Aa
Still suffering
I posted earlier, am still looking for help, perhaps I need to re-post and restate my problem. I can provide actual labs if necessary.
I was diagnosed with Hashis with antibodies over 25 years ago. I really didn't know what was going on or what I needed to know at the time, but the doctors said I would go hypo one day but right now the test was clinically insignificant. I went to many dr.s in my earlier days and they all told me I had to get on tranquilizers and exercise, it was all in my head. Over the years with the help of klonopin, I managed to live a decent life and became a regular runner. I guess I wasn't afraid of the hyper spats because I began to believe it was stress too. In 2004 I went hypo at least the limited labs they did indicated so. No longer did anyone do antibodies tests on my and again, I really didn't know the difference. I had enormous difficulty finding the right med to use, my doctors started on too much synthroid and I eventually requested armor. The lowest dosage at first helped out greatly initially. Over the years this went up, but I still used klonopin sparingly to help me deal with the anxiety. 4 years ago I began to have server PACS and PVCs and again couldn't get my thyroid off correctly. I eventually got off the armor but that didn't take the pvc or pacs away, I still had them, until I got rid of my gallbladder. After that surgery everything seemed to settle down nicely, I began to increase synthroid gradually, I resumed a very normal and happy life. As we added more synthroid, I began to enjoy coffee, wine, all the things I could never have before. Then it happened. We had a TSH test that indicated that I was at 6.0 and even though I was feeling fine we moved up to 75mcg synthroid. Within 6 weeks I hit a wall. Anxiety, panic attacks awful. I cut back down to 50mcgs and within weeks I was fine. We tested again that summer and the labs indicated a TSH of 4.4. The doctor recommended every other day of 75 and 50mcgs. Within a month the panic and anxiety was back. This time we reduced to 25 mcg but I went hypo pretty quickly so I went back up to 50mcgs and I was okay for a while, tests came in at TSH of 3.75, doctor said we'll stay there for a while. Within 6 months I was in bad shape again so we tested TSH and a profile now ( which did not include TSI unfortunately) My TSH this time was 2.5 (odd on 50mcgs only)
My FT3 was a little to the middle to middle high range, My FT4 was the same. He only tested TG ab and the microsomial Thyroid antibodies. That test was 975 which showed a much higher than range number and the Tg Ab said < 25 whereas the range was <25. I wished I would have known to have them test the TSI. I'm feeling that I obviously have thyrotoxicosis. My doc is recommending an endo, but there are few in the Colorado Springs, I sure wished I could find a good one, even in Denver if necessary. I'm no longer on synthroid. suffering days of anxiety? / hyper/ hypo symptoms. I feel HORRIBLE. Do people actually have their thyroid removed for toxicosis? Is RAI even a viable alternative. Is stress the thing that is the trigger for my antibodies? Can anyone help? Maybe a good endo in Denver area if not?
I was diagnosed with Hashis with antibodies over 25 years ago. I really didn't know what was going on or what I needed to know at the time, but the doctors said I would go hypo one day but right now the test was clinically insignificant. I went to many dr.s in my earlier days and they all told me I had to get on tranquilizers and exercise, it was all in my head. Over the years with the help of klonopin, I managed to live a decent life and became a regular runner. I guess I wasn't afraid of the hyper spats because I began to believe it was stress too. In 2004 I went hypo at least the limited labs they did indicated so. No longer did anyone do antibodies tests on my and again, I really didn't know the difference. I had enormous difficulty finding the right med to use, my doctors started on too much synthroid and I eventually requested armor. The lowest dosage at first helped out greatly initially. Over the years this went up, but I still used klonopin sparingly to help me deal with the anxiety. 4 years ago I began to have server PACS and PVCs and again couldn't get my thyroid off correctly. I eventually got off the armor but that didn't take the pvc or pacs away, I still had them, until I got rid of my gallbladder. After that surgery everything seemed to settle down nicely, I began to increase synthroid gradually, I resumed a very normal and happy life. As we added more synthroid, I began to enjoy coffee, wine, all the things I could never have before. Then it happened. We had a TSH test that indicated that I was at 6.0 and even though I was feeling fine we moved up to 75mcg synthroid. Within 6 weeks I hit a wall. Anxiety, panic attacks awful. I cut back down to 50mcgs and within weeks I was fine. We tested again that summer and the labs indicated a TSH of 4.4. The doctor recommended every other day of 75 and 50mcgs. Within a month the panic and anxiety was back. This time we reduced to 25 mcg but I went hypo pretty quickly so I went back up to 50mcgs and I was okay for a while, tests came in at TSH of 3.75, doctor said we'll stay there for a while. Within 6 months I was in bad shape again so we tested TSH and a profile now ( which did not include TSI unfortunately) My TSH this time was 2.5 (odd on 50mcgs only)
My FT3 was a little to the middle to middle high range, My FT4 was the same. He only tested TG ab and the microsomial Thyroid antibodies. That test was 975 which showed a much higher than range number and the Tg Ab said < 25 whereas the range was <25. I wished I would have known to have them test the TSI. I'm feeling that I obviously have thyrotoxicosis. My doc is recommending an endo, but there are few in the Colorado Springs, I sure wished I could find a good one, even in Denver if necessary. I'm no longer on synthroid. suffering days of anxiety? / hyper/ hypo symptoms. I feel HORRIBLE. Do people actually have their thyroid removed for toxicosis? Is RAI even a viable alternative. Is stress the thing that is the trigger for my antibodies? Can anyone help? Maybe a good endo in Denver area if not?
As long your thyroid hormones are in normal range your problems are not caused by thyroid dysfunction. I think you should contact psychiatrist because of anxiety problems. It is not necessery to chek antibody if immunothyreopathy is once diagnosed.
Moonlight, I have to disagree with the idea that if your thyroid hormones are in the normal range, your problems are not caused by thyroid dysfunction. the ranges are far too broad for that to be the case. the ranges are based on the total population of patients that are tested and then the assumption is made that about 2.5% are hypothyroid and 2.5% hyperthyroid. Obviously there are many, many more hypothyroid patients than that.
For that reason the AACE finally revised the range for TSH, over 8 years ago. Unfortunately they did not also revise the ranges for Free T3 and free T4 at the same time as TSH. If these ranges were also revised, the new ranges would look more like the upper half of the current ranges. That is why we hear from so many members, myself included, that symptom relief for them required that Free T3 and Free T4 had to be adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.
Pewe, it is unfortunate that your doctor at the time when you were feeling good decided to raise your meds, based on your TSH. TSH is totally unreliable as a diagnostic by which to regulate your thyroid meds. At best it is an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4. Your history reminds me of another of our members, goolarra, whose doctor kept trying to raise her meds based on TSH and she says he almost killed her. So she does well with her Free T3 and Free T4 at lower levels than most of us and her TSH above range.
If she notices this thread I'm sure she will give you some good info. Otherwise, send a PM and ask about her experiences.
For that reason the AACE finally revised the range for TSH, over 8 years ago. Unfortunately they did not also revise the ranges for Free T3 and free T4 at the same time as TSH. If these ranges were also revised, the new ranges would look more like the upper half of the current ranges. That is why we hear from so many members, myself included, that symptom relief for them required that Free T3 and Free T4 had to be adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.
Pewe, it is unfortunate that your doctor at the time when you were feeling good decided to raise your meds, based on your TSH. TSH is totally unreliable as a diagnostic by which to regulate your thyroid meds. At best it is an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4. Your history reminds me of another of our members, goolarra, whose doctor kept trying to raise her meds based on TSH and she says he almost killed her. So she does well with her Free T3 and Free T4 at lower levels than most of us and her TSH above range.
If she notices this thread I'm sure she will give you some good info. Otherwise, send a PM and ask about her experiences.
Wow, nice comments, I thought this group was supportive. For your information I did see a psychiatrist in my early days no problems.
What was it you were trying to spell here, because I can make no sense of it. I think there are plenty members of this community who have had antibodies for hashis with antibodies for TSI as well that would indicate hypo hyper like symptoms. I thought that's what toxicosis is about? I was wondering if the same toxicosis people have had to have RAI, or TT, or perhaps use AT therapy. Or perhaps some of you just waited to settle back down to hypo and continue using smaller doses of synthroid. I would like this option, but I would like to know if people suffer from the same problems. I do not doubt that anxiety is playing a role in it. But isn't that a characteristic of hyper symptoms anyway?
What was it you were trying to spell here, because I can make no sense of it. I think there are plenty members of this community who have had antibodies for hashis with antibodies for TSI as well that would indicate hypo hyper like symptoms. I thought that's what toxicosis is about? I was wondering if the same toxicosis people have had to have RAI, or TT, or perhaps use AT therapy. Or perhaps some of you just waited to settle back down to hypo and continue using smaller doses of synthroid. I would like this option, but I would like to know if people suffer from the same problems. I do not doubt that anxiety is playing a role in it. But isn't that a characteristic of hyper symptoms anyway?
Thank you for your supportive words. I didn't get a sense for whether you or the person you referred to came up with antibodies at one point and suffered from hypo symptoms at some point. I should have had my TSI tested to know if I've got some graves going on at the same point. My mom has graves and even though she has undergone RAI many years ago, she still struggles.
sorry in my previous point I meant to say hyper not hypo when talking about coming up all of a sudden with hyper symptoms.
COMMUNITY LEADER
First off, this is a supportive group; moonlight0 is wrong; just because your FT3/FT4 are "in range" does not mean that you are fine and that your anxiety can't be thyroid related. Many of us, myself included, have been down this road. Sometimes anxiety is thyroid related, sometimes not.
Hashimoto's can cause "swings" from hyper to hypo and back again. Once I learned more about thyroid issues, I believe this is what happened to me, starting when I was in my 30's, and I was only dx'd hypo/Hashi in 2008.
I totally agree with gimel that TSH is not a good reason to raise/lower medication. gimel mentions goolarra and yes, if she sees this, she will respond...... I'm the exact opposite - my TSH runs < 0.01 and doctors want to take away my med, because my TSH is too low....
Hashimoto's can cause "swings" from hyper to hypo and back again. Once I learned more about thyroid issues, I believe this is what happened to me, starting when I was in my 30's, and I was only dx'd hypo/Hashi in 2008.
I totally agree with gimel that TSH is not a good reason to raise/lower medication. gimel mentions goolarra and yes, if she sees this, she will respond...... I'm the exact opposite - my TSH runs < 0.01 and doctors want to take away my med, because my TSH is too low....
COMMUNITY LEADER
Do you have current thyroid labs that you could post for us, along with reference ranges from your lab report? Reference ranges vary from lab to lab, so must come from your own report.
Seeing your results will help members better assess your situation, and allow us to offer more suggestions/support.
Seeing your results will help members better assess your situation, and allow us to offer more suggestions/support.
Gee, I guess my ears should have been burning. LOL
Yes, I have had a similar experience. When I was diagnosed with Hashi's, my TSH was 60+. My doctor put me on too high a dose of meds to start, which made a heart arrhythmia I'd had all my life much worse. She's started me on 88 mcg, and I had to back off and back off until I was only taking 25 mcg, and still I had unbearable SVT.
I started taking a beta blocker, which helped the SVT (supra-ventricular tachycardia) a lot. Then, I started the slow climb up on the levo.
My TSH went down to around 20, and my doctor kept telling me I needed more meds, even though I was feeling good at that point. I very slowly increase until one day I'd finally had it. My TSH wasn't moving. That's when I found this forum.
After learning a whole lot, I decide to start seeing an endo. He, too, wanted to increase my meds, and he did until I went HYPER, and still my TSH was around 20!!! I'm comfortable fairly low in the ranges, but no one was believing me. My endo finally realized that I have a pituitary issue, and my TSH is NEVER coming down.
I saw my endo just yesterday for my annual visit. His first question was, "How do you feel?" I said I felt great and acknowledged that looking at my own labs, even "I" thought I ought to be hypo as he//, but I'm not. My TSH is still around 20, and my FT4 has fallen just below the lower limit of the range, but my FT3 is still good, and I feel good.
What I've learned over the years is that if you don't feel hypo, you're not hypo, and if you don't feel hyper, you're not hyper. We all feel comfortable at different levels, and one hypo's heaven is another's he//.
Do you have recent FT3, FT4 and TSH to post? If so, please do (along with reference ranges) and perhaps something will jump out at one of us. Have you had a TSI yet?
I couldn't agree more with the comments that being "in range" is no guarantee that we will be asymptomatic. Furthermore, TSH is useless in so many cases that it has to be ignored.
Thyroid removal or RAI is often used as a "permanent" solution for Graves', but it's seldom recommended for Hashi's unless there are extenuating circumstances.
Stress is perhaps the #1 trigger for antibody flares.
Yes, I have had a similar experience. When I was diagnosed with Hashi's, my TSH was 60+. My doctor put me on too high a dose of meds to start, which made a heart arrhythmia I'd had all my life much worse. She's started me on 88 mcg, and I had to back off and back off until I was only taking 25 mcg, and still I had unbearable SVT.
I started taking a beta blocker, which helped the SVT (supra-ventricular tachycardia) a lot. Then, I started the slow climb up on the levo.
My TSH went down to around 20, and my doctor kept telling me I needed more meds, even though I was feeling good at that point. I very slowly increase until one day I'd finally had it. My TSH wasn't moving. That's when I found this forum.
After learning a whole lot, I decide to start seeing an endo. He, too, wanted to increase my meds, and he did until I went HYPER, and still my TSH was around 20!!! I'm comfortable fairly low in the ranges, but no one was believing me. My endo finally realized that I have a pituitary issue, and my TSH is NEVER coming down.
I saw my endo just yesterday for my annual visit. His first question was, "How do you feel?" I said I felt great and acknowledged that looking at my own labs, even "I" thought I ought to be hypo as he//, but I'm not. My TSH is still around 20, and my FT4 has fallen just below the lower limit of the range, but my FT3 is still good, and I feel good.
What I've learned over the years is that if you don't feel hypo, you're not hypo, and if you don't feel hyper, you're not hyper. We all feel comfortable at different levels, and one hypo's heaven is another's he//.
Do you have recent FT3, FT4 and TSH to post? If so, please do (along with reference ranges) and perhaps something will jump out at one of us. Have you had a TSI yet?
I couldn't agree more with the comments that being "in range" is no guarantee that we will be asymptomatic. Furthermore, TSH is useless in so many cases that it has to be ignored.
Thyroid removal or RAI is often used as a "permanent" solution for Graves', but it's seldom recommended for Hashi's unless there are extenuating circumstances.
Stress is perhaps the #1 trigger for antibody flares.
Sure, I'm trying to get in to see an endo.. perhaps they can order a TSI test. Here are the results of 4 weeks ago. I am now off synthroid and really not suffering from slow heart rate or constipation. Cold sensitivity and heat sensitivity are equal to me.
Throglob AB < 20 F ref <20
Thyromicro AB 910 ref <35
TSH 2.489 ref 0.320-5.50
T4 Free 1.30 ref 0.70-1.80
T3 Free 3.10 ref 2.30-4.20
I'm sorry but I'm not too sure I understand the need to post results and ranges. Is a medical doctor looking over this stuff? I'm just wanting to know if people out there suffer from hypo and hyper symptoms at the same time, and if they settle down on their own. (Not liking the idea of surgery, RAI or anything else.) Not interested in the natural approach, tried that doesn't work, even cut wheat out of my diet. These labs only tell a very small part of my history, which I detailed above.
Throglob AB < 20 F ref <20
Thyromicro AB 910 ref <35
TSH 2.489 ref 0.320-5.50
T4 Free 1.30 ref 0.70-1.80
T3 Free 3.10 ref 2.30-4.20
I'm sorry but I'm not too sure I understand the need to post results and ranges. Is a medical doctor looking over this stuff? I'm just wanting to know if people out there suffer from hypo and hyper symptoms at the same time, and if they settle down on their own. (Not liking the idea of surgery, RAI or anything else.) Not interested in the natural approach, tried that doesn't work, even cut wheat out of my diet. These labs only tell a very small part of my history, which I detailed above.
So do you still take beta blockers? Have you been able to discontinue those?
I was taking beta blockers just up to a few days ago, but I don't have this issue at home and prefer not to take them unless necessary. I also find that a half of a klonopin low dose tab keeps the anxiety and the tachicardia at bay.
I was taking beta blockers just up to a few days ago, but I don't have this issue at home and prefer not to take them unless necessary. I also find that a half of a klonopin low dose tab keeps the anxiety and the tachicardia at bay.
By the way, over the years I have functioned quite well at 2.5, 3 and 4.5 TSH after my gallbladder was out 1 appears to be my breaking point. Increases stress and anxiety to the point where I now have panic disorder again, along with tach. I am thinking if I just get my anxiety down with Klonopin I might be able to get myself to settle down in the hypo range again and start adding synthroid.
I do still take beta blockers. About a year ago, I mentioned to my endo that maybe I could d/c them. He said, "Why mess with a good thing?", and I had to agree with him. Everyhting is so good that I really don't want to rock the boat.
I'm not sure I'd prefer klonopin to beta blockers. Beta blockers have been around fr over 50 years, so their side effects are known to be few, and their long term efects have been studied. Do you have an adverse reaction to beta blockers?
Your labs don't look bad right now. Your FT4 is a little above midpoint of range, and your FT3 is a little on the low side, but not a conern if you were feeling well.
What are your current symptoms again? And why do you want to go back on meds? Those labs were not on meds, correct?
I'm not sure I'd prefer klonopin to beta blockers. Beta blockers have been around fr over 50 years, so their side effects are known to be few, and their long term efects have been studied. Do you have an adverse reaction to beta blockers?
Your labs don't look bad right now. Your FT4 is a little above midpoint of range, and your FT3 is a little on the low side, but not a conern if you were feeling well.
What are your current symptoms again? And why do you want to go back on meds? Those labs were not on meds, correct?
These labs were on 50mcg. Please read original post. Even at 50 mcg my tsh was getting closer to 1 and I had panic disorder. I'm completely off synthroid now. For a while there I still felt like panic and excessive thyroxine was still happening, but today has been the first day in a long time (3 weeks off synthroid) that I felt tired. heart rate hasn't slowed yet like hypo slow, but were still working on it. Beta blockers handle the anxiety adequately but my blood pressure is really low at night and I do have a problem with hypo tension if I'm not taking these for HBP. Klonopin makes me tired but it handles the panic disorder/ anxiety and most of the heart issues. I guess I asked because I was afraid that I have been both hypo and hyper at the same time...is this even possible?
I have read your original post...more than once. There's a lot of information there, and details can be important. Forgive me if I'm redundant, but it's better than misinterpreting.
It's really not possible to be both hypo and hyper at the same time, but there are a couple of things that can make it feel like that's what's happening.
Hashi's (usually in the early stages, which wouldn't seem to be the case with you since you were diagnosed 25 years ago) can have swings back and forth from hypo to hyper, causing hyper symptoms for a while, then hypo.
Many symptoms can "cross over". They're symptoms of BOTH hypo and hyper for some people. Panic and anxiety are two symptoms that frequently cross over. They seem to be a symptom of a thyroid imbance in either direction.
So, you're starting to have other hypo symptoms now as well, so you need to start meds again. You've been on 25 mcg previously and still had hypo symptoms. You seem to have stabilized several times on 50 mcg, but that eventually got to be too much for you.
"This time we reduced to 25 mcg but I went hypo pretty quickly so I went back up to 50mcgs and I was okay for a while, tests came in at TSH of 3.75, doctor said we'll stay there for a while. Within 6 months I was in bad shape again so we tested TSH and a profile now ( which did not include TSI unfortunately) My TSH this time was 2.5 (odd on 50mcgs only)
My FT3 was a little to the middle to middle high range, My FT4 was the same."
What was your FT3 and FT4 on 50 mcg when your TSH was 3.75?
By "bad shape" do you mean you were felling hypo again or hyper or having more panic and anxiety? What were your actual FT3 and FT4 levels when your TSH was 2.5?
Please include FT3 and FT4 reference ranges. They vary lab to lab and have to come from your own lab report.
It's really not possible to be both hypo and hyper at the same time, but there are a couple of things that can make it feel like that's what's happening.
Hashi's (usually in the early stages, which wouldn't seem to be the case with you since you were diagnosed 25 years ago) can have swings back and forth from hypo to hyper, causing hyper symptoms for a while, then hypo.
Many symptoms can "cross over". They're symptoms of BOTH hypo and hyper for some people. Panic and anxiety are two symptoms that frequently cross over. They seem to be a symptom of a thyroid imbance in either direction.
So, you're starting to have other hypo symptoms now as well, so you need to start meds again. You've been on 25 mcg previously and still had hypo symptoms. You seem to have stabilized several times on 50 mcg, but that eventually got to be too much for you.
"This time we reduced to 25 mcg but I went hypo pretty quickly so I went back up to 50mcgs and I was okay for a while, tests came in at TSH of 3.75, doctor said we'll stay there for a while. Within 6 months I was in bad shape again so we tested TSH and a profile now ( which did not include TSI unfortunately) My TSH this time was 2.5 (odd on 50mcgs only)
My FT3 was a little to the middle to middle high range, My FT4 was the same."
What was your FT3 and FT4 on 50 mcg when your TSH was 3.75?
By "bad shape" do you mean you were felling hypo again or hyper or having more panic and anxiety? What were your actual FT3 and FT4 levels when your TSH was 2.5?
Please include FT3 and FT4 reference ranges. They vary lab to lab and have to come from your own lab report.
Sorry, I just realized that the labs you posted above were the labs where your TSH was 2.5. Please ignore that question. You also don't have to post reference ranges if they're the same.
I just noticed this also:
"My FT3 was a little to the middle to middle high range, My FT4 was the same."
You're not calculating this properly. In order to find where in the range you are, here's what you do.
upper limit of range - lower limit of range (4.2 - 2.3 = 1.9)
your result - lower limit of range (3.1 - 2.3 = 0.8)
divide second result by first result (0.8 / 1.9 x 100 + 42% of range
Your FT3 is actually quite a bit below midpoint, not "middle high". This may not even be significant, just wanted you to know for future reference.
I just noticed this also:
"My FT3 was a little to the middle to middle high range, My FT4 was the same."
You're not calculating this properly. In order to find where in the range you are, here's what you do.
upper limit of range - lower limit of range (4.2 - 2.3 = 1.9)
your result - lower limit of range (3.1 - 2.3 = 0.8)
divide second result by first result (0.8 / 1.9 x 100 + 42% of range
Your FT3 is actually quite a bit below midpoint, not "middle high". This may not even be significant, just wanted you to know for future reference.
My doctor thinks I've lost my mind so he refers me to the office PA from now on. The PA has never always ordered Free T3 or Free T4 and I haven't been dilligent about asking. (mistake no. 1) So I really don't know what these values were at that moment inquired above. Since I didn't have a TSI test some people suggest that you can be both hyper and hypo because of a TSI spike, which I did not see because we had not test. Is this actually possible, a army internist friend of mine said that is not likely because thyroid hormone sythesizes over a period of time.
COMMUNITY LEADER
You can have both Graves and Hashimoto's, but you can't be both hyper and hypo at the same time; you're either hyper or hypo, depending on the symptoms you have, and/or hormone levels, at any given time.
As goolarra said, some symptoms can "cross over" and be present with either. Panic and anxiety, along with fatigue/exhaustion are some that do apply to both.
I, too, have anxiety, which is due to circumstances beyond my control, rather than thyroid related. I also take a beta blocker, which does not control the anxiety, for me.
As goolarra said, some symptoms can "cross over" and be present with either. Panic and anxiety, along with fatigue/exhaustion are some that do apply to both.
I, too, have anxiety, which is due to circumstances beyond my control, rather than thyroid related. I also take a beta blocker, which does not control the anxiety, for me.
As Barb said, you can have both the antibodies for Hashi's and the antibodies for Graves'. However, at any one time, one antibody is dominant over the other, and you're either hypo or hyper.
"The PA has never always ordered Free T3 or Free T4 and I haven't been dilligent about asking. (mistake no. 1)."
I think you've hit the nail on the head. You and the PA have been adjusting your meds based on TSH. In my experience, that's a recipe for disaster. My TSH doesn't track my FT4 at all. Sometimes, my FT4 will be up, and my TSH will be, too. Sometimes they're both down.
My first suggestion would be to be sure to have FT3 and FT4 tested every time you have blood drawn. You know that.
It seems that 25 mcg was too little for you and 50 was too much. But you need to get back on meds because you're starting to have hypo symptoms again. If I were you, I'd ask my doctor about starting again on 25. If 25 still leaves you hypo, why not try 37.5 or 44 instead of jumping directly to 50? Don't get hung up on your TSH, but keep track of how your symptoms change as your FT3 and FT4 rise. Going from 25 to 50 and back again doesn't sound like a lot, but it's doubling your dose, then halving it. That's too big a change for thyroid meds.
"The PA has never always ordered Free T3 or Free T4 and I haven't been dilligent about asking. (mistake no. 1)."
I think you've hit the nail on the head. You and the PA have been adjusting your meds based on TSH. In my experience, that's a recipe for disaster. My TSH doesn't track my FT4 at all. Sometimes, my FT4 will be up, and my TSH will be, too. Sometimes they're both down.
My first suggestion would be to be sure to have FT3 and FT4 tested every time you have blood drawn. You know that.
It seems that 25 mcg was too little for you and 50 was too much. But you need to get back on meds because you're starting to have hypo symptoms again. If I were you, I'd ask my doctor about starting again on 25. If 25 still leaves you hypo, why not try 37.5 or 44 instead of jumping directly to 50? Don't get hung up on your TSH, but keep track of how your symptoms change as your FT3 and FT4 rise. Going from 25 to 50 and back again doesn't sound like a lot, but it's doubling your dose, then halving it. That's too big a change for thyroid meds.
I've been told that I must wait for the full 6 weeks to let my thyroid re-calibrate and we'll test again, by then I will see the endo specialist. I don't know that I am hypo at this time and am quite frightened of self medicating without some labs. Really at this time, I seem to still have a lot of anxiety, a very busy stomach, multiple bathroom stops. heartrate is still fairly fast most of the time. (of course I still exercise) I'm sensitive to both too much heat and too much cold, I figure anxiety is still having it's way with me. I'm pretty miserable... but there is hope.
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I also discovered much later that consistency is so important with heart issues. Increasing was very difficult for me. Stopping and starting and big dose changes take a reall toll on the heart (not permanent, but can be uncomfortably erratic for a while). It wasn't until I got my FT3 and FT4 stabilized and got on a consistent dose that my heart went back to (better than) normal (for me).
You're right, though, we are all built differently, which is why my experiences may not apply to you completely.
One thing that often happens when we're hypo is that the adrenals step in and try to compensate for the lack of thyroid hormones. That can lead to adrenal problems as well. At the very least, if adrenals are involved, the whole system has to reblance with the thyroid hormones present again.
Some people gain weight hypo or hyper, and some lose hypo or hyper. There isn't always a lot of rhyme or reason. We just have to get used to recognizing how we, ourselves, react individually to each state (hypo and hyper)