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?
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.
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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)