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?
My Doc also doesn't like my number so low when it gets under 1.0. But I feel best when it is definitely under 1.0.
Have you ever looked into Hashimoto's Encephalopathy? Just curious! I am supporting you.
I am 53 year old female, with hypo thyroid and on Synthroid since 2007. January of this year while driving across several states I came down with overwhelming sleepiness and developed other symptoms and became sort of psychotic. I drove myself to a hospital ER when I noticed just how sick I was in that I could not stay awake; I was confused; I couldn't move my body normally which is "ataxia"; I pee'd my bed 3 times during my sleep while hospitalized; I developed actual hallucinations for the only time in my life (scary!) and when the hospital checked my Thyriod it was almost at 12.0 I feel best when my numbers are more down around 1.0 to 2.0. Definitely under 2.5 though. I was not aware that my Thyroid condition was deteriorating so rapidly that my numbers went up to almost 12.0. Shocking for me. Anyway, when my Thyroid Antibodies were tested I showed up at over 1000 and Thy Ab was "unable to be quantified due to Thyroid Antibodies present". Long story short; All these factors, combined with my strange onset of psyche symptoms (which all psyche symptoms went away when my Thyroid numbers returned to normal) resulted in a diagnosis of "Hashimoto's Encephalopathy:". Looking for anyone who knows about this diagnosis and has dealt with it. ALSO trying to help anyone else who may have this autoimmune disease that is often misdiagnosed so that they can get help. THank you
Thank you for pointing out the lab error, looks like they did the wrong lab at quest so as the PA told me after a brief discussion the information was not very valuable, his feeling is though that my Free t4 and Free T3 are still quite low based on the total amounts so an increase would still be merited. I was euthroid on 50 mcgs for many years, no problems, ran a TSH from 2.5 to 4.5 but felt fine. When we hit the 75mcgs amount I hit the wall. I think for some reason anxiety set in and wouldn't go away the second time I hit that wall, so I began to think I was going hyper, pulled off the meds and put myself in hypo hell with sympathetic nervous system that went all out of whack... too much adrenalin, too much cortisol in the mornings... no longer sleeping... I DO believe that I will probably stablize again at 50 but I need to relax. The tachy is only just a rapid heart rate in the mornings now have had any major events for a while.. still not ready to dump the beta blocker yet.. but I think I will be able to soon once my adreneline and cortisol problems settle down. :-)
Sorry to do this but I'm tried to read most of this thread and there are a few things that I want to get cleared up.
It seems like you stated that 25 mcg seems to little and 50 mcg is too much. That is good information to know.
Also above you stated that "you felt hyper for the last year". Yet your labs showed and most seemed to agree that you were hypo. Hence the need for T4 medication again at the 25 mcg level.
I'm curious as to what a complete list of symptoms you are having are. That is are you having a host of hypo symptoms with the only hyper symptoms being your heart beat and anxiety. The reason I ask is that anxiety is one of the symptoms that appear in both hyper OR hypo. Also heart palps are also cross between hyper and hypo.
I'm just trying to help determine if you are indeed hypo or hyper. It seems like most of the discussion related to symptoms have been focused almost completely upon the heart rate.
Also you seem to connect the insomnia with the heart rate AND anxiety. Could it be possible that when you get tachy that alone worry's you and causes you the anxiety? It seems like that may be a consistent pattern. Or is it the other way around? I'm trying to determine if the anxiety is hypo or otherwise related or if that is a result of stress caused by the tachy which I would think would be understandable as it I imagine is very upsetting feeling.
It seems to me that your earlier posts indicated that when you were on T4 meds you started feeling fine but then raised up and things went off track. So again as pointed out I think by gimel that was unfortunate and it appears that rise in dosage was too much FOR YOU.
Well up in this discussion I suggested that you alternate between 50 and 25 every other day to average to 37.5 mcg. Is that what you are now doing? Or are you on a straight 37.5 mcg daily dosage?
When are you taking your thyroid meds? In the morning or evening
Since your FT3 seem to remain low. You might also want to consider if things don't pan out at the 37.5 level taking natural dissected thyroid (NDT) such as Armour or nature thyroid. maybe you are just a person who doesn't tolerate something in the T4 med you are taking. Since NDT has both T4 and T3 and a completely different formulation and buffers/fillers etc. Maybe you would find it more compatible or tolerable.
Just some thoughts to consider.
It seems like you stated that 25 mcg seems to little and 50 mcg is too much. That is good information to know.
Also above you stated that "you felt hyper for the last year". Yet your labs showed and most seemed to agree that you were hypo. Hence the need for T4 medication again at the 25 mcg level.
I'm curious as to what a complete list of symptoms you are having are. That is are you having a host of hypo symptoms with the only hyper symptoms being your heart beat and anxiety. The reason I ask is that anxiety is one of the symptoms that appear in both hyper OR hypo. Also heart palps are also cross between hyper and hypo.
I'm just trying to help determine if you are indeed hypo or hyper. It seems like most of the discussion related to symptoms have been focused almost completely upon the heart rate.
Also you seem to connect the insomnia with the heart rate AND anxiety. Could it be possible that when you get tachy that alone worry's you and causes you the anxiety? It seems like that may be a consistent pattern. Or is it the other way around? I'm trying to determine if the anxiety is hypo or otherwise related or if that is a result of stress caused by the tachy which I would think would be understandable as it I imagine is very upsetting feeling.
It seems to me that your earlier posts indicated that when you were on T4 meds you started feeling fine but then raised up and things went off track. So again as pointed out I think by gimel that was unfortunate and it appears that rise in dosage was too much FOR YOU.
Well up in this discussion I suggested that you alternate between 50 and 25 every other day to average to 37.5 mcg. Is that what you are now doing? Or are you on a straight 37.5 mcg daily dosage?
When are you taking your thyroid meds? In the morning or evening
Since your FT3 seem to remain low. You might also want to consider if things don't pan out at the 37.5 level taking natural dissected thyroid (NDT) such as Armour or nature thyroid. maybe you are just a person who doesn't tolerate something in the T4 med you are taking. Since NDT has both T4 and T3 and a completely different formulation and buffers/fillers etc. Maybe you would find it more compatible or tolerable.
Just some thoughts to consider.
Try googling "thyroid meds and adrenal fatigue", and I think you'll get a pile of reading. If you don't find anything there, I'll see what else I can find.
I notice that your labs posted earlier were FT3 and FT4, and these are total T3 and total T4. Do you know why they switched?
I notice that your labs posted earlier were FT3 and FT4, and these are total T3 and total T4. Do you know why they switched?
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
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.
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.
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.
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.
Going slowly is almost always the best approach, and bouncing around can make things so much worse.
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.
I have to give goolarra a high five! If I learned anything from this thread, it's how to properly calculate and read my blood panel results! I just had another panel done today and very curious how my FT3 will look. I thought it was mid range too but it's actually low (33%) if I calculated right.
FT3=2.8 range 2.0-4.4.
Anyway, I'll post a new thread with my latest results. I have to wait until I've got decent health insurance before I go to Gimel's suggested physician. I learned more than that, but learning to calculate my results big time helps.
FT3=2.8 range 2.0-4.4.
Anyway, I'll post a new thread with my latest results. I have to wait until I've got decent health insurance before I go to Gimel's suggested physician. I learned more than that, but learning to calculate my results big time helps.
COMMUNITY LEADER
Maybe you need a different beta blocker. I'm on 10 mg atenolol and find that it works best for me if I take it at bedtime, because during the night was when I had the worst symptoms.
I've taken it in the morning mostly but last night I took it at night and pow... no sleep. same with the previous night of severe insomnia.
Reading through the above I agree with what Barb said 100% ... it's not a one-fits-for-all reading labs. I am proof ... labs normal but on Synthroid the TSH is much different and I feel so much better than my own hormone before my surgery and I didn't have autoimmune.
Have you thought about asking for labs at the 4-week mark instead of the full 6 weeks? It would be interesting to see what your labs look like on a stable 25 mcg. After 4 weeks the vast majority of the T4 has stabilized. I'm just feeling a bit cautious about this because you've had so much difficulty in the past increasing.
When do you take your propanolol?
When do you take your propanolol?
I've been on the 25 mcgs for 2 weeks and a day. I do feel much better at times, but not all times... and I am actually beginning to believe that 10 mcgs of propanolol is causing me insomnia and a bit of rebound faster heart rate
How long have you been on the 25 mcg now?
My beta blocker lasts all day (and night). Perhaps you need a dose adjustment or a different beta blocker. I've read that atenolol is the one that interacts least with thyroid meds.
My beta blocker lasts all day (and night). Perhaps you need a dose adjustment or a different beta blocker. I've read that atenolol is the one that interacts least with thyroid meds.
Dear Pewe,
I hope you're feeling better but if still looking for info, I recommend Datis Kharrazian's book: WHY DO I STILL HAVE THYROID SYMPTOMS WHEN MY LAB TESTS ARE NORMAL. He has lots of useful information in his book, including what he calls "functional" as opposed to normal lab ranges for tests. He elaborates on the major influences on thyroid (gut, liver) and vice versa.
Good luck -- Rosamic
I hope you're feeling better but if still looking for info, I recommend Datis Kharrazian's book: WHY DO I STILL HAVE THYROID SYMPTOMS WHEN MY LAB TESTS ARE NORMAL. He has lots of useful information in his book, including what he calls "functional" as opposed to normal lab ranges for tests. He elaborates on the major influences on thyroid (gut, liver) and vice versa.
Good luck -- Rosamic
This question is for Barb also. I slept 8 hours night before last and 0 last night. Since my optimal dose s/b closer to 50mcgs, I'm wondering what you all think of me calling my endo and asking to delay the test in 4 weeks by two more weeks to start to move up to 37.5. If I were to miraculously come in about right at 25mcgs I would be more than suprised. I just don't know how to deal with this insomnia and my beta blockers make me gassy and leave me with a faster beating heart rate during the off times. (propanolol) I suppose that 10 mcgs in the morning means that my body tries to adjust off them after the day.. and if I go for a walk I can't get my resting pulse rate down. I'm miserable.
I never felt hypo.. the anxiety kicked in and never left. I still don't feel real hypo. I think I just need to work on the anxiety and concentrate on getting a stable level of thyroxine in me. I'll follow the doctors advice and try to relax.
I think I need to stop obsessing about things, even with this site. It is never healthy to think about symptoms all day long... I'm out of whack, I need balance.. everything will return to normal God will see to it.
I think I need to stop obsessing about things, even with this site. It is never healthy to think about symptoms all day long... I'm out of whack, I need balance.. everything will return to normal God will see to it.
COMMUNITY LEADER
I did not intend for this thread to get hijacked by a debate regarding the correlation between TSH and symptoms and/or FT levels. My comments were merely to point out that just because our levels may be "in range", doesn't mean we're automatically healthy or feel good or that symptoms are not thyroid related.
This IS a patient support forum, and because of the issues many of our members have, we often find that medical professionals with a "one size fits all", reference range approach are not the real experts, because they leave people feeling sick.
A new thread can be started to debate the pros and cons of treating by reference ranges, whether TSH correlates well, with symptoms, etc if you so choose.
This IS a patient support forum, and because of the issues many of our members have, we often find that medical professionals with a "one size fits all", reference range approach are not the real experts, because they leave people feeling sick.
A new thread can be started to debate the pros and cons of treating by reference ranges, whether TSH correlates well, with symptoms, etc if you so choose.
Good for you! You do not need doctors since you can read statistical data and medicate and cure your self. I was posted just to help someone, do not need anny credibility on this forum, especially not from you, I have enough of that in my "real life". Are you here just to earn credibility ?
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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)