Originally Hyperthyroid - Had Radioactive Iodine Procedure - now Hypothrioid

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I began my "Thyrioid Journey" as having Hyperthrioidism for years and under the care of an endocrinologist decieded to have Radioactive Iodine Treatment done in approx. 1999 and have had hypothyroidism since then.  I had been on so many different dosages of levothyroxine over the years and over the last 2-3 years have seen my dosage at its highest (250 mcg 1x daily)which they do not actually have so I had to get 2 scripts a month 1 for 200 mcg and 1 for 50 mcg and then I began to get out of whack again so my doctor said lets just try and see if taking the same dosage of the name brand(Synthroid) makes a difference and it seemed to work for a few months. Then  I began to feel like I was not taking anything at all, you name the symptom and I was experiencing it so I went to see my doctor and my tsh level was 100 and my t4 level was noteably elevated but I don't remember the exact # amt.  The doctor questioned the fact that I was even taking my meds once I finally convinced him that I was and had been he said that since I had began as over active was treated with radioactive iodine and then became under active that my thyroid my be producing a t3 antibody that was fighting  (and winning) the t4 I was taking, rendering the meds I had been taking useless - as though I wasn't even taking anything.  So he ordered the test to check for that issue and changed my meds to "Armour Thyroid" @ 60 mg daily.  Have anyone else out there ever heard of this and if so did the Armour Thyroid medicine work?  How soon were you able to tell a difference and what types of side effects if any did you experience? He said if the test doesn't support this diagnosis that it is beyond his expertise and he would be sending me to an endocrinologist again so I really hope that he is correct and the test results support his diagnosis.  

I wish I could explain how terrible I feel.  I can't find the right words to convey the severity of the feelings that I am dealing with its like warmed over death...... Just the worst a person could possibly feel..... I pray to feel better very soon!!!!!! I can't keep this up much longer!!!

1 like, 6 replies

Report

6 Replies

  • Posted

    Hello Sdison:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease.

    I am sorry to hear your story and many people have horror stories after RAI treatment. The problem is when you take RAI you "kill the gland" and you do not absorb the med correctly in the thyroid. These meds are synthetic and not natural and they assume you have a thyroid gland...if you know what I mean.  You will have to absorb it in the liver, intestines and other areas. So from the start you are getting STRIKE 1.

    WOW,  to 250mcg and it is amazing you are alive to talk about this!  I never heard of that high a dosage!

    Back in 1987, I was put on Levo also and it did nothing for me!  My TSH levels were awful.  I had a great GP who believed me but I could not get why it did not work.  then I went onto Thyrolar a combo of T4 and T3 and very little changed. I got on to Armour Thyroid  also called NDT, and things improved.  NDT/Armour contains a higher amt. of T3 and is made from a pig's gland, and is very close to a human's gland.

    Later on Armour was not stocked anymore in my pharmacy and my GP was talking to an Endo friend of his at lunch, and he told him about just T3 CYTOMEL also called Liothyronine.  Ever since I have had perfect TSH reading and have even lost weight.

    Now in case you are wondering why I talk of my GP, every Endo I have ever seen liked Levo, and despite me telling them it did nothing, I still was told to take it...and it drove me crazy, so my GP is a smart doctor and he handles me now.

    Please try NDT/Armour, you may do well with it. If you are in the USA it may be easy to obtain a prescription for it from a doctor.  If you are in the UK, I am told NHS will not allow it. I am also told it is available online.  You can also consider just T3 like I am on which I hear NHS will allow.

    Keep us posted, many of us have similar problems with meds. Please get off the Levo, and onto something else that will work on you.

    Be well,

    Shelly

     

     

    Report
    • Posted

      Shelly thank you for your information, I was just taken off the leveo and put on Armour late last week and I am waiting to see what changes I experience.  I will never go back on levo or synthroid...... I am in USA and I will keep you guys posted as to how well I respond to the armour.  Thanks again!!!!

       

      Report
  • Posted

    Hiya Sdison,

    I am like yourself, I had the radioactive iodine and boy am I sorry that I ever had this treatment done. I only started on levo this year, before I started the medication I didn't feel too great and since I have started I have felt so much worse. I had to have the medication increased recently and I have now spent the last 4 weeks sleeping or when i am awake just about on my knees with fatique. Going back to doctor's (again) next week to see what can be done.t I have heard good things regarding Armour so I am keeping my fingers crossed it helps for you.

    Report
  • Posted

    Sdison, I would like to endorse Shelly's advice. I too had terrible experience with the wrong dose on a wrong brand of Levo. I also felt like "warmed over death" and staggered to a new doc to see if I could get Armour NDT. 

    You will feel better on NDT because you get all of the Ts, T4, T3, T2 and T1. My only reservation for you is that you can get the right dose, 60mg of NDT is a very low dose (the equivalent of about 100mcgs Levo). It is a good starting dose but if you do not feel good after about 10 days I would consider upping the dose.

    I felt the effect of Armour within half an hour of taking my first pill. For me it was a miracle pill and gave me my life back. I am sure your doctor told you this but take it one hour before breakfast because it should be taken on an empty stomach. Also read up on the conversion of T4 to T3 - you will also see this info in these blogs. Although you will be getting T3 from the NDT it is also useful to discover why you are not making it yourself (eg via the liver).

    Report
    • Posted

      Thanks, and I have been aware of the 1 before eating rule, but thanks for making sure that i knew b/c alot of people don't understand how important the thyroid gland is and that it has a hand in nearly every process your body goes through!!! Thanks again.

       

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up