Still tired and frustrated

So I have been seeing my endo since May 2012. I have Hashimoto. my endo had me on levothyroxine .025 5 days a week and .050 2 days a week. Everything had been going well. Almost all symptoms were relieved until December. I thought that maybe I was feeling exhausted again because of being busy with the holidays but it was actually because the meds had stopped working. My TSH just about tripled in 6 weeks. He switched me to Synthroid and increased my dose to .025 3 days a week and .050 4 days a week. I have been on this dose for 6 weeks now.  While I don't have my most recent labs back I can tell you that my symptoms have not approved. I will see my endo next Thursday and get my labs then. I will post them once I have them. My question is...is it normal for meds to just stop working and TSH to triple is 6 weeks? Does anyone have suggestions for combatting the exhaustion?mi am so tired that sometimes I can't even concentrate! It's so frustrating.

[goolarra]

Hashi's is a progressive disease...your thyroid is less and less able to produce hormones as time passes.  Your meds increases have to keep up with the progression of the disease.  It sounds like your increases aren't, and your doctor is increasing you very slowly.  Your meds haven't stopped working, you just need more of them.

If I were you, I'd call my doctor for results (be sure to get reference ranges, too) BEFORE your appointment.  Post them here, and we can suggest what you might discuss with your doctor at your appointment to make it more productive.

While it's often a good idea to increase meds slowly to avoid hyper symptoms, your doctor really is moving at a snail's pace.

[gizmoesgirl]

Thanks for the information. I will try to get the test results from them on Monday and post them. Hopefully they will give them to me before my appointment. I think the exhaustion is my worst symptom. But the excessive dry skin and hair loss is getting up there. So frustrating.

[seasideseaweed]

Was wondering if I could get input on latest labs.  Have Hashi's, and started Tirosint 50 mcg(t4 med) 7 weeks ago.  My labs just came back with t3 & 4 and free t3 & 4 at mid normal range but tsh is still at 14.92.  Tsh actually went up a point. Still feel very achey (achy) and tired but a little better.  Doctor wants me to increase to 75 mcg.  I don't understand why my tsh didn't come down at all.  I have an appt with specialist, but not for another 2 months.  I am getting so frustrated with how I feel!!!  Any input is appreciated!!

[goolarra]

Would you please post your actual FT3, FT4, TT3 and TT4 results wih reference ranges?  Also, do you have pre-meds results for comparison?

TSH is a very unreliable indicator and usually becomes more so once on meds.  

[seasideseaweed]

My pre med results.....well past 7 months has been a nightmare.  I have had Hashi for 13 years and was on Levo 175mcg last summer, when went hyper.  We had recently moved and had new doctor.  This doctor decided my thyroid must have corrected itself and took me off meds.  Within the month, went hypo again with tsh around 22.  Started me on armour and was doubling it every 2 weeks.  I became very ill with pneumonia as well as strange symptoms.  Finally saw an endo who stopped armour.  Now tsh went to 30.  The endo put me on synthroid 175.  I became very hyper system wise, but she kept telling me my numbers were still to high.  Ended up in er several times with chest pains, ect.  They told me I needed prozac.  That made things worst.  Started with new family doctor who felt my endo was dosing too high too soon.  We went 2 weeks no meds tsh at 16 and started 25 mcg.  Tsh came down to 13.  None of these drs would check t3 &4.  We then went up to the 50 mcg Tirosint 7 weeks ago.  
Tsh 14.92 (.27-4.20)
Ft4 1.0 (.9-1.7)
Ft3 2.4 (2.0-4.4)
T4 7.6 (4.6-12)
T3 113 (80-200)
Thanks again for your help.  I started increase of Tirosint to 75mcg today.  Just scared I am never going to feel normal again!!

[goolarra]

Your results from 7 months ago, just before your doctor took you off meds because you were "hyper" would be useful to look at, if you have them readily available.  Did you feel hyper at the time, or was he just reacting to your numbers?

Your FT4 is still very low.  The rule of thumb for FT4 is midrange (50% of range...1.3 on your range).  You're only at 12% of range.  The rule for FT3 is upper half (50%+) to upper third (66%+) of range, and yours is only at 16% of range.   You are still very hypo, which is probably why your TSH hasn't gone down.  

I think you definitely need the increase.  Your doctor is moving slowly, which is good, especially since you've had trouble in the past taking too much, too soon.  My guess is that you will probably end up somewhere close to the 175 mcg you took for so many years.  Your doctor might have needed to decrease your meds, but decreases should be made in small increments as well.  Obviously, you should never have been taken off meds since you went hypo so fast after discontinuing.  

If I were you, I'd ask my doctor about shortening the retest schedule.  After 4 weeks, most of the dose has stabilized in your blood.  It's good to go slow, but you also want to get there.  Seven weeks is too long when you're not feeling well and your labs have so far to go.  When you're closer, you can give it a little more time to fully stabilize.  

[goolarra]

I should have explained that midrange means half way between the lower limit of the range and the upper limit, not half way from zero to the upper limit.

For FT4, for example, you figure it this way:

1)  Upper limit - lower limit (1.7 - 0.9 = 0.8)

2)  Your result - lower limit (1.0 - 0.9 = 0.1)

Divide result 1 by result 2 and multiply by 100 to get the percentage
(0.1 / 0.8 X 100 = 12.5%).

[Applecore]

my results are FT3 3.11 (1.71-3.71)  
FT4 1.06 (0.70-1.48)  What would my percentage be on both.  I tried to figure it out and wasn't sure of my results.  I am getting new blood tests today. Thanks if you don't mind.  Linda

[goolarra]

Your FT3 is at 70%:

3.71 - 1.71 = 2.00

3.11 - 1.71 = 1.40

1.40 / 2.00 X 100 = 70%

FT4 is at 46%.

Okay, so most of us would kill for those labs!

[seasideseaweed]

Thank you so much for your info.  My family doctor admits he doesn't know enough about it, but is trying to work with me until I go to specialist.  This makes me feel better to know my numbers show I need med increase.  I am having killer migraines and sweating and anxious since increase 2 days ago.  I think my body is just trying to figure out what to do with increase.
My labs did show hyper last summer.  My t4 was 13.9 (4.6-11) and tsh was .1.  This is too low for me.  I tend to feel best around 2.  Anything lower and I have tremors and tycardia.
Thanks again for info.  I just want to feel "normal" again.....soon!!  And Applecore, yes I would kill for those labs!!

[seasideseaweed]

Sorry, one last question.  Would it be possible to feel emotionally and mentally "off".  Just feel anxious and irritable.  Doctor keeps telling me I should take something for anxiety & depression, but I feel I just need my hypo issues to be taken care off and would be fine.  Never had anxiety or depression before.  Thnx again!!

[Applecore]

I tried the FT4 figures as follows.  Boy I used to be good at math but now I wonder where my brain is.  

FT4 1.06 (0.70-1.48)       my figures
1.48-.70 = .78
1.06 - .78 = .28
.28/.78 = 35.8 x 100 = ?  
When I do this on my calculator and push percentage it does come out 46% but I think I have forgotten how to do percentage.  How does 35.8 x 100 turn into 46%.  
I think I am embarrassing myself but as usual I don't care.  I want to be able to do this without the calculator when my results come in tomorrow.
Is that so that you think these are great numbers.  I do feel most of the time ok but think because of the ride that I have had for over 40 years it will take some time for my mind to catch up with my body.  It has taken a long time for me to get a handle on this.  Thanks to this forum I have come to understand a lot about my thyroid that no doctor really has ever bothered to tell me.  Your insistence on the FT3 and FT4 tests has changed my life.    Thank you all for that and I hope that I can help others by what I have gone through.  Love Linda
seasideseaweed.  When my tsh was 12 just about 2 months ago I had severe anxiety.  When I started back on the tirosent (synthroid) at my regular dose the anxiety immediately stopped.  I started feeling better.  When I changed my endo and he increased the tirosent by 25mg for about a week I had a little anxiety and depression but somebody on here told me that was normal for an increase in medicine.  After that I got better.  I still have had a small twinge, just a split second of anxiety 2 times.  That is enough for me to have to fight fear but because I am so much stronger as my thyroid is good I am able to deal with it and let it go and go on.  That is what I think a good thyroid number does for us.  It makes us able to cope with life a whole lot better.  I still have issues to deal with but am now more able to do so.  That is what I have wanted for a long time.  When everything is out of wack because of the thyroid issues you don't feel like a normal person.  Good luck and I will be praying for you.    Love Linda

[goolarra]

Yes, hypo symptoms can include anxiety, emotional instability and foggy thinking.  

I agree with you.  If you've never been anxious or depressed before and have no reason to be now, then I'd want my thyroid stabilized before taking drugs for it.

You might try increasing more slowly if the symptoms don't go away in a week or so.  I know it's a little harder to get the splits with Tirosint, but I believe there's now a 13 mcg softgel???  

[goolarra]

FT4 1.06 (0.70-1.48)       my figures
1.48-.70 = .78
1.06 - .78 = .28   *this should be your result - lower limit (1.06 - 0.70 = 0.36)
.28/.78 = 35.8 x 100 = ?  (0.36/0.78 = 0.46 X 100 = 46%)

The percent function on the calculator doesn't work in this instance.  You have to just multiply by 100.

You might give it just a little time and see how symptoms resolve, but there is also room for a slight increase if you're feeling like you're not 100% yet.  Those labs are a thing of beauty, however!

[Applecore]

Thanks again for your time.  I think I just didn't get the instructions right.  I didn't hear from the doctor today so he said to continue as I am and he will see me next month.  I asked for a copy of my blood results.  I had him test my cordisol and B12.  He didn't call so they must be ok.  Will let you know the results of my test when I get it.  Thanks again.  love Linda

[seasideseaweed]

Thanks for all your advice/help.  I have never felt this bad before.  I am just ready for this nightmare to end!!  Thought about going with a smaller increase, but that just means longer to get to my goal.  Will just try to deal with it for next week or so.

[seasideseaweed]

Ok it's been 4 days on my increase to 75mcg from 50mcg.  I am miserable!!!  Chest tightness, racing heart, anxiousness and dizzy.  Why can I not tolerate a little 25 mcg increase?  Wondering if I should alternate between 75 and 50 few a couple of weeks.  

[goolarra]

Some of us just have to take it slowly.  I'm very sensitive to meds in general, and for me, a 25 mcg increase would be HUGE.  It doesn't sound like much (those mcg are pretty small LOL), but you just increased your meds to 1 and 1/2 times what you were taking...that's significant.

Ask your doctor first, of course, but alternating 75/50 might help a lot.  Also ask him if you might stop taking your meds for a day or two to calm your symptoms down.  Last time I was overmedicated, my endo told me to stop meds for 3 days, then resume at a lower dose.  See what your doctor thinks of that...  

[gizmoesgirl]

So I could not get my lab results before my appointment today.  However, I did request a copy when I was leaving today.  Below are my labs for the last 18 weeks (I am listing the last three sets so that you can see the change).

10/2012:
TSH 1.48 (.45-4.50) My understanding is this lab is using the old reference range for this. My doctor says it should be .35-3.0)
T4 free 1.2 (0.8-1.7)
T3 free 3.0 (2.0-4.8)
Vitamin D 42.1 (30.1-100)
Thyroglobulin antibodies 109 (<41)

1/3/2013
TSH 3.13 (0.45-4.50) again wrong reference range
T3 total 119 (80-200)
T4 free 1.1 (0.8-1.7)
Vitamin D 44.4 (30.1-100)

2/21/2013
TSH 2.52 (0.45-4.50) again wrong range
T3 total 113 (80-200)
T4 free 1.2 (0.8-1.7)

My endo has not checked my thyroglobulin antibodies and T3 free since October last year so I do not have an update on that numbers.  

As for the game plan going forward he has decided to keep me on the current plan for the synthroid and added Liothyronine 5mcg 2 pills twice a day.  Any suggestion would be greatly appreciated.

[Applecore]

My tirosent was just increased from 50mcg to 75mcg.  The first week I felt worse but after that I started feeling better and better.  My physical body is feeling pretty good now.  It has been 4 weeks.  The anxiety that I was feeling and the depression is also gone.  I still have some anxious thoughts that am working on now that probably have nothing to do with my actual thyroid but because of the ups and downs of trying to get it fixed and the long time it took to finally die(I think it is dead now) and my inability to manage certain parts of my life.  I want to encourage you that it does get better.  The people on this forum have helped me over the years and taught me stuff that I would never get from a doctor.  They encouraged me that sometimes an increase can make you feel worse for a little while.  I am praying for you and that is what has got me entirely throught this and I am so grateful for the first time in my lifetime my thyroid is normal (again I don't know what to call this)   love Linda

[seasideseaweed]

When your tirosent was increased, what kind of worst did you feel? I really really wish I could get to the right dose!!  I am feeling so hopeless about it.  I am back to having sweats and hand tremors and horrible dreams.  I took my increased dose for 4 days and now nothing the last 2, and still feel half mental!!  I can't stand this feeling!!  I am so glad you are at a normal place and continue to pray I get there, but after 7 1/2 months of this, not sure it's  ever going to happen.

[goolarra]

"My understanding is this lab is using the old reference range for this. My doctor says it should be .35-3.0"  Your doctor is absolutely right...0.3-3.0 is a much more reasonable TSH range.  I'd give him 2 points for that comment!

One suggestion would be to insist on FREE T3.  If he wants to run TT3 for him, that's fine, but FT3 really tells so much more.

For what it's worth, your TT3 is low, and it's gotten lower despite your FT4 going up between 1/3 and 2/21.  That's often a sign that you don't convert well.  

I think the T3 is worth a shot.  You might want to split one 5 mcg pill and take that for a while before going to the full dose of 5 mcg X 2.  T3 is more potent than T4, and it can take a little getting used to.  Did he tell you when to take the second 5 mcg dose?

[Applecore]

I have never had except when I was hyper, hand tremors.  My symptoms were extreme exhaustion, my mind running on, body aches, extreme leg cramps, depression.  I had fear and other emotional symptoms.  I was told they were hyper symptoms and I was hypo.  I also had been for all of my life unable to get stabile as they radiated my thyroid and it didn't work and the nodules and thyroiod produced at times and they weren't able to get my dose right.  I think it is finally dead and this is the first time that whatever I am feeling I don't have to wonder if it is my thyroid.  It has taken me a long, long time to get to this point.  The encouragement I have for you is it will happen, you just have to keep on trying.  The Lord has been my strength and help all these years and will continue to guide and lead me as he will you.  I find Him totally dependable and faithful and limitless in his wisdom and knowledge.  The advice you get on this forum I have found to be sound advice and the best you are going to get.  My mom used to say to me, keep on keeping on.  It could be today you will feel better.  Anytime you need someone to talk to you can email me.  I know what it is like to have horrible symptoms, survive and finally have peace.  I just remembered my friends husband had I think symptoms like yours.  Have your checked you parathyroids.  Are you at menopause.  It is so hard to tell what is wrong when the thyroid isn't right.   I will continue praying for you.  God Bless

[gizmoesgirl]

Right now he has me taking two 5mcg once a day and then next Friday he wants me to up it to two 5mcg twice a day. Two in the morning and two twelve hours later. I took the two 5mcg yesterday and I really didn't notice any difference at all. This extreme exhaustion is killing me!

[gizmoesgirl]

Thank you for the words of encouragement! If I can just get through this extreme exhaustion and the horrible night sweats I think I will be ok. Although I did notice that I am far more emotional the last week or so. I hope that passes soon too. LOL I hope all is well with you.

[goolarra]

Most people who take T3 split their dose into at least two half doses.  T3 has a very short half life, so you're apt to have peaks and valleys in levels if you don't split.  Starting out with 10 mcg all at once could be a bit of a jolt to your system and could leave you "crashing" (and actually feeling worse) in the early afternoon.  Did you feel any better yesterday morning for a few hours after you'd taken it?

T3 can also interfere with sleep, so many people find that it's best to take the second half dose in the early afternoon to get them through the day, but usually not much beyond about 3:00 pm so they sleep well.

I also think going to 20 mcg within a week is too much, too soon.  Many people find that 5 mcg (total/day) makes a huge difference.  If it were me doing this, I'd start out splitting 5 mcg into two 2.5 mcg doses, taking one first thing in the morning, one early in the afternoon.  Of course, I'm not a doctor, and you should discuss this with him first.  

Is your T4 dose still 25 mcg X 3 days/week and 50 mcg X 4 days/week?  If that hasn't changed, you could retest in 2-3 weeks (T3 doesn't take as long to stabilize as T4 does) and increase from there if necessary.  T3 is 4-5 times as potent as T4, so adding 20 mcg of T3 is like adding 80-100 mcg of T4.  That's a huge amount to add without interim testing.  Many doctors don't understand that T3 is dosed in much smaller doses than T4 and try to use it the same way.

Your TT3 and FT4 at the moment don't look bad relative to each other.  I feel the dose of T4 and T3 the doctor is suggesting is a really imbalanced (heavy on the T3) combination.  

[gizmoesgirl]

I didn't feel any better yesterday morning than any other day. I thought I would as my doctor explained that the t3 meds could give me a fast heart beat and extra energy but I felt nothing. Even today I don't feel any better. I even went back to sleep for 3 hours after I took it today and could have slept longer except my dogs wanted me up to go outside and play. Yes my t4 dosage is the same .025 mcg x3 days a week and .050 mcg x4 days a week. I was thinking of maybe picking up some b12 vitamins. A friend suggested that might also help with my exhaustion problem. What do you think? Thank you for all you advise and suggestions. I truly appreciate it!

[goolarra]

Yes, you should really have your B-12 tested as well as vitamin D.  Deficiencies of either can have symptoms very similar to hypo, especially the exhaustion.  I would strongly suggest testing first so that once you start supplements you can evaluate how they've affected your levels.  Pernicious anemia (inability to absorb B-12 through the gut) is another autoimmune disease, so once you have Hashi's you're more susceptible.  If you have PA, oral B-12 will not help.  I have a friend who has PA and says the exhaustion from it is incredible.

Ferritin and iron levels are also important for thyroid hormone metabolism.

It can take time for T3 to make you feel better, especially if your T3 has been very low.  

Nothing like a wet nose in your face to get you up and going, is there?  ;-)

[seasideseaweed]

Thanks for the encouragement Applecore.  I feel like I have taken 3 steps backwards since my increase.  Anxiety is so bad.  I do pray, but have lost faith most days.  I am worried there may be a problem with my adrenals, and am worried to death.  I can not tolerate steroids (thought I would lose my mind on them last year) and don't know how we would treat them.  Tried to go for a short trip with my family today and couldn't even tolerate the ride...anxiety was horrible!!!  Back on 50 mcg, so don't understand.  I only took the 75 mcg for four days.  Don't know what else to do.  Specialist is 2 months yet, and Pcp doesn't know what else to do.

[Applecore]

God knows exactly where you are so don't stress over Him.  Believe me He is there to encourage you.  The time will pass and you will get through this.  I know how horrible anxiety is.  Is it helping with decreasing the meds.  Do you take anything for the anxiety.  I did.  I took Klonipin (klonopin), Also took clonazapam.  I have a friend that is taking the Klonipin (klonopin) and is having extreme side effects so that may not be good for you either.  She has sensitivity to meds also.  The clonazapam was a good short term med for me and helped me.  I did a program called The Road BAck to get off of the meds, antidepressant and anxiety.  Actually the anxiety meds I just stopped as I didn't need it any more.  God says commit your way to him and he will direct your steps.  I found that to be true and also Deut. 30:25 in the Amplified Bible says "Such as your day, so shall your strength, rest, and security be".  I used to carry scripture in my pocket and just knowing it was there comforted me.  I also carried a small Bible and would read the psalms.  These are some of the things I did to keep me going.  Is there any way that you can contact the specialist and ask if they have a cancellation to fit you in as you are suffering so.  I will keep praying for your and be encouraged these things come to pass.  love Linda

[gizmoesgirl]

What causes someone to not convert T3 well? I am trying to put a list together to discuss with my endo. Is this all part of Hashimoto? I am definitely going to ask for my B12, free T3 and my antibodies to be tested. Any suggestions for questions I should ask my endo?

[goolarra]

The cause of slow conversion isn't really known.  Since conversion happens throughout the body (but mostly in the liver), it's a separate metabolic process and really has little to do with the thyroid.  My guess is that slow conversion has something to do with taking meds, perhaps the fact that a full day's dose comes swooshing down into you bloodstream all at once, rather than continously throughout the day as your thyroid would produce it.  Just a theory...  Also, the enzyme that catalyzes the conversion of T4 to T3 is a selenium based enzyme, so selenium deficiency could slow it down.

A lot of people convert slowly, the's probably the #1 most frequent complaint we hear on this forum

It's all part of hypo, no matter what the cause.  I've seen people who have had their thyroid removed, people born without a thyroid, people with Hashi's, etc. who had slow conversion.  However, I have never had a reliable source tell me that they were not on meds and had slow conversion.

Be sure your doctor tests both TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies).  Some of us are TPOab positive, some TGab positive and some both.  i just looked up in the thread and see that you've already been tested for TGab, and it was positive.  Did your doctor diagnose Hashi's based on that?

[seasideseaweed]

Ok, question??  Right before I had my labs done was taking 50 mcg of Tirosint.  Had a week I felt great, then a little tired and achey (achy) next week.  Labs showed the low normal t3&4 but tsh was still high.  Had previously posted this.  Dr increased to 75 mcg...after 4 days extremely hyper symptoms.  Stopped for 2 days and dr told me to do 75 three days and 50 four days alternating.  Problem is I have restarted the 50 and still feeling hyper symptoms although my ankles are swelling (whichis usually hypo symptom for me). Why can I not even tolerate the 50mcg now?  Felt so much better before we tried to increase.

[goolarra]

There's a lot going on in this thread, so just let me make sure these are the labs you're referring to:

Tsh 14.92 (.27-4.20)
Ft4 1.0 (.9-1.7)
Ft3 2.4 (2.0-4.4)

For a number of reasons, FT3 and FT4 ranges are very flawed.  So, though "in range", your labs aren't really "normal".  The target for FT4 is midrange (1.3 on your range), and the target for FT3 is upper half to upper third of range (3.2+ to 3.6+).  Your TSH is high, confirming that you are still very hypo.

What are your "hyper" symptoms?  Are you sure they're not residual hypo symptoms?  You said you'd felt good for a week, but the next week you were tired and achey (achy) again.  How long had you been on 50 mcg when the labs were run?  

[seasideseaweed]

Yes they are the correct labs.  Sorry I sorta butted in on this thread.  My hyper symptoms are tight chest with racing heart and palps.  Insomnia and not able to concentrate as well as dizziness.  I do think I am still hypo, but the tirosint (and synthroid) make me feel hyper.  I am going to John Hopkins and seeing one of the top 4 thyroid doctors in the country in a couple months, but can't stand feeling this bad until then.  My labs were done after 7 weeks, and it was week 6 when I felt pretty good.  Was working out walking and amazed at my energy level.  I really appreciate all your advice/knowledge.  

[goolarra]

Considering your hypo labs, my best guess is that the increase was too much for you.  Are you typically sensitive to all meds?  

You took two days off and then resumed taking 50 mcg, correct?  You never alternated the 75/50?  

[seasideseaweed]

Yes, I took two days off and resumed at 50mcg.  And I am very sensitive to all meds.  I can take the lowest dose of Klonopin and cut it in 4 and it knocks me out half the day!!!  

[goolarra]

Believe me, I understand.  I'm hyper-sensitive to all meds as well.  I was arguing with my PCP once about how much medication to give me, and in frustration, she said "That's what we give to newborns!"  Thank you, and that's exactly what "I" need!  LOL

It does take a while for that extra medication to work its way out of your system, but you only took it for a few days, then you took two days off.  So, your levels should be pretty much back to where they were before the increase.  We know you were feeling better then, but you'd started to have some symptoms returning, indicating you needed an increase.

I think the increase to 75 mcg was too much for you.  When I was working my way up, I increased VERY slowly.  25 mcg would have been a HUGE increase for me.  The increase made you feel hyper, even though your labs are I'm sure still very hypo.  You had a bad experience.  However, I think you need to get back on the 50 mcg and then start increasing very slowly.

You could ask your doctor about discontinuing meds for a few more days.  You could try to stick it out...you did take 50 mcg successfully for some time, so you should be able to again.  If you decided on the latter, you could ask your doctor for a beta blocker, which would help with the cardio symptoms.  

I'd hate to encourage you to back down further because with your current labs, it's only a matter of time before hypo symptoms set in again.  Symptoms can cross over and be both hypo and hyper symptoms.  I'm really concerned that your current symptoms are actually hypo symptoms, and they're just going to get worse if you don't start increasing...very slowly.  You had already had a return of some hypo symptoms before the increase, and this could just be an extension of those.  

And I can identify with this, too...do you think there might be a slight psychological fear factor now after your bad experience with the increase?  

[seasideseaweed]

Thanks for your help!!  I am finally today feeling a little better.  I am thinking of doing 75s two days a week instead of three.  I can't stand the hyper feeling!!!  Yes, I absolutely KNOW I have some psychological issues with taking this med...how could I not after what I went through.  I talk myself into taking it every morning at 5:30...lol!!  Although,there was no mistaking the hyper feeling when I increased.  I plan to take a 75 mcg tomorrow.  Wish me luck!!!  Thanks again, oh and what dose did you finally work up to and how long did it take?

[goolarra]

Glad to hear it.  It takes a few days to calm down.

I understand...I'll take hypo any day rather than hyper...hate to feel like I'm about to buzz off the planet!  LOL

You might give yourself one more day (tomorrow) of 50 mcg before going to the 75.

Long story short, after backing off from the 88 mcg starting dose my PCP put me on (nearly killed me) to 25 mcg, I ended up starting a beta blocker, which really helped a lot.  Over a year, I hit every small increase I could split and/or combine pills to achieve (25, 37.5, 44, 50, 62.5, 69, 75).  That's when my endo increased to 81.5, and i went hyper with a TSH around 20.0 (we discovered I had a little pituitary problem)  I was on 75 for several years.  

Just this past year, my labs started to tank (although I was still asymptomatic).  I started to worry that there was a "trend" happening and I'd end up feeling hypo.  So I increased very slowly from 75 to 88.  I started that last February and only got to 88 in November.  BUT, I didn't have a single symptom (hyper or hypo) that whole time.  I guess I know what I have to do...

[seasideseaweed]

Thanks, nice to know I'm not the only super sensative gal!!  My doctor just shakes his head and laughs at me.  I decided to take the 50 and am going to take a 75 this weekend and then mid week.  I am going to be scoped next week due to Gerd (which I know is related to this thyroid mess, but another story) so need to try to stay on track with meds.  Thanks again for sharing.  It has taken me since December to build to the 50, so need to just continue slow, although frustrating!!!  We live at a beach, so I am becoming anxious to feel well for summer fun!!

[gizmoesgirl]

I am not sure my endo has diagnosed me with hashi's but my pcp thought maybe hashi's based on the elevated TGab and i am not sure either one of them has tested for TPOab.  I will have to ask when I see my endo next time.
On another subject, is excessive sweating at night a symptom of being hypo?  When I say excessive sweat I mean I am waking up throughout the night with wet pjs and the damp sheets.  And when I do wake  up like this I am cold (probably from all the moisture on me lol).  I guess this is just another thing to discuss with the endo.  Just so frustrating.  

[goolarra]

Night sweats are a symptom of hypo...you're not alone.  I've never had sweats, but I have had "hots".  I wake up and feel hot and start tossing covers, but my skin still feels cool, and I don't sweat.  Could be thyroid, menopause, age...delightful!

[gizmoesgirl]

Fabulous thyroid issue and menopause! Well I am not sure I am actually going through menopause but man if this is what it is like than I don't want to.

[goolarra]

Consider the alternative!  LOL

[seasideseaweed]

Every since trying to increase, my pulse has been high.  It's been a week and a half since going back to 50mcg, and still every time I fall asleep within an hour or so I wake up with a pounding racing heart. Am also having strange dreams.  I am so tired, but can't sleep.  Could this still be from trying the increase to 75mcg.

[goolarra]

It could be.  Last time I was overmedicated, my endo had advised me to take no meds for three days, then go back to my former dose.  In that three days, most of the symptoms went away, but it was a couple of weeks before I was back to feeling like I did before the increase.

Don't hesitate to check in with your doctor on this.  He might be able to give you something to get you over the rough spots until your thyroid meds get stabilized.

[gizmoesgirl]

I started the T3 meds almost two weeks ago and I was wondering if anyone else that is taking T3 meds has heating regulating issues?  Prior to being on meds for my thyroid I use to have awful night sweats that seemed to get better once my meds kicked in.  However, since I started the T3 not only am I having night sweats again but I am having random hot flashes and sweats throughout the day now. Hot flash and sweats so bad that my clothing is damp. Any suggestions?  I also have a call into my doctor but haven't heard anything.  

[goolarra]

It's probably the T3 doing that.  There's an adjustment period when staring it.  Please refresh my memory...how much are you taking and do you split your dose?

[flyingfool]

I am wondering more about adrenals (cortisol) related to the night sweats.  As we know cortisol fluctuates significantly throughout the day.  This could be some reaction to adrenal fatigue and the adrenals trying to get balanced out with the now introduction to new medication and new dosage levels.

These hormone things are complicated. And it is like dropping a stone into the center of a pail of water. The ripples not only go outward in all directions, but they also reflect back from the walls of the pail and keep doing that. But over time the ripples get smaller and smaller and go away.

Are you experiencing the first and thus largest waves of this ripple affecting all the other hormones and adrenals and getting weird reflections back?

Just trying to explain a possibility.

Also worry and stress has a significant factor on the creation of reverse T3 and thus some effect on conversion.  So the more you worry the more that could contribute to the conversion issue.  On the other hand, that would tend to cause you to be more Hypo then your labs would otherwise indicate, not Hyper like you seem to be experiencing.

It is interesting that you seem more hyper sensitive to T4 rather than the T3. The exact opposite that most people experience. But that is why they call us unique "individuals".  Because not everyone reacts the same.

With your sensitivity, I was wondering if any thought has been given to try Armour or another natural dissected thyroid med?  I wouldn't necessarily recommend the switch now until you give a little more time to try to sort it out on the track you are on now. But if that doesn't work out, that is another avenue to  try.

[gizmoesgirl]

I am taking 10mcg twice a day.

[gizmoesgirl]

I don't understand what you mean when you say I seem to be more hyper sensitive to t4 rather than t3. Additionally, before I even started treatment my endo did adrenal testing which came back within range. Could it be different now? Is that something that could change within less than a years time?  I think the sweating may be a side effect of the T3. While i had the sweats before starting treatment they had pretty much gone away once my the was around 1.2 until about December when my TSH just about tripled. We are still working on lowering my TSH again and thus the addition of the T3. I am hoping that once I adjust and get my TSH lowered again the sweats will go away again. My doctor has not armour or anything like that with me. Does it work better? What is the difference? I have an appointment coming up in the beginning of April so maybe I could discuss it with him.

[goolarra]

So, you've been on T3 for a couple of weeks now, and you just increased from 5 mcg twice a day to 10 mcg twice a day, correct?

If I were you, I'd call or see my doctor and get blood work done.  As I said above 20 mcg a day is a hefty dose of T3.  I think you've either increased too fast or you simply don't need that much T3.  Of course, I'm not a doctor, so you should talk to him about this.  Ask him about staying at 5 mcg twice a day (or even going down to 2.5 twice a day if you were alreading having temp problems and sweats on 5 twice a day) until your body adjusts.

[gizmoesgirl]

I increased from 5 to 10 just over a week ago.  Thank you I will discuss this with my endo at my appointment. Again I appreciate your help!

[gizmoesgirl]

Ok, so I had my follow-up appoinment and got my new test results:

TSH 1.17 (0.45-4.50)
Total T3 207(H) (80-200)
T4 0.8 (0.8 -1.7)
Vitamin D 43(30.1-100.0)

So from February 21 to last week my TSH went down( it was 2.52), my T3 went way up (it was 113) and my T4 went down (it was 1.2).  I really wish we could get this figured out.  I am SO tired all the time and grumpy.  :(  He forgot to call in the B12 test so we will do that one in 6 weeks with all the other labs and he said he is not going to test for TPOab as I already have elevated TGab  and there is nothing to do about them being elevated.  Any suggestions for my next visit?  What do you think about Armor?  I have read different things about it.  Please also note that he was concerned that I might be having hyper symptoms now but I do NOT have hyper symptoms they are still definately hypo symptoms.  He did switch my meds around tho.  I am now on 50mcg of levothyroxin (levothyroxine) 4 days a week and 25mcg 3 days a week with 20mcg of the T3 meds and 4000mg of vitamin D.  I hope this helps!  I am tired of being tired all the time and now my husband is getting grumpy about me falling alseep during the day on the weekends.

[goolarra]

Was there a meds change around 2/21 before your TSH went down, your T3 went way up and your FT4 took a tumble?

You take 50 mcg levo 4 days a week, 25 mcg levo 3 days a week and 20 mcg T3 every day, is that correct?  What were you on immediately prior to these labs you just posted?  Do you split your T3 into more than one partial dose?

[gizmoesgirl]

The only med change on 2/21 was the addition of the T3 medication. Prior to this i was only on the levo. There was no change to my Levo dosage. You are correct about my dosing. Yes I split the 20 mcg of T3 into to doses throughout the day. I am so fustrated with my labs. We have not been able to get my labs stable since December. Prior to December I was pretty stable and symptoms were pretty much gone.  They are back and in full force. Since January I have had three episodes of severe vomiting and shakiness the doctors can not figure out what is causing it but I think it is from my hashi's. I think I am getting so exhausted by the end of the week that my body is just shutting down. The doctors don't agree but it is the only thing that I can think of.

[goolarra]

I have to say that I'm at a bit of a loss.  With no change in your T4 meds, only adding in the 20 mcg of T3, your FT4 tumbled just a little under half of range.  Your FT3 went up a lot, but that's to be expected with the addition of 20 mcg of T3 meds.  FT3 is the test that correlates best with symptoms, so you really shouldn't be feeling hypo, except that the balance of FT3 to FT4 has to be right.  Yours is way out of balance, with FT4 flat on the bottom of the range and FT3 over the top.

My first question would be about absorption.  Is there anything at all different in the way you take your levo?  Have you added any other meds or supplements since 2/21 that could be blocking absorption?

My next thought is that your Hashi's is suddenly going like gangbusters, and you are losing thyroid function fast.  This frequently happens:  the thyroid doesn't decline on a nice, even slope, but dies off in fits and starts.  Your levo dose has been pretty low.  200X4 and 25X3 averages out to only 39 mcg per day.  That's nowhere near total replacement.  

If I were you, I think I'd be asking my doctor to increase T4 meds.  You'll probably have to decrease T3 at the same time or you will start feeling hyper since TT3 is already over the top.  Given the different characteristics of the two drugs (it takes T4 a while to build in your blood when you increase, but the effect of decreasing T3 is much more immediate), you might want to start the increased T4 a week or so before cutting the T3 down.  

[flyingfool]

The labs seem totally out of whack/balance.  Just about the opposite ratio is what is generally needed to feel well.

This is only my opinion. But you are on a roller coaster of hell.  Mostly medicine induced.

In my opinion, you are on far too little T4 and on far too much T3.  Your body is generally Hypo but you force yourself into short bursts of hyper by the larger doses of short lived T3.  You ramp up with the T3 and come crashing down after it is used up.

Your body may be sensing the T3 available and that is what is keeping your T4 levels down as your pituitary is sensing plenty of T3 available.

But since the T3 is so short lived your pituitary can't react that quickly.

In the end I would recommend significantly reducing the T3 dosage and increase the T4 dosage.  The actual dosage amounts should be worked out with your Dr.

The general or more common approach to medicating low thyroid is to start with only a T4 medication. And increase dosage slowly.  When the FT4 gets to about 50% of the range and your FT3 are still below about 66%, THEN the addition of T3 is added. Again in low dosages and slow increments.

This common process is about exactly the opposite of your history as best I can determine by quickly scanning the long thread history.  And the result is a balance of T4 to T3 that is about exactly opposite of what most people seem to feel well at.

[gizmoesgirl]

I have not added any new meds nor have I changed how I take my Levo.  I am at a complete loss. I really am fed up with the complete and utter exhaustion. Today it felt as though my arms where 100 pounds each every time I moved them. So frustrating! I don't see my endo again until June 18. I'm not sure I'm going to last that long with the symptoms.

[goolarra]

Don't hesitate to try to see him earlier.  If he can't do that, perhaps he'd call in a new script for you in the meantime.

Forgive me if I repeat myself, but have you had vitamin B-12 tested?  How about iron/ferritin?

[gizmoesgirl]

No I had asked for those to be tested last time but they "forgot" to order them. They will be tested next time he says.

[goolarra]

As long as you're at it, ask for vitamin D as well.  I always ask the phlebotomist what they're testing when I go to have my blood drawn just in case they "forgot" to order something.  

[gizmoesgirl]

My vitamin D was low last time so he had me increase my dose from 2,000 to 4,000 daily.  I am sure he will be testing it again in June.