Still tired and frustrated

[gizmoesgirl]

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 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!