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Old 06-19-2012, 10:35 AM   #1
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Get worse, before you get better?

I've been on Cytomel for 3 weeks now, (yay!) but only on the full dose for the past 9 days. (start at 1/2 dose for a week, then 3/4th, and then the full dose of 12.5mcg)

I'm so appreciative that you told me there'd be a little "adjustment" period, but I was so hoping I'd be feeling a little overall improvement by now. In the past 3 weeks, I've had one really good day, 2 okay-ish days, but the rest my usual blaaaaa. But for the past few days, it seems as if I'm even more droopy than usual. And, I now have this gicky metal taste in my mouth. (didn't have that pre-cytomel)

Is this psychological? Maybe that one really good day, (where I thought - wow, this is what "normal" people feel like!) got my hopes up to high? Or, is this just a roller-coaster I have to ride out (highs and lows) until I'm fully titrated?

Thanks again for all your guidance,
Lin

 
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Old 06-19-2012, 10:40 AM   #2
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Re: Get worse, before you get better?

Quote:
Originally Posted by LPD View Post
Or, is this just a roller-coaster I have to ride out (highs and lows) until I'm fully titrated?
This seems more accurate.

It wasn't until I started what became my optimal doses (both T4 & T3) that I started to experience only improvements.

Until that time, it was a roller coaster ride that smoothed out (but still had ups and downs) as I neared my optimal levels.

For me, the worst of the roller coaster ride was when my FT4 and FT3 levels were below mid-range.
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Old 06-19-2012, 10:41 AM   #3
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Re: Get worse, before you get better?

My recent thread "Journal for Success" describes much of my experience which was a common one.
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Old 06-19-2012, 11:31 AM   #4
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Re: Get worse, before you get better?

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Originally Posted by sammy64 View Post

For me, the worst of the roller coaster ride was when my FT4 and FT3 levels were below mid-range.
Hi Sammy, I hope you know there's a special place in Heaven for people who give, give, and then give some more.

Eeks, so I guess I've been stuck on this roller coaster for 20 years! According to my last labs, which have been consistant for the past 20 years, (on 50mcg Levothyroxin) my roller coaster never got anywhere near the top!

TSH: 1.59 (.34 - 3.5)
T3 Total: 82 (87 - 178)
Free T4: 1.0 (.5 - 1.6)

That one good day was such a tease! I know I have to wait another 5 weeks for my next blood draw, (at least 6 weeks on the full dose) but I was hoping my little cart would be chugging and clanking up to the top of the roller coaster by now! But, it's been like 2 cranks forward, 3 slides back.

Perhaps I've been hypo for so long, it's going to take a extra time to boost me up to where I need to be.

Hugs,
Lin

p.s. Yes, thank you for that post about your log / diary. After I read it the other day, I started keeping track of everything! That's when I started to notice that strange metal taste. Bleech! I did a board search about it, and found folks that aren't on meds yet also experience that taste ....

 
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Old 06-19-2012, 11:43 AM   #5
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Re: Get worse, before you get better?

Quote:
Originally Posted by LPD View Post
But, it's been like 2 cranks forward, 3 slides back.
I use the term "two steps forward, one step back" to describe the meds titration process. blech lol

Quote:
Originally Posted by LPD View Post
Perhaps I've been hypo for so long, it's going to take a extra time to boost me up to where I need to be.
There has been speculation about stuff like this....it could very well be true. The body does its best to maintain homeostasis. Therefore, maybe you being hypo for so long could mean that your body "reset" itself to a level of less-than-optimal function. Your body will be happy when it realizes your new thyroid hormone levels will be there to stay.


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I did a board search about it, and found folks that aren't on meds yet also experience that taste ....
I did similar when I developed an odd symptom during the meds titration process. Even though I understand the "whole body" effects of the thyroid, I continue to be amazed at how an out-of-whack thyroid can manifest in the form of certain symptoms.

Best of luck to you moving forward - your train is chugging up the thyroid mountain.
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Old 06-19-2012, 11:44 AM   #6
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Re: Get worse, before you get better?

Hi there,

Can only second everything Sammy said. Unfortunately there is no other way but to sit it out, part of the titrating process, but try to keep in mind it's part of the road to achieve wellness again.

Hang in there and take care

 
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Old 06-19-2012, 12:49 PM   #7
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Re: Get worse, before you get better?

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Hi there,
Unfortunately there is no other way but to sit it out, part of the titrating process, but try to keep in mind it's part of the road to achieve wellness again.
Thank you so much Lisa .... you're another of my angels!

I'm really trying to be patient. But when I noticed that metal taste, I started to worry, thinking I was going in the wrong direction! (ie: to much T3 but not enough T4?) Eeks, I guess they are right, a little bit of knowledge can be dangerous!

In the grand scheme of things .... 3 weeks into a 20 year ordeal is really just a blink of an eye. I can't express how excited I am for the next blood test in 6 weeks. Come on roller coaster ... start cranking in the right direction!

Lin

 
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Old 06-19-2012, 01:05 PM   #8
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Re: Get worse, before you get better?

For what it's worth that metal taste, sure is a symptom (all too familiar with it). I use a lot of good tasting lipbalm and peppermint (not sure whether that's the right word in English, I apologize if it's not, not really candy - we're not gonna do that - more somethign fresh to counterbalance the metal taste.

As far as I understand your on 12mcg T3 now right? Yes that's already quite a dosage but as far as I remember you were below ranges with your FT3 no? In my experience the lower the levels (I used to have near bottom, not below bottom) but the lower the levels are, the more adjusting the body needs to do and that means adjusting symptoms. Although it's annoying and confusing, I would not worry too much about it. After 6 weeks retest and see where you landed with your levels, not much else you can do at this point and uhm... try to enjoy the better moment but I have the impression you sure do.
Unfortunately the medstitrating process takes patience, patience and some more patience, but indeed in the grand scheme, it's all for the purpose of getting better and achieving wellness.

hang in there

 
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Old 07-19-2012, 10:35 AM   #9
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Re: Get worse, before you get better?

*** Pity Party Warning ***

I guess I need a little 'hang in there kiddo' support.

On Monday, I'll be on the full dose of Cytomel -12.5mcg, for 6 weeks, to go along with the .5 Synthroid I've been taking for 20 years. (my FT4 was in the 45% range, and my T3 was below the labs ranges) I know I need to be patient, but should I really feel this bad after 6 weeks? For example, if I mow the lawn or give the pup a bath, I'm a zombie for 2 days, etc. I guess I assumed I'd feel a teenie-tiny bit better by now, but I guess not, eh? I feel much worse than before I started the Cytomel. Waaaaa.....

I'm going in for new labs on Monday, and I can't wait to see where I am. I found some old labs from when I felt really good. My FT4 was 69% of the labs ranges. Ahhhhh...... the good 'old days - I miss them!

Since I had to twist my new Endo's arm to give me the Cytomel, I don't have to much faith that he'll do anymore to get my ranges up to where they need to be. I did find a "thyroid specialist" (*fingers crossed*) but can't get in to see him until August 20th.

Well, enough of my whining, (sorry!) but may I ask if you think this is "normal" for someone to feel so much worse, or do you think something else is going on?

As always, THANK YOU!
Lin

Last edited by LPD; 07-19-2012 at 12:13 PM. Reason: typos

 
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Old 07-20-2012, 04:50 AM   #10
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Re: Get worse, before you get better?

Sorry to hear you're feeling worse! Unfortunately, this can happen.

You see, Cytomel is a T3 med. T3 has a direct effect on TSH and causes it to lower. Well, a lower level of thyroid stimulating hormone means that the thyroid isn't going to produce as much hormone.

So, starting Cytomel or increasing the dose often means that the FreeT4 level will go lower.

Your FreeT4 level was already inadequate and your doctor really should have increased your Synthroid when starting you on Cytomel.

Having optimal levels or not is a similar concept to being pregnant or not. Your levels weren't/aren't optimal, your FreeT4 level probably even less so.....thus, you feel worse. ((hugs))

I think it would be a good idea to have more than one doctor as your backup plan.

In the meantime, maybe you can call your endo and ask him to increase your Synthroid dose now....

I promise you that you will feel better when *both* your FreeT4 and FreeT3 levels are above mid-range....you'll still have symptoms but, it will be better.

Once you're stable at your optimal levels, you can look forward to symptoms slowly dissipating.

You'll get there.
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Old 07-20-2012, 01:03 PM   #11
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Re: Get worse, before you get better?

Thank you SOOO much Sammy. Gosh, I really started to think I just needed to get used to being a big 'ole sloppy fat mess for the rest of my life. But thankfully, with your, Lisa, and midwest's (and all the wonderful board ^angels^) amazing advice .... there's hope.

It's been a confusing journey so far. The first two weeks on the Cytomel, I thought .... yay, I'm on the right track! The second two weeks.. pretty much a stall. These last two weeks ... erg, I've been (pardon my French) Crap-on-a-Cracker.

Even though I'm near San Francisco (lots of lovely fog!) the fog in my brain is 10 times thicker. So, if I may be pesky again .... (I've re-read all your previous replies, but .... sound the fog-horns!) may I ask again - since my next blood draw will be on Monday morning .... I know I shouldn't take the new T3, but (since my T4 is so low) should I skip that dose too? I've always (in the past 20 years) taken the .50 of Levo around 4am with my morning coffee, and do the blood draw when the lab opens. I'm (foggily) thinking that since my T4 has been falsely "elevated" at 45% of the lab's range - I should skip that morning dose too. (?) Maybe if my new endo sees the FT4 even lower, he'll be more willing to increase my Levo? Yes/No?

With all your wonderful advice, I'm actully hopefull that I'll be semi-functional around Christmas time. *fingers crossed*

Lin

 
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Old 07-20-2012, 01:11 PM   #12
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Re: Get worse, before you get better?

I very much understand where you're at because I was there, too.

It's such a tease when we have a feeling good day only to backslide and seemingly never see that day again.

It's only when we're stable at our optimal levels that those feeling good days are the norm.

Please, no worries about repeat questions - I completely understand the brain fog (it's horrible)

Without a doubt, you'll want at least 8 hours between your meds intake and your blood draw so, just take your meds afterwards.

I wouldn't rely on the doctor alone to notice the need for a dose adjustment.

In my early days of treatment, I sometimes had to point out to my doctor that either/both my FreeT4/T3 levels had room to increase and still be within the normal range. I suggest you be ready to make a similar statement.

I'll keep my fingers crossed that you get your Christmas wish.
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Old 07-20-2012, 01:22 PM   #13
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Re: Get worse, before you get better?

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I've always (in the past 20 years) taken the .50 of Levo around 4am with my morning coffee
Please forgive me - I post on so many threads that I can't remember if we discussed this already.

I hope you're no longer taking your Levo with coffee.

Coffee/caffeine is one of the biggest inhibitors of T4 absorption.

Since I did not like the idea of delaying my AM coffee by a single minute, let alone 1/2 hour, I've always taken my levo at night.....at least two hours after last food/drink other than water.

If you haven't done so already, taking your levo without coffee can help boost that FreeT4 level.

In fact, a small study showed that T4 is best absorbed at night so, switching to nighttime dosing might also help.
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Old 07-20-2012, 05:39 PM   #14
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Re: Get worse, before you get better?

{{{Sammy}}} .... big hugs to you! Gosh, I don't know how you do it. I help out on a different type of message board (for pet bereavement) so I know the commitment involved. I honestly don't know how you stay on top of everyone you 'chat' with. (this is a busy board!) {{{big heart hugs}}}

Back in June, when I was feeling halfway decent, I asked a few questions about my new course of action after starting the Cytomel: http://www.healthboards.com/boards/thyroid-disorders/904000-upcoming-labs-rapid-fire-question-time.html
In my foggy, fuzzy, goober filled brain - I assumed I should keep doing what I've been doing for the last 20 years. So, (yipes!) I've still been taking my Levo with my morning coffee, and the Cytomel about an hour later.

Like you, the second I open me'eyeballs upon awakening, I dash out to the coffee maker for my morning fix. I guess I could take my Levo at night ... but ..... just like with my morning obsession with coffee, I always end my day with a glass of red wine. (I have the feeling that wouldn't be beneficial, eh?)

Please forgive me for being so pesky. I just want my labs to reflect the need for a (desperately needed) dose adjustment. So my plan ... (please correct me if I'm wrong) is to not take either the Levo or Cytomel on Monday morning pre-blood draw. Hopefully the results won't confuse my new Endo, and he'll give me new scripts to get my levels (at least) above the mid range. (???) Maybe?

Wiith great appreciation,
Lin

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Old 07-21-2012, 04:39 AM   #15
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Re: Get worse, before you get better?

My advice was that you continue with what you'd been doing for your next set of labs. This way, you'd be comparing apples to apples with your FreeT4 level.

Moving forward from there (and especially if you don't get a levo dose increase), you might want to consider doing things differently.

People were amazed at the difference in their FreeT4 levels once they stopped having coffee with their levo (T4) In fact, "The Complete Idiot's Guide to Thyroid Disease" mentions a patient who, after years of optimal levels, began to struggle. The doctor discovered that she had starting taking her levo with calcium-fortified OJ (calcium is another absorption-inhibitor)


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but ..... just like with my morning obsession with coffee, I always end my day with a glass of red wine. (I have the feeling that wouldn't be beneficial, eh?)
Eh, not really Ya know, that red wine might be interfering with your sleep. If you have any sleep issues, you might want to consider having that wine a little earlier in the evening. Then you could take your Levo at night

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So my plan ... (please correct me if I'm wrong) is to not take either the Levo or Cytomel on Monday morning pre-blood draw.
Exactly! No meds for at least 8 hours before any blood draw. (Consistent timing of labs moving forward will also be beneficial)

It's clear that I'm happy to help on here. I've always had the need to give back and this place lets me save gas while I do it.
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