Since you haven't had a Free T3 run, you really can't be sure where you are with the whole thing.
I have hypOthyroidism/Hashimoto's also. When I was first diagnosed, my TSH was 55+; and free T4 was like 0.1. My doctor refused to run Free T3 also, and I ended up having to get it done myself at a lab that will do blood work without a doctor's order.
It takes a while (several weeks) for the med to build up enough for you to get the full effect. AND your body might not be tolerating the levothyroxine - maybe you need to switch to synthroid (brand name). Some manufacturers use different fillers, etc and not everyone does well on the same med.
I started out on synthroid, didn't do so well, so went to generic levothyroxine + cytomel (T3 med) and am doing much better, though not tip top. I am due for blood work again in a couple of weeks and see my endo at the end of June....
This disease can be like a bad rollercoaster ride and we'd all like to get off, if it would just stop long enough -- unfortunately, once you have it, there it is. If you get to feeling badly enough - do make sure you go to the ER and get help.
PS - doctors can be so casual because most of them do not have the disease and they aren't really taught a lot about thyroid issues in med school - mostly they are taught to hand out a script for synthroid.............
Good luck.
I finally got a referal to an Endo. Calling for appt tomorrow. Saturday the clinic Dr. gave me Anbien, does not work. Just makes my head burn. Finally gave me beta-blocker, helps a little. Did you ever have a constant burping problem? I just don't understand how doctors can be so casual about thyroid problems that can make someone feel so bad. I just wish they would put me in the hospital already and figure all this out. After 3 or 4 weeks of poor sleep, I am sooo tired. I think my body just needs to produce enought RT3 to put the breaks on the adrenalin problem.
You don't know how much it helps to talk to somone about it. I am glad I am not alone, not that I would wish this on anyone, of course.
How long did you have sleep problems?
ask your doctor to run free t3 since you're having these symptoms. beg!
hypo can cause poor sleep as well. as a matter of fact, i slept worst when i was hypo. (i've clinically had them both) weird hallucinations, sleep walking, up a lot, feeling like i'm awake all night. so your sleep issues could be from hypo.
I think I have learned something, but I have a question. My TSH is high, my free T4 is a low normal, so that gives me the hyper symptoms, because it is converting to T3 (which the doctors still have not run). How do I get my body to put the breaks on and produce RT3? I am on sleep aids and still up before the roosters!
Last night was horrible. I took my sleeping meds and still could not sleep till almost 3am. I had bad heart palps, and I was shaking so hard (like I was cold) that I could barely talk. My temp was a little low, so I am guessing it was not a thyroid storm. My heart is still beating tensly this morning and I really don't want to take my synthroid if it would cause a repeat of last night. Why do these doctors have to be forced to do the right blood tests? I wish I had more answers. I am still waiting for my next appt.
Hypothyroidism is not the "simple" illness that docs make it out to be. At my worst, I would go to sleep at night scared to death that I wouldn't wake up in the morning. I used to tell my husband to check on me before he left for work to make sure I was still breathing. It was awful. I thought I was going to either die or go crazy.
If you haven't already, something that really helped me was to cut out ALL caffeine, and eating the right foods. So you're already on the right track by reading up on nutrition and vitamins. I also started walking every day, even when I didn't feel like I could put one foot in front of the other. Now I walk 3 miles each day - I think it helps with the palpitations.
Again, please try to stay as positive as possible. If you're like me, then everything is fine - you just need to get your levels all squared away. You ARE a strong person, and you WILL get through this. Give it some time - there is a light at the end of the tunnel!
Gosh! I had no idea before reading some of the threads how common this is. You and everyone else in this community deserve respect for what you have had to put up with and to still be able to manage your life. What a horrible thing to happen to the human body. I consider myself a strong person, had my gallbladder taken out w/out pain meds for a day, boke my foot and still taught Sunday school and other things like that, but this totally destroys one's resolve to keep it together (even though you may be composed on the outside). What keeps me going is that I want to be there for my family, and from what I see, it seems to be the perspective of most everyone. That, and the hope these symptoms will be abated.
Thank you for the advice. I tried to get my results today, but could not. I go back to the doc 6/4. I hope then to have the Hashi, antibody and free T3 test done. I am just glad to be able to sleep at night even if it is with meds. I was getting to a point that I got anxious just walking to the bedroom; sometimes a little teary trying to figure out how to be tired and think of something else with my heart racing.
I am glad I found this site. I will post my results as I get them and try to keep up with others to help if I can with what little experience I have. I've been trying to read up on nutrition, PH balance and correct vitamines. I am just so confused about the diagnosis though with my symptoms and the lack of concern from the doctors. At least I have been able to eat a little the last two days.
Tristy
It sounds like Hashimoto's Thyroiditis.
I too was diagonosed as hypo(TSH a little over 12) but had hyper symptoms, the most bothersome and noteable of which was really bad heart palpitations. They would last for 5-6 hours a day sometimes. I also had frequent diarrhea, and wasn't sleeping well ( I would fall asleep at 2am and then be wide awake an hour later). In addition, I felt jittery all the time. I actually felt like all of the above symptoms worsened when I went on 50mcg of levothyroxine!
My endo discovered that I wasn't just hypo, I also had Hashi's. After a many months of dealing with the above and being on 50mcg of levo (I went to a cardiologist who told me my heart was fine), I finally started to feel better. The diarrhea went away, I didn't feel nervous anymore, and the palpitations are now down to just a flutter every couple of days.
If you feel like the symptoms are worse on the levo (which i did at first) then maybe try taking half a tablet for a 4 - 6 weeks, then move it back up to a whole tablet.
I know how you feel. It's really hard, but try to be positive - you will get through it and eventually feel better!
Yeah, I had hyper symptoms prior to medications. Well... I always started getting tired a little early (like say 8pm), but was never one who could sit for very long. I took my third pill this morning. I am also taking valium and buspar at night just so I can sleep. Last night was my second night to sleep in a week. In the mornings, it all starts over again with the chest pain, heart palps, gas, anxiousness. If this is how people live with thyroid problems, I don't see how anyone would want to live for very long. I have a call in to the doctor to see what tests they have done and what all the numbers are. I will ask if it could be Hashi's when he calls. I don't think a Free T3 has been done at all. Grrrr. I have asked for an Endo. doctor, but no response.
Did you have the hyper symptoms prior to starting medication? I have Hashimoto's which will eventually lead to 100% hypo but right now I fluctuate bewteen hyper and hypo. NO FUN! You really need to have more labs drawn to check your Free T3 and antibodies. You may have Hashi's as well.
Does anyone know if I have been misdiagnosed? I am in a military town and no one gets personal attention. I feel like I am talking to a wall - they just frown when I tell them my symptoms. I am 5'1, 120 lbs. always had a nervious nature, like I had to be moving some part of my body, like shaking my feet or whatever. I just wish I could get away from the caffine high feeling and sleeplessness that just started. How can I be Hypo, my Free T4 was a low normal? All this stuff is so new to me. Could this be something else?