Hi, I just started Cytomel. My doctor is treating me for Wilson's syndrome. My labs fall in the normal range but just barely in the normal. I tired a supplemental hormone she recommended but it made me feel worse. So she is treating my T3 only. I am not on anything else. My question is this: The first day I felt amazing. I hadn't had this much energy in a long time and got excited that I am getting my old self back. I was super productive and so forth. Then the second day I take it and and I felt tired. Took my second dose and felt like I was in a coma and ended up taking a nap. I am on the lowest dosage bc she wanted to make sure I didn't have any side effects. So 5mg twice a day with in an hour on each other. My question, is it normal to feel so tired? I know I am only on day two so it's early just a drastic change from the first day. I also have Chronic EBV and autoimmune issues so I wondered if I did too much since I was feeling so good and wore myself out. Any advice or suggestions?
Labs:
T4, Free 1.0
T3, Free 2.4
T3 Reverse 17
Vitamin D 25
Thank you in advance.
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maymay75
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Hi maymay, I don't know why this happens but I know another person with Lyme infections and when you are so very ill, you just can't handle T3. Have you had any other treatment? Sometimes adrenals are too weak. You may need to drop the T3 to one dose and add adrenal support like cortex. What hormone did she give you, pregnenalone, dhea? Progesterone might be helpful.
Thanks for the quick reply. Today I was tired but didn't go back to sleep, stayed up and then a few hours later took my Adderall bc it was a day I couldn't afford to be in a coma. I was given the Adderall to help with energy and get me through days I need it and I take the lowest dose and usually half it and was hoping not to have to take it anymore. I honestly thought on the first day I would be done with "fake energy" and get my real energy back. I know my adrenals are in bad shape. I was on progesterone for the early part of the year which helped with some symptoms I was having (swelling and terrible periods) but after about 4 months my symptoms came back and worse and when I stopped everything got better. I have been off progesterone for a few months now and the swelling has come back. So at my last appointment my doctor who is also a naturopath doctor as well decided to give me a once monthly progesterone shot that also has a bunch of B vitamins and D in it in addition to Cytomel.
I'm glad you are seeing a naturopath. There are so many books with newer research based on the series of Broken Brain, Betrayal, The Thyroid Secret nailing down the complex symptoms and causes of autoimmune disease. They are tackling Alzheimer's and Autism and NOT using pharmaceuticals for the most part. Conventional doctors really have little to offer because they ignore deficiencies and diet. Functional medicine will try to find the source or trigger but yours is probably the EBV. They have found the virus in thyroid tissue. Izabella Wentz is a pharmacist and a patient and her book might help you find some answers. She was actually exposed to the Chernobyl incident when she was a child. A holistic approach is essential so I hope your doctor is really able to help you. It takes a lot of time to absorb all this which is difficult when you are trying work and live your life. This friend with Lyme has gone through so many treatments: intravenous, injections, some I can't spell and right now the latest may be a nervous system treatment because there is a definite break between the sympathetic and parasympathetic that is involved. I posted something about that two days ago. I've also suggested proteolytic enzymes might help with autoimmune consequences. I think I've gone too far, ha. It is a shame that younger people are having more problems with their immune system probably due to the toxins we are polluted with in our food and it's almost inescapable. I could go on and on about the microbiome which a baby receives from the mother during natural birth and nursing. Your microbiome determines a lot about your health. Sorry to bend your ear so long maymay but you need input in your recovery so the more you know the better. Keep asking questions here.
You can bend my ear any day! That is why I am here trying to learn as much as I can and get all the resources anyone will share with me, so thank you! I am still learning about all of this and it's been a journey any insight and help from those who have had luck or maybe know something I haven't yet figured it out is all helpful. I will def look into the resources you have shared. I am lucky to have a naturopath who is also a doctor because it is actually covered by insurance so that helps lessen the cost. The bad news is we are military and are finally retiring so one more move...which means another new doctor and hopefully I will be able to find someone like mine who is willing to work with me out side of traditional medicine to help me get better. We have lived in our current area for four years and this is my fourth doctor. I get the you have chronic fatigue there is nothing you can do for that every place we have moved and this is the first doctor who has actually figured out I had EBV and said the inflammation from the virus and autoimmune stuff is working against me and she has been working with my diet and gut had the right blood work done and hasn't given up on me because she wants me to feel better. I have been with her a year and it has been up and down. I agree there is a bigger picture to our health. I just had testing done for my son's microbiome bc he has gut issues and in the last four years he broke his leg in five places and had four surgies and his gut validated he doesn't have any of the good bacteria he needs so we are on a good regime now. I was reading a little online and someone suggested if your adrenal are low functioning that taking Cytomel 3 to 4 hours before you normally wake up is a good idea bc that is when they need the T3 so I set an alarm last night to wake up this morning at 3 and I am going to try that for a week to see if that helps. Thanks again for the reply and for all the great insight and information.
maymay, I think you are ahead of the curve. I take my cytomel at bedtime. I hate to have you interrupt your sleep at 3 a.m. I assume that time is chosen because it's when you are lowest in thyroid and adrenals will soon be putting out cortisol to wake you up so they may match up around 6 when your cytomel peaks. But I really don't know if that's important. Have you had a cortisol saliva test? It's taken at four points during the day and your level should begin at the higher part of the range and end up at the lowest. It's a good test for active cortisol.
Your poor boy. I want to post one more person I really trust online. No births in a hospital are good births. None of this is our fault. We have been misled and medical professionals have put profit ahead of our health. But he's got a great mommy now and I wish the best for both of you.
Yes I had the TSH and antibodies test. I will upload the ranges, I don't have them on me at this moment. I realized after my post that the ranges probably would have been good, sorry about that. My doctor diagnosed me with Possible Wilson's syndrome based on my test results, symptoms and body temperature is constantly just below normal.
Yes, I realise he diagnosed you from your test results and symptoms, what I don't understand is why he diagnosed you with Wilson's syndrome rather than hypothyroidism.
I am not at home at this moment so I don't have the test results on me to post but I will as soon as I get home. She did actually diagnose me as hypo and tried a supplemental thyroid plan since I was still in the normal range but it made my symptoms worse instead of better. The supplement was to treat the T4. So since I didn't have luck that route she decided to treat the t3 instead.
So, in other words, she gave you levo? Levo and T3 are not supplements, and they don't treat anything. They are thyroid hormone replacements, replacing the hormone your body can no-longer make for itself.
So, how long did you take levo? And what happened, exactly?
No she didn't give me Levo she gave me a supplemental vitamin that was called thyroid support which she said would help my T4. I took it for four months and started swelling all day long and gained about 15lbs on it and over all felt ill.
Here are my levels:
TSH 1.9 range 0.40-4.50
T4 free 1.0 range 0.8-1.8
T3 Free 2.4. range 2.3 -4.2
T3reverse 17 range 8-25
Ferritin 16 range 10-232
thyroid peroxidase antibodies was 1 range is <1
EBV viral capsid ag(VCA) AB(IGG) 3.38 range > 1.10 is positive
EBV Nuclear AG(EBNA) AB(IGG) >5.00 range > 1.10 is positive
These were all my levels as of last summer, I go in Monday to retest my levels.
Oh, those thyroid so-called supports are very bad news! Did it contain iodine? I've never heard anyone ever claim they work, apart from the manufacturers!
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That is why I am here trying to learn as much as I can and get all the resources anyone will share with me, so thank you! I am still learning about all of this and it's been a journey any insight and help from those who have had luck or maybe know something I haven't yet figured it out is all helpful. I will def look into the resources you have shared. I am lucky to have a naturopath who is also a doctor because it is actually covered by insurance so that helps lessen the cost. The bad news is we are military and are finally retiring so one more move...which means another new doctor and hopefully I will be able to find someone like mine who is willing to work with me out side of traditional medicine to help me get better. We have lived in our current area for four years and this is my fourth doctor. I get the you have chronic fatigue there is nothing you can do for that every place we have moved and this is the first doctor who has actually figured out I had EBV and said the inflammation from the virus and autoimmune stuff is working against me and she has been working with my diet and gut had the right blood work done and hasn't given up on me because she wants me to feel better. I have been with her a year and it has been up and down. I agree there is a bigger picture to our health. I just had testing done for my son's microbiome bc he has gut issues and in the last four years he broke his leg in five places and had four surgies and his gut validated he doesn't have any of the good bacteria he needs so we are on a good regime now. I was reading a little online and someone suggested if your adrenal are low functioning that taking Cytomel 3 to 4 hours before you normally wake up is a good idea bc that is when they need the T3 so I set an alarm last night to wake up this morning at 3 and I am going to try that for a week to see if that helps. Thanks again for the reply and for all the great insight and information.
Adding NDT and dropping Cytomel
Cytomel and Wegovy (Semaglutide)
Tirosint and cytomel over ndt
