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  • Advice Needed PLEASE (Levothyroxine/Cytomel)

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    Old 01-24-2013, 08:44 AM   #1
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    Advice Needed PLEASE (Levothyroxine/Cytomel)

    After being diagnosed with Hashimotos, I was on only cytomel for six months. (5MCG three times a day..) I was okay, definitely better from before I was diagnosed, but still had a few symptoms. Fatigue in the late afternoon was the worst for me.)

    I went to a new doctor for input and to ask for Armour. (*because I read such great things about Armour & my last doctor moved out of state.) He said Armour was not avaliable any more and put me on 100mcg Levothyroxine..along with taking me off the cytomel. He said in eight weeks we would test my blood and go from there.

    It is now the second day without my cytomel and I am SICK as a dog. My head feels like it's going to explode. This morning is the first dose of my Levothyroxine. I know these things take time but I have a lot of plans this week.. Should I stop taking this and go back to cytomel till the plans are over?
    My last labs are:
    Reverse T3 9.8
    T4 (low) 0.61
    TSH 0.942
    Zinc 1007

    I am new to this. I would appreciate any input. *by the way, he said people should not be on ONLY cytomel* Thank you!

    Last edited by Danz93; 01-24-2013 at 08:48 AM.

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    Old 01-24-2013, 02:06 PM   #2
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Your doctor is either ignorant or flat-out lying to you. Armour, Nature-throid, and NP Thyroid are readily available. In Canada, Erfa is available. And compounded natural thyroid is available most places. (Westhroid is another natural thyroid product, but I'm uncertain about its availability at this time.) I would have serious doubts about having this person as my doctor.

    Cytomel only is usually not a viable treatment for low thyroid, but "usually" doesn't mean "never". You still should want to give a natural thyroid product containing both T4 and T3 a try, because it might resolve the lingering tiredness you were feeling in the afternoon. Apparently, you'll have to find a more cooperative MD to do that, though!
    "We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln

    Old 01-24-2013, 04:22 PM   #3
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Thank you. And I knew this goofball had to have been lying. Too many people take it??!! Well, after a horrible long day of feeling like I'm going to die, I called my old doctor and he told me to take a cytomel immediately. I felt a little better within two hours.

    Old 01-25-2013, 02:58 PM   #4
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    I'm sorry you're struggling like this and I was gonna recommend you the exact same thing, take a cytomel now.

    not every doctor works with natural thyroid hormone, yet it's incorrect to say it's not available a lot of people do well on it.

    it's true most people aren't on Cytomel (T3) only and it's not recommended, yet this approach sure is not either.

    See what happens, T3 has a shortlife of a couple of hours, that's why a person needs to take it in split dosage, after a couple of hours it leaves the body and has no effect anymore.
    T4 on the other hand has a shortlife of a week, it takes time to build up in the blood and after about a week the first effects might be felt (most of the times around that time people will feel adjusting symptoms or whatever).

    T3 is known to be a TSH suppressant (thyroid stimulating hormone produced by the pituitary gland), the thyroid wont produce anything unless it's stimulated (by the pituitary gland).
    point is you were taking T3 with pretty much immediate effect, your doctors takes that away while your TSH is very low (which is normal and completely nothign to be concerned about) but also shows at this point your thyroid wont produce, your doctor replaces that with T4 medication which needs time to build up in the blood (first effect after a week, the dosage needs 6 weeks to build up and stabilize in the blood).
    I can imagine you must feel terrible, there is no way you could not. I can understand your doctor wanting to take you off T3 only but the way he suggest to make the adjustment seems completely irresponsible to me.

    hang in there

    Old 01-25-2013, 03:19 PM   #5
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    Thumbs down Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    You Veterans teach me more than my doctors! Thank you very much.

    Well, if / when veterans have the time, I'd love to know what you think of the following. ??

    My former doctor, who saved me and told me to take a cytomel immediately and get back to taking a 0.5 every 8 hours, said for me to NOT take Levothyroxine and I was 'different' .. I can only be on Cytomel. And, he said my labs were normal. I was level. He said this new doctor was wrong to have me just stop cytomel like that. And he said, this new doctor was wrong in saying my T4 was low. The original doctor said 61 used to be considered low but it's not anymore. And if I am tired in the late afternoon it's because of my adrenal glands. Does this make sense?

    I will say this, since I am back at taking my cytomel. I'm back to having energy, mentally fine, still a little ill from stopping cold turkey but getting back to the normal I was used to.

    This is a constant, draining mystery. After beating Lyme Disease, I'm worn out to be honest. Now this.
    So, I can't thank you all enough for enlightening me.

    Old 01-25-2013, 04:07 PM   #6
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    might have to get back to this in the morning, but I don't agree completely agree with neither one.
    A person does not T4 in it's system whether it's produced by the thyroid or coming from the bottle. True T3 is considered to be the active hormone, T4 is converted into T4, yet long story short my experience on the board and my research learns me when T4 is too low for the body's needs there will be lingering symptoms, both levels need to be in a good place to receive the status of symptomfree. (some organs/cells prefer to convert itself, there is no option in doing that if one is providing only T3 - anyway way after midnight over here so too late to get too much into such things :-) :-) );

    you'd be the first I encounter in my journey who would need T3 only.
    Unless I'd see labs or information confirming that, I'm not following that one.

    unless your doctor saying that the other doctor was wrong saying T4 was too low (are we talking the Free T4 by the way?) was having the labs ranges accompanying the labresults, I don't think it's a proper thing to assume, not professional at all. each result will have labs ranges accompanying that, do you have the reference ranges if so we can have a look at the results. if you're on T3 only meds, TSH low, odds are very high your FT4 was too low but I don't like guessing work, prefer facts so I'd like to see reference ranges if possible.

    the lingering symptoms and afternoon fatigue likely were remaining symptoms due to not havng optimal levels in other words not an optimal dosage. As I say, it's important to have both levels at a good place.

    Of course you feel better by taking your cytomel, as I say it has a pretty much immediate effect, so yes your body was lacking thyroid hormone and by providing it it feels better, but that does not necessary imply that Cytomel is the long term solution for you.

    If I were you I'd start to learn all and everything you can. thyroid for dummies is a good way to start; (also our sticky thread thyroid finformation )

    Old 01-25-2013, 06:09 PM   #7
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    I truly appreciate the help. When you can, I'd love any feedback.
    I am new to this but I bought some books recently and have started researching as much as I can. Like I wrote, I just came out of a Lyme Disease nightmare that I was misdiagnosed for.. so, I feel drained. But don't we all? So, that's my excuse but I'm more than ready to learn.

    The things I have read rings true what you have wrote. *being on cytomel only* doesn't make sense for long term.

    Yes, I am referring to Free T4.
    Here's the labs both doctors went by:
    T3/rT3 ratio 15.8
    Reverse T3, Serum 9.8
    T4 Free 0.61
    TSH 0.942
    Zinc 1007

    I'm lost on the labs.

    But as much as this original doctor saved me from out of state, says he can keep treating me from out of state, and that I like him doesn't mean I want to take every word he says as gospel. I learned through my past illness, the people that live it know far more.

    Maybe I should keep taking the cytomel along with the Levothyroxine?

    Am I wrong to believe that all doctors are taught the same thing? What's with a difference in opinion with doctors?! It's so very frustrating.

    These forums are a life saver.
    Thank you so very much.

    Old 01-25-2013, 08:29 PM   #8
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Hi Danz - here are a few of my thoughts.
    1. You don’t seem to have been doing too badly on the T3 alone, so I would stay on the T3 until you have a rational plan to change it. I would say overall that you need to get a good understanding of the situation before changing your meds.
    2. Your old doc said you were “different”. You need to talk to him in order to fully understand exactly what he means by that. Maybe he knows something that nobody else does.
    3. Also what does he mean by level? Does he mean your test results were the same from one test to the next? Is he calling your labs normal just based on TSH? (That is not a good thing to do).
    4. It is really odd (crazy) that you are on straight T3 and yet they do not give you Free T3 or Total T3 test results. They must have done one or the other in order to calculate a T3/RT3 ratio. You really need to get a FT3 test.
    5. Your Free T4 at 0.61 is extremely low. The median value for normal people is about 1.0 to 1.1, so your can see you are only around 60% of that. So the doctor’s comment that 0.60 is normal does not make sense, unless he means it is normal for people who only take T3. Again – you should ask him to clarify his statement.
    6. The level of your RT3 is good, you do not have a problem there.
    7. Assuming that you will eventually decide to change your thyroid meds, you absolutely must insist that you get new labs just prior to making the change! At a minimum get TSH, free T3 and free T4. You must do this in order to know what direction the new meds have shifted you, when you get the next labs after the change.
    8. Re doctors. Unfortunately most doctors are in the dark ages when it comes to thyroid stuff. They don’t know what tests to order, don’t know how to interpret the test results, and don’t know how to prescribe the meds. Not very comforting. Your old doc seems to be ahead of the pack though – most docs have never even heard of reverse T3, never mind ordering the test, and for sure 99.9% of them would not prescribe T3 only. But like you say, you have to stay on the ball.
    9. Low cortisol is a possible explanation for late afternoon lows.

    Old 01-25-2013, 09:27 PM   #9
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Wow! I can't thank you enough for that information! And, I apologize for apparently leaving that out. My total T3 on the lab results is 155.
    That's where I'm in trouble. I need to learn what I should be.

    Then again, my only helpful doctor is far away so I'm feeling as though I owe you veterans a check! Thank you so much for this help. I wrote down all your suggestions for when I speak to him.
    And, I will definitely ask for my cortisol levels to be checked!
    I match the symptoms for that.

    As for when he said I was "level" - he said I was all set & I have to start over since I quit cytomel cold turkey. So I'm assuming he meant I was good. But he flat out believes .61 is good results for T4. So I'm in for a debate I'm afraid.
    We all know how doctors love when we tell them "we read and research".. I get a lecture to stay off the Internet. Every single time. :/

    It eases my mind what you wrote about my old doc of the "packs" though!

    This is scary! Doctors are lost on thyroid conditions AND Lyme Disease?! What are they learning in med school?!

    I'll say it over & over but I'm extremely grateful for this help and knowledge.

    Last edited by Danz93; 01-25-2013 at 09:33 PM.

    Old 03-18-2013, 10:18 AM   #10
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    Red face Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Seems I have found some Pro's at this Thyroid mess. Maybe you can offer some advice?

    I was diagnosed with Hashimoto's in Dec 2012.
    TSH 2.69 (.40-4.50)
    T4, Free 0.9 (.8-1.8)
    T3, Free 3.1 (2.3-4.2)
    Antibodies 122 (<35 )
    Thyroglobulin Antibodies 31 (<20)
    Thyroglobulin <0.2 (2.0-35)

    Doc started me on .25 levoxyl for a month, then upped me to .375 levoxyl for another month, retested me:

    TSH 1.32 (same ranges as above)
    T4, Free 0.8
    T3, Free 3.2
    From this, upped me again to .50 levoxyl.

    I feel like crap, somedays I can sleep ALL DAY! Each time I go up a dose, my heart feels like it's going to pound out of my chest and I get shortness of breath for a few weeks. (that is all subsided right now, as I have been on the .50 levoxyl for about 3 weeks).

    I don't feel any better. My appt and blood draw is coming up in the next week or so. I was thinking of asking to try Armour.

    I also see a Napropath for my back/neck, who happens to be a Naturalist/Herbologist. She thinks I should get off of these meds entirely and take her well as the essential oils: EndoFlex, Lemongrass, Myrtle. And also start on Norlox, Calm CP. (for adrenal health). She ran a blood panel and did the saliva testing.

    Said my cortisol levels were high and remained high all day. My 5-HIAA was low, GABA low, Histamines high, Dopamine Low, DOPAC low, Norephinephrine High and Epinephrine low.

    I have heard horror stories of friends trying to the "natural route", losing hair, teeth softening and miserable.

    Thoughts? Thanks!

    Old 03-18-2013, 05:45 PM   #11
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    Re: Advice Needed PLEASE (Levothyroxine/Cytomel)

    Danz93 - I would love to hear your Lyme disease story. What were your symptoms? How were you diagnosed?

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    cytomel, hashimotos, levothyroxine

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