# Updates & Change to Tirosint



## Enigma (Jun 13, 2011)

I will keep this as my "official" thread.

Some background:

Hypothyroid symptoms in May 2010 (dry skin, hair falling out, bad muscle aches, 40 lbs weight gain, extreme fatigue, etc.). Diagnosed hypothyroid.

May 2010
TSH 15.4 (0.4-4.0)
FT4 .8 (0.7-1.9)
Started .5 mcg generic levothyroxine.

July 2011
TSH 6.85
FT4 1.0 
TPO 869 (0-9)
Started .75mcg Levoxyl

August
Changed doctors and started on 90mg Armour

September 2011
TSH .042 (0.4-4.0)
FT3 4.1 (2.8-5.3)
FT4 1.1 (0.7-1.9)

This set off a whole bunch of problems. Stomach, couldn't sleep more than 3 hours, heart palps, personality changes- my life was a NIGHTMARE (I am not exaggerating). Labs looked ok, but my body wanted NOTHING to do with Armour.

October 2011
Switched back to .75mcg levothyroxine and felt a bit better than on Armour, but still had MANY of the same problems. My life was still a nightmare.

November 3, 2011
TSH .92 (0.34-4.82)
FT4 .87 (0.59 - 1.61)
TSI 3.7 (<=1.3)

Still had problems. Had to go to the ER.

November 11, 2011
TSH 4.94 (0.4-3.8)
FT4 1.3 (0.9-1.7)
FT3 2.7 (2.0-4.4)

After this time, I took Cytomel for a week, but did not feel well.

Went to a new PCP and she wanted to do another test.

November 21, 2011
TSH 2.51 (0.34-4.82)
FT4 1.07 (0.59-1.61)
FT3 3.1 (2.0-3.5)
TgAb 433 (<116)
TSI 2.7 (<=1.3)

I've talked to the doctors about the TSI, possibly being hyper, etc., and they all said I wasn't hyper, most definitely hypo. So I decided to play their game, but on my own terms, and demanded to be switched to Tirosint (still .75mcg) to see if possibly fillers were messing with absorption and/or causing me to react. Since starting the tirosint (and also simultaneously stopping birth control and all supplements) I have felt GREAT. Even better than my "hypothyroid baseline" this time last year. Not perfect, and definitely not normal, but a h*ll of a lot better than recently. I don't feel horrible after taking the pill itself like I did with the levothyroxine. I am doing SO much better, and am pretty stable, which is amazing.

I had blood tests on December 21st, 2011:

TSH .56 (0.34-4.83)
FT4 .91 (0.59-1.61)

wooohooo! And I definitely felt great. After that, we had some serious family issues and stress, and I started noticing some of my hypo symptoms coming back (hair loss, constipation, muscle aches) but didn't feel too horrible, just nagging little things. I went back for my 3 months endo appointment this past Tuesday and he drew blood again.

January 2012
TSH 1.24 (0.4-4.0)
FT4 1.1 (0.7-1.9)

He doesn't want me to change my dosage and wants me to have blood work again in 6 months. Since I am still having some symptoms (and don't want to add any T3 since Tirosint seems to be working for me) I called back and asked him if I could start taking 88mcg every other day, since I felt better in December at TSH .56. His nurse called back and said he said no, that getting the TSH lower would not relieve any symptoms I had since it would be such a negligible difference.

So I am frustrated now. OBVIOUSLY my body feels better with a lower TSH. And OBVIOUSLY my body is EXTREMELY sensitive to these medications (going from a TSH of 15.4 to .56 on only .75mcg!??! Hello?!?) so 88mcg WOULD do something for me and I WOULD feel different with a lower TSH. But he won't do it. I have seen three endos already and he is by FAR the lesser of the 3 evils, so changing doctors is not an option right now. But I'm wondering how much I should push him for this? Because I will push him further if needed (he DID admit that he was not responsible for my feeling better since he had nothing to do with me the last 3 months- it was all me pushing for the change in meds. At one point he saw my 4.92 TSH and wanted me to start taking 100 mcg and I refused saying that I didn't feel comfortable. So I have been pretty on top of things since the Armour fiasco). I can remind him of this, but I'm not sure he will agree still. I could also call my PCP and ask her to put me on 88 every other day. I'm not sure she would, but I could try. She listens to me and trusts me so I could at least try. And I am definitely not waiting 6 months for blood work. Not with my crazy fluctuations. Worst come to worst, I will call my PCP and demand blood work in 8 weeks or so. 6 months is ridiculous.

Any thoughts would be VERY MUCH appreciated! Thank you for all of your support and help through these rough times! And sorry for the super long post!!


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## Andros (Aug 26, 2009)

I went back and reviewed some of your previous posts.


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When she got the latest results back, she said she wanted me to go see the endo again since my TSI is still high. She thinks the TSI is playing a large part in my symptoms. Now, I've seen two, both of whom say TSI doesn't matter, my symptoms don't matter, but the rest of the labs that say I am hypO matter. Both were very rude. So I asked her to refer me to another doc, but that might be a couple of months before I can get it.
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http://www.thyroidboards.com/showthread.php?t=4723 Post #1

You also have high TPO and Thyroglobulin in addition to the high TSI.

Maybe others will give a different and better opinion. I do find it hard to change mine.

I sincerely wish I could better help you with this. I am worried for you as you well know.


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## lainey (Aug 26, 2010)

With your antibodies, I would leave it alone. By themselves, they could change things.

Your free T4 actually went up a smidge, even if the TSH is a bit higher. You really want to see where that is trending before you change the dose.

Keep in mind, it really is not as precise as you think. People tend to feel best over a small range of values, not one particular one.

I think 88 every other day would make little difference. We've done this before. Try patience this time.


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## Enigma (Jun 13, 2011)

But patience for how long? I've been on this dose for 4 months now. The other "crazy" symptoms I was having a couple of months ago stopped when I stopped various supplements and foods I proved to be allergic to. Now all the hypo symptoms are coming back with a vengeance 

Not sure what I should be waiting for at this point


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## lainey (Aug 26, 2010)

To have labs done in November, switch medications and then do labs 4 weeks later in December does not really give you an accurate picture of what the dose adjustment accomplished. It takes 6 to 8 weeks to give a true picture. If I am keeping track in your post and have the dates correct, so far you have been taking Tirosint since Nov 21--that's about 8 weeks just now, no?

Due to changing antibodies, in three months, your levels could easily trend back down on their own without a dose increase.

You have tried almost every available medication and medication combination in the last 8 months to treat a disease that requires an 8 week time frame just to measure the effectiveness of a SINGLE medication dose change. Constant "tweaking" and adjusting and seeking a narrow number goal for TSH or frees or trying some other brand because it might be better has left your body in a continual state of change.

All patients have transition symptoms, which sets you up for a state of constant symptoms, because you are constantly transitioning.

How long? 10 months, 12 months ONCE YOUR NUMBERS ARE EUTHYROID (which they are)-- but maybe never if you keep switching things up, because you won't be in any one place for long enough to truly say what is working. All of the symptoms may not go away completely. Most thyroid patients live with a little dry skin, a little hair loss, a little fatigue, a little bit of struggling with weight like everyone else. That's okay--"normal" people have some of those problems too.

I said it last summer. I'll say it again.

I think you should leave it alone.


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## Andros (Aug 26, 2009)

Enigma said:


> But patience for how long? I've been on this dose for 4 months now. The other "crazy" symptoms I was having a couple of months ago stopped when I stopped various supplements and foods I proved to be allergic to. Now all the hypo symptoms are coming back with a vengeance
> 
> Not sure what I should be waiting for at this point


You are soon to run out of medication choices. Too many changes too soon. That "really" is part of the problem and I say this with a great deal of caring.

Nothing I and the others would like more than for you to be well.

I feel bad for you but if you persist in changing meds, you never will get better and by the way; is this just one doctor that is Rx'ing all these different meds for you? Or are you going to different doctors?

Determine by your FREE T3 and FREE T4 if you are converting or not. Choose one medication such as Armour if you "need" the T3 and find a doctor to titrate it appropriately every 8 weeks based on labs and clinical evaluation.


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## Enigma (Jun 13, 2011)

Andros said:


> You are soon to run out of medication choices. Too many changes too soon. That "really" is part of the problem and I say this with a great deal of caring.
> 
> ...
> 
> ...


I am not sure what you mean. I have been on levothyroxine 75mcg since the end of September. One doctor tried Cytomel in there for one week, but it didn't go well so she wanted me to stop. Other than that, there have been no changes except for the brand. I went from generic 75mcg levothyroxine to Tirosint levothyroxine 75mcg in November. No other med changes have been made. And I was on 75mcg Levoxyl before trying Armour for a month. I have not felt well on 75mcg of anything, except for a couple of week after starting Tirosint.

I was only wondering if going up to 88mcg or 88/75 alternating days would help. I am not trying to change my meds, just the dosage since I am feeling very hypo again.

Other than the Armour back in the summer, and the Cytomel, yes these are the same doctors Rxing the Tirosint/Levothyroxine- my PCP and now the endocrinologist.


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## lainey (Aug 26, 2010)

You are missing the point.

Right now, adding 36 to 48 micrograms per week is not likely to have much of an effect. Stick with the dose you are on for at least 8 to twelve weeks more. If memory serves, you were not willing to wait to titrate the T4 only medication properly last summer, which set off a tremendous number of problems in the switch to Armour.

You had brand/dosage changes in July (after starting in May), August, September, October, November (twice). A change is a change is a change--dosage, brand you name it they are the same--a change.

It is now a bare 8 weeks since the last one, and you want to know when you will be stable? You want to change your dose again?

How many more ways can I politely ask if you are truly thinking this through?

It is the constant changes that is contributing to the problem.


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## Enigma (Jun 13, 2011)

I was not willing to titrate the T4 only med last summer because it was making me SO SICK. I felt horrible, and it continued to get worse even through all of the changes. I was more sick than before I started taking thyroid medication. BEFORE I tried Armour. Armour was a mistake, but I wouldn't have known that until I tried, but I couldn't live the way I was feeling this past summer, either.

I guess I haven't thought of changing brands as a big change. None of my doctors have considered it much of a change.

Back in November, my endo wanted me to start on 100mcg of levothyroxine (before I changed brands). I didn't feel comfortable making a 25mcg change all at once so I refused. My levels (or at least TSH) have improved since then. And now he wants me to stay at 75mcg and thinks I am stable enough to wait 6 months to have blood work.

So either I am stable, or I'm not. Either I'm supposed to take 100mcg or I'm not. Either I wait 5 weeks for blood work (as per my PCP and endo) or I wait 8 to 12. Or 6 months.

So, yes, I have thought this through as much as I can with conflicting advice, labs, etc. I also know that I have missed 29 days of work since September, have had relationships seriously damaged with family, scared of hurting myself, hurting others, almost fall asleep at the wheel every day, will lose my job and many more worse things. I know that if I go back to where I was feeling before that I won't make it. And it scares the heck out of me. So right now I am at a loss to what I should do. If I keep feeling worse, my life will fall apart completely, and I don't know if I will make it. I have been hanging on my the tips of my fingers for 6 months. I can't go back there because I have nothing left in me.


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## lainey (Aug 26, 2010)

Not long ago, I had a discussion with another poster that lower is not necessarily better.

It's very difficult to look at your current labs and deem them 'inadequate'. You are not looking for a single TSH number, or T4 level, but a range. Your thyroid levels change hourly, daily and even monthly based on the seasons. There is nothing concrete about the dosing, nor finite about the numbers.

Healing takes place AFTER euthyroid levels are reached. The issue becomes, and it is true for everyone, is the time that this takes. It is in no way a quick fix and long enough even for someone whose labs stabilize shortly after treatment begins--but in your case that period has been prolonged by so many dosage changes. It is something we have all weathered, and part of the process.
You need to stay in one place long enough so that your body can heal. If you were at TSH .54 on 75 mcg 3 months ago, there is no saying that you won't be there again in 3 months time, without any dosage change at all. It is a mistake to reflexively raise the dose because the TSH rises a small amount in a short time, simply because it can go back on it's own and a dose increase can then make things too low.

You really should give it a period of time to see where it is trending before you rush any further medication decisions.


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