new labs - depressed again

[Brucergoldberg]

waiting for the hard copy but

last month 235 mcg t4

tsh  34.89   (range  .40 - 4.50)
t4 free  1.0   0.8-1.8
t3 free  2.4  2.3-4.2


so they bumped me to 255  and 5 weeks later i get this

tsh 25.25
t4 free 1.1   0.8-1.8
t3 free 2.6    2.3-4.2

She has me on 280 mcg t4 now.  Says at this rate ill probably be on 300 mcg.  

It is so discouraging in one aspect, but i still feel pretty crappy so i guess i should be thankful that my labs didnt come back perfect, right?

[Brucergoldberg]

Thank you so much.   The ringing has gotten a little better for me since my labs have gotten better.   I am at a cross roads now that i know why im on a massive dose of t4 and cant get any relief.   The meds have the slow release t4 in it and i didnt know that i should not be taking a slow release t4.  I kinda screwed myself on this one, but at least ive got some working in my system now.

The thing that im confused on is to where to go from here.   the 280 mcg t4 slow release needs to be NON slow release.  But im afraid if i take 280 mcg (not slow release) im taking a chance of probably giving myself a freakin heart attack.  So im going to my dr. again this week and i know she will be mad at me for coming back so soon to question her on "slow release t4"  and i might end up having to find a new dr. after this week.  

Thank you for writing about the t3 suggestion though ;0

[artfemme]

Hey Bruce,

I've been thinking about you a lot over the past few weeks, especially since all of a sudden my ears started ringing like crazy and waking me up after I had to stop T4. Dang it, I hadn't even THOUGHT about tinnitus for almost 4 years since I went on a combo of T4 and T3 and it stopped within a week. I can't even tell you how much money I spent with fancy neuro -ENTs over a couple of years back before I basically self-diagnosed w/ hypo and then they found nodules after telling me I was crazy for a few years. Normal TSH, donchano. Free T4 "in range" at the bottom. No Free T3 test for years, when SURPRISE ! it was super low. Obvious tissue problem. which, of course, those endos said doesn't exist. Phooey and thank goodness for my PCP.

Anyway, I know you've had a terrible time trying to take T3, but I just thought I'd let you know what's happened to me recently in case it jars something for you. I was originally on 50 mcg Synthroid just to "suppress the nodules" at the end of 2008 and ended up in the hospital w. edema, extremely high blood pressure and cholesterol, and suicidal depression. I was so pissed off at the endo who disregarded all my massive symptoms like 40 lbs weight gain and extreme hair loss etc., so I persuaded my PCP to give me some T3 too. She added 25 mcg Cytomel all at once. I don't know why she did that, but lucky me, I immediately recovered ! That was in early 2009. I had the bad judgement to try to go on Armour after that (to be "natural") and crashed. Then I was put back in the hands of a series of endos who tried to take me off meds entirely or at least get me off T3. Every time I would have an immediate return of symptoms to the point where even my PCP was disgusted with them. I had a 24 hour urine test for cortisol, which came back slightly high out of range, but I was told not to worry. HA. I had been under the worst stress you can imagine....I got a grant for mental health care as a victim of violent crime for instance, and was in back to back lawsuits for 6 years including for the mold in my loft. I had super low white blood cell count and my lymphocyte count was low too, but nobody said doodly about it even after I got the lab results back (2007).

Anyway, I adjusted my meds by FREE tests until they were up in the recommended ranges but I never felt as good or had less symptoms as I did when I was on the weird dose of 50 mcg T4 and 25 mcg Cytomel. And recently, almost 4 years after I went on T4/T3, I started to have hypo symptoms again on 150 mcg generic T4 and 30 mcg Cytomel. I couldn't lose weight no matter what, I had so much edema my feet got blisters from wearing shoes that had always fit before, I felt depressed, I got dyslexic typing. But when I really got worried was when I started getting spastic toes and cramps in my arches....I had not had that since before I was on meds.

I had rT3 tested about a year ago because I just didn't think it was right that I was on MORE T4 and felt worse, even with the good FREE range results for both hormones. My PCP doesn't know squat about rT3, so when the test came back within range, even though the ratio was 16, I thought it must be OK. But now, a year later, I asked to have it tested again and it came back not only high out of range but also the ratio was 10....very bad. Apparently the ratio is supposed to be 20 or above.

My feet looked like red marshmallows and I hadn't seen my ankles for 6 months, amongst other things. When I complained about the edema, I was told to see a vascular surgeon. So when I got the rT3 test back, I immediately stopped taking T4.  I had a huge bottle of generic t3 that Express Scripts had shipped to me because even though my PCP had written the script for Cytomel (I had bad results w/ the generic, made me go hyper at same dose) they shipped generic and refused to take it back. so at least I had extra T3 to supplement with as my T4 fell. I started to feel the need for extra after about a week. I don't know how to explain the feeling when I need more...a weird kind of anxiety at the cellular level I guess. But the edema went away after about 4 days. Unfortunately, that's when my ears started ringing too. It just keeps getting louder, and now it's waking me up in the morning. But about 15 minutes after I take Cytomel or T3, it lessens, so for the meantime I've decided to try to think of it as an internal alarm clock. From taking 30 mcg Cytomel as my regular dose, (which I've always taken at one time in the am because when I split the dose I didn't feel any different) I have now worked up to an additional 10 mcg in the afternoon and an additional 10 mcg in the evening. I'm pretty sure it's not enough, but I'm trying to be conservative until I find someone to help me.

After WEEKS of searching, someone in Kansas finally had a suggestion of an endo in Van Nuys (near to me enough)  who treats her friend with T3 only and is covered by my insurance. I spoke to the office and he seems to know about rT3, which is a plus already if it's true.This is a miracle because every endo in Los Angeles toes the AACE party guidelines against T3, rallying around the study done by the head of the endocrinology department at UCLA and  funded by Abbott Labs. (Synthroid)

Anyway I am having new labs drawn next week and when I get them back, I'm going to see him. It will be interesting to see if I have a TSH, once off T4, and what my FREE T4 will be. And I'm seeing an immunologist tomorrow, even though my Hashi's antibodies are normal. My sister has it. And I have enough signs that auto-immune is involved somehow, Hashi's or not. For instance, pernicious anemia.

So maybe you'll glean something from all this, you never know. It's just that you have persistently complained about tinnitus for years, and it was curious to me that I got it immediately after stopping T4, and that it fluctuates with dosing myself when I get low.

I also thought to tell you that the woman from Kansas who found the doctor for me (crosses fingers, knocks wood) had similar symptoms and bad diagnosis to yours and suffered for years before they removed her thyroid, and even then was sick as a dog. She has found through trial and error that she can ONLY take T3...a tissue resistance problem I guess...but she is super sensitive like you, so she has to take little doses throughout the day. And a time release didn't work for her because she needs different amounts at different times of day, according to her Circadian cycle.

Geesh this is complicated. Hope I didn't bore you to death. Just wanted you to know that the ear ringing thing definitely is related to under-medication, at least in my case.

All the best.

[Brucergoldberg]

yep....  and thus the reason i am screwed.   Only took 7 mos to figure this out.  so now im on 280 mcg slow release t4.  I have no idea what to do now as obviously if they take the slow release part of it out i will no longer need 280 mcg.   calling doc tomorrow.   Isnt life great?

[goolarra]

Slow release T4???  T4 is so slow acting that by its very nature, it IS slow release already.  It's the original slow release system...

[kl42]

try milk thistle  helps cleanse the liver  help you convert better.

[Brucergoldberg]

Now im thinking out loud.  It has to be the slow release.  Has to be.  I drink milk during the day.  I eat during the day.   has to be this.

[Brucergoldberg]

im on a slow release t4 only.  Im wondering if the "slow release" is what is hindering my progress?

[Totie]

How about something part time to get you out of the house.

My twin sister has a current TSH of 60.47 due to having to take RAI for graves/hyper.

She says working is the only thing keeping her sane mentally...and from being depressed..She also has two young boys (13 & 7), She refuses to let thyroid issues stop her from being a mom/sister/friend & employed. Yes she feels like crap, but she says work keeps her sane...

[kl42]

i think you have to get that free t3 at least half way point to feel a difference. you might feel tremendously better at that point. you have alot of room to boost that up.

[Brucergoldberg]

well im on 280 right now and honestly i feel like i need to be on 380.   I dont feel a ton better than i did when i started this 7 months ago.  There is marked improvement, but there is no way that im going to feel better from the way i felt on 255 vs 300.  Im going to have to convince her to give me more than 300 if it gets to that with symptoms and low ft3, 4  and also possibly low tsh.  

I just dont want to switch to synthroid on tirosint and have to start this all over again.  I have almost 8 months invested in this and im walking a straight line.  You cant say i change meds as i have been strict in regimin, the only change being after the 5 week blood test.  

[goolarra]

I mean that some of us (me!) are very happy, healthy and symptom free both lower (me!) in the ranges and higher (most of the people on this forum).  I'm fairly unique on this forum, but I don't think I'm all that unique in the general population of hypos.  People like me pop into the bottom of the ranges, they feel good, their doctos are happy, they're happy, they don't end up on forums.  Midrange and upper third of range are guidelines until people find where they feel well; they're not hard and fast rules for everyone.

I think there's a definite chance it could happen lower for you.  

This is the only part of your game plan I don't care for:  "increase until the tsh is in range..."  Forget your TSH.  Concentrate on FT3 and FT4.  Better yet, concentrate on symptoms.  

I don't know why 300 mcg is another of those magic numbers.  Who cares how much you're taking?  If you're taking a megadose, and your FT4 is still low, then something is obviously happening to all that T4 you're taking before it hits your bloodstream.  So, take more until enough is absorbed.  

[kl42]

Alot of doctors believe if you are at 300  and not getting good numbers then it's a conversion problem. Maybey that's were they will add in cytomel if needed to boost up that freet3 but with a tsh of 25 they'll still increase you as you have a long way to go. and alot of room to improving those numbers.   still lokks like you need to build up that freet4 so you can convert more t3  , so it look like a bigger dose might help.

[Brucergoldberg]

what do you mean by this -

"However, don't assume that YOU will be at the "magic" midrange for FT4 and upper third of range for FT3 when your symptoms go away."

do you mean i might need to go HIGHER, or there is a chance it will happen lower?

here is my game plan in a nutshell:

increase until the tsh is in range and the ft4 is in good range.   If the ft3 doesnt move high enough my doc will add in some cytomel which i already have.  But before i add in the cytomel, she wants to maximize the t4 compound hormone as much as possible.

---------------------

2ndly-   why would she tell me if i need more than 300 mcg t4 that she will not prescribe it?

[goolarra]

I'm not saying you don't need to increase.  You need to increase until you are asymptomatic.  However, don't assume that YOU will be at the "magic" midrange for FT4 and upper third of range for FT3 when your symptoms go away.

[Brucergoldberg]

I dont have a choice.  IM too tired to work. Im a walking zombie half the time, have a hard time helping my 11 year old with her homework.  Would you want me as part of your management team?

im not stopping, im marching forward but its frustrating.  What happens if you hit 300 mcg and still need more?  then what?  My dr. said the most she will give is 300 mcg t4 - then she releases you as a patient to seek help elsewhere.   Is there a law about giving more than 300 mcg t4?  what if i need 400 mcg?  then what?

[Totie]

It takes a while and then some..

19yrs later after TT, still having the dosage issue. However, boredom was the reason I never stayed home..I would have gone crazy...

[kl42]

my labs were just like yours 2 years ago i was on 300 and i had a tsh of 1 but my frees were in the bottom like yours, that's why i originally switched to naturals because it has free t3 in it , i felt better in a week and over time my frees went up to the point i went hyper.   now I've had to reduce it a lot over time, i think as your frees get good(higher) your body heals and you don't need as much  you convert the t4 better . (Just my theory)  i'd keep with your program see if your frees go up as you get that tsh down as the dose goes up. but if not,  you have the option of trying  natural or cytomel. i think the free t3 in the right amount will make you feel much better!! Kevin

[kl42]

I would think you still have to increase . ***** takes time,  but slow and steady is probable right.

[goolarra]

Have you given any thought to the idea that maybe you aren't "...so far away still from being optimized"???

Midrange for FT4 and upper third for FT3 are just rules of thumb...they're not for everyone.

Boredom can be very tiring.  Seriously.

My labs are worse than yours, and I feel fine.  Some of us are outliers.

[flyingfool]

It almost seems like the T4 medication is not being absorbed.  

You have a long history of trying lots of medciation. So I don't know if you have ever tried Tirosint.  It is still pure T4 but it is a liquid gel cap, which MAY allow for better absorption.  Just a thought.

[Brucergoldberg]

they went up a drop.  What the hell am i suppose to do?  I had the TT in feb.  It is almost November now.  I keep getting increases but im so far away still from being optimized.   I have a hard time getting up in the morning.  Im not exhausted during the day, but i do get pretty knocked out.  IM bored out of my freaking mind at this point.  I want to go back to work but i dont think im ready yet.    All the doctors are telling me "once you get your thyroid labs under control we will look at other things"  but since i cant get my labs under control i am stuck in a rut.

[kl42]

Weird that your frees ddin't improve at all???

[kl42]

Yea your still way too low!!!. keep going up!!