I am very confused. I have had a non existant TSH for about 5 months now. My T3 and T4 are normal. The last test I had about 6 weeks ago showed an elevated T3 but this time it was normal again. I have more symptoms of hypothyroidism instead of hyper. I have gained weight, not lost. I worked very hard to lose 170 lbs and now, I am 50lbs heavier than the 102 I was at. I know some of that is the inability to exercise 4 hours a day as I used to, but my doctor wants me to take Tapezol to slow down my metabolism which will make me gain more. I am so confused about all of this. What does all of this mean? My doctor does not talk to me much and just keeps wanting me to take the medication and I won't do it. I go back every 6 weeks for blood work. My TSH was fine in Feb of this year but then in April it started showing up as less than .01. Should I see another doctor? If I could just get some answers, I would be happy. Am I the only person that has no TSH but gains weight? Is there anyone out there that has gone through the same thing?
Please tell me what all of this means. Any information would be greatly appreciated.
T3 tends to fall later than T4 when developing thyroid failure, and may be even elevated in early hypothyroidism.
What were all your test after the April test? These might indicate more to what is going on, but hard to tell without knowing your actual TSH and both FTs, with Labs reference range.
As long as the level(s) are within and stays within Labs reference range there should be no concern. But with that said there could be some reasons for T-3 to act the way it does. For instance, T3 is a transient figure and can change throughout the day and test. Also, T3 falls during acute and chronic calorie restriction (dieting) and reverse T3 increases during acute and chronic calorie restriction, blocking thyroid effect and lowering metabolism.
There are no formulas for weight. Some hyper's will gain, some hypo's will lose. Its up to your genes which direction it will go. Most of us have weight issues, even people with no thyroid conditions.
If you can't get answers from your doctor, perhaps a change is warranted.
Thank you for your info. As I said, the actual TSH is less than .01 and the T3 6 weeks ago was 3.85 and this time it was 3.43, the T4 this time was 1.2. I guess I don't understand how the TSH could be low for so long and the other levels are remaining normal. And is this something to be concerned about? Also, at what level does the T3 usually make you start losing weight? I have a friend who was hyper and is now hypo because of the radiation treatment so that is why I am trying to understand as much as I can about this. I don't think that medicated is the answer yet until all levels are there. I do have the palpitations, hotter than ususal but not all of the time, and a few of the other symptoms and all my doctor can do is tell me I am gaining weight because I am eating too much. I find it hard to gain 7 pounds in 6 weeks withoug gorging myself every night, which I do not do.
Thanks again, I have read some of your comments and have been trying to make sense out of this and see what to expect. If the rapid weight loss starts, then I figured I would take the medication but don't need to slow it down yet.
Tapezol will bring your TSH into Labs reference range. Not treating hyperthyroidism can cause some irreversable health damage.
It wastes muscle and this is some of the weight loss people experience. And it is not good weight loss. Losing muscle lowers metabolism so that we cannot eat as much without gaining weight.
Excess thyroid hormone interferes with the "electrical" system that keeps the heart beating at the proper rhythm. Thus, excess thyroid hormone can cause dangerous heart arrhythmias, in addition to weakening heart muscle.
Excess levels of thyroid hormone cause us to lose bone. It stimulates the bone cells which remove bone, but does not stimulate the cells which build bone. So the result is for us to develop osteoporosis earlier than people who have not been hyperthyroid.
Allowing hyperthyroidism to go on too long increases the risks of heart failure, strokes, and other problems.
There are safer ways to lose weight than by deliberately allowing ourselves to remain hyperthyroid.
They said at this point, it really is not a threat until it becomes full blown hyperthyroidism. If I start experiencing unexplained weight loss then I can start the medication knowing that it is in fact a case of hyperthyroidism and nothing else. Trust me, I would never jeopardize my health to lose weight. I just don't want to start a medication when the suggestion is "Let's SEE if this works". My doctor is not even sure this is the right measure but it is where she wants to start. She told me I could hold off on the medication for a few months while we keep checking the levels. Again, I do appreciate all of your information and concern. Have you had this condition or were you hypo?
I am treated Hyper/Graves'. Yes I had hyperthyrdoism.
I would go to another doctor, preferably an Endo. who has and works with many thyroid patients each year. Your TSH 0f 0.01 is at suppressed levels and if it repeats the same with the next test in 6 weeks after this test, you are considered hyperthyroid. The Ts don't have to be out to be hyperthyroid (or hypo). The Ts relate to other possible thyroid issues such as autoimmune thyroid, in which your Ts do not relate to. However, your TSH does related to hyperthyroidism!
Before there was treatment for thyroid 50% of patients died of the disease. I know of a women who did die because she refused treatment and know of others who came very close and ended up in the ER.
This is my personal opinion and experience from 11 plus years of reading and researching thyroid diseases. However, its your body, your health. No one can tell you what to do if you don't want to do it! Can't lead a horse to water and make him drink. However, you did come to this forum for information.
Be kind to yourself and your health. You only have one life and its a very short. It would be nice to live it as healthy and happy as possible.
When testing for thyroid problems, whether hyper or hypo you need to have what is called Free T4 and Free T3 tested. Free means that the hormone is not bound to a protein and therefore is available to the body for use. The TSH is a basically worthless test. You should also have your antibodies checked to see if you have Hashimoto's thyroiditis. Those tests are the anti-thyroglobulin and the anti-microsomal. Because if you have Hashi then you could swing between hyper and hypo and just being treated for hyper is not going to to any good. My mother was caught in a hyper phase and talked into radioactive iodine which killed her thyroid and she had to take replacement for the rest of her life. She actually had Hashimoto's but the doctors didn't look that far. Being on this forum will help give you information but you need to read everything you can get your hands on so you can make the most informed decisions you can. Go and find everything Mary Shomon has written. She is a patient advocate for thyroid diseases. She also has a website www.thyroid-info.com. In my considered but humble opinion endo's are idoits when it comes to thyroid disease simply because most specialize in diabetes. There is a great clinic in Houston, TX that specializes in hormone problems.
Thanks so much. You have made me feel better because I started getting worried that I should do something right away. Like I said, my endo will not really explain anything, she sits there and types on her computer and gives me short answers instead of trying to explain why. I have had the free T3 and T4 and only one time, the T3 was slightly elevated, all other times, they have been normal. That is why I am confused that only one part of this abnormal. They just found this about 5 months ago. I had a TSH done in Feb and everything was normal. Ever since they did one in April, that is when the TSH has been less than .01, so this problem has just started and I am just not one to jump quickly and start taking medication if it "may not" be the right one. I will check out the info you gave me and again, thanks!!!!!
I don't mean to "call someone out", but a few things hatten posted have me confused.
Why is TSH basically a worthless test? My treatment is being driven by that measurement.
I also have Hashimoto's and I do not see any treatment offered more effective than RAI. Why was it a bad thing that your mother had RAI?
RAI will get me off of Methimazole and keep me on synthroid. I lose one drug I don't want to take, and keep one drug I will always need anyway (synthroid). The up/down cycling stops. The treatment is less complicated. What is the down side of that?
TSH is not worthless. TSH tells if we are hyperthyroid or hypothyroid. It is a very good and senstive tool!
The FTs on how they relate to each other tells what the thyroid is doing, how it is acting or other thyroid condition, including autoimmune and other non-thyroid issues (not all, but some). The antibody test is just done to confirm what the blood test already relates.
Nothing wrong with RAI, I have done it. Whoever says different, doesn't know much about RAI and most are anti-RAIers (run across plenty of those in my 11 years on the internet).
My TSH has been on a world cruise for a couple years, on both sides of the equator. My T's have been following it around.
There have been lots of times I get bloodwork done and the nurse calls me at home and tells me my blood is just fine. Usually I hear this while I am laying in bed sick as a dog.
I'm sure at least once my T's were normal and my TSH was low.
With Hashimoto's, my levels are seldom constant. It's always an adventure getting bloodwork, waiting to see if I'm hyper or hypo or eurithroid.
I've read this thread a couple of times, but I forget. Did your Endo run anti-body tests?
If you have antibodies for Hashimoto's, it is possible for your TSH to be low and your T's to be in range. That just means your bloodwork was done while you were in a state of going from hypo to hyper. Or vice versa. I get confused.
If you don't have Hashi's, then I defer to GravesLady as she knows more about this stuff than I do. I'm afraid I am guilty of talking too much and listening too little.
And thank you, GravesLady, for answering my questions.
I beleive they did do the antibodies because I remember them saying something about that to rule out a few things. That was done closer to the beginning. I know lately, they have been running the TSH and T's. I do need to do more research but I am thinking another doctor may not be a bad idea either. My friend that works with me went through 3 before she found one she was comfortable so she told me not to hesitate because it is important enough that I need to be comfortable with answers I get and have them explained. She mentioned a TRH challenge test that I may want to mention to my doctor. They did recommend that I have the Thyroid uptake and scan but my insurance company is not going to pay much of it so it will cost me in the range of 700 or more. That is why they decided to have me come in every 6 weeks to monitor it. Have you had the TRH challenge or anyone else out there? Do they do that at the hospital or endo office?
If you are seeing an Endo and he/she ran tests for anti-bodies, you must not have anti-bodies or you would have a definite diagnosis of either Hashimoto's or Grave's Disease.
I'm not very well informed about Hyperthyroidism except for how it relates to my disease, Hashimoto's.
I have no idea what a TRH challenge test is, and I don't really want to know. Ignorance has it's advantages. LOL!
I understand your frustration with the communication problem you are having. Have you tried being blunt with your Endo? She might be really good as a doctor, but is not aware that she is keeping you in the dark.
Ask a lot of questions. If she doesn't want to answer them, ask her if she knows a good Endo. That may get you a few answers.
Thanks. I will try that. I actually have asked questions straight out, but she is a little hard to understand even when she does answer me so I may just go ahead and get a second opinion. Like I said, before I get into something of a serious nature, then I would like to be as informed as possible.
Thanks for your input.
My TSH is 7,just found yesterday..
And my doctor suggested me to take synthroid 25 mcg.
I will have to check by blood work again after 6 weeks and If I find my TSH level normal,then also should I continue this medicine for the rest of my life?
Pls reply me pls pls...
What are the results of your latest FT3 and FT4 and their reference ranges?
Your TSH is a bit on the low side, but that would not concern me if your FT3 and FT4 are good. FT3 and FT4 are the actual thyroid hormones (TSH is a pituitary hormone), and much more important than TSH in determining thyroid status.
I have a really bad problem with retainig water. It has gotten worse since I started working out. The more water I drink the more I swell. My tsh levels were .924 two weeks ago. Could it be thyroids that are causing me to keep fluids? I can't lose weight!! No matter how hard I try, I can gain 4lbs overnight in just fluids.my toes and fingers hurt I am so swollen. I go back to the doctor wednesday but have no clue what to ask or expect. Can anyone help me better understand?
I was diagnosed with hyperthyroidism 2 years ago. After having my T-3, T-4 and TSH NUMBERS IN THE NORMAL RANGE MY DOCTOR TOOK ME OFF METHIMAZOLE, 3 weeks later i had the worst headache of my life, became dizzy and disoriented. got back on tapazole took a few months to feel better. june 12th i had my thyroid radiated, endo told me to get levels checked when i started feeling fatigued.2 months after,i started having horrible headaches, fevers and heart palpatations got my levels tested. my TSH were .006 and TPO was 84. my endo will not return my calls, went to primary, started me on tapazole and propnyl. every day i feel worse. am unable to work or go to school. cant sleep, feel like im detoxing from opiods and my heart is beating out my chest. i have never been this sick. when do i go to the E.R.? can anyone relate? please please help.
Were TSH and TPOab the only tests they performed? Did they test FT3 and FT4?
I'm not hyper (perhaps you should start your own new thread...you'll get more attention that way than tagging onto an old thread like this), but I have heard members say that it can take quite a while for the thyroid to die after RAI, and hormones can be "dumped" during that time.
You're now on tapazole and propanolol (a beta blocker)? Is that correct? Neither is helping?
If I were you, I think I'd demand an appointment TODAY with your endo. If that fails, don't hesitate to go to the ER if you feel it necessary.
It was explained to me that if your T3 and T4 numbers are in the "normal range" they can still be low or high for YOUR body if they are simply in the top or bottom third of the normal range. If TSH is high, it generally means that your body needs your thyroid to produce more hormones. There are a vast number of other factors that might create some of the same symptoms such as hormones, adrenal function, iron stores, B12, etc. You may want to have those looked at too.
I had all the symptoms of hypothyroidism for many months but didn't realize it. I thought my problems were related to my female parts and anemia since the worst of my symptoms were uterine. Beyond the incessant bleeding, I was constantly exhausted, had cold sweats, joint fluid/pain, hair loss, irregular temperature control and difficult time being motivated to do anything cerebral.
After three tests my TSH remains above the normal range and my T numbers are in the low third of the desirable range. Evidently that range indicates hypothyroidism for my body.
Definitely get more blood tests to rule out other contributing factors.
If you have no symptoms of a thyroid problem, what prompted you to get tested? And what's your confusion about?
A TSH of 11 usually indicates hypothyroidism; however, not always. What are the actual levels of your T3 and T4? Are they Free T3 and Free T4 or are they total T3 and total T4? Also, please post the reference ranges for them, since ranges vary lab to lab and must come from your own report.
Oh I'm so glad I read your post! I have been looking and looking for info. trying to find out what all this meant. I have low TSH but my t3 and t4 are normal and everything i read said that T3 and/or T4 also had to be out of whack as well as low tsh for it to be hyperthyroidism. I don't have insurance and went to the health dept. after losing 15-20 in a few months. I have recently started feeling awful - super stressed, always tired, just don't feel right... they did the blood work there but said since it wasn't hypo they couldn't do anything for me there and referred me to a endo - only one where i live and can't get an appt. for another 4 months. Don't know if i can go that long like this - really feel like i'm losing my mind sometimes! And have now lost over 25lbs - don't have much more to lose! So - just trying to read up on this and get as much info. as possible. I guess the next test is to see whats causing it and stuff - make sure its not a tumor (parahyperthyroidism) which i'm hoping not cause i can't afford surgery... Anyway - thanks for the info. and good luck.
GravesLady and many of the other contributors to this thread haven't been participating in many years. If you'd like comments from current members, please go to the top of the page and click the orange "Post a Question" button. We'll then be able to address your individual concerns. Thanks.
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