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in reply to: Normal labs but feeling a little hyper? #1064452
I certainly empathize with someone having those hyper feelings, and I have usually worked closely with my endo when I’ve been experiencing them. Working closely? That means that I wait whatever reasonably amount of time the doctor suggests (six or eight weeks at the earliest) before going in and having more blood work done. Recently, my endo increased my dose of replacement hormone "slightly" and when the first blood test, after six weeks, came back, it was "normal." I persuaded her to lower the dose a tad due to hyper symtpoms, and the next blood test came back showing levels still normal, but more towards hyper than the first one — so I had been correct that time: I WAS most likely hyper after the first dose change, but the blood test occurred too soon for the TSH to have moved fully down. In other words, trust your gut until you find that it is leading you astray. it might lead you astray because there are other things that can cause insomnia, etc., but until that time, go in at reasonable intervals to be double-checked.
in reply to: One year check-up, and some questions #1064438The troublesome aspect of your post is that you say you are worse than when you were diagnosed. This is NOT good. So, for questions, you need to find out why. What you should be expecting, especially after a year of treatment, is that you would be feeling better, not worse; stronger, not weaker. So, you need to ask your doctor why the treatment is not doing what you should expect, and whether another treatment option would help you more. We get well again, provided that we get diagnosed before the hyperthyroidism does too much damage. Letting it drag out is not good for your long term health options.
in reply to: Late teen with hyperthyroidgraves #1064536There’s no need to fret about goitrogenic foods. This is an idea you’ll find occasionally, in various places out in the internet, but research will show that in order for a specific goitrogenic food to impact in any significant way , you would have to eat truck loads of it. The foods that are on the goitrogenic list are healthy foods full of nutrition. They can be eaten in normal amounts in a balanced diet without a problem. Avoiding them is not necessary.
in reply to: ????????????????? so many questions. #1064514Hi, Cindy, and welcome to our board.
Just a word of encouragement: there was an Olympic athlete about ten or twelve years ago, who was in the news as having developed Graves. As Kimberly mentioned in her exercise comment, it was necessary for her to stop her exercise until her thyroid hormone levels were back under control, but then she was able to be back competing in the next Olympics. So, giving up cross country, or track, may be a temporary necessity for you, but you should look forward to being able to go back to it again once you are back to health.
As to whether to tell people or not — it’s a personal call. There’s nothing to be ashamed of, obviously, and you are most definitely ill right now. Your teachers may need to have that information — you and your parents will have to decide. I was a teacher, and it helped me to evaluate a student’s needs and performance if I knew that there was something like this going on. I also think it would add unnecessary stress for you to try to hide being ill from your best friends. The world doesn’t need to know, but a best friend? Yes, I think a best friend would need to know.
Just my take on things. I hope you are feeling better soon.
in reply to: Late teen with hyperthyroidgraves #1064529Hyperthyroid is not equivalent with hyperactive. When we have too much thyroid hormone it wears us out. Yes, our brains are racing (hence, not being able to sleep); our hearts are racing, etc. But we do not have lots of energy. Maybe at very minor levels of too much thyroid hormone that might be the case — temporarily. But if you are hyperthyroid for too long, it wears you out. It is something that confuses many people.
I would like to emphasize a point that Kimberly made, as well. Please check with your doctor about any supplement that you add to things. There are supplements, and there are supplements. Some are downright dangerous for you, even if you feel a tad better when you take them.
in reply to: Late teen with hyperthyroidgraves #1064522Hi, and welcome to our board.
We do get well again. That’s the thought to hold on to right now. I understand how hard it must be right now for you to feel as rotten as you do — or have been feeling.
Getting well again is a process. The first, vital step is regaining control over your thyroid hormone levels. Your doctor put you on a drug which interferes with the chemical process by which thyroid cells take iodine and make hormone. You have to be taking just the right amount of it, and that can take some time with dose adjustments. But, in many patients, it can control the thyroid hormone levels in the "normal" zone. If the drug doesn’t work for whatever reason, or isn’t something you tolerate well, the thyroid can be removed, and normal levels of hormone can be reached by taking a replacement hormone pill once a day.
Once your thyroid levels are controlled in the normal zone, your body will have time to heal from being hyperthyroid. That can take a few weeks or months, but you should see progress back to what you remember normal being.
We DO get well again.
I hope you are feeling better soon.in reply to: Checking In- 9 months Post-RAI #1064545It’s great to hear from you again, Enough3. I’m glad you’re doing well. And others need to hear those words of encouragement, as well.
Take care,
in reply to: newbie just been diagnosed #1064540Hi, sooty, and welcome to our board.
If you have had a low TSH for six years, out-of-range low, then your fatigue could well be due to excess levels of thyroid hormone. It wipes us out to have too much thyroid hormone.
We do get healthy again: the treatments work to bring our thyroid levels down to normal. Once they are controlled at normal, our bodies have a chance to heal from the damage done while we were hyperthyroid. It can take some time, and we do often need to work with the process, but you should expect to feel better as the treatment works and your body heals.
The one good thing about autoimmune disease is that the antibodies are selective: they attack one specific type of tissue or combination of cells; they do NOT simply run amok creating havoc everywhere. Having antibodies against the thyroid, as we do with Graves, messes up thyroid function. Period. And, obviously, having messed up thyroid function makes us very, very ill while it is going on. But once we have the thyroid back under control, we get healthy again. And, when we have our thyroid removed, the antibodies are out of work completely.
When you go online and read boards like this one, you are reading about people who are newly diagnosed, in early treatment, or, sometimes, have the eye disease that is associated with Graves. But you do NOT typically see folks who have gotten well, and stopped coming onto these boards. There have been HUNDREDS, over the years, who have come here ill, and eventually disappeared. Occasionally someone comes back to wish others encouragement, but they start living their lives again and that usually means they don’t spend lots of time on the Board. All you need to do to confirm that is go back into this board’s archives. You will see the same sad story, over and over, but the names of the people posting will be different.
Here at NGDF, there are facilitators — like me, Kimberly, and Ski — who are healthy again. We try to give you a bit of perspective, which is what a lot of boards lack.
As to whether or not you can get another autoimmune. Yes. Having one autoimmune means that we are slightly — emphasis on slightly — more likely than someone in the so-called "normal" population to turn up with another one. It is something you should look for, because odds are that it won’t happen.
in reply to: Early TED how did it feel? #1064569I think the "tired, dry" eyes are more a product of thyroid disease than TED, although I could be wrong. But a lot of us get photophobic and have to use artificial tears, even though our eyes do not protrude. The quality of our tears changes when we have thyroid disease.
Typically, as Shirley mentioned, if there is TED, we lose our ability to focus our eyes in some of our field of vision. There are three (if I remember correctly) pairs of muscles attached to each eye, which move the eyes to look at the world around us. In order to see properly, these six sets of muscles (two eyes, three pairs of muscles per) work together. As the muscles of the eyes thicken and stiffen (become fibrose), some work better than others (they do not all change in the same degree), so we’ll "see" double perhaps when looking in some directions. Or, we’ll have the sense that we cannot focus in some directions, while we can in others.
But depending upon your age, you might be — coincidentally — going through that stage of life, which hits around our 40th year, when our eyes naturally lose their ability to focus on close objects. EVERYBODY goes through this change. It’s why you see so many people "of a certain age" using reading glasses.
The bottom line is to be sure you are going to a good eye doc to figure out what is going on.
in reply to: Will this ever settle? #1064553That is a big dose of replacement.
As to why you might be having difficulty with your dose — I assume you’ve done all the things I’m going to mention, but if you have not, you need to consider making some changes, and then getting blood work done to see if it’s made a difference.
The most important aspect of taking replacement hormone (in my opinion) is to take it on an empty stomach, first thing in the morning, with plenty of water and then wait to eat anything for about an hour. The issue typically is getting the replacement hormone absorbed into the blood stream, and there are compounds in foods which can interfere. Iron for example, binds with thyroid hormone in the intestines, and makes for a molecule that is too large to be absorbed. There is lot of iron in breakfast foods, typically. Oatmeal, for instance. Breads are fortified with iron.
Vitamin and mineral supplements should wait for about FOUR HOURS after you’ve taken your replacement pill. The ingredients in these, too, can interfere with the absorption of your replacement hormone. I assume you are on vitamins fortified with iron for the baby — which is typical. Make sure you have them spaced away from your morning dose of replacement hormone.
Once the replacement is in the blood there’s little or no problem. But getting it absorbed is the issue.
Some medications can interfere with the replacement dose, as well. You could check with your pharmacist (chemist?) to double check that aspect of things.
If you have already been diligently following the rules above: Are you taking "generic" replacement, or are you on a brand? I don’t need to know, but if your levels are wobbling around in hypo-land, and you are on a generic, talk with your doctor about taking the brand to see if that is the problem.
Anyway, I hope one or more of these suggestions helps. I had a friend who was on a huge dose of replacement, like you are, and she got a new endo, who told her the same thing I’ve mentioned here. She was taking a whole handful of meds at the same time she took her replacement, and they totally interfered with her ability to absorb the synthroid product. Once she stopped taking the meds at the same time, her issues resolved. So it can make a difference.
in reply to: Endo dropped me :( #1064558It sounds like you might be better off without this endocrinologist. Perhaps this was a doctor that truly could not tolerate having anyone question him. While chest pains may not be associated with the drug, they are indeed associated with too much thyroid hormone. And, hives can be caused by a drug reaction — although sometimes they come without that type of issue, as well — it’s hard to determine. If you cannot find another endo within a reasonable distance, you can try an "internist," or even a GP. You need treatment. And, no, the "natural route" was a dreadful suggestion. I suspect you might have asked about it, and the doctor was engaging in sarcasm, but there is absolutely no "natural" way to control thyroid hormones once the antibodies run amok.
in reply to: HELP…Not understanding the Labs! #1064572Hi, Laurie:
It takes a doctor/scientist to interpret labs. You need to see if yours can take the time to discuss things with you — and it might help to take another family member, or friend, along with you. Sometimes we patients don’t remember everything that’s said, and another set of ears can be very helpful.
Some people have the antibodies for both Hashimoto’s Thyroiditis (hypothyroidism) and Graves (hyperthyroidism). While we cannot be both hyper and hypo at the same time, the mix of antibodies can put those people into hormone roller coaster Hell. There might be other medical conditions in which there is fluctuation too, if that is what is going on.
And, another point. My endo made a point of warning me, long ago, against getting blood tests too frequently. Her point was that if a blood test was done too close to a dose change of our meds, the results could produce the wrong interpretation of what was going on. Then, if you change the medication dose again, you could "overdo" things. This endo allows her patients to come in when they feel they need it, to have blood tests done. And the one time I didn’t take her advice, it looked like I was still hypothyryoid (I was on replacement hormone), and the replacement dose was raised. It became apparent very quickly that that higher dose was way, way too high. I mention this to you to tuck away in your thoughts. If you seem to be on a hormonal roller coaster, up and down, up and down, look at how frequently you are having labs done. It might be too quickly.
Shirley: You’re absolutely correct — there’s exercise and then there’s Exercise! I usually think in terms of the capital letter, bold-faced one when cautioning folks. But that goes back to my experience, too. I was power walking with friends most mornings and two months later found myself short of breath, and weak, and unable to even enjoy slow walks if there was any uphill grade. Another month later, and I couldn’t even tolerate a cardiac stress test (called by my GP because of palpitations). The cardiologist had to hold me — literally — on the treadmill because my legs quit on me. So, I guess it hits all of us in different ways. There’s no way I could have soldiered on as an RN while I was undiagnosed and hyperthyroid.
Where to start? Well, first off, if you have decided not to take the methimazole any longer, you MUST call the endo and inform him of it. Right away. It is sometimes possible to ride out the hives and itch by taking an antihistamine like benadryl, but I certainly do understand you not wanting to continue a drug that is causing you grief. The thing is, hyperthyroidism is not something you should allow to continue. You must get appropriate treatment. So, calling the endo and letting him know what is going on, and getting instructions for either the other antithyroid drug, or surgery or RAI, is the first good step.
If you go off the methimazole, I would not recommend that you trust the propanolol alone to protect your heart from heavy exercise. When your doctor made that comment you were on a drug that was blocking the production of some thyroid hormone, and that makes a difference. Hyperthyroidism causes multiple problems for our hearts, and heavy exercise can only aggravate them.
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