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Terrible side effects from the generic liothyronine is cytomel better?

Posted , 14 users are following.

sue01617
sue01617

I had a total thyroidectomy almost two years ago and was placed on synthroid then unithroid and was still experiencing exhaustion, shortness of breath, weight gain, etc.. I finally found an endocrinologist who was willing to prescribe T3. I was feeling wonderful for the first two weeks (like my old self) then started to experience, terrible headaches, stomach aches, high blood pressure. My dosage was 5 mcg, 1 tablet and 1/2 a day. I cut back to one tablet...still headaches. Came off the generic and now am returning back to my exhausted self.

Has anyone else had this experience? I want to try cytomel (the name brand) but am unsure if I will experience the same side effects. I've love to hear from any one who may have had the same experience.

Thanks.

2 likes, 44 replies

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  • Rosiebranston
    Rosiebranston sue01617

    Posted

    I had side effects to Levothyroxine and tried three different brands all gave me side effects.   I am now on ERFA Natural desicated Thyroid and feeling fine now.   Went to see an Endocrinologist last week and he offered to put me on a mixture of levo T4 and T3 but said he thought that I would get side effects with this as well.  So I am sticking to ERFA.
    • sue01617
      sue01617 Rosiebranston

      Posted

      Yes with the synthetics it seems like you always manage the side effects.I've read a little bit on ERFA Natural desicated Thyoid and there was some chatter about bad batches, but it seems like it has worked out for you. I've been to 4 Endocrinologists and the one i'm with now was the only one who would consider T3 when I briefly mentioned Armour and he steered me away. If only the problem was just the drugs and not finding someone who would prescribe. Thanks Rosie for the suggestion, I will definitely keep it in mind.
    • MtViewCatherine
      MtViewCatherine sue01617

      Posted

      Hi Sue, let me be very clear. I went to the natural dessicated thyroid prescription meds after the levo. It was somewhat better than the levo, but still felt like I was taking toxic stuff. It's the non prescription stuff I'm on now, that's working!

      Now that I've been on a dessicated glandular (non prescription, from whole glands) for over six months I finally feel like I've detoxed enough that I'm starting to feel like myself again.

      i feel the synthetics were horribly damaging to my immune and endocrine sustem, and will take years to repair, if ever. The NDT was as you say, (obviously) bad, and also toxic. Very different from when I'd taken the NDT 2 years prior, before the levo. I don't know what they did to the NDT, but it no longer works the way it used to. The non prescription stuff is soooo much better, I would always recommend that first.

      you said your doc steered you away from Armour? Unfortunately, there was a time when the NDTs were constantly "back ordered", in other words, they ran out, and it was often months before the supply returned. This is no longer the case, but docs don't always know there is no longer a shortage.

      Good luck with finding something that works.

    • Rosiebranston
      Rosiebranston MtViewCatherine

      Posted

      Yes I have heard that Armour has been taken over by a different company and they are having problems with it since then.   I have heard that Naturethyroid is very good, I am on ERFA which is the Canadian version of Armour and that seems very good.   I think it's a case of if you find something that works stick to it.
    • tsartin
      tsartin MtViewCatherine

      Posted

      Hi, could you share the non prescription med you are on?

      I was doing well with a combination of Armour and cytomel but can't get the cytomel. It is out of stock and back ordered everywhere.

      Thanks,

      Teresa

    • MtViewCatherine
      MtViewCatherine tsartin

      Posted

      Hi Tsartin, the closest to your own thyroxin is a bovine glandular. ThyroGold us the best. You can order online.

      I've found essential amino acids to be incredibly helpful. I used the amino acids to get off the meds. You can find these on Amazon. I can send you a private message with the name of the brand if you like.

    • tsartin
      tsartin MtViewCatherine

      Posted

      Yes, please PM me with your thyroid protocol and name of products. I'm struggling a bit on compounded Armour thyroid.

      Thanks!

  • MtViewCatherine
    MtViewCatherine sue01617

    Posted

    Hi Sue, unfortunately your story is typical. Feel free to read through the comments here, and find that many folks feel poisoned by the synthetic thyroid meds. They're extremely hard on the body, and worse the higher the dose.

    The best thing you can do is become your own advocate, research thyroid disease and solutions for yourself. Find a doctor who us experienced, comfortable and knowledgeable working with all types of meds. You'll have to really interview doctors for this and the system isn't set up for people to advocate for themselves.

    I strongly recommend reading through the comments on this site from other folks who've experienced unacceptable side effects of this drug, get a feel for the typical problems and how others have solved them, what worked, what didn't. Save yourself a lot of trial and error.

    Catherine

    • sue01617
      sue01617 MtViewCatherine

      Posted

      It has been a brutal battle. I'm 4 doctors in and still looking for a med solution. I did some research on other sites as well as speaking to a pharmacist and did find that generics in Thyroid medications exhibit so many side effects that most people opt for the brand names. I would like to try the natural desicated thyroid but it may not happen right away with my current MD. Thanks for the advise. i'll keep researching.
    • ceola22
      ceola22 sue01617

      Posted

      Hi Sue, I'm in the same boat. I had my thyroid removed a few weeks ago and I feel awful. I had multiple goiters that would not stop growing, but they were not effecting me at that time. My endocronologist stated that they would eventually cut off my windpipe which scared the wits out of me so I agreed to have the surgery. I was prefectly fine in my book prior to the surgery. Im currently taking Levo 88 mcg daily and the side affects for me Are horrible? (2) after surgery I started to feel very bad, terrible hair loss, fatigue, joint, muscle pain, insomnia, etc.  I'm a newbie to this med and I'm trying to find alternatives. Can you help me with knowledgeable info and your own personal experiences. Mainly the do's & dont's of this drug. Any advice? 

    • sue01617
      sue01617 ceola22

      Posted

      Hi Ceola22,

      So sorry you have joined the club. I am two years post thyroidectomy and I first started out with generic levothyoxine and experienced massive hair loss extreme exhaustion, weigh gain etc...I switched to Unithoid and my hair loss was reduced. I have tried both T3 and T4 with little success but I'm coming to believe each persons treatment is as different as a thumb print. I think if you use a name brand you may have less side effect than a generic but a crucial element is finding the correct dosage for your body. Right now I am trying different dosages and it is a bit rocky...I went from 88 mcgs to 75 back to 88. Not sure which is right since both can leave me feeling short of breath. If you have a good endocrinologist work with them to find the right dosage. If I can help answer any other questions let me know. All the best.

    • ceola22
      ceola22 sue01617

      Posted

      So am I, it's the Pitts! Yes, my Endo said the same regarding fing the right dosage. My god how long will that take!? I really wish I would've held off on this surgery or prehaps didn't have it at all.

      I felt pressured by Endo to have the surgery, I was fine with the goiters because they were not causing my any issues and I wasn't in any pain. Now that it's out I have a ton issues and more pain that Ive ever had in my entire life.  I just don't know what to do or where to turn. I can't take this or that. It's crazy!

      However; Imwont let it beat me up, I'll fight it till the end. I'll continue to research and bug you guys until the Endo gets it right. Oh yeah, I'll bug the heck out of her too- Lol! Thx so much Sue you're a sweetheart!

    • ceola22
      ceola22 sue01617

      Posted

      Sue are you in the US or UK? I'm in US- Chicago

    • sue01617
      sue01617 ceola22

      Posted

      Hi again ceola22,

      I live in Massachusetts. So not too far away. Just hang in there, I had all of your side effects now just a couple are tough drive me crazy ??. The worst part was finding a doctor who would listen to me and not dismiss my symptoms. I was over medicated for for almost two years now it's finding the correct dosage. I can't help but wonder what it may have been like for me if I found the right Doctor right away.

    • Rosiebranston
      Rosiebranston ceola22

      Posted

      I'm currently on NDT Natural Desicated Thyroid, I buy ERFA on prescription from a Pharmacy in Essex, but I have had to find a private GP in order to get this, which is expensive, the cost of ERFA isn't bad at all.  Thyroid UK has a lot of info re Private GP's who will prescribe NDT and Pharmacies where you can buy it.

    • Tooterbug
      Tooterbug ceola22

      Posted

      Due to Optic neuritis , my neuro did CRs and MRIs everywhere seems like.

      Found 3 tumors on thyroid but said no problem. WHAT??

      After reading about your thyroid removal plus the hell my sister went through over Hash

      Surgery, I’m really hoping they don’t get bigger.

      I have enough probs with thyroid but without I don’t think I could handle even worse problems.😫

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