actually try to hold mine to zero, or as close to zero as they can measure. I fought with the synthroid, and my first doctor for several months. When I complained that I was tired & depressed, he wanted to bump the dose 25 micrograms. I quickly began to self-medicate. I finally found a doctor that understood. He put me on Armour. That helped a LOT. It still took a lot of convincing to raise the dose, but now I sleep well & work without dragging after a couple of hours. A huge change. For various reasons, some doctors do not want to prescribe Armour. Tell them to try it for you. It is Arfcom approved, it is made from BACON. Well, actually the desicated thyroid gland of a pig, so bacon was involved in harvesting your medicine. Don't put up with the jitters, sleeping all day or any other issues. The type & dose of meds can be worked out. I have lived for years without a thyroid gland, and once the meds are right it is not bad at all. Lem |
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I've had hypo in my family on both sides. I was diagnosed hypo when I was 12, and I'm 28 now. Been on Synthroid since the beginning.
Weight, depression and temper have been issues because of it. In high school, my junior year I was 6'6", 340lbs...between work, school, ROTC, hockey on the weekends and not eating much, I dropped from 340lbs to 193lbs in about 8 months. This kinda screwed with my levels, because I also have a bad habit of not taking my Synthroid for a week or four at a time. At one point, I refused to take it for about a year because I couldn't tell a difference or see the benefit of taking it. BIG MISTAKE. When I went back to get blood work done, the doc doubled my dosage (on .175mcg now, it went to .250mcg). I took the new dosage for a week or so, then one morning I woke up puking my guts out, and couldn't sleep/cold chills and sweats for about 3 days. So I stopped taking the new dose, went back, told the doc what the deal was and he lowered it back to .175mcg. The point is, don't stop taking the meds. It will mess you up. Now, I'm 6'6", around 220-230lbs, go to the gym every day and run/lift alternating days, work nights at UPS and teach people how to Scuba dive on the weekends, AND looking at joining the Navy. It seems that as long as I get up in the morning and eat some fruit or a good breakfast, then hit the gym for an hour or two, I have energy all day and night. Depression hits every now and then, and so does the anger management issues, but again, the gym seems to curb them pretty well. just my $.02 |
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For various reasons, some doctors do not want to prescribe Armour. Tell them to try it for you. It is Arfcom approved, it is made from BACON. Well, actually the desicated thyroid gland of a pig, so bacon was involved in harvesting your medicine. Is Armour still available then? I heard the rumors swirling recently that it had been banned. I don't yet know if I'm one of the people who don't respond well with synthroid, so the rumors have me worried. I can't seem to get a definitive answer on the drug. |
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"banned"? Sigh, more BS from the synthroid camp.
Armour is still available. They did change the formula of NON-ACTIVE ingredients (binders and the like) which caused the FDA to crawl up their ass for a bit. They never changed the active ingredient, and I have not noticed any difference in the performance. There were some shortages for a while about a year ago. I wound up on synthroid & cytomel for about a month, took another 3 weeks to get back in balance with Armour. Sucked. Has been a steady supply ever since. I have even had scrips filled at Target. Keep pushing, you don't know until you try it. Lem |
| Ouch. My wife was told she has Graves. Right eye is bulged out a little. Call her CY, short for cyclops. Sarcoidosis, Gall stones, ulcer and hernia. She don't complain! Dr's want to fix ulcer first then start on everything else. Getting old is a bitch. (Hope I didn't hi-jack your thread!). |
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"banned"? Sigh, more BS from the synthroid camp. Armour is still available. They did change the formula of NON-ACTIVE ingredients (binders and the like) which caused the FDA to crawl up their ass for a bit. They never changed the active ingredient, and I have not noticed any difference in the performance. There were some shortages for a while about a year ago. I wound up on synthroid & cytomel for about a month, took another 3 weeks to get back in balance with Armour. Sucked. Has been a steady supply ever since. I have even had scrips filled at Target. Keep pushing, you don't know until you try it. Lem Whew! Thanks! I just started taking synthroid two days ago. I was hyper for a year, had I-131 a year ago, and now I've just finally gone hypo. Compared to hyper, these hypo symptoms are actually preferable! How would I know that synthroid isn't working for me? I know that sounds kind of stupid, but what I mean is, will my levels show normal but I'll feel terrible still? How long does it generally take for the medication to start working, or how long before you know that it isn't working and it's time to try something different? My biggest fear now is that I'll be on a medication that isn't working but my doctor won't do anything about it and I don't know enough to know what's normal and what isn't. When I first started this whole mess, I was put on PTU and was having a really bad allergic reaction to the medication. I didn't know what I was supposed to be feeling and every time I complained to my doctor, she just told me everything was fine and to keep taking the medication because my levels were still off. I did that for about six months before finally getting a different doctor. The new doc immediately took me off the medication, told me I was allergic to it, and I haven't had those problems since. I wasted so much time and was so miserable for so many months that if I had just known and gone to a different doctor that all could have been avoided. Has anyone had any trouble with work as a result of their thyroid problems? I ended up having to leave my job that I loved and am now working part time, but I feel so pathetic. |
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A small dose of I-131. Especially if it took that long to fall into hypo.
I was in isolation for 4 days after the ablation dose. Guy walked in with a geiger counter every four hours, and stood back 5m every time. Told me not to hold children on my lap for two weeks after they turned me loose, wanted me to sleep alone for a month. Great fun. Radiation kicked my ass harder than the surgeries. I have a friend that went the removal route. Her thyroid was "all over the place" - one day her free T3 / T4 would be almost nothing, and a week later it would be double what it should be. She was a mess. Removal put her in the driver's seat, and she does well on synthroid. How do you know synthroid does not work for you? Several things come to mind, but some of it is related to dosing. My first doctor acted like the stuff was super powerful. a 25mcg move was a big deal. For me it was a joke. Since I had bottles of several small increments laying about, I just self-medicated. I started by adding 50% to his dose. At that point I could get off the couch for more than two hours a day. Doubling up was better, but I could still sleep 9+ hours at night, and take a nap mid-day. Adding cytomel got me back to 80%, but I could still overwork & crash easily with physical tasks. If you can't break down the T4 effectively, you "porpoise". Take the synthroid in the morning, feel ok by 11am. After lunch - crash. Rest for a bit... boom! lit back up like 10 am. Vacuum the house? Collapse on the couch. Up. Down. Up Down. Other symptoms are things like taking enough to feel hyperthyroid (restless, sleepless) but having no energy to actually DO anything. Actually the first post is a good description. I do 3k to 5k every day at an average speed of 7mph according to my GPS. The route varies, and I do less when it is over 110f. I take my 4 grains of Armour before breakfast, and feel fine all day. If it is hot out, and I am doing heavy physical labor I can overrun things a bit. A 10 minute break & I am fine. On synthroid I would have been done for the day. Lem |
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The average TSH for a Caucasian is 1.8
Most labs are still using a spread of 0.6-5.0, but most people feel better when their TSH is around 1.0 or 1.5. Many doctors do not realize this, and as long as your TSH comes back "within normal range" they do not want to mess with your dosage. However, 5.0 is Hypo, and you need more hormone. 4.5 is hypo too, but good luck arguing that one with your doctor. Vitamin D deficiency is often a problem for people who have thyroid conditions. It is a "bonus", not a cause. So you take vitamin D with calcium, but keep any calcium intake four hours away from taking your thyroid medication. Calcium affects absorption of thyroid medication. You should be tested every three months, and you should ask for a TSH test and a Free T4 test. Once your hormone level is good, you can have your doctor order a TSH with reflex to Free T4, which means the lab runs the TSH, and if it is "out of range" then they run the Free T4 test. You should have both tests run most of the time. A TSH test only tells the doctor what your body is demanding, not what it is getting. This is one of those diseases that you need to take control of as much as possible. Ask for copies of every test and keep them. You paid for them, they are yours. I know my test results before my doctor does. All the correct info in this thread really only scratches the surface. |
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A small dose of I-131. Especially if it took that long to fall into hypo. snip My doctor said it was a moderate dose designed to kill off part but not all of my thyroid. But I was very hyper. The plan originally was to keep me on thyroid suppressing medication for at least six months longer, but they said my heart was in too much danger to let it go on any longer. I was taking 40 mg of beta blockers three times a day and my resting heart rate was still around 90 bpm. You should have seen my group sizes.  I was still taking thyroid suppressing meds for about five months after receiving the radiation treatment. Apparently I've been an "abnormal" case, which really hasn't made me happy though my doctors have been intrigued.
I never had to be in full isolation, but I had to sleep alone for about a week and stay about 5 feet away from adults and get no where near children. Other than the annoyances of washing all bedding every day and using disposable utensils, it was pretty easy and I didn't feel any effects from the radiation. No geiger counters were used. 
Your friend's experience sounds horrible. I'm glad to hear she's doing well on synthroid. My mother takes synthroid, and it works well for her. I'm hoping that means it will work for me. I'm on 25 mcg right now and am scheduled for a blood test in October. I was hoping to move across the country in October, but I'm worried I won't be feeling up to it in time. I've already pushed off the move longer than I want, but I don't want to go to a new area and a new job and then find I'm falling on my face because my thyroid levels are still off. It sounds like you're monitoring the medication's effectiveness and dosage by how tired you feel and how frequently you crash? Do other symptoms also remain or appear and then disappear, like feeling cold or muscle aches? Though I must say, with these 90+ degree days and no a/c, I'm not hating the feeling cold aspects of hypothyroidism. This is all great info. Thanks for sharing so much! |
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LTL, you still have partial function of your thyroid, so Synthroid should augment your body's production of hormones without problems.
I can't speak for others, but my body temp regulator seems to be getting back to normal two years after RAI therapy, and three months after changing dosage of a new med that I think has my hormone levels as close to good as they are going to get. My thyroid was totally ablated with I-131 so I have no active thyroid tissue at all. I have been quite ill for 4 years and am just getting back on an even keel. Sore muscles bother me a lot, but I am stuck on a fence. I am not supposed to do any physical activity, but I need to maintain the best physical shape possible by not sitting on my butt all day long. The only way to keep from losing more muscles is to exercise, which makes me ill. I "porpoise", as was mentioned (never heard that term). I am most productive in the evening, to the point of working myself into a dither that leads to insomnia if my wife doesn't nag me to slow down. I'm so-so in the mornings and a nap every afternoon is pretty much mandatory. Hopefully that will straighten out as time goes on and I will get back to "normal". I probably still have low Testosterone, but at this point neither the doctor nor I want to dick with that. Since you still have thyroid function, you should get tested every three months by a GP or whatever and see an Endo for at least a few years on a yearly basis. Your gland has been naughty, and the doctor killed part of it. The gland may chug along for the rest of your life with little change or it may gradually deteriorate in function. You may find a low dosage that supplements your thyroid works just fine, or you may go down a road of dosage changes every 6-9 months with bouts of thyroiditis sporadically. It just depends. I know a guy who had surgery to control his Grave's Disease. He never needed any thyroid medication. He got lucky, his doctor got lucky, his remaining thyroid functioned well enough to produce the hormones he needed. It just depends. Same with the symptoms. Depends on how long you were sick and how much your body was damaged. My GP has told me again and again that length of illness and severity determines the length of recovery and abatement of symptoms. I'm to the point where I don't need a flannel shirt in the Summer and a coat on in the house in the Winter. I can garden. I can't mow the lawn. Nothing desireable about thyroid disease is quick. It takes six weeks for a dosage change to take full affect. Symptoms linger. Stress affects your immune system and increases antibody count, which is not good. LET'S PARTY!!!!! |
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I really, really hope this is the case. My job, my relationship, every aspect of my life has been affected by this and I'm so tired of it all.
LTL, you still have partial function of your thyroid, so Synthroid should augment your body's production of hormones without problems. I can't speak for others, but my body temp regulator seems to be getting back to normal two years after RAI therapy, and three months after changing dosage of a new med that I think has my hormone levels as close to good as they are going to get.
Thanks for sharing your experiences. It really is very helpful to hear from other people what their experience has been like. My mother had a relatively "easy" time of it (or she's looking back with very rose-colored glasses), so sometimes it feels like I'm either losing my mind of behaving like a drama queen when I feel so terrible. As much as I don't want other people to have a hard time, it is nice at least to know that this really does impact a person's life drastically.
My thyroid was totally ablated with I-131 so I have no active thyroid tissue at all. I have been quite ill for 4 years and am just getting back on an even keel. I "porpoise", as was mentioned (never heard that term). I am most productive in the evening, to the point of working myself into a dither that leads to insomnia if my wife doesn't nag me to slow down. I'm so-so in the mornings and a nap every afternoon is pretty much mandatory. Hopefully that will straighten out as time goes on and I will get back to "normal". I probably still have low Testosterone, but at this point neither the doctor nor I want to dick with that. Sore muscles bother me a lot, but I am stuck on a fence. I am not supposed to do any physical activity, but I need to maintain the best physical shape possible by not sitting on my butt all day long. The only way to keep from losing more muscles is to exercise, which makes me ill. Since you still have thyroid function, you should get tested every three months by a GP or whatever and see an Endo for at least a few years on a yearly basis. Your gland has been naughty, and the doctor killed part of it. The gland may chug along for the rest of your life with little change or it may gradually deteriorate in function. You may find a low dosage that supplements your thyroid works just fine, or you may go down a road of dosage changes every 6-9 months with bouts of thyroiditis sporadically. It just depends. I know a guy who had surgery to control his Grave's Disease. He never needed any thyroid medication. He got lucky, his doctor got lucky, his remaining thyroid functioned well enough to produce the hormones he needed. It just depends. Same with the symptoms. Depends on how long you were sick and how much your body was damaged. My GP has told me again and again that length of illness and severity determines the length of recovery and abatement of symptoms. I'm to the point where I don't need a flannel shirt in the Summer and a coat on in the house in the Winter. I can garden. I can't mow the lawn. Nothing desireable about thyroid disease is quick. It takes six weeks for a dosage change to take full affect. Symptoms linger. Stress affects your immune system and increases antibody count, which is not good. LET'S PARTY!!!!! So meaning, planning a move now across the country and looking for a new job probably isn't going to help things any. Thanks for the information about how long it takes for a dosage change to take effect. That's the kind of information I keep looking for, by my doctors prefer to be vague. I understand why, and that they can't make any guarantees, but it's frustrating not to be able to plan ahead in any meaningful way.
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AR-10:
"scratching the surface" is really all we can do here. I have no plan to type for hours on the subject, and we would need to. The OP was posting symptoms & a different case from LTL. Hard to reply to both without a lot of text... It appear that you had ablation (without surgery?) as well, but have no remaining thyroid tissue. I can tell you from experience that letting the low testosterone slide until you regulate the thyroid is a good plan. Androgel + synthroid + Norvasc is a ride you never want to take. Porpise is the best description I have for it. Like a badly trimmed aircraft. LTL: You are just starting on this road, and as AR-10 pointed out it does take some time. I never had to wait more than a couple of weeks to see a change from a dose increase or decrease. Symptoms linger, but other drugs can be part of that too. You mentioned beta blockers. I would find something else to tame the hypertension. When my doctor switched me off of them to Micardis, things smoothed out quite a bit over the next couple of weeks. It is nice to have my short term memory back too. Exercise. I work, and much of what I do is physical. It was hard sometimes, especially in the first year or so. Get all the exercise you can, even if it is just walking or curling a roll of paper towels. Watch the heartrate, but don't quit alltogether. Everyone is different. That is the reason your doctor is vague. I know plenty of people with thyroid issues, and no two are alike. Keep forging ahead, it does get better. At least you don't have to fight the testosterone angle at the same time. Lem |
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Lem,
You are correct. We could type for hours. Truth2882 got lost in the shuffle in my second post. I was throwing out some general information, but the second post was speaking to LTL more specifically. You have posted a lot of good info, moreso than I, and I appreciate your thoughts on low testosterone. Frankly, my GP and I both have it in the back of our minds, but it will wait for another day. The water is muddy enough right now. I had RAI ablation, which turned out well for me. The goal was to destroy the thyroid, and my Endo did a good job of it. Every person who has thyroid problems is different. My aunt never saw an Endo in her whole life, and her dosage changed little as she aged. I know many people in town who have Hashimoto's (hypothyroidism) who are taking replacement hormones or who have gone through RAI and have gotten on with their lives like it was just a speed bump. I, on the other hand, caught the suck. By the time they had my thyroid under control I had lost 25 pounds (down to 119) and suffered heart damage from being hyper for a long period. Was on Beta blockers and thyroid suppression medication as well as hormone replacement. I am just getting over a bout of thyroiditis, which I find laughable since I don't have a thyroid. I guess it was the only diagnosis my GP could put down to explain the stumble I had. The truth is my antibodies are sky high and it wreaks havoc on my body regardless of my hormone level. So my heart acted up and I had insomnia for a few weeks. You probably know that there is no treatment for antibodies, other than rest. I was just throwing out random factoids. Like the fact that it takes 6 weeks for a dosage change to take full effect. I notice symptom changes after a week or so, but testing before six weeks does not tell the doctor anything. Some doctors do not test often enough. Some doctors run the wrong tests. Most doctors refuse to discuss Armour or anything other than a Synthroid like product. Most doctors will prescribe a generic Synthroid. Generics have their place, but not when you are treating a thyroid patient. When you are trying to lower the TSH by one point, using a generic that can vary in strength from manufacturer to manufacturer or batch to batch is a poor way to fine-tune a dose. What rubs me raw is the OP's complaint is so common. When my first GP diagnosed me with a "slow thyroid", I didn't ask any questions except "why do I have to get my blood checked every 3 months?", and he didn't offer any advice or information except "take this pill". I thought that would be the end of it. Take a pill, get back to normal. He didn't tell me about antibodies or thyroid infections or jack diddly, and I didn't bother to ask. I didn't know there is a large spread in all thyroid blood tests, and a sweet spot that you want to hit, but most doctors are unaware of. "within normal range" is a big crock of doody. Nine out of ten doctors look to see if the test is flagged high or low and if it's normal you are good to go...home with a TSH of 4.2 and undertreated for a hormone deficiency. As someone up there pointed out, the new TSH upper normal limit is supposed to be 3.0, but most labs still use an upper limit of 5.0. I mentioned earlier that you have to take an active part in your treatment. I want a TSH of 1.0 or so, and my GP knows if it is higher I will be bugging him for an adjustment. If you've had thyroid cancer, which I have not, the doctor wants to keep your TSH closer to 0.1 for cancer suppression. Different requirements for different situations. But when I first started taking a generic pill for a "slow thyroid", I was too ignorant to know I was uninformed. I went with the flow and I honestly don't know what my test results were under my first doctor's care because I was used to the idea that you go to the doctor, he fixes you, end of story. Why bother finding out what all those tests are as long as he knows? With thyroid disease you have to ask for test results, be informed and ready to find a better doctor if the one you have thinks a high TSH is good enough. Too many people are walking around under-treated. Anyway, I'm not trying to play "smarter than you". I think you gave a lot of good info. I just get frustrated about how little information some doctors give out, and how many people walk around under-treated. |
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LTL: You are just starting on this road, and as AR-10 pointed out it does take some time. I never had to wait more than a couple of weeks to see a change from a dose increase or decrease. Symptoms linger, but other drugs can be part of that too. You mentioned beta blockers. I would find something else to tame the hypertension. When my doctor switched me off of them to Micardis, things smoothed out quite a bit over the next couple of weeks. It is nice to have my short term memory back too. Exercise. I work, and much of what I do is physical. It was hard sometimes, especially in the first year or so. Get all the exercise you can, even if it is just walking or curling a roll of paper towels. Watch the heartrate, but don't quit alltogether. Everyone is different. That is the reason your doctor is vague. I know plenty of people with thyroid issues, and no two are alike. Keep forging ahead, it does get better. At least you don't have to fight the testosterone angle at the same time. Lem I am just starting down the hypo road, but I've been on the hyper road for two years of treatment now. I was hoping the ride was about to end. I don't need to be on beta blockers anymore. Now that I'm no longer hyperthyroid, my heart rate is back to normal. You had short term memory problems with them? The only bad side effect I had was really vivid nightmares. I kept waking up thinking there were bugs swarming all over me. I was told to stop all exercise, but now I can start again since I'm no longer hyper. I'm glad to hear you say to do anything and that you're able to work and exercise. It's good motivation. Haha, no luckily I don't have to worry about testosterone. I didn't even know it was affected. |
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Hm, looking at my bottle, I now see I have a generic version of synthroid, levothyroxine. Is there any reason my doctor would prescribe a generic? I didn't think synthroid was all that expensive.
Some doctors do not test often enough. Some doctors run the wrong tests. Most doctors refuse to discuss Armour or anything other than a Synthroid like product. Most doctors will prescribe a generic Synthroid. Generics have their place, but not when you are treating a thyroid patient. When you are trying to lower the TSH by one point, using a generic that can vary in strength from manufacturer to manufacturer or batch to batch is a poor way to fine-tune a dose. Quoted:
What rubs me raw is the OP's complaint is so common. When my first GP diagnosed me with a "slow thyroid", I didn't ask any questions except "why do I have to get my blood checked every 3 months?", and he didn't offer any advice or information except "take this pill". I thought that would be the end of it. Take a pill, get back to normal. He didn't tell me about antibodies or thyroid infections or jack diddly, and I didn't bother to ask. I didn't know there is a large spread in all thyroid blood tests, and a sweet spot that you want to hit, but most doctors are unaware of. "within normal range" is a big crock of doody. Nine out of ten doctors look to see if the test is flagged high or low and if it's normal you are good to go...home with a TSH of 4.2 and undertreated for a hormone deficiency. As someone up there pointed out, the new TSH upper normal limit is supposed to be 3.0, but most labs still use an upper limit of 5.0. I mentioned earlier that you have to take an active part in your treatment. I want a TSH of 1.0 or so, and my GP knows if it is higher I will be bugging him for an adjustment. If you've had thyroid cancer, which I have not, the doctor wants to keep your TSH closer to 0.1 for cancer suppression. Different requirements for different situations. But when I first started taking a generic pill for a "slow thyroid", I was too ignorant to know I was uninformed. I went with the flow and I honestly don't know what my test results were under my first doctor's care because I was used to the idea that you go to the doctor, he fixes you, end of story. Why bother finding out what all those tests are as long as he knows? With thyroid disease you have to ask for test results, be informed and ready to find a better doctor if the one you have thinks a high TSH is good enough. Too many people are walking around under-treated. Anyway, I'm not trying to play "smarter than you". I think you gave a lot of good info. I just get frustrated about how little information some doctors give out, and how many people walk around under-treated. It is amazing how common the story of "My doctor didn't do the right thing and kept me in the dark" is with thyroid disease. I went through three doctors before I finally found one worth while. One couldn't keep straight hypo vs. hyper symptoms, one was the allergy experience, and another was using outdated tests like total T4, no T3, and the old TSH range. None except my final one even looked at the antibodies. I had to get all my test results, ask my GP to run the tests I requested and then brought that information to a new doctor. So now I know the tests and ranges for hyper, but I'm still in the dark for hypo. Any advice on what tests they should be running and what the results should look like? I'm familiar with the new TSH range at least. Sorry to hijack the OP's thread. I hope you don't mind, OP. 
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I don't have drug coverage with my health insurance, although I have always paid for a good personal health insurance policy. Doctors see a lot of patients and often perscribe generics because they are cheaper and good enough.
I take Alprazolam, a generic Xanax because it's good enough. It's for the anxiety the OP was asking about. When I had to take stomach meds it was generic because it was good enough. My doctor knows which drugs are good enough. He won't perscribe a generic thyroid med. My first doctor did, though. To his credit, he made me test every three months, a TSH and a Free T4 before he would refill my scrip. But as I said, he wasn't exactly a fount of advice or knowledge. Take your thyroid med in a consistant fashion every day. I take it with 16 ounces of water and wait an hour to eat. You can take it every day with a beer or three sugar donuts if you want to, as long as you do it the same way every day. Most people take the pill with a glass of water and wait a half hour to eat. Just do it the same way every day. Armour people have a different routine, but consistancy is still important. What tests to have run and what results to look for; A TSH and a Free T4 every three months until you find a dose that is correct. Every six months for maintenance to check thyroid function. A TSH between 0.8 and 2.5, depending on you personally. Everybody is different. A Free T4 in the upper two thirds of the range. You have to draw blood either before you take your morning dose, or after lunch. Your Free T4 will be elevated for about 4 hours after you take your thyroid med. Thyroid antibodies; If you don't have any thyroid antibodies you don't have auto-immune thyroid disease. There are other causes, but auto-immune is the most common. Antibody tests are not run very often. Usually the doctor will check for two or three to make a diagnosis, and after that they are only checked if something strange is going on. TPOab is the most common, and is found in both Hashimoto's and Grave's patients. 30 or less is "normal". Three hundred is common. 1,000 and above is damaging and undesireable. 1,200 and above is potentially dangerous. TGab is less common and is found in Hashimoto's patients, usually along with TPOab. TRab is indicative of Grave's. It mimics TSH, hogs all the receptors in the thyroid that tell it to produce hormones, and the thyroid mimics a car with the gas pedal stuck down. It produces hormones even though your TSH drops very low telling the thyroid to knock it off. A person with Grave's can also have TPOab. Remember these are antibodies. Their job is to fuck up the bad guys. And your thyroid is the bad guy. TPOab attack the thyroid cells directly, eating it and creating pockets of infection or useless tissue. It can cause thyroiditis, which is an inflamed angry thyroid that won't put out shit one day, and dump on you three times the next day just to let you know it has the flu. This leads to slow degeneration of function with periods of inability to control hormone levels because of infection, so dosage changes are frequent and never just right. So you want your antibodies to be low. On the down low mellow and chilling. When you stir up your immune system, sometimes it triggers it to make more antibodies. I can't take Melatonin because it will strengthen my immune system and agravate the thyroid antibodies. Physical and emotional stress can trigger the same response. Right now my TPOab is almost 1,000, and my thyroid took a hike two years ago. I thought I was free of the antibody curse but my GP says they will still put me down, and I was having heart trouble earlier this month. Doctors can't treat antibodies without nuking the immune system. There is no medical bandaid. It's a lifestyle thing to lower them that I haven't figured out yet. My doctor keeps telling me to chill out and rest. Edit for some typos, a few more words, and the disclaimer that I am not a doctor, blah , blah, but I do still have insomnia. |
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AR-10:
No problem man, I don't see this as a dick waving contest. The biggest problem with thyroid issues is a LACK of information, yours is very welcome. Boondock has some interesting input. He is about half my age, and cancer free - so we have yet another data point. I can match you on "the suck" . I have primary hypertension. Had it before the thyroid isses. The cancer was a surprise, and a sneaky one. My thyroid was still cranking out enough to keep me going, but had a big tumor. An odd one, the biopsies kept coming back "inconclusive". The tumor was actually spotted by a cardiologist I shoot with - "what the hell is that in your neck?!" one day at the range. I went through three surgeries. Conventional wisdom was to remove the lump & one lobe. The fast slide on the table came back "inconclusive" as well. My surgeon did not think that was an answer, and sent the preserved mass to Walter Reed. It took them six weeks, to call him and tell him that it was cancer. An odd one at that. Discussed in lecture. (always a bad sign). They went back in, and took the other lobe. Three months later, my TSH was 4.5 WTF? AN I-131 scan found an ectopic thyroid. A third surgery got enough tissue out. My TSH hit double digits in a week. I spent several weeks fighting with the insurance company over ablation. Once the dust settled, I had been more than a year without most (or all) of my thyroid, with no hormone support. I put on 65 pounds. Some days I simply moved from the bed to the couch. After ablation, the doctor said thet would put me on a "big dose" (of synthroid) to get things back up to speed. Dr Dumbass must have been asleep when they took out three thyroid lobes. 125mcg of synthroid. Six weeks later my TSH was 15, and I was half asleep all the time. He went to 150. I found the Endo that straightened this out by dumb luck. A cashier in a resturant looked at the scar on my neck, and asked who my Dr was. I told her, and she turned pale. She yanked her purse from below the counter, and fished out a business card. Turned out the guy did 20 years in the Israeli Army as a doctor. He seemed to know a lot about thyroid cancer. He has the bedside manner of a badger on crank. He asked me what I had been taking - "and I don't mean what you were perscribed!" I told him I kept a journal. He was impressed - and pissed I did not have a copy for him. He added Cytomel, and jacked up the doseage. After 12 weeks he said "Let's try Armour". Yes, too many doctors don't treat thyroid issues as they should. Lucky for us, we have managed to find the info & doctors anyway. LTL: Staying active is the best thing to do. It also helps take the edge off if you get a little too much hormone in the morning. Do something with yourself, even if it is just holding a pillow at arm's length for 5 minutes. Walk around the block you live on. Just don't give up. about a million years ago as an apprentice I earned the nickname "the ant". The only way you stop an ant from working is to kill him. They tried, but failed. I am still working. Tests. There are lots of them. Because of the cancer, I do more than most: Annual tests Free T3 / Free T4 TSH ultra sensitive Thyroglobulin Anti-Thyroglobulin I-131 full body scan with thyrogen suppresion. Shopping for a doctor until you find one that listens & communicates is just what you do when you have thyroid issues. Stay active, and don't give up. Keep a journal - dates, doses, how you feel, what time you crashed, when you went to sleep... and how much you cried. Each day. It really helps to sort things out, and you can go back six months to get a feel for subtle changes. Lem |
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You may have beat me on "the suck", Lem.
Cancer and three surgeries involves a whole lot of suck. Just waiting for the yearly "cancer hunt" would suck. Quoted:
Shopping for a doctor until you find one that listens & communicates is just what you do when you have thyroid issues. Stay active, and don't give up. Keep a journal - dates, doses, how you feel, what time you crashed, when you went to sleep... and how much you cried. Each day. It really helps to sort things out, and you can go back six months to get a feel for subtle changes. Lem This is excellent advice. Combined with a folder of bloodwork results, it is a powerful tool. No doctor has the time to read through a year's worth of results and chart them in his head before he walks in the exam room. He also has no idea how your week went unless you tell him all the boring details. Things get forgotten. A journal is a wonderful tool. Also, doctors are just people. You definitely have to shop until you find one that clicks with you. Some are happy to listen to you and work with you as a team. Others want to get you in and out and just shut up and follow their instructions. Specialists can be the most opinionated and recalcitrant of the bunch. They're just people too. I met one who was a genius, one who should be restricted to treating Diabetes only, and settled for #3, a lady with 25 years under her belt that thinks her opinion matters more than my thoughts and will not treat a patient who takes Armour. I used her for the heavy lifting and then told my GP that he was now in charge. He understands my illness better than the Endo does anyway. He has me on a compounded thyroid product similar to Armour. He had to take all of his patients that took Armour off of that drug and find a substitute for them. I won't get into details as you are taking what works for you, but he is pissed at Forest Pharmacuedicals right at the moment. So the compounding pharmacist here in town ordered the ingredients to make Armour for me, although it is expensive as hell. I've appreciated your input in this thread. You post with a message of hope while I post extreme examples of the crap that can happen as a Hashimoto's patient spirals toward life with a thyroid that slowly turns to mush. You have given me a bit of hope that my GP has been trying to talk me out of for a few years. I was harping on antibodies up there. I have a reason. I was diagnosed with Hashimoto's, treated for a few years with Levothyroxine, and then sprouted TRab antibodies and the diagnosis changed to Hashimoto's/Graves. I went hyper and my Levothyroxine was like throwing gas on a fire. Hashimoto's Thyrotoxicosis is what it is called, but the bottom line is...whatever antibody is dominant will control the direction of the disease, with the exception of thyroid cancer. There was no controlling the disease or my medication other than hormone suppression and hormone replacement. In the end killing the damn thyroid was the easiest way to address the problem. The suppression med is not something you can take long-term. Anyway, having a dialogue with you has been refreshing. I hope your yearly tests come back clean for the next few decades and the cancer part of your illness is behind you. |
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AR-10:
Likewise on the dialog. Sounds like you got me beat on "the suck". Mine is behind me. I found the journal to be most useful, and kept one from the first consult foreward. I had not pulled any of the early ones for several years, but this thread made me look back a bit. At one point I was taking 600mcg of synthroid, and 15mcg of Cytomel. I was taking the synthroid in three 200mcg doses spread across the day, and using the previous week's crash points (from the journal) with a little "holdover" to pick off the times to take the second & third dose. It actually worked in a sloppy sort of way. My endo was impressed (and pissed), but my TSH was still 2.7 Hashimoto's / Graves is an ugly thing. I think I would rather just do the surgery, and take hormones. Your struggles with the antibody issues are awful. My friend that finally had hers removed had no firm diagnosis. They could not pin down the swings, and she would not take the suppression drugs - she works for GSK in research and loves he liver too much. She had lived with the "up" part of the porpoise for years, and managed the "down" with synthroid as the docs tried to control things. They suspected the pituitary gland, and scanned for a tumor. Came up dry. The cycles were getting shorter, and with more amplitude. They talked to her about ablation, and she just said "yank it out, it is broken" - then she called me in tears. That was two years ago. Now she is fine, and manages her own TSH with synthroid. An I-131 scan shows enough thyroid tissue left around the parathyroids to make her body think it still has a thyroid. She has stable weight now, for the first time in 20 years. Only one set of clothes. There is always hope. Keep moving, working & playing. The issues with Armor & Forest are nothing - or everything depending on who you talk to. All I know is my own data points. I am still taking the same 4gr dose each morning, my TSH is stable, the Free T3/T4 numbers have not moved. I just got home from a 1k jog, and feel fine. Depression issues are part of the game, especially with low testosterone. Excersise helps with that. Don't let your GP steal your hope. Next time you see him, give him the finger for me. Once my Endo asked me how I was doing, I told him "better than you, I was on time today". LTL: You gave up a job you liked, and that does not help the mood, or the recovery process. I had trouble finding work after the third surgery, but I did find ways to keep busy. I actually volunteered at the local Zoo for a bit rather than sit at home. Lem |
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I have my Drs appt tomorrow.
WHAT QUESTIONS SHOULD I ASK? My TSH is 5.15 (High is supposedly 4.5) My free T4 is 1.1 Two of my nephews have Hashimotos. My mom is hypothyroid, and has never found a doctor that can get her dose of synthroid right. (Also, she has never found a Dr that will listen to her when she says she is EXHAUSTED.) I had my thyroid checked at the request of a dermatologist. I am losing pigment on my hands, and he thought the thyroid might be a cause. I don't know if it is, but the tests came back (As you can see above.). |
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Mugzilla,
What questions to ask... Ask if antibody tests were run. There are three, but unless your TSH is really low, a TRab test is not indicated. Hashimoto's Disease is the most common reason for "slow thyroid" or low thyroid function. It is an autoimmune disease caused when your body starts making antibodies that interfere with thyroid function. A diagnosis of Hashimoto's is confirmed by low thyroid function and the presence of thyroid antibodies, either TPOab (Thyroid Peroxidase antibodies), the most common, or TGab (Thyroglobulin antibodies). So, ask if these antibody tests were run, and what the results are. If you have no antibodies then you need to look for an iodine deficiency or look at pituitary function. Your pituitary gland produces TSH (thyroid stimulating hormone) to instruct the thyroid how much hormones to release and when. If you have antibodies, the quantity of antibodies is an indicator of how fast the disease will progress. It is something you want to ask about. Since your TSH is a little high and your Free T4 is a little low, it looks like you may need hormone replacement. Your doctor may argue the point, because your Free T4 is not that bad, but your TSH should be in the lower half of the test range. The Free T4 result should be in the upper half of the test range, but most doctors run with the TSH result. A Free T3 test is what REALLY tells the doctor how your hormone levels are, but it is very seldom run. It costs more, it takes a few weeks to get the test results most of the time, and doctors usually use a TSH test and a Free T4 test to "see" (guess) what your Free T3 level is. Most of the time this method works fine. Unless your body is not converting T4 to T3 properly, the TSH and Free T4 test will indicate the Free T3 level. Your body uses T3. Every cell in your body needs T3 to function. T4 is converted to T3 as the body needs it. Your thyroid produces T4 and T3, as well as a few other hormones. Mostly T4. The body then takes the hormones the thyroid releases and binds the majority of them, making them "not free", or unavailable. The "free" T4 circulates and is converted to T3 as the body needs it. Some of the T3 is "free", and most is bound and ultimately broken down to T1 and discarded. So...ask about antibody tests. Ask if an ultrasound would be prudent. It may or may not be money well spent. It would show the exact size of the thyroid (which may become a baseline reading you look back to years from now), and show any pockets of infection or unusual growth or swelling. If you are put on replacement hormone, avoid generic Levothyroxine. I know a LOT of people use generic drugs, including me. Generic levothyroxine is not the best way to treat your thyroid, although many doctors will start there to save you money. The dosage level of generics can vary +/- 10%, while name brand drugs are held to a standard of +/- 5%. The exact formula can also vary from manufacturer to manufacturer regarding fillers and such. The Levothyroxine your pharmacist has on the shelf this month may come from a different manufacturer than the Levothyroxine the same store had two months ago. Use a name brand drug and remove this wild card from the equation if you start trying to supplement and balance your hormones. Hope this helps. ETA; Have your vitamin D level checked. |
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Quoted:
Yes. Graves' has destroyed my life for the past two years. I'm hoping things are finally starting to get back on track now, but only time will tell. It sounds like you're still too hypothyroid? Why doesn't your doctor increase your medication?[/quote] Yep, sounds like a TSH is in order |