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  1. Jeanette Hust says:

    I had regular Thyroid levels, so for almost 5 years my many doctors would not treat me. I finally got treated with Levothyroxine, but I was still very sick. I got Thyroid Face, where all my facial muscles started dropping to where I had to hold my eyes open to read and watch TV. I lost almost all of my thick hair and my skin went to hell and the aches and pains in my legs almost made me pass out. I told my Dr. I thought I needed Armor, they did not even believe I had a Thyroid issue, so that took another 2 years to get on Armor and another year to get to the right level, so I take Armor and Liothyronine. I feel 95% better, but I see that I am still losing hair, my skin is aweful, I feel like I am again 10 years for every 1 year I have had this issue. Is there anything else out there. this is the best with all the different levels of Armor and Liothyronine that I have tried these levels have the best results for me, more and I feel bad again. I can tell that I have a cellular breakdown. I am scared of what is going on inside my body if the outside, with the most expensive products are still breaking down.

    1. Jeanette, I’m sorry to hear all you are going through. It is a sad situation how difficult it is to find optimal thyroid treatment. It shouldn’t be so difficult in this day and age but it is for many of us with hypothyroidism. I hope the day comes when this changes. Many things come to mind when I read your story. One, could it be that your dosages of thyroid medication are not optimal for your body. I feel my best when my Free T3 is in the top quarter of the normal range. There is a chart in this article here with the 6 key lab tests and optimal ranges: https://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/

      Then I wonder could it be that you are reacting to ingredients in your thyroid medication brands. This is a very common scenario and each brand has different fillers. Here in this article you’ll find a chart of ingredients: https://hypothyroidmom.com/what-you-must-know-about-your-thyroid-medicine-falsehoods-formulations-and-fillers/

      And then I wonder if you’ve been checked for adrenal dysfunction. Here’s information: https://hypothyroidmom.com/10-signs-you-have-adrenal-stress-and-natural-treatments-for-it/

      Good to have you at Hypothyroid Mom.

  2. Rhonda Shields says:

    7 years ago my dr removed all my thyroid but a tiny piece now I am on 300mcg of levothroxine the last 2 times i had bloodwork the Dr says it looks like I’m not taking meds has anyone had this to happen would love to hear from you.

    1. Tammy French says:

      I just started taking levothroxine June 1 2020. Most of my six siblings have thyroid issues.. I was doomed I guess. I have always been a small person but started gaining weight.. I’m hoping this is the problem like the others

    2. Tanya Albertson says:

      That’s a very high dose. I was on it and switched to synthroid. That worked better. There are a lot of fillers in levothyroxine. Sometimes they inhibit the body of absorbing the medicine correctly. See if your doc will switch you to Synthroid.

    3. Catherine Reid says:

      When and how you take your medication is very important. Levothyroxine should be taken on an empty stomach with no food or any other medication, an hour on either side of taking it. Also do not take it with coffee. Do you take ant selenium? It sounds like you may have absorption issues. I have no thyroid and was on 200 to 300mcg of levothyroxine but still felt awful! But once I learned about how and when is best to take levothyroxine, my absorption was better and I actually reduced my meds to almost half and feel so much better. Selenium also helps with conversion . Lots around about these issues on internet but doctors fail to tell you this! I have no thyroid at all for 50 years.

    4. I had to add liothyronine to my regime. Helped my body use th elevothyroxine. Was on 300 and TSH just kept going up. Just started 4 months ago and already TSH down to 4.

  3. I have an underactive thyroid, ulcerative colitis and menapausal, I’m on the lowest dosage of thyroxine as any higher sends my heart rate through the roof. My skin pinks up when I am burning hot which is 90% of the time, the rest of the time I’m freezing cold, I eat healthy but have gained approx half a stone a year for last 12 yes, only time i lose weight is if I have a major colitis flare up and end up in hospital and can lose 2-3 stones in couple of weeks, then gain it back with endless steroids for next few months. I get major joint pains and take vitamins etc to help, I now also have gall stones and plantaris in my feet so also had injections to help with that. I wish there was something to help me.

    1. ANITA BHATIA says:

      LIKE ME. PLEASE HELP SOMEONE

      1. I’m the same.i can’t get help doctors will not put levothyrixine up.i have heat problems and menopausal it pur a lot of strane on my marriages. Please some one help my life is ruled by my body.

    2. I thought you were talking about me! I’m there, and it’s not getting better. Levothyroxine is not working for me…112mg at the moment!
      Be well and be safe,
      .

  4. Isabel sevilla says:

    I’ve had hypothyroidism for like about over 10 years ..and it affects me more in the heat then in cold weather ..I cant sleep at night my arms start to hurt and they get really really cold ..I’ve also started getting aches in my legs as well ..in the colder weather I’m fine ..its so frustrating

    1. Janice PACIFICO says:

      CHECK YOUR D3 LEVELS

  5. Anyone with Reffetofs syndrome out there?

  6. Hi. I am 62 years old and been taking cortef and synthroid for the last 27 years. After natural childbirth I was diagnosed with Sheehan’s Syndrome. My endocrinologist retired a few years back and I have not been feeling up to my normal levels for at least 3 years now. Can you tell us anything about Shehan’s syndrome? And possibly recommend a very good Dr. I’m the 48602 area code?

  7. Diane Landenglos says:

    I just had a TPO blood test. Results were negative (which surprised my Endocrinologist & me). My TPO was 15, I have a pretty thick family history of Hashimoto’s, as well as malignant thyroid/nodules and recently discovered, through a Thyroid specific ultrasound, that I have a goiter w/a nodule. I have many symptoms, as well. Why are we (me & doctors), doing the wait & see treatment plan. So frustrating.

    1. Hi Diane, It is a very frustrating situation when Hashimoto’s can show up with normal antibody levels. I recommend that you have your antibodies, both Thyroid Peroxidase Antibodies and Thyroglobulin Antibodies, tested several times over the course of time. It can take multiple tests to catch elevated antibodies. Even then it is possible to show up normal on lab tests. I wonder if the ultrasound indicated whether the texture was homogeneous or heterogenous. Heterogenous is the typical texture appearance with Hashimoto’s. I too am in a similar situation with normal antibody tests multiple times. A biopsy can give conclusive results for Hashimoto’s but I have not done that since I have no other reason to do it. If you are told to have your goiter and nodule biopsied at some point if it becomes necessary be sure to ask for them to determine whether or not you have Hashimoto’s from the results. Given your family history I would assume you have hypothyroidism and do all the things that I mention at Hypothyroid Mom to balance the immune system. That is what I do and I actually feel most things related to autoimmunity are things everyone with hypothyroidism should look into.

    2. Diana Buckmaster says:

      When I was married in 1988 I weighed 85 lbs. After my 1st child in 1989 I was diagnosed with Hashimoto’s Hypothyroidism in 1990. Was on various meds for many years then after my 2nd child in 1995 I had a huge goiter . In 1998 I has Radioactive Iodine Treatment done. In 2000 had thyroid removed. In 2001 was diagnosed with type 2 diabetes. I weighed 185. I am 5 foot tall. My meds changed frequently. I walk about 5 miles a day, eat healthy. No sugar. Only unsweetened tea and water to drink still 180 lbs. Beyond frustrating.

      1. Anyone with Reffetof Syndrome out there?

      2. I just am responding that I hope you got help. It seems like you posted 5 years ago and nobody answered. Childbirth made me quite sick. I was the one who diagnosed myself with thyroid disease based on a magazine article and then had to push for bloodwork. My Tsh was quite high. It has been 25 years. I’m on synthroid. Levothyroxine makes me quite sick. But the doctors don’t listen. I hope you’ve gotten help. Hang on.

  8. Carla Ricketts says:

    Hi, is there a blood test for Hashimoto’s as I’m on medication for underactive thyroid alreadly. my symptoms match hastimotos.

    1. Hi Carla, There are two thyroid antibodies to test for Hashimoto’s: Thyroid Peroxidase Antibodies & Thyroglobulin Antibodies. All the best from Hypothyroid Mom.

  9. sounds to me like a digestive problem. I just found out that is what is wrong with me. My system is ass backwards. used to be if i ate processed food i was fine and could go to the bathroom (2). then it started making me gain weight and i am usually skinny. then i started gaining weight for no reason and tried getting rid of processed food and eating whole foods (root). now my system wont even digest that and i look like i am 4 months prego. wtf. i go pee alot but no no 2. w t f is wrong with me. guess its time for a colonoscopy. unreal. i am on thyroid medication but cant really take it because it makes me wired and tired at the same time and makes my pupils look real small like i am f… high. and i am on the lowest dose of armour. help!

  10. I am 58 and despite my complaints to my doctor about my healthy eating, but a steady weight gain, my being cold all the time, can’t concentrate…on and on…he said your TSH is “normal”. Eventually I landed a hormone doctor, for my estrogen and progesterone, and she said, hey, you have a hypothyroid. I’ve tried Synthroid, it was what my regular doctor was willing to prescribe, that made my heart problem worse, then Armour, same thing, and now Nature Throid. And suddenly, I’m hot all the time! I can’t get cool enough, and I haven’t lost weight, despite my eating habits and walking regimen. My hormone doctor has increased my Nature Throid this week, hopefully I’ll find relief. But the being hot all the time, it’s not menopausal, it’s not hot flashes, it’s hot 24/7. When I looked up all the thyroid medications, every single one of them listed “heat intolerance” as a side effect. So I’m beginning to think it’s the medication and not my condition that’s causing the heat intolerance.

    1. Have you tried the elimination diet? Even “healthy food” can be a trigger…

    2. Robyn Reed says:

      Hi Sherry, I found your post very interesting. I have been on Thyroid medication for about 5 years now and I have become intolerant of heat. I too, am hot 24/7. The other day I was outdoors and it was windy and cold, everyone was wrapped up and complaining of the cold. I was in a T shirt and was hot. You may have solved the problem, it may be the medication. Good luck resolving the problem.

    3. I have the same problem withy body wayyy overheating and I can’t cool down quick enough,I had a complete Thyroidectomy 7-8 years ago,Was put on synthroid 125 mcg,had labs 2 months ago, synthroid was bumped up to 150,This overheating started a year ago and this summer it’s really really bad and getting worse!! I have severe nauseas/vomiting and sour stomach and bad constipation,then diarrhea.. I had rectal bleeding 3 weeks ago,I’ve had 2 colonoscopy and 2 EGD,Dr wants to do another colonoscopy,he removed 2 abnormal polyps,took biopsies,I’m waiting on a follow-up..I was told in January I have Gastropraris,I can’t get my BP regulated,it runs 180-200/100-110 ,my BP meds was increased in mg,still didn’t help,I also have severe joint pain, especially my hips and can barely walk most days, early mornings,my right leg stays numb, tingling….I feel like I need a Neaurologist

    4. Finally! I’ve been trying to find away to describe the waves of heat the plague me daily. NOT hot flashes! I know the difference. Started a few months back, it felt like my body was trying to sweat, but couldn’t. Hot for 30 seconds then cool down, repeat, sometime all day long. If I sit still this awful symptom seems to not be as intense. However, if I try to do any activity, from cleaning house to yard work, the heat waves are debilitating.
      I am very scared at this point that I can’t get a doctor to listen, they just base their decision to not treat on numbers: (which apparently are normal)
      Free T4 0.6
      Free T3 3.0
      TSH 1.9
      I’ve had only one doctor say he thinks I alternate between hyper/hypo, but any advice other than avoid dairy, gluten, soy ( he has the same advice for every patient he sees).
      In last 12 months I’ve had :
      30 pound weight gain (9 months time, no eating changes)
      Severe insomnia
      Anxiety( new to me)
      Severe cracked heels
      Heat/cold intolerance ( heat waves)
      Dry eye, hair
      Pain throughout body, tendinitis requiring injections
      Diarrhea/ constipation
      Low grade fevers
      Gallbladder issues
      Sadness
      Fatigue
      Lack of motivation
      Swelling
      Ulcer
      Low libido
      Numbness in foot
      Carpal tunnel…. and so much more

      Will I become another statistic, being told it’s all in my head, there is nothing wrong. My health has steadily declined for many years with a family history of thyroid issues. I have children at home still, one with disabilities, several with autoimmune type symptoms. I want to be able to help them not become as ill as I have. I’m not sure howmuch more this body can take as far as putting on the smiley face everyday. I get up and do the best I can everyday, but would love to sleep a day away here and there, right?! Lol!!!
      I just don’t want my kids to remember mom as never feeling well and darn it I want to enjoy my life:). Any input is appreciated and I’m sorry for the long post, just couldn’t believe someone was describing these heat issues.
      Kindly, Rachel

      1. Hi Rachel, I can identify with at least 10 of the issues on your list and can sympathise with you. I understand your anxiety that your children are going to think of you as someone who does not feel well a lot of the time because I too worry my family think the same. As the symptoms are numerous and appear randomly and may be some or one or two at a time I tend to not mention them as Worry as to adult children’s views of me.
        I am hypothyroid and am a male so this can affect both sexes. My Doctor says My medication is sufficient but after reading posts on a couple of forums are going to go back armed with more facts.
        I hope you manage to alleviate some of your symptoms and your family can come to accept your illness for what it is a terrible blight but not what defines you as a mother.

  11. Adriane Valdivia says:

    I have been trying to get pregnant and I decided to go to an endocrinologist. She diagnosed me with hashimoto’s desease.
    Now I move and I am in Clayton NC waiting to be seen for a new doctor. So far synthroid and metformin has been pre-scribe.
    Do you know any doctors in the Raleigh area? Can you refer me to more info?

    1. alternative to Metformin is NanoGluco from Biopharma Scientific. Let them know Lisa Miller is the referring health coach.

  12. Ruby Butler says:

    I need help in locating a endocrinologist for my daughter. She had her thyroid removed in college. And has struggled since with finding a doctor that does more than look at labs but also listens to how she is feeling. She is having problems getting the Nature thyroid medication that is the only thing that she has felt close to normal on in 20 years. She also struggles from a poor adrenal function. We live on the Lexington KY area. Have had no luck finding a good doctor. Any list or recommendations? The ones she likes are not taking new patients. HELP

    1. NP Thyroid is similar to Nature Throid. Look them up online at https://npthyroid.com
      there are no shortages on this right now and CVS can order it

  13. Im 66 years young! have been on thyroid replacement for years until 2013. im on no pharma scripts now, except for antibiotic for sinus infection. diagnosed with hypothyroisism, low coritisol, several thyroid nodules and one is calcified. I live in Fairbanks Alaska (7 months in dark in winter). I do take Bio D Emulsion drops. Can you tell me what causes thyroid calcification? No nuclear exposure. I was on Iosol II TCPS drops 15 daily of a friend, my thyroid nodules grew larger, and Endo Dr. told me to stop TCPS Iosol II drops completely. Can you offer some assistance? Truly, Bella

    1. Is Iosol Iodine drops?

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