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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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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.
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649848 tn?1484935765
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.
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I guess this is a question to you both. My hope and wish is that I don't have to take a beta blocker forever. I really don't do well with meds. I was humming right along with 50 mcgs.. no tachy. Seems like the tachy started when I lowered my synthroid too much... something I'll never do again. Have you been on Beta blockers for a long time.. for BP or tachy?
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I guess this is a question to you both. My hope and wish is that I don't have to take a beta blocker forever. I really don't do well with meds. I was humming right along with 50 mcgs.. no tachy. Seems like the tachy started when I lowered my synthroid too much... something I'll never do again. Have you been on Beta blockers for a long time.. for BP or tachy? Goolarra, I know you said you think you could probably get off them but the doctor and you felt why ruin a good thing? I myself would prefer to get back to daily running... sleeping like a normal person... not waking up to tachy right after breakfast. I hope and pray that this will just go away at some point... don't like it at all.
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I've been on BBs ever since just after I started thyroid meds, but I have a congenital heart defect that the thyroid meds exacerbated.  I've had tachy all my life; it just got much worse on levo.

I've actually thought about cutting back on the BB because I haven't had a tachy episode in almost two years.  When I asked my endo about that, he kind of said "why mess with a good thing?", although he did tell me I could if I wanted to.  Ultimately, I agreed with him.  I'm really enjoying the lack of tachy.

However, if you've never had tachy before, I think you might very well be able to d/c the BB once your thyroid is stabilized.  You don't want to stop it suddenly, so ask your doctor how to wean off.
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Well, let's just hope the tachy goes away first. The doctor wants me to go slow in adding the thyroxine... I've only had 1 and a 1/2 weeks of 25 mcgs again and I was last stable on 50 mcgs, before anxiety got the best of me and made me bail.
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649848 tn?1484935765
I needed the BB because of tachy even though I'm on another bp med, as well.  After a few months, on the BB, I was able to cut the dosage in 1/2; because of my high bp issues, I'll probably continue to stay on my current dosage, but many people can get off, once thyroid med is stabilized.

We're all so different......it's hard to say.
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So wondering also if you ladies are able to drink wine if you ever had. I used to be a wine maker, enjoyed a glass or two (sometimes more) with my meals. I haven't had any for a month now... just to terrified by the tachy. I was living a dream life... I certainly hope to get back to having an occasional glass with my meals.
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same question to you goolarra.
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I enjoy a glass or two (sometimes more) also.  I never stopped drinking it.  For me, wine did a lot more to make an episode of tachy likely than it did to increase it.  We're all different.  After a couple of glasses of wine, I very seldom had a tachy episode.    
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649848 tn?1484935765
I'm not a big wine drinker, but I occasionally have a glass or two (sometimes more).  I've never had an issue with it.
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I'm not too sure I understand this comment, " For me, wine did a lot more to make an episode of tachy likely than it did to increase it" Does this mean it was more likely to cause an episode or less  likely.
You know what I don't understand. I'm quite hypo and only on synthroid (25mcgs) for 1  1/2 weeks, yet today a very hot day in colorado my resting heart rate was in the 80s to 90s all day... just makes me wonder.. still a very hot day today here in Colorado Springs.
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I'm sorry, I left a word out there, didn't I?  What I meant to say was that after a couple of glasses of wine, an episode of tachy was a lot LESS likely.  

HR can be elevated for a little while until your whole body rebalances.  I envy your heat...I don't think it got out of the 40s here in central Oregon.

Give it a little time...
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I'm sorry but it just seems so hard for me to grasp... higher HR and extreme hypo? We are built so differently.
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Sorry if you did not find my comments supportive, but it was according my 15 y  professional expiriences and work with thausends of patients with different thyroid diseases...And sorry for my Engleash, it is not my maternal langueage...
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649848 tn?1484935765
We don't care about your English.  We've seen a lot of medical professionals declare that something is "not thyroid related", only to find that once thyroid levels got to the right place, symptoms were alleviated.  I've had this happen myself, more than once; in fact, only recently experienced it once again.

The ranges don't fit everyone; and some within the ranges still don't feel well because they are not at the point within the range that suits them best.  Many that fall in the lower 1/2 of the ranges still need adjustment of their med. Many/most find that FT3 has to be in the upper 1/3 of it's range and FT4 in the upper 1/2 in order to feel best and even within those areas, there often has to be adjustments made.

Furthermore, we find that TSH doesn't correlate well with symptoms OR the FT3/FT4.... for instance, my TSH is continuously suppressed and most doctors panic as soon as they see it, and want to decrease my med, but I was actually still hypo.  
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Continuously suppressed TSH can have negative consequences for bones (especially at postmenopausal women) and heart and is not recommanded except in some cases of thyroid cancer after sorgery...It calls latent hyperthyroidism ( not hypo)...
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649848 tn?1484935765
Studies show that it's not suppressed TSH that causes bone/heart problems; it's too high levels of Free T3, which I don't have.  I've actually rebuilt bone lost to osteopenia, by taking calcium/magnesium.

If my TSH were to be brought within normal limits, I'd be taken completely off medication and would be very hypo.  My TSH at dx was 55+, with FT levels below range and as soon as I started on med, my TSH dropped out of sight, even though FT levels did not come up to normal range.  
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There are some patients to whom is very difficult to titrate dose of hormonal medications, but it is possible.
You can not be hypo if TSH is in normal level, it usually means normal thyroid function , presuming that FT4 and FT3 are in normal range too.

And suppresed TSH means that there is to manny thyroid hormons in the boddy ( INCLUDING FT3 wich mostly arises from FT4 in liver and periferal tissue) and all that causes bone lost and other issues...
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I don't know where you are getting your info from, but suffice to say that there are a multitude of scientific studies that are in disagreement with what you have posted.  If you want to seriously discuss your positions on TSH, then I suggest that you go beyond opinions and typical medical dogma and provide links to scientific studies that support what you have said.  

For example, as a start  please provide us just one statistically valid study that graphically depicts that TSH correlates with either Free T3, or Free T4, much less with the more important variable, which is symptoms.  Please note that I can show you plenty of graphical data that prove otherwise.  
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Slept 2 hours last night, very warm skin, very tired today. I can't help but feel that I've been here before and that is why I got off the synthroid in the first place. Is it possible to be swinging already? I feel horrible. I wished someone, anyone could clearly define hypthyroiditis and hypothyrotoxicosis for me. My MD friend is saying that none of my symptoms are thyroid related and my endocrinologist thinks it is mostly anxiety too. :-(
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Many doctors have a tendency to say "it's not thyroid related" once you are in range on labs.  Some of them only look at TSH, some consider FT3 and FT4 as well, but most of them think everyone should be comfortable anywhere in the range.  I actually went quite hyper nowhere near the top of the range, and I'm currently a little below range on FT4 and feeling no hypo symptoms whatsoever.

Refresh my memory, please.  Have you had adrenals tested?
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The last endocrinologist did an serum cortisol but we have not yet received the results back due to the insurance carrier and they way they prefer to process that type of test. The endocrinologist said he didn't think he would find much there, but he ordered it anyway.
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Correct me if I'm wrong here, but didn't you feel hypo on 25 mcg and very hypo on no meds?  Wouldn't that indicate that your problem is thyroid related?
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I think you must have enaugh medical educations to talk at that level and not to missinterpretate scientific studies, otherwise it would be "dogmatic" conversation rather than "scientific".This is "support groups" forum, remember. Expert advices should be left to experts.
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Not when the "experts" base everything on just what they were taught in med school, which cannot be shown as factual, in the case of TSH.

Have a look at this.

http://nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/

If you really want to have any credibility here, you have to provide statistically valid supporting data, not just consensus statements from medical societies.   I sincerely doubt that you will find very many medical people who are experts in analyzing and understanding statistical data from scientific studies.  I do.  Show me your supporting data.
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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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649848 tn?1484935765
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.  





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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.

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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.
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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
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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.  
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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
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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?
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168348 tn?1379360675
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.
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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.
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649848 tn?1484935765
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.
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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.
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You did it right.  You're at 33%.  
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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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649848 tn?1484935765
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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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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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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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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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?
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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.
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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. :-)
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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
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Have you ever looked into Hashimoto's Encephalopathy?  Just curious!   I am supporting you.
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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.  
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