The Gray Areas of Reported Patient Experiences

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Did you know that years of reported patient experiences, which the Stop the Thyroid Madness website and books are about, has never represented…

stern black and white rules (to follow or else),

narrowly defined methods (to follow or else),

only this or that supplement, or in unneeded massive amounts for many, to achieve a particular result (to follow or else)?

Additionally, Stop the Thyroid Madness has also never been about making something up.

Stop the Thyroid Madness has never, ever been about negativity towards you the patient for daring to think outside the box. It’s that daring that resulted in the very information that has been compiled on STTM!

Instead, Stop the Thyroid Madness is a compiled site of information about “here’s what patients have reported repeatedly over the years which worked and why that got them well” which is ultimately for you to become your own best advocate as you work with your doctor.

Here are a variety of examples of those Gray Areas of Patient Experiences (with a few Givens) below:

SYMPTOMS of HYPOTHYROIDISM: It varies! For example, while most may see weight gain or difficulty losing, a small minority can’t gain weight at all. Or while many have energy issues, others are fine yet have rising cholesterol or rising blood pressure. On and on. See all possible reported symptoms here.

THE TSH LAB TEST:   Now it’s a given that using the TSH to diagnose by can leave millions with clear hypothyroidism undiagnosed. Why? It doesn’t rise at first when one is very hypo! Patients have seen that repeatedly over the years. And when an optimal amount of T3 and NDT, it’s a given that for a high percentage, it will be below the range…somewhere, meaning that is a gray of where below the range it will be for this body. P.S. we found it’s never about dosing by the TSH anyway. It’s about the free T3 and free T4, plus removal of symptoms, a good heartrate and blood pressure, etc.

OPTIMAL AMOUNT OF NATURAL DESICCATED THYROID (NDT):  it varies! Thought it happens and is rare to be optimal below 2 grains..and maintain it…it can happen. More though start being optimal in the 2 grain area. Some are optimal in the 3 grain area. (Janie is at 3 1/2 grains, as just one example) Some are optimal in the 4 grain area and up. On and on. The given: in spite of the different amounts, optimal nearly always seems to put the free T3 towards the top part of the range (notice the word “part”–it’s never an exact number), and the free T4 around mid-range for the vast majority (and this occurs with optimal iron and optimal cortisol–you can’t get optimal without having problems if iron and cortisol aren’t optimal, too.

OPTIMAL AMOUNTS OF T3-only:  For those on straight T3, and with the right amounts of  iron and cortisol, patients report feeling their best, without any negative results, when their free T3 is at the top of the range, and some report even slightly over. That was huge information. But the gray area was always how much T3 meds achieved that complete removal of symptoms, and which didn’t backfire later due to being on too little. Some see it at 50 mcg; others at 60 mcg, or 70 mcg, or 80 mcg…and some have to get into the lower 100’s of mcg of T3 to finally get rid of al their symptoms and maintain that.

T4-ONLY USE:  A strong gray area we noticed: some who started on T4-only like Synthroid or Levo did much better; others never did well from the beginning. But one given that patients on T4 were admitting to–symptoms creep up the longer they force their bodies to live for conversion alone. T4 is not the active hormone: T3 is. And there are too many variable that will eventually inhibit the conversion of T4 to T3. And a healthy thyroid gives some direct T3.

WHEN TO DO THYROID LAB WORK IF ON MEDS: For many years now, we learned it’s about taking our meds one day as usual (which is often two times a day for NDT, and three for T3, but there are variations—those gray areas), then doing labs first thing the next morning. Why? After taking either, our free T3 levels are going to peak anywhere from 2-4 hours according to a variety of literature. Then a slow fall for up to 12 hours–also in a variety of literature. i.e. we don’t want to test what’s going on for approx. 16 hours. We want to see what we are holding onto and doing it the next morning has worked well for over 15 years now.

WHO GETS AN ADRENAL PROBLEM: No, not everyone does while being poorly treated on T4, or being underdosed on T3 or NDT. But subjective observation reveals that a lot do. Another gray area of experiences. Here’s a few ways people find out…also check out Chapter 5 in the revised STTM book.

LOWERING HIGH CORTISOL:  A high % of those trying to lower high cortisol report success doing it on just one particular supplement where the high is occurring. One example is Holy Basil, and as reported for many,  just two capsules does the trick for a particular high, or three capsules does the trick. Some might even need four. What we’ve rarely had patients report is needing massive amounts of these to do the job.  Some report combining supplements, like one holy basil and one Relora. It just varies and they all work if enough is taken, is appears  Here’s a page about this and there’s even more in the revised STTM book.

OPTIMAL AMOUNTS OF CORTISOL SUPPLEMENTATION:  Gray areas! With HC (prescription hydrocortisone given via your doctor) and women, it appears the majority end up at 30 mg (after doing DATS aka Daily Average Temps as we learned from Dr. Rind). But some find their optimal amount at 27.5, for example, and perhaps a smaller bunch right at 25 mg. Some even end up 32.5…all the latter after doing those Daily Average Temps to find their correct physiologic amount. It’s not as common, we’ve noticed, for a woman to need 35 mg, but we figure it could happen. Note that for what appears to be many, if they are going up that high, it’s because they have inadequate aldosterone that needs discovery and treatment.

OPTIMAL AMOUNT OF IRON: Over the years, it appeared to female patients who reported back that optimal for their serum iron seemed to be “close to” 110 in those kind or ranges, or “around” 23-24 or so in those ranges which only to up to the upper 20’s.  Note the qualifications with quotes–those gray areas. For example, with the first range, some were just fine at 107, or 106, or 105, and etc. Gray areas for iron.

HAVING HYPER-LIKE SYMPTOMS: this seemed to be an area that had different causes–those gray areas. For some, they were due to having low cortisol, causing a release of adrenaline. Some, though not all, felt them with high cortisol. Another cause: just being hypothyroid due to being undiagnosed, or being on T4, or being underdosed on NDT or T3, releasing excess adrenaline. And another gray area was how people experienced the high adrenaline. Some state anxiety feelings; some state palps; some state high heartrate; some state shakiness. Please, if you ever had concerns about your heart, we hope you will work closely with your doctor.

HASHIMOTO’s: Here contains a little gray area…Namely, though the vast majority will have antibodies to prove they have Hashi’s (both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them–a given), there’s this small body such as 5% who have none! The latter has to prove it via an Ultrasound!

HASHIMOTO’S AND IODINE: though some overreact to the detox from iodine and see their antibodies go up, another body has stated that it was iodine alone that brought their antibodies down! Gray areas! The bottom line: many have to prepare for the detox better–see this.  And some have to go low and slow. Read iodine information from experts like Dr. David Brownstein, Dr. Guy E. Abraham, Dr. Jorge D. Flechas..

HASHIMOTO’s AND GLUTEN:  Yes, though it has always appeared that the vast majority need to be off gluten, as it makes the antibodies worse as well as inflammation, there have always been a small minority who had no negative issues whatsoever with gluten and for a long period of time. Gray areas! As always, there are strong opinions about there about gluten period. But everyone should decide for themselves.

LYME DISEASE:  One given is that for all too many with “active” Lyme, patients noticed their RT3 went up and up from either T4-only or the T4 in NDT. That only makes one more hypothyroid since RT3 is an inactive hormone. So many have stated they lowered their NDT or T4 to a small amount and made it up with the majority being T3. Some are on T3 alone. And the gray area?? A small body of Lyme patients on T3 seemed to report needing that free T3 slightly above range, even if others state they were doing okay with it slightly below but “towards the top”.

The above is just a partial list of the gray areas in patient experiences.  It’s not all black and white, rigid, or rule-bound as it can often be reported.  Hope that helps! Use STTM to work better with your doctors!






  • A list of pages on Stop the Thyroid Madness is here–to help you counter potentially bad information.  If you already have the STTM books, the same will help.
  • Why T4-only has caused millions of people problems, sooner or later.  It’s up to you. 
  • How patients learned to read their labwork. 
  • WANT TO RECEIVE NOTIFICATIONS VIA EMAIL ABOUT STTM’S BLOG POSTS? Just sign up on the lower right of any page on Stop the Thyroid Madness!

NEED A GOOD GROUP TO DISCUSS ADRENAL AND/OR THYROID ISSUES? Here’s a privately run group that is positive on both the public side and the private side, and with an easy going attitude that a lot of people sure do seem to like:

17 Responses to “The Gray Areas of Reported Patient Experiences”

  1. Sharon

    I’ve always respected and appreciated everything you’ve done for me as as individual I’m 100% better than I use too be. Thankyou very much.

  2. susie

    Thank you so much, Janie! I’m wondering…can someone ever be hyper if their Free T3 and Free T4 are IN the ranges you said are optimal? Mine just tested out great (am on Armour and have been for yrs) but i sometimes have hyper symptoms. But then again, i’m suspected of having Lymes, i have bipolar, am going through perimenopause and being treated with natural progesterone so it could be any of those. Just SOMETIMES, i feel swings of hyper meaning feeling like i’ve had 20 cups of coffee and terrible weakness inside. (All BW is seemingly normal. sigh..) Thanks!

    • Janie Bowthorpe

      We as patients get the impression that those “hyper” symptoms are actually just “excess adrenaline” being released, not true hyper, because the body is alarmed about something going on. And there a lots of reasons for the body to be releasing excess adrenaline. For one, not really being optimal might set the body in a state of alarm. Optimal has always put the free T4 mid-range and the free T3 towards the top. Both. Being on Synthroid or Levo alone has done it to some. The rest is a guess–maybe the drop in estrogen or progesterone, active Lyme, detoxing.

  3. Russ McAden

    Thank you so very much Janie! My life is so much better because of you. You are an Angel.

  4. Lisa Carr

    I suffered for over 12 years with Hashi’s and had 6 separate Dr’s tell me I needed a psychiatrist because asking for the tests that you suggest told them I was not living in reality and looking for some physical reason for my mental issues. 2 years ago I went a new Endocrinologist who had replaced mine and when she asked me how I was feeling and after actually listening to me she put me on Tirosint. As she told me it is from Switzerland, a pure form with no fillers and is usually only approved by insurance after every other med is tried. That was the case with me. I had been on natural replacements a few times.. She told me that she suspected I had a problem with malabsortion and if I did then I would feel better on this medication. Within a week I felt better and every 3 months the first year there was still a huge difference in how much better I felt. I then discussed all the information I had found like this STTM and she told me that she wishes more of her colleagues would listen to the problems of malabsortion and realize that hypo thyroid patients don’t need mental health help just the a pure form of the thyroid hormone. For the first time in 14 years my T3 and T4 are normal and I feel great. I really feel that she is correct. Of course I had problems with cortisol and all the others when my cells were just not able to absorb the thyroid hormone that I needed. That Dr’s name is Anca Stali of Lowell General, MA I know she would love to talk with you about this. Thank you for trying to help so many of us.

  5. gail

    I am 75 and have had low potassium for years. The pills became a problem so I went to food. Found the best way to get lots of potassium was from Hunt’s tomato sauce which I mix with ice and water and drink, has over 1300 mg in it.

    Beans/potatoes have many but have lots of carbs and as a Diabetic must limit them. Also V8 juice with no salt has around 1500 mg. ONLY Hunt’s products have so much valuable potassium. I take Magnesium from the spray oil on the body so the Vit D will be carried into the cells. I stay dehydrated and I do not go to the hospital for IV Potassium as I just drink these products, have to eat too many beans/potatoes and other items with huge carb count making my insulin needs higher and insulin causes weight gain. I am looking at the Keto Zone Carb diet by Dr. Don Colbert, found great info there about how the body sets its own carb limit and surprisingly low and that you will not lose weight if you consume more carbs than the KCL for your body. that carbs are not necessary for life/health, only fats and protein (fats Omega 3 6 9 and protein 9 Amino Acids).

    Do research for yourself on everything. I now have the PostAblation Hypothyroidism having taken the RAI 6 yeats ago as they finally checked my thyroid when my PC doctor begged Endo to do so, found no longer thyroid, all tumor and very old. I am taking 120mg Armor Thyroid. This is a great website. My Endo is working on treating this.

    Be your own best friend for no one will help you as you will help yourself. Do not believe all others, research for yourself. Since 1920’s when many school children had goiters as soil depleted of iodine the salt content changed just enough to stop this in children but not enough for us to have healthy thyroid. Drs told me avoid salt, I did but led to problems for one can not pass urine without some salt to hold it in the body. I use the pink Himalayan salt as it has all the minerals the body needs. I only use one small shake a day and I can pass urine with no problem. I would that all of you regain your health for nothing feels good like feeling good.

    I have had unnecessay open heart surgery several years ago (moved to another state ten years later and new Cardio got my old records and called me in to tell me of this. The arteries replaced had disappeared soon after the surgery and I later learned this happens when they are not needed by the body. Thirty two years ago I had undiagnosed Familial Hyperlipidemia which caused my pancreas to begin bleeding and I fell into a coma, had severe necrotizing pancreatitis due to very high triglyercides. My body did not know when to stop making them and went to over 600 which the pancreas can not tolerate and began digesting itself with digestive enzymes. They did debridement (removing all the dead tissue and placing the pancreas back in my body.) I developed gangrene of the belly and ARDS of the lungs. Surgeons refused to trach me to protect my airway insisting I could not possibly live so did not matter while ENT said it must be done. I was parked in ICU and left to die @ age 44 intubated in ICU I lived and my total upper airway totally destroyed inc voice box. Said they wanted to avoid further “trauma” for me which resulted in 32 years now with many serious health issues and many autoimmune diseases.

    Turned out I did live and it did matter, to me it mattered. My total upper airway destroyed along with my vocal cords and now breathe through a very tiny trach tube. Many lung infections for years that now are colonized in me due to having a trach tube and brought Pulmonary Fibrosis along with them.

    I lived because people prayed for me. I believe prayer is powerful because HE answers prayer. I have learned to speak but it is due to prayer.

    It is impossible for me to make sound and my dr asked one day how do you speak for it is impossible for you to do so. I know why, I wept one day praying and read in PS praise me with a loud voice and I prayed silently I must be able to praise you in a loud voice for IF I can not do so, I shall die.

    I began to make sound before that day passed, something happened and I screamed and sound came out of my mouth. I know I live because HE allowed me to live. I am very thankful.

    Thank you for reading if you do. You help many and it is so needed by so many as drs do not hear, they do not like your having more than one or two issues, they do not diagnose for then they would be responsible for doing something about it. Few drs will help. They are overwhelmed. We need those who will. All these things are just too much for many doctors to do. They need prayer.

    Many try but proves to be too much for many of them. There are those who are making an effort and many like you who help much more than you perhaps realize. We who benefit thank you with a grateful heart.

    Many in my family are affected by thyroid problems and many autoimmune issues. I believe many if not nearly all are as the soil was depleted of iodine in the 1920’s when nearly all or all school children developed goiters. Iodine was added to salt to correct these goiters but not enough to ensure a healthy thyroid.

    You and others know about these things and hear us and some drs have heard us and accepting patients treating them with Thyroid, I take Armour Thyroid yet due to my now having the RAI nearly 6 years ago and now PostAblation Hypothyroidism I do not know waht will help me. This is new and I am searching to learn what I can do.

    Thank you again and for this website and others I am truly grateful.I value kindness in others above all else. For some it is too costly to dispense kindness and I find there are many who are very kind and among them children I find are the most caring and honest of all. They have not learned to lie.

    I pray that you all find relief for it feels so good to feel good. That is what I ask for everyone.


  6. gail

    In your comment section I said in ERROR that I have PostAblation Hypothyroidism but it is PostAblative Hyporthyroidism.
    I apologize for my error. I read that this comes in the 5th or 6th year following the RAI (pill to destroy the thyroid) to 70% of those who have this.. I could not have the surgery to remove my thyroid which had become all tumor and no thyroid over the many years it was growing for it
    was found to be very old. No one would check out my thyroid as they insisted nothing was wrong with my thyroid as their
    test results were “normal”. All that I stated is my opinion and my experience. I only know what happened to me. I was
    hyperthyroid and I quickly became hypothyroid after the RAI and had no knowledge that it could get worse from the
    RAI. My body is having very severe issues with blood sugars that can not be controlled. That is why I came to this website and others searching or information, for something I might try that might help me. That one day an answer for all thyroid
    issues will be met and we can be healthy again is my hope for all.

  7. Lori Taylor

    After having total thyroidectomy I insisted on getting NDT and found a doctor willing to prescribe it. I wasn’t overweight prior to surgery but after 2 years I have lost so much weight I’m skin and bones. I have had every test, scan, scope and biopsy with no answers for weight loss. My doctor really wants me to try Tirosint. Have you ever heard of this happening?

    • Janie Bowthorpe

      Lori, it sounds frustrating to have lost so much weight. 🙁 But understand that Tirosent is simply another version of T4-only which as caused people numerous problems: Hopefully you can find a different solution to the weight loss. Might want to also explore a viral or bacterial component explaining the weight loss, like Lyme, etc.

      • Lori Taylor

        Thank you for the reply! My Doctor does want to add T3 but less of it. At this point everything has been ruled out but I really don’t want to change medications but I feel out of options. Have you heard of too much weight loss with NDT?

        • Janie Bowthorpe

          My own husband, who is skinny and has a naturally fast metabolism, did lose weight on NDT. But he eventually leveled out and it stopped. And he eats more now, too.

  8. Linda

    I don’t understand wording under your “Hashimoto’s” section: “both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them–a given“, are you saying a person has to have both types of antibodies to be diagnosed with hashi’s, or are you saying both types need to be tested? Because i thought only one type of antibody needs to be elevated for the diagnosis? Thanks for all you do Janie!

    • Janie Bowthorpe

      No, the info is that one person can have just high TPO antibodies, while another can have just high anti-thyroglobulin. So if only one is done and it’s fine, the other could show Hashi’s that the first one is not!

  9. Felicity Lane

    I have been diagnosed with Hashis and although I have been increasing my NDT , My T3 ,T4 results stay the same. One doctor in the recommended list did the heavy metal tests and found high lead. Can you point me in the right direction on how to work towards lowering it He suggested NAC but I’m uncertain what values are considered just above the range and what is too high

    • Janie Bowthorpe

      Sounds like you aren’t increasing enough?

      I also had high lead with high copper, and decreased both just by doing the supps that I read help lower high copper, including zinc supplementation. Good info on the net if you google it, including that zinc also helps lower lead. 🙂


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