# Progess Review and a couple of questions



## WhatHappened (Nov 12, 2015)

When I was first diagnosed hypo/hashis, I am pretty sure I had Free T3 measured, but since I went to my endo, it has not been. He's a good guy, and perhaps he will test for it, but thinking I might just want to go out of pocket on this. I like him, I think I can speak with him about it in a couple of months when I see him next (just upped my dose today). He's pleased with my progress considering the "short length of time" we have been doing this (no T4 to 1.03 in 4 months). I feel tons better. Still not 'whole' but tons better (could be all the damage that is still being repaired).

Just curious, I imagine it is a curve of some kind where TSH goes down and Free T4 goes up. But if my recent progress holds true, it looks like I might go "hyper" on T4 before I ever get my TSH down to an acceptable range.

Maybe I am thinking about this all wrong? I guess I have another question. I've read that we generally feel best when Free T4 is in the midline or upper quertile, what are the comments on TSH ranges and Free T3.

As always, thanks!

*11/2015 @ No Meds*

*TSH:* 72.5 Range: 0.465-4.680

*Free T4:* <0.07 Range: 0.78-2.19

*01/19/2016 @ 50 mcg*

*TSH: *45 Range: 0.465-4.680

*Free T4:* 0.4 Range: 0.78-2.19

*03/02/2016 @ 100 mcg*

*TSH: *21.6 Range: 0.465-4.680

*Free T4:* 1.03 Range: 0.78-2.19


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## joplin1975 (Jul 21, 2011)

I would hesitate to jump to the conclusion that your might go hyper before your TSH gets to an acceptable level -- and yes, your TSH should go down while your free t4 goes up. You were severely hypo and it takes a LONG time for things to sort out. And remember that your TSH can be delayed up to six weeks. What I would suggest is is trying to get your free t4 to about 75% of the range. Then stay on whatever dose of your meds you are on for another six weeks. Then retest. If you have no movement in TSH and/or if you are indeed hyper per free t4, then get that free t3 test.


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## WhatHappened (Nov 12, 2015)

Appreciate the response AND the reminder to be patient. Odd having enough ambition to be impatient. But it does sort of make sense too... at some point my T4 may reach the right plateau but my TSH may lag behind a bit as the body repairs the damage and gets used to having 'happy juice' (T4) back in the mix.


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## joplin1975 (Jul 21, 2011)

We took a pretty aggressive approach getting my TSH down from 121. We upped my meds every four weeks. But about half way through the the process, I took the dose I was on for an extra four weeks, just to see how well my TSH caught up.

You'll get there.


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## WhatHappened (Nov 12, 2015)

Kind of disappointed. Still feel better than I have when compared to last summer and last fall, but...

I had expected a higher tick up on FT4 when they upped my dose (100 > 125, so 25%) but it didn't happen though TSH dropped in half!!! (some day soon I will be in the single digits)

But there was one change of note I made to my labs method that I took from the forum that I had not done prior. Labs before meds. I wasn't able to make my appt in the morning, so the labs got taken in the mid afternoon and my pill after that, but wondering after all the steady levo that it would still drop from 1.03 to 0.95 even at the higher dose (the ranges are so narrow that that is like an 8% drop. Environmental factors? I've gotten more physical lately now that I feel better, chores, yard, repairs, more active at work).

Appt with my Endo next week, going to ask for FT3 next go round and D, Iron, B, Antibodies. etc.

*05/06/2016 @ 125 mcg levothyroxine*

*TSH: *10.3 Range: 0.465-4.680

*Free T4:* 0.95 Range: 0.78-2.19


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## jenny v (May 6, 2012)

This can happen a lot in the beginning. As we feel better, we do more, and as we do more, our bodies need more meds. It can take quite a few dosage changes sometimes to find the sweet spot--that spot where you've reached your peak activity level and you find the right dosage to maintain it.


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## joplin1975 (Jul 21, 2011)

Yup, agree with Jenny. I'm a runner so once I started running again, my free t4 dipped. I upped my dose, felt better, ran more, and then had a dip again. You'll go through a bit of a period where you feel like you almost on a hamster wheel, but it does straighten itself out long term.


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## Lovlkn (Dec 20, 2009)

I would suggest ordering your own labs - just so you know waking in where you at.

Your doctor in my opinion is taking an extremely loooong time to get your levels up.

You are still incredibly hypo based on your FT-4

$65 is a small price to pay to know what is really happening.


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## WhatHappened (Nov 12, 2015)

Thanks, I wondered if that might not be the case. Just still stunned about this illness. I keep on pushing back on how long I've been sick. First, last summer, then maybe a year or two, and now the realization that I've done more 'Physical' work this spring than I have in the last 3 summers.

Lovlkn, yeah, was thinking of taking a trip to CT to get it done (NY) does not allow it. I have an appt with him next week to review the labs. Since he seems inclined to work off both tsh and t4 I've been reluctant to dr shop. and I have felt the steady improvement, so it makes it a little easier to be a little patient. So many others seem to feel super impacted by number I would love to have.


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## WhatHappened (Nov 12, 2015)

My dose has been upped to 137. I'm basically at 1.7 mg / kg, I'm 180 lbs 82 kg). Hwp and just about where I should be for my height.

He's still tsh centric with an appreciation of FT4, but he was more worried about possible celiac (though no symptoms) as one culprit for possibly interfering with absorption.

Follow up in 3 mos. Ft4, tsh, creatin kinase (still have some muscle pain), metabolic panel, Vit d and b.

Think I'm going to make time to go to CT and get my own blood work done.


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## Lovlkn (Dec 20, 2009)

For comparison-

My neighbor takes the same dose of thyroid hormone replacement as I do. She has her thyroid - I do not.

Maybe your thyroid is simply dead/ not functioning anymore. I was recently told that Thyroid hormone replacement medications are the most prescribed medication.


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## WhatHappened (Nov 12, 2015)

Lol. Yeah, I've often thought I could put a zipper in my thyroid and use it to carry quarters for parking. Mt Raiu was only 3% at 24 hours when I was first diagnosed. I'm glad that he's thinking and wondering out loud why my TSH isn't lower and my t4 higher.


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## joplin1975 (Jul 21, 2011)

I'm over the 1.7mg/kg guideline by quite a bit. It's just a guideline. Or a starting point. Activity and how your body metabolizes things really impacts dosage.

I agree with Lovlkn that you probably don't really have much functioning tissue left.


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## Lovlkn (Dec 20, 2009)

Once you begin taking thyroid hormone replacement TSH does not really matter. TSH is definitely NOT something a doctor should be adjusting doses by and if they are, find a new doctor who will at least look at FT-4 and FT-3 if you are lucky.


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## WhatHappened (Nov 12, 2015)

He seems to use both. At this stage willing to see where he stops since I feel OK**. I'm appreciative that he seems to be thinking of me and is willing to share his thought process (Ck, metabolic panel, celiacs). I'm also nudging him along to what I think is important so if the time comes and things are not where they should be it isn't a surprise when I ask to go higher.

**things still hurt, I'm not 100%, but im not a wreck I think. (Also didn't think I was sick until nearly crippled, so I've proven I don't know much  )


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## Lovlkn (Dec 20, 2009)

WhatHappened said:


> He seems to use both. At this stage willing to see where he stops since I feel OK**. I'm appreciative that he seems to be thinking of me and is willing to share his thought process (Ck, metabolic panel, celiacs). I'm also nudging him along to what I think is important so if the time comes and things are not where they should be it isn't a surprise when I ask to go higher.
> 
> **things still hurt, I'm not 100%, but im not a wreck I think. (Also didn't think I was sick until nearly crippled, so I've proven I don't know much  )


Optimal levels for your labs are as such...

TSH 1 ( most here report a TSH of 1, if they produce TSH, I for one do not and ignore TSH in all dosing decisions)

FT-4 1/2 - 3/4 ranges 1.5 - 1.86, you are at .95 and have a Looong way to go before you are optimal on FT-4.

A FT-3 would give you the most complete picture of unbound thyroid hormone in your system.

Your doctor is not doing you any favors and quite honestly - is looking quite negligent for keeping you in a hypo state so long after being diagnosed.

Once a person begins taking a thyroid hormone replacement, TSH is somewhat useless, it lags up to 6 weeks and is a pituitary hormone, it does not reflect thyroid hormone in your blood, only that you may need more but because of the lag, completely unreliable.

I think most people understand it as the "gauge" somewhat like a gas tank gauge, except a high TSH means you need more thyroid hormone.

I had absolutely NO luck getting proper replacement post TT from an Endo.

Why does he think you have celiacs?


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## WhatHappened (Nov 12, 2015)

As always thanks Lovklyn.

Celiacs. I think he was disappointed in my lab results vs my dose. He was musing out loud and wondering if there was something interfering with the digestion of the pill. I have a religious morning routine where it is concerned so he was educating me that AI's can come in clusters. I knew this, but he didn't know that.

I think I am being patient for a couple of reasons. Primarily his bedside manner, I am included in his thinking. There is constant progress, even though we (you/me) both agree it could be quicker (there is ignorance in play as well as I thought my labs would improve more dramatically when I went to 125). I do think that when it comes time to eval when to stop he will go along with the "experiment" and continue to increase my dose if he doesn't get there himself. I didn't have the journey so many here had, so I think part of it is I have a known quantity for now who treats me like a human being. If the time comes where he stops and my blood work still needs to improve, I'll Dr. shop then. Maybe it doesn't make sense, but...


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## jenny v (May 6, 2012)

If he's willing to work with you, I would push him big time on testing Free T3 every single lab. FT4 is good but you need FT3 to get the whole picture. Have you also ever looked into your iron levels or adrenals? Those can cause issues if they are off, which affects thyroid medication absorption sometimes.


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## WhatHappened (Nov 12, 2015)

Thanks Jenny. I'm planning to get some/order blood work done out of state, but hadn't thought about adrenal testing (not sure if I can order that one but 8f not, will try and get it from my endo). Will add the iron as well.

The only iron levels I have are from when I was first diagnosed, but I was so over the edge nothing looked normal (including kidney and liver).


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## Lovlkn (Dec 20, 2009)

ZRT labs is where you need to check out saliva testing for Adrenal. They also offer hormone testing. The link I've attached is a good place to look at what labs you might consider ordering.

https://store.zrtlab.com/index.php/saliva-testing

I'm not sure I agree that blood spot testing for thyroid is accurate.


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## jenny v (May 6, 2012)

Agreed, a four point saliva test is the best way to look at cortisol/adrenal issues. You can order it online from ZRT and they email you the results. In most cases, adrenal issues can be addressed by the patient with supplements. Only in extreme cases (like Addison's or Cushing's) do you need a doctor to prescribe anything.


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