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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?
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Avatar universal
I think it wasn't just that I was hypo, for me, but the introduction of the meds.  I'd been hypo for quite a while (when I look back and see when symptoms actually started), and my PCP started me on too high a dose of meds.  My body just wan't used to having those hormones available and had to get used to that again.  

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)  
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Avatar universal
Also, in one of your earlier comments you mentioned something about the adrenals, cortisol and the adrenalin. Yes I do believe that is what is going on with my erratic heart rate and I am waiting to return to a euthroid state, but can you provide some citations for this phenomenon. I can't find any reputable sources for this information
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Avatar universal
They did labs at three weeks to see if they might be able to move up without causing me major problems. Here are the results.
TSH       9.08       range .40-4.5
T-4         8.0         range 4.5-12
T-3         91          range 76-181

Looks like my t-3 and TSH are still not responding very well to the thyroxine.. some progress but not much. My T4 however is a bit below the midpoint. Since I saw the PA today he really didn't know what that meant because he is trying to treat my symptoms... but as I told him, I've felt hyper since last year. I want to think it would be okay to go to 37.5 for the next 4 weeks and he said I could.. but he said I was the lab animal here and only I will suffer the choice. He also offered t3 meds, which I've never done well on and he offered alternating 3.75 and 50 mcgs every night but another test will not take place for 4 weeks. I have horrible insomnia but I believe it is caused by the amounts of extra adrenalin as my body tries to compensate for lack of usable thyroxine t3 is still very low.
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Avatar universal
I thought I was feeling better, but man did I not sleep last night. Insomnia and heavy fast heart beat most of the night. I tried to take a half tablet of Klonopin, that normally worked for me, but not last night, Anxiety continued actually increased and left me without sleep. I figured it would be a bit tough since I had not taken Klonopin for a few days (48 hour to get out of my system) but wow.. really, anybody every have a problem with benzodiazapines. I've always done okay with them.. don't seem to have any affect these days.
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649848 tn?1534633700
COMMUNITY LEADER
If you're feeling better, maybe you're better off to leave things alone for a while.  But then spring break does tend to calm one down, some; used to look forward to that week myself.

Going slowly is almost always the best approach, and bouncing around can make things so much worse.
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Avatar universal
I'm actually feeling quite well in the mornings, but that is when my tachy was taking place. I really haven't had any events and I went for a brisk 40 minute walk this morning and my heart rate started to come down quite nicely without the beta blocker... still I took a reduced amount and it looks like I can't do anything until my PA gets back from vacation next week to discuss changing or tapering off. I am actually starting to feel much better as the 25 mcgs starts to work into my system. I get a sense by endocrinologist feels that I need to go slow this time, really slow making sure I don't provoke too much anxiety bouncing around. My BP is really good now pretty low.. and my heart rate is stabilizing, what more could I ask for. Of course I'm on spring break so I'm sure some stress will come back when I go back to my 'middle school' aged kiddos.
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Avatar universal
You did it right.  You're at 33%.  
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