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?
Best Answer
COMMUNITY LEADER
Some parameters can't be measured below 1.0; therefore the < 1.0 would mean a negative result, particularly since the reference range is < 1.3. From Mayo Clinic website:
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8634
Reference Values: < or =1.3 TSI index
Reference values apply to all ages.
Once you have Graves antibodies, you always have them, so I'd say it's unlikely that they were ever higher.
In my opinion, you don't have Graves Disease, but your TPOab of 910, is consistent with Hashimoto's, which is often characterized by swings from hyper to hypo; many of the symptoms cross over, including the tachy. Had it myself and am currently on a beta blocker.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8634
Reference Values: < or =1.3 TSI index
Reference values apply to all ages.
Once you have Graves antibodies, you always have them, so I'd say it's unlikely that they were ever higher.
In my opinion, you don't have Graves Disease, but your TPOab of 910, is consistent with Hashimoto's, which is often characterized by swings from hyper to hypo; many of the symptoms cross over, including the tachy. Had it myself and am currently on a beta blocker.
I spoke to another friend, military internist and he indicated that this type of test indicates, and they identify it this way.. that <1.0 means that there were no detectable antibodies on this assay. (that's the term he used) I'm going to celebrate by trying to sleep better tonight, knowing that this nightmare will soon be behind me once I have regulated my hormone levels again.
Thank you for being a great ear form my sufferings.
Thank you for being a great ear form my sufferings.
I agree that it's probably quite unlikely that you have Graves'.
I don't know that I'd request another test, but I might call Mayo and ask them if they can research this to see if they have a more precise figure. Diagnostic facilities often report results to doctors with a lot less precision than they are capable.
I don't know that I'd request another test, but I might call Mayo and ask them if they can research this to see if they have a more precise figure. Diagnostic facilities often report results to doctors with a lot less precision than they are capable.
The ER didn't process this test so it had to go to the Mayo Clinic. I suppose if I want another I'll have to look at getting it redone.
What do you think of these results Barb? I have to remind the reader that I was very HYPO at the time so I'm wondering if this was even higher when I began to experience problems. I'm communicating with the endo tomorrow morning.
It doesn't have an actual number, just "< 1.0"?
The Graves' antibodies are a little tricky to interpret. Basically, the "1.3" is the level where most people begin to experience symptoms. However, people who don't have Graves' should have very, very low TSI (< .02). Between .02 and 1.0 indicates that you have the antibodies, but that they should be low enough to not cause symptoms. So, it's odd that they didn't give an exact figure. "< 1.0" is a pretty broad stroke. Do you think you could question the lab further? It probably means the test was negative for Graves', but for what we pay for these things, they could give you an exact number.
The Graves' antibodies are a little tricky to interpret. Basically, the "1.3" is the level where most people begin to experience symptoms. However, people who don't have Graves' should have very, very low TSI (< .02). Between .02 and 1.0 indicates that you have the antibodies, but that they should be low enough to not cause symptoms. So, it's odd that they didn't give an exact figure. "< 1.0" is a pretty broad stroke. Do you think you could question the lab further? It probably means the test was negative for Graves', but for what we pay for these things, they could give you an exact number.
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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)