Thyroid Disorders Community
Still suffering
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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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_f_tn
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_f_tn
As long your thyroid hormones are in normal range your problems are not caused by thyroid dysfunction. I think you should contact psychiatrist because of anxiety problems. It is not necessery to chek antibody if immunothyreopathy is once diagnosed.
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Avatar_m_tn
Moonlight, I have to disagree with the idea that if your thyroid hormones are in the normal range, your problems are not caused by thyroid dysfunction.  the ranges are far too broad for that to be the case.  the ranges are based on the total population of patients that are tested and then the assumption is made that about 2.5% are hypothyroid and 2.5% hyperthyroid.  Obviously there are many, many more hypothyroid patients than that.  

For that reason the AACE finally revised the range for TSH, over 8 years ago.  Unfortunately they did not also revise the ranges for Free T3 and free T4 at the same time as TSH.  If these ranges were   also revised, the new ranges would look more like the upper half of the current ranges.  That is why we hear from so many members, myself included, that symptom relief for them required that Free T3 and Free T4 had to be adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.

Pewe, it is unfortunate that your doctor at the time when you were feeling good decided to raise your meds, based on your TSH.  TSH is totally unreliable as a diagnostic by which to regulate your thyroid meds.  At best it is an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4.  Your history reminds me of another of our members, goolarra, whose doctor kept trying to raise her meds based on TSH and she says he almost killed her.  So she does well with her Free T3 and Free T4 at lower levels than most of us and her TSH above range.

If she notices this thread I'm sure she will give you some good info.  Otherwise, send a PM and ask about her experiences.  
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Avatar_m_tn
Wow, nice comments, I thought this group was supportive. For your information I did see a psychiatrist in my early days no problems.
What was it you were trying to spell here, because I can make no sense of it. I think there are plenty members of this community who have had antibodies for hashis with antibodies for TSI as well that would indicate hypo hyper like symptoms. I thought that's what toxicosis is about? I was wondering if the same toxicosis people have had to have RAI, or TT, or perhaps use AT therapy. Or perhaps some of you just waited to settle back down to hypo and continue using smaller doses of synthroid. I would like this option, but I would like to know if people suffer from the same problems. I do not doubt that anxiety is playing a role in it. But isn't that a characteristic of hyper symptoms anyway?
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Avatar_m_tn
Thank you for your supportive words. I didn't get a sense for whether you or the person you referred to came up with antibodies at one point and suffered from hypo symptoms at some point. I should have had my TSI tested to know if I've got some graves going on at the same point. My mom has graves and even though she has undergone RAI many years ago, she still struggles.
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Avatar_m_tn
sorry in my previous point I meant to say hyper not hypo when talking about coming up all of a sudden with hyper symptoms.
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649848_tn?1357751184
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....
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Avatar_m_tn
Thank you for your comments
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649848_tn?1357751184
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.
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Avatar_f_tn
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.
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Avatar_m_tn
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.
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Avatar_m_tn
Sorry, I understand the need, thank you goolarra for your comments.
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Avatar_m_tn
So do you still take beta blockers? Have you been able to discontinue those?
I was taking beta blockers just up to a few days ago, but I don't have this issue at home and prefer not to take them unless necessary. I also find that a half of a klonopin low dose tab keeps the anxiety and the tachicardia at bay.
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Avatar_m_tn
By the way, over the years I have functioned quite well at 2.5, 3 and 4.5 TSH after my gallbladder was out 1 appears to be my breaking point. Increases stress and anxiety to the point where I now have panic disorder again, along with tach. I am thinking if I just get my anxiety down with Klonopin I might be able to get myself to settle down in the hypo range again and start adding synthroid.
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Avatar_f_tn
I do still take beta blockers.  About a year ago, I mentioned to my endo that maybe I could d/c them.  He said, "Why mess with a good thing?", and I had to agree with him.  Everyhting is so good that I really don't want to rock the boat.

I'm not sure I'd prefer klonopin to beta blockers.  Beta blockers have been around fr over 50 years, so their side effects are known to be few, and their long term efects have been studied.  Do you have an adverse reaction to beta blockers?

Your labs don't look bad right now.  Your FT4 is a little above midpoint of range, and your FT3 is a little on the low side, but not a conern if you were feeling well.

What are your current symptoms again?  And why do you want to go back on meds?  Those labs were not on meds, correct?
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Avatar_m_tn
These labs were on 50mcg. Please read original post. Even at 50 mcg my tsh was getting closer to 1 and I had panic disorder. I'm completely off synthroid now. For a while there I still felt like panic and excessive thyroxine was still happening, but today has been the first day in a long time (3 weeks off synthroid) that I felt tired. heart rate hasn't slowed yet like hypo slow, but were still working on it. Beta blockers handle the anxiety adequately but my blood pressure is really low at night and I do have a problem with hypo tension if I'm not taking these for HBP. Klonopin makes me tired but it handles the panic disorder/ anxiety and most of the heart issues. I guess I asked because I was afraid that I have been both hypo and hyper at the same time...is this even possible?
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Avatar_f_tn
I have read your original post...more than once.  There's a lot of information there, and details can be important.  Forgive me if I'm redundant, but it's better than misinterpreting.

It's really not possible to be both hypo and hyper at the same time, but there are a couple of things that can make it feel like that's what's happening.

Hashi's (usually in the early stages, which wouldn't seem to be the case with you since you were diagnosed 25 years ago) can have swings back and forth from hypo to hyper, causing hyper symptoms for a while, then hypo.

Many symptoms can "cross over".  They're symptoms of BOTH hypo and hyper for some people.  Panic and anxiety are two symptoms that frequently cross over.  They seem to be a symptom of a thyroid imbance in either direction.  

So, you're starting to have other hypo symptoms now as well, so you need to start meds again.  You've been on 25 mcg previously and still had hypo symptoms.  You seem to have stabilized several times on 50 mcg, but that eventually got to be too much for you.

"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."

What was your FT3 and FT4 on 50 mcg when your TSH was 3.75?

By "bad shape" do you mean you were felling hypo again or hyper or having more panic and anxiety?  What were your actual FT3 and FT4 levels when your TSH was 2.5?

Please include FT3 and FT4 reference ranges.  They vary lab to lab and have to come from your own lab report.  

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Avatar_f_tn
Sorry, I just realized that the labs you posted above were the labs where your TSH was 2.5.  Please ignore that question.  You also don't have to post reference ranges if they're the same.

I just noticed this also:

"My FT3 was a little to the middle to middle high range, My FT4 was the same."

You're not calculating this properly.  In order to find where in the range you are, here's what you do.

upper limit of range - lower limit of range (4.2 - 2.3 = 1.9)

your result - lower limit of range (3.1 - 2.3 = 0.8)

divide second result by first result (0.8 / 1.9 x 100 + 42% of range

Your FT3 is actually quite a bit below midpoint, not "middle high".  This may not even be significant, just wanted you to know for future reference.
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Avatar_m_tn
My doctor thinks I've lost my mind so he refers me to the office PA from now on. The PA has never always ordered Free T3 or Free T4 and I haven't been dilligent about asking. (mistake no. 1) So I really don't know what these values were at that moment inquired above. Since I didn't have a TSI test some people suggest that you can be both hyper and hypo because of a TSI spike, which I did not see because we had not test. Is this actually possible, a army internist friend of mine said that is not likely because thyroid hormone sythesizes over a period of time.
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649848_tn?1357751184
You can have both Graves and Hashimoto's, but you can't be both hyper and hypo at the same time; you're either hyper or hypo, depending on the symptoms you have, and/or hormone levels, at any given time.

As goolarra said, some symptoms can "cross over" and be present with either.  Panic and anxiety, along with fatigue/exhaustion are some that do apply to both.

I, too, have anxiety, which is due to circumstances beyond my control, rather than thyroid related. I also take a beta blocker, which does not control the anxiety, for me.
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Avatar_m_tn
How do you control the anxiety Barb?
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Avatar_f_tn
As Barb said, you can have both the antibodies for Hashi's and the antibodies for Graves'.  However, at any one time, one antibody is dominant over the other, and you're either hypo or hyper.

"The PA has never always ordered Free T3 or Free T4 and I haven't been dilligent about asking. (mistake no. 1)."  

I think you've hit the nail on the head.  You and the PA have been adjusting your meds based on TSH.  In my experience, that's a recipe for disaster.  My TSH doesn't track my FT4 at all.  Sometimes, my FT4 will be up, and my TSH will be, too.  Sometimes they're both down.

My first suggestion would be to be sure to have FT3 and FT4 tested every time you have blood drawn.  You know that.

It seems that 25 mcg was too little for you and 50 was too much.  But you need to get back on meds because you're starting to have hypo symptoms again.  If I were you, I'd ask my doctor about starting again on 25.  If 25 still leaves you hypo, why not try 37.5 or 44 instead of jumping directly to 50?  Don't get hung up on your TSH, but keep track of how your symptoms change as your FT3 and FT4 rise.  Going from 25 to 50 and back again doesn't sound like a lot, but it's doubling your dose, then halving it.  That's too big a change for thyroid meds.      

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Avatar_m_tn
I've been told that I must wait for the full 6 weeks to let my thyroid re-calibrate and we'll test again, by then I will see the endo specialist. I don't know that I am hypo at this time and am quite frightened of self medicating without some labs. Really at this time, I seem to still have a lot of anxiety, a very busy stomach, multiple bathroom stops. heartrate is still fairly fast most of the time. (of course I still exercise) I'm sensitive to both too much heat and too much cold, I figure anxiety is still having it's way with me. I'm pretty miserable... but there is hope.
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Avatar_m_tn
and and no weight gain.
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649848_tn?1357751184
Because my anxiety was due to things beyond my control, totally unrelated to thyroid, I'm currently on an anti-anxiety med, but I do find that exercise helps a lot..... my favorite at the moment is walking, because I have a winter neighbor who loves to walk as much as I do..  I also find that yoga helps control the anxiety, but unfortunately, I find it hard to fit an hour or more of walking + 40 minutes of yoga into my time...... you might try one or the other.

With Hashimoto's, it seems unlikely that your thyroid will "re-calibrate" because the antibodies are continuously destroying thyroid tissue, causing your thyroid to produce less and less hormones......
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Avatar_m_tn
I also noticed from your post that 25 mcg seemed too little, and 50 mcg seemed too much.  Which Goolarra pointed out as well.  I think that may be a pretty good information to take into consideration.  

You may want to talk to your Dr about considering either a Prescription of 37.5 mcg, or  alternating one day taking a 25 mcg and the next day taking 50 mcg which would average out to 37.5 mcg per day.  Just something to consider with your Dr.

Multiple trips to the bathroom is usually more associated with hyper, but my wife for one is certainly hypo at the moment and she has this symptom.  So just like everything else, some symptoms can be as independent as the differences between individual people.

I've read that being susceptible for one auto-immune condition such as Hashi's may make one more likely to have other auto-immune conditions which would, or could include Graves.  So having TSI tested couldn't really hurt just to check.
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Avatar_f_tn
I wasn't suggesting you self-medicate, just suggesting some ideas you might discuss with your doctor.

While it can take up to six weeks for meds changes to fully stabilize in your blood, the vast majority has stabilized after four weeks.  So, when meds are being actively adjusted, a four week schedule can move things along a little faster when you're not feeling well.

I agree about the multiple bathroom trips.  Constipation is just not me, and even when my TSH was 60-something, it wasn't an issue for me.  

Will she order a TSI this time?
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Avatar_m_tn
So after another visit to the emergency room after running and having a supertachy experience with PVCs and PACs a consultation with the Dr. indicated that I am severly hypo off the meds and I need to get back on. I resumed 25mcgs 2 days ago. My TSH at the hospital was 15.4 and my Free T3 was low range 2.3. I'm feeling a bit better after 2 days of sythroid, but still having a bit of instability in my swings from low to high with my heart rate. Beta Blockers help. I finally got in to see the endo and he said that he felt that most of the symptoms were anxiety related, but that I needed to get back on the synthroid and increase slowly this time. I think I'll go for a second opinion anyway. I'm thinking that my tachy episodes have been related to my hypo condition.
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168348_tn?1379360675
Sounds like you got good care in the ER and they have figured everything out.  I cannot imagine how scary it must be to have your heart race like that along with being pretty hypo.

Keep us posted ... C~
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Avatar_f_tn
I agree with your endo.  Your labs show that you're hypo.  Some of us (myself included) found we had to increase very slowly.  I think I hit every level possible between 25 and 75 mcg.  I split pills; I combined pills; I alternated.  Amazing how many non-standard doses you can create...

It will probably take your HR a while to calm down.  Changing doses in big increments and stopping and starting really messes with the heart's electrical activity.  I've found that once on a consistent dose with consistent free levels, my arrhythmia is the best it's been since I was a kid.  BUT, it took a while after all that got consistent before my tachycardia settled down.

Beta blockers saved me...I'd never have been able to tolerate increases without them.  Do you take them consistently or as needed?
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Avatar_m_tn
Right now consistently during the workweek, as needed on weekends, or smaller doses.

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Avatar_m_tn
So after much prodding I finally got my TSI results.
Lab info says <1.0 with range <=1.3. I assume this means I have
no graves activity?
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Avatar_f_tn
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.  
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Avatar_m_tn
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.

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Avatar_m_tn
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.

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Avatar_f_tn
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.
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Avatar_m_tn
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?1357751184
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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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_m_tn
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?1357751184
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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Avatar_m_tn
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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Avatar_m_tn
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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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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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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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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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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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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Avatar_m_tn
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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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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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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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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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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