Started on T3 have questions

Discussion in 'Fibromyalgia Main Forum' started by springrose22, Feb 13, 2007.

  1. springrose22

    springrose22 New Member

    I was prescribed 30 mg. of desiccated thyroid (T3), but have also just found out that my adrenals are in very bad condition and have been started on Isocort 5 mg. 4 X day. I started the Isocort about 4 days prior to starting the T3, and was really chicken to go the full dose with the T3, so have been taking only 15 mg. of it for two days now. I think that the T3 is making me feel "funny", as in fluttering in my chest, and sort of in my head too. I phoned the office, and the nurse told me to take the full 30 mg. dosage because that's what had been figured out for me. I know that 15 mg. is a very low dose.

    Has anyone else had any experience with T3 like this? And the big question is, should I listen to my body or to the nurse/DR? So often I have found that they don't really pay much attention to the patient, but to the figures on the paper. Maybe I should take the full dose. I'm so chicken. Help! Marie
  2. mollystwin

    mollystwin New Member

    But mine was compounded from ITC pharmacy, not sure if dosages are comparable? The symptoms you describe can be from T3.

    I started on 10 for 10 days then they upped it to 25 for 10 days then up to 37.5 for a month and upped it monthly until I reached 100. At around 75 my heart just about went crazy bouncing around in my chest. It would even wake me up at night. The dr prescribed a supplement called cardiac Px. That took care of the problem immediatly.

    I don't blame you for worrying about this. Some meds do give really strange side effects. You are getting the heart flutters at a really low dose. I would never advise anyone to ignore the advice of their doctor, but I do go slower with meds than what mine recommends on occasion. Is there any way to get the question to the doctor and not the nurse? Numbers on lab results don't always mean as much as the symptoms we have.

    Good luck with this. I think your body is telling you something and you are wise to listen.
  3. springrose22

    springrose22 New Member

    Actually, I didn't really make myself clear. I am on desiccated T3 which is apparently a compound of T3/T4. On the bottle it says desiccated T3 - 30 mg. And, I just had a really good idea: I am going to phone the pharmacist who compounded it and run all of this by him. It is a naturopath who prescribed it, but he did it in consultation with the pharmacist. My reg. Dr. doesn't know I'm taking it yet, but she is the one who has told me that she isn't familiar with so many things, that I don't have much faith in her. I plan to inform the reg. Dr. about all of this in the next couple of days though. It is just so scarry to have your heart fluttering?, pounding? The fact is I am already so darn compromised, that I'm afraid to finish myself off with the help of incompetent professionals.

    Thank you all for your replies, very interesting, I really appreciate it. I will keep you updated, but right now it's lying down time again for me. Marie
    [This Message was Edited on 02/13/2007]
  4. TKE

    TKE New Member

    I have Grave's Disease (hyper thyroid). Had RAI in 1987 to arrest my thyroid. It hasn't functioned since. My body doesn't convert the T4 hormone into the much needed T3 hormone. Tests showed my T3 levels were pratically non-existant.

    I take 0.125 mg of Synthroid (T4) daily along with 5 mg of Cytomel (T3) 2 x a day. I tried 15 mg a day & went hyper in 3 weeks. I felt it coming on. Only a few days after starting the T3 I had energy like I did pre RAI...we're talking energizer bunny here. Next came the mood swings, headaches & when the racing heart started I knew I was hyper :(.

    Being hyper is dangerous to your heart. It puts you at high risk for heart attack, among other things. I had to stop the T3 & let it clear my system before going back on it. Having FMS the T3 does give me some energy, but not allot. I still need my 3 hour naps in the afternoon. Dang I miss the energy I USED to have.

    I'd think starting 30 mg of T3 right off the bat would throw you into hyper thyroid. If it were me I'd insist on working up to your optimum level slowly giving your body time to adjust to it.

  5. Slayadragon

    Slayadragon New Member

    1) I've always been able to take large doses of T3. At the beginning I quickly worked up to about 100 mcg, but in recent years (at my doctor's urging) I have moved to 165 mcg. He says the maximum people take is around 250 mcg, and that he's not surprised that I respond well to so much.

    2) Despite being able to tolerate so much T3, I cannot tolerate even the tiniest amount of T4 (either in Synthroid or Armour). I get symptoms of severe overdose immediately. I do not understand this phenomenon (and as far as I can tell no one else does either), but it does not seem to be uncommon amongst CFS patients.

    3) Starting Isocort and T3/T4 at the same time seems to be a very bad idea. I would use one for a couple of weeks, then add the other. Otherwise there's no way to tell what's causing any negative symptoms.

    4) To my understanding, there is no way to tell based on lab tests how much thryoid to take. Lab tests can only tell you if you're taking too much, not how much you should take in order to get to the optimal amount for you. I have worked with two doctors on this (one a doctor specializing in hormone replacement from California who had CFS herself, the other my current CFS doctor), and they have been in total agreement about this. The way they do it is to get current thyroid measurements and make sure they're not already above range, give patients a small amount of thyroid and then work up until they get to signs of excess, and then back down a bit. Then lab tests are done again to make sure levels are not too high. The controlling factor, they say, is how you feel, not what the tests say.

    Good luck!

    Best, Lisa

  6. springrose22

    springrose22 New Member

    You're probably right about starting both Isocort and the thyroid med at the same time. I think that I'm going to stop the thyroid med for possibly two weeks but continue with the Isocort, so I can sort this out. Although I'm thinking that these symptoms are less likely to occur with Isocort.

    Also, you say that you can tolerate a high dosage of T3: I took 15 mg. of it, and you say your worked up to 165 mcg. That's about the same amount, is it not? 1000 mcg = 1 mg. Am I right? Very foggy...

    Interesting what you had to say about the T4. Who knows, maybe that's what the problem is. So my plan is to talk to the pharmacist, AND to stay off the thyroid med. for a while.

    Thanks everybody for your help. You've really helped me sort things out a lot. I FEEL like I'm on the edge, I really do. Marie

  7. HurtsToMove

    HurtsToMove New Member

    "Also, you say that you can tolerate a high dosage of T3: I took 15 mg. of it, and you say your worked up to 165 mcg. That's about the same amount, is it not? 1000 mcg = 1 mg. Am I right?"

    Doesn't 15 mg = 15000 micrograms? If so, you took almost 100 times as much.

    Please correct me if my math is wrong.
  8. springrose22

    springrose22 New Member

    I'm looking that up right now. My brain is a mess. Marie
  9. springrose22

    springrose22 New Member

    Well, I was right on the conversion of 1000 = 1 mg., but then I reversed the math. Thanks for pointing that out. But then Lisa says that the maximum anyone takes is 250 mcg. That leaves me with an overdose as you pointed out. Hell on wheels! This definitely needs more investigation... Marie
  10. springrose22

    springrose22 New Member

    He has a website on hypothyroidism and he says he usually starts people out at a low dose of 15 mg. and works up from that sometimes up to 60 mg. Thoughts anybody? Marie
  11. Slayadragon

    Slayadragon New Member

    I checked the bottle and it does indeed say 165 mcg. This is compounded T3 though. Maybe that is different than dessicated?

    My recent thryoid tests showed my T3 right smack in the middle of normal range, which suggests that I've got it right. TSH and T4 were low though. Perhaps I should try the T4 again......although hopefully if the antivirals work, the problem will fix itself and I won't have to.

    Anyway, it's obvious that the preparation that I'm using and the one you're being described are on a different measurement scale. Again though, subjective feelings seem to be the way to go.

    As a side note.....DHEA increases thyroid function, and may mean you need less T3. If you ever consider taking DHEA, that's something to keep in mind.

    Best, Lisa

  12. springrose22

    springrose22 New Member

    I was told that it is compounded and desiccated. Tomorrow, I will speak to the pharmacist and clear this up and let you know. Marie
  13. springrose22

    springrose22 New Member

    Lisa, we are using the same measurement scale. Mcg. is a smaller measurement of mg. We are comparing apples to apples, just a smaller piece thereof. 165 mcg. is .165 mg. Marie
  14. Slayadragon

    Slayadragon New Member

    So are you taking 100x my amount?

    Best, Lisa
  15. springrose22

    springrose22 New Member

    I spoke to the pharmacist and she informed me that although on the bottle that I have it says: thyroid 30 mg., that is only the weight of the desiccated thyroid. What they do is they measure (somehow) the pills into: T3 - 50mcg., and T4 - 200 mcg. I told her about my symptoms, and she said that it was just likely too much for me, and that perhaps the T4 wasn't converting into T3 like it should. She did agree that I shouldn't take even the half pill, but that I might try 1/4 or none until further consultation with the Dr.

    I also told her that I had adrenal exhaustion, and she was quite familiar with that as well, having just learned about that in the last couple of years, because that wasn't taught in med/pharm/nursing schools. Informative lady. Sheds a fair amount of light on my situation! Thank you all so much for helping me out with this. Maybe we've all learned something. Marie
    [This Message was Edited on 02/14/2007]
  16. Slayadragon

    Slayadragon New Member

    If you're like most CFS patients, that sounds to me like too much T4 and (maybe) not enough T3.

    Like I said, there's no good explanation for why most CFS patients need T3 and can't have much T4. It's pretty consistent though.

    Best, Lisa

  17. springrose22

    springrose22 New Member

    Thanks for that last bit of information regarding T4. I wasn't aware that most CFSers can't tolerate much T4. That is very good to know. I'm doing much better today than yesterday WITHOUT the thyroid. Marie

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