The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Risk of Low Dose Armour Thyroid long term

Discussion in 'Thyroid Dysfunction' started by roxie60, Jun 28, 2014.

  1. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    Some days I just feel lost and so disappointed with doctors.

    I was put on 1/4 grain armour thyroid 13 weeks ago. Today I read that being on low dose of NDT is not good.

    Here is article about a child but towards the end they indicate this approach is not right for adults either.

    http://www.stopthethyroidmadness.co...ure-a-little-hypo-dont-make-the-same-mistake/

    anyone heard about extended period of low dose ndt having negative effects? Whg do drs put us on this stuff then send us home and not even check to see how we are doing. I sometimes feel like an idiot for listening to these drs but im desperate to get better. I feel like a prisoner in solitary confinement but did nothing wrong.
     
    L'engle likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,296
    Albuquerque
    I took a low dose of Armour for about a year and a half. I stopped when my thyroid function had become normal. I no longer needed it as all my tests--Free T3, Free T4, Reverse T3 and TSH were normal without it. This is just my experience, however.

    Sushi
     
  3. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    Thankz for sharing your experience, I am finding I feel better hearing others experience since I have so little respect or trust in doctors anymore.
     
    L'engle and Sushi like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,941
    Likes:
    22,137
    USA
    @roxie60 I take very low dose Armour thyroid for Hashimoto's (which was just diagnosed in Oct 2013 after I had mono.) I only take 7.5 mg per day (half of the lowest dose) b/c my thyroid was right on the border. I felt great when I first started it but now I no longer notice any benefit. But my endocrinologist feels I should continue on it so not sure what to do after reading your post.
     
  5. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    @Gingergrrl43 wow I thought mine was low dose.....I just started in march. I dont have enough experience to know what to think of this info put out by stop the maddness site. So I was reaching out to those who have more experience with hypothyroid and the treatment strategy. Thanks for sharing, you have been on lower dose than I for longer time so I feel a bit less concerned. It is suspected that I have lyme and know I have other tick borne bacteria and I am fairly confident that my thyroid issues and so many other symps are due to years of being misdiagnosed so my confidence in doctors is at an all time low. I am so close to throwing out everything prescribed and never going to see another doctor in the usa. Ten years, so much loss, I know others have been fighting these issues longer, I dont but by the grace of God how we keep fighting.
     
    L'engle likes this.
  6. Helen

    Helen Senior Member

    Messages:
    2,004
    Likes:
    3,013
    Hi @roxie60 ,

    As thyroid lab tests not always are valid I do recommend learning about all possible signs and symptoms connected to hypothyroidism. Whatever your lab tests tell, then you are able to communicate your state of hypo.. with your doctor.
    A good site is www.stopthethyroidmadness.com. Dr. Mark Starr has also described many seldom presented signs and symptoms in his books.
     
    zzz likes this.
  7. Tammy

    Tammy Senior Member

    Messages:
    1,017
    Likes:
    1,279
    New Mexico
    I believe a lot of medications should be taken on and off.................if one takes something for their thyroid every single day wouldn't that perhaps send a message to the thyroid that it doesn't have to do its job?
     
  8. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,979
    Midwest USA
    It is really hard in my experience to add to either thyroid or cortisol production. Once you start taking in exogenous hormone, your own production becomes lessened or suppressed due to the feedback mechanism. This is particularly true of thyroid hormone like NTH containing T3. It will drop the TSH so not as much will be made by the body and you may be taking less than what you were making previously. It's very difficult to sort out.

    Do you feel more hypo? How are your temps? I would ask to get labs as well to compare your FT4 and FT3 to where they were pre-treatment and see if those numbers have improved.
     
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,941
    Likes:
    22,137
    USA
    @Tammy, I worried about that too but my endo didn't think that was the case for me. My thyroid functioning was right on the border (with high Hashimoto's antibodies) and he felt that taking a super low dose of Armour would correct all the numbers which it has. He always tests for Free T3 and T4 and not just TSH. We tried raising it from 7.5 to 15 mg and it almost made the numbers hyper thyroid so it was not needed and we kept it at 7.5 mg. He also had me do an ultrasound of my thyroid which was totally normal.

    He is not a CFS expert but he is very knowledgeable re: endocrine issues and he hopes that as I treat the CFS, I will no longer need the Armour and can eventually take it every other day or even stop it. But at this point, he feels I need it and I tend to agree. But I know there are a million opinions out there so please everyone do as advised by their own doctors (or get a second opinion if you don't trust the first!)
     
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,941
    Likes:
    22,137
    USA
    @roxie60 I bought the Stop the Thyroid Madness Book too and it seems pretty good but I've really just glanced through it and have not read it in detail. I was not familiar with any problems with taking low dose Armour but please don't quote me on this and check w/your MD. I am not sure how thyroid relates to Lyme as I don't have that diagnosis (but have very high EBV titres.) I've had those moments, too, where I wanted to throw out every med and supplement as I felt nothing was making a shred of difference but somehow I keep fighting and trying new things hoping for a cure in my lifetime (or at least major symptom relief.) I think it is by the Grace of God as you said.
     
    roxie60 likes this.
  11. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    My temps were low for longest time. I have tracking temps now and they are all over the place (95.9-99.2 but mostly low 97). I have had chills but now it is eummer it is less frequent. my problem now is to stay cool, i get really hot easily. I really dont want yo take any but was trying to give my body support since tsh was rising, went down with synthetic but I stop since not impressed with the endo and next tsh was rising again, ft4 and ft3 were ok if I remember. will be testing again in a few weeks tsh ft3 and ft4, any other thyroid testing I should request.

    Everyone who has replied thank you, feeling calmer today.

    yes Ema I am concerned with not letting my body depend on medications long term. I am not giving up that I can get back to functional and increased quality of life. But I want to take minimal medical approach. I do feel the 12 weeks of abx I have been on are helping, I have seen small improvements and I am grateful. Unfortunately the fear of 10 years of relapses after so called recoveries has me doubting and I know I will have to just give it more time. Determined to beat this and regain health, life. So much has been lost but im still hoping to ride my motorcycle again, to hike, to garden, to read a book in normal time frame, make new friends to walk with through yhe rest of life.
     
    Gingergrrl likes this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,941
    Likes:
    22,137
    USA
    @roxie60 I am glad you are feeling calmer today and I also feel so much better when I post something here and get so much feedback and support.

    Although I am hesitant to use the word "Cure" (for myself or anyone) I truly believe we will regain health to do some activities that we enjoy again. I feel very hopeful for you so please do not give up.
     
    roxie60 likes this.
  13. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    Wow, my Lyme brain acting up again. I just came here to create a post and ask about STTM's low dose thryoid med warning and look what I found ---- a thread I already created on the subject :bang-head:
     
  14. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    Anyway here is another link where they mention it. I stopped taking my 1/4 grain. Various reasons, one not sure how to take this opinion from STTM, I did not see them link to any specific scientific study supporting this claim and I have ben having sleep issues again where I just not going to bed at a time I can get up early enough and not eat anything with the AT.

    It is a challenge sometimes trying to remember when and wen not to tak supplements and medicines and then hope you feel well enough to eat if you need to or not eat if required.

    http://www.stopthethyroidmadness.com/mistakes-patients-make/
     
  15. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    I was thinking the same thing @Tammy . Not sure what the science is related to our bodies getting 'lazy' in the presence of treating medications
     
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,941
    Likes:
    22,137
    USA
    @roxie60 There are so many varying opinions on thyroid stuff, it is hard to know what to do or think. I really trust my endocrinologist and for now he feels that taking low dose Armour will help my Hashimoto's antibodies from attacking my thyroid. Since I started the Armour, all my numbers have improved. He said there may come a time (ideally if my ME/CFS symptoms improve) that I will only need Armour every other day and hopefully can then stop it completely.

    As far as timing, I often take it really early in the morning, along with a couple other low dose meds, and then go back to sleep for a few hours. By the time I get up, the hour has passed and it is okay to eat. I write down what time I took it so I know for sure. My endo said not to take minerals like potassium, magnesium, salt stick tablets, etc, within four hours of taking it but other vitamins and supplements are okay. But in the beginning I was very confused and can totally relate.
     
  17. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    I did not know about the magnesium. I think if I could get sleep under control again then I would go back to early am dosing. Im so glad it is helping you. My numbers got better also in the ssynthetic but I never felt any better.
     
  18. bertiedog

    bertiedog Senior Member

    Messages:
    914
    Likes:
    1,151
    South East England, UK
    @roxie60 If you have consistently low body temperature then definitely your thyroid won't be working properly and maybe your adrenals too. Have you done a 24 hour saliva cortisol/DHEA test to see how strong they are.

    Personally I have hugely benefitted from over 12 years of NT. I had borderline Hashis with a low TSH but also low free T4 and not very high free T3 and over the range anti-thyroglobulin antibodies. The NHS wouldn't treat me but in fact I need at least 2 grains of NT plus just 25 mcg thyroxine and more in the winter months. I also need 7 mg Prednisolone because of adrenal insufficiency, again not diagnosed by the NHS but a private Endo.

    I have had a DEXA scan and my bones are those of a 30 years despite being 66 so if your body needs these hormones then they don't harm you. However it do know that if one's adrenals aren't strong then any dessicated thyroid product will feel horrible.

    Pam
     
    roxie60 likes this.
  19. roxie60

    roxie60 Senior Member

    Messages:
    1,787
    Likes:
    597
    Central Illinois, USA
    I just collected a 24 cortisol for a hormone, cortisol, dhea Genova Diagnostics but I looked at last years test results and do not think the results reflected my experience not to mention the hefty price tag. I did another lab test 4 days earlier than the GD test, another 24 hr saliva test, and the cortisol results reflectec what I wax experience. So niw im hesitating to send the GD test in this week. Thinking about trying another lab called MyMedLab online that will run all the same tests except melatonin. Waiting for feedback from other forum members that have used that lab. I can get the same tests for half the price.
     
  20. Helen

    Helen Senior Member

    Messages:
    2,004
    Likes:
    3,013
    @roxie60 I agree with Pam/bertiedog. It is just about supplementing the hormones that you can´t produce. If taking more than your body needs it will suppress your own production, but you will also get symptoms that use to be really bad. Elevated pulse (keep also track of your morning pulse and compare it to different doses of hormones etc.) and sweating and a feeling of being wired are the most common symptoms. Without aproper thyroid function you can´t fight the Lyme disease properly. It affects the immune system very much. A low thyroid is wellknown to go with infections.

    Your changing body temperature could be from your infection, but also from changing levels of antibodies. Did you have these checked when you had a high body temperature? Low cortisol (causes normally low blood pressure a.o.) is another factor that is described. A doctor with Hashimoto´s herself recommended to follow Dr. Rind´s temperature curve

    Also be sure that you have enough iron (high ferritin in range), selenium and iodine for a proper thyroid function. Gluten and amalgam can cause antibodies. You might have heard of all the above, so FWIW.
     

See more popular forum discussions.

Share This Page