Over the last four years, thyroid hormone has been my best friend and my worst enemy. It has been a turmoiled relationship to say the least but fortunately, we’re on good terms now. I always knew that the thyroid hormone had the potential to restore me back to life but it was not until I really began to think about thyroid function in “out of the box” way that I finally could make it work for me.
Given the awful side effects that thyroid hormone exerted on my body and my brain, it is hard even for me to believe that I persevered with it for as long as I did. Most people would have locked it up in their black box. So why didn’t I do the same? It was sheer luck. It took one perfect day for me to fall in love with it and despite everything that came after I could not stop believing in the potential.
I have first tried thyroid in March of 2014. I have already been dealing with CFS issues and fibromyalgia for five years at that time. I have made a friend at my son’s school who had similar health struggles and she told me that she went on Armour thyroid despite normal TSH (1.5). Her endocrinologist believed that TSH values did not tell the full truth – and she was right because my friend had a remarkable improvement in her energy levels and all her health issues. “I’m like a new person,” she told me.
I was intrigued. I never heard of something like that. Where I come from saying “TSH doesn’t matter’ accounted to heresy. And yet the information came from a friend whom I trusted and the doctor who said so was a legitimate board-certified specialist. I decided that I should try and go see her.
She ordered my labs. TSH was also normal (1.2). My free T3 was 3.1 and my free T4 was 1.2 – all falling solidly in the middle of the reference range. I had elevated thyroid antibodies (anti-TPO) of 240. My thyroid ultrasound showed a nodule and an area of inflammation. I got prescribed 30 mg (1/2) grain of Armour thyroid. I took it in the morning and the first two days I didn’t really feel much. On the third day, I woke up feeling twenty years younger. There’s no other way to describe it. All the symptoms that ailed me for years – brain fog, muscle aches, fatigue – have vanished. My hair was supple. My dark and puffy eye circles have disappeared. My mouth no longer felt dry. It was as if suddenly blood and oxygen were reaching all the parts of my brain in the normal fashion. My period came on time that and it was much lighter than usual and there were hardly any cramps which were very unusual.
That day, for the first time after many years, life just felt easier in every way – physical, psychological and cognitive. It wasn’t the artificial feeling that I experienced on prescription or over the counter stimulants. It felt the way that life is supposed to feel like, the way it felt back in the days when I was young and healthy.
It was one fine day which I would never forget. That day I did something I haven’t done in years – I went out clubbing with my friends. I remember one of my girlfriends candidly asking me why I suddenly looked so good and refusing to believe that I didn’t have “work” done on my face. I was dancing at 11 PM and I wasn’t even feeling tired. I had to pinch myself to make sure I was awake. I drank alcohol and it didn’t make me feel bad like usual. That night I was celebrating because I believed that I finally found the answer as to what was making me ill all these years. But as it turned out my celebration was premature: the next day something has switched in my body and instead of feeling better as I was supposed to be doing, I got worse.
A very unpleasant feeling came over me, a sort of overstimulation that was hard to describe. I tried to stop thyroid hormone but instead of getting better, my symptoms got worse. I could feel my heart pounding. I felt like blood suddenly wasn’t reaching my extremities which began to look mottled and bluish and felt cold. Being in an upright position became hard and I essentially became bed bound. My mind was racing, my nervous system felt overstimulated. The only thing that would help me was taking more thyroid but it would only last a few hours and then the bad feeling would come back with vengeance. I would wake up at 2 am feeling my heart racing, unable to fall back asleep.
I began to search online compulsively and I discovered that there were two conditions that fit with my experience. The first one was adrenal fatigue, the second one was POTS (my current self would specify that it was what was known as “low flow” POTS). I ordered an online saliva test and found out that my cortisol levels were despicably low, therefore I settled on adrenal fatigue. The physician in me had a problem with the fact that it was not a legitimately recognized medical diagnosis but the human being in me didn’t care, I just wanted to get better. I read a book by Dr. Michael Lam and I recognized myself in the described clinical progression. For many years I was the proverbial overdriven, stress-prone, Type A personality person who has been trying to live above the capabilities of her adrenal glands and therefore they failed on me. That must be it. I began to rest, eat healthy and take supplements but I wasn’t making any progress.
I should note here that no endocrinologist has ever believed me. Even the progressive one who put me on Armour denied that it was possible for someone to feel so bad from such a small dose. The other ones called it either a “stimulant effect” or “placebo effect”, claiming that it takes a month for thyroid hormone to work. In addition, nobody has ever believed me that I could feel the effect of the thyroid dose within less than an hour. But the external changes were very obvious both to me and those around me if it was a placebo than why were my hair, skin, and uterus reacting to it too?
I have now communicated with enough of other patients who have been diagnosed with ME/CFS and POTS and they report similar experiences which confirms that I’m not crazy, just very unusual in my physiological settings and that doctors are too quick to dismiss what they don’t understand. They do not understand that there is more than one way to be hypothyroid (just as there are at least two types of diabetes), and that mine is not the usual kind and involves my central nervous system and microcirculation out of proportion to the lab findings. They do not understand that having hypothalamic dysfunction makes it very perilous to use conventional doses of hormones.
The only person who believed me was a family physician who specialized in alternative hormonal treatments and who had her own revelatory experience after switching from synthetic to Armour thyroid. (She didn’t have the same problems as I did but it opened her eyes to the fact that medical guidelines based that are evidence-based are not the only truth out there). She said: “Clearly, your body needs thyroid, it’s just a matter of figuring out the dose and getting your adrenals strong enough so they can handle it”. She prescribed me three compounded medications: slow release sustained T3 (1 mcg), slow release sustained T4 (and slow release sustained cortisol. I had a mix response to that, which eventually I began to sort out: T3 capsules had a positive effect on me, T4 and cortisol capsules had a clearly negative effect.
At that time my husband’s job was relocated and we had to move to another city. I no longer had access to my understanding family doctor. The new endocrinologist I went to see was adamant that it wasn’t possible for someone to feel better on 1 mcg of T3 which is a “homeopathic” dose and that I’ve been a victim of a medical fraud. I began to have doubts. In the end, I was feeling better but still not great. I couldn’t help but agree with him that adrenal fatigue diagnosis did sound sketchy. If adrenals were the issue, then why did cortisol make me feel worse instead of better? Something didn’t quite add up here On top of that, it wasn’t something I could really put on my disability application and I was no longer able to work in any capacity. What I needed was a real, “official diagnosis” and therefore, my husband and I decided to set out on a long and torturous drive to another city to see the closest POTS specialist. Sure enough, he confirmed that I did have POTS and I was even handed a reason for it – Ehlers Danlos Syndrome. Although I didn’t like it, in some way I felt validated and relieved. I knew that I was very sick and now I had an explanation for it. But what followed after – the myriad of unnecessary tests, procedures, specialists and wrong drugs – only made me worse. It became more and more obvious that the specialists I was seeing had much less insight into my condition than the “grassroots” family doctor, and all they have succeeded at was bringing me toward complete disability and the feeling that I was on the brink of death.
Eventually, I went back to believing that my well being was somehow tied to my thyroid gland. I ventured into these dangerous waters on my own, relying on patient websites such as STTM and what followed was every bit as horrifying – perhaps even more so than what came before. I have wandered into the very dark woods of thyroid mess and dark throes of depression, and it wasn’t until I came across Ken Blanchard’s book and was able to correlate it with enough of own experiences to realize that he was really onto something. It was already clear at that point that neither conventional nor alternative medicine approach to thyroid treatment was going to work for me. If thyroid hormone and I were meant to be together, we need to do so in a way that would be completely unique and off the beaten path.
Back in medical school, I used to think that thyroid is the simplest subject in endocrinology. All you need to know is TSH and levothyroxine. Easy – peasy, right? Now I know that when something looks easy in a human body, that’s probably because we don’t really know anything about it yet. From where I’m standing now, I can see clearly that modern thyroid science is still in germinal stages. TSH test is unreliable and has done more harm than good. Current treatment strategies are insufficient and do not take into account the vast complexity of thyroid hormone metabolism, central and peripheral regulation, and interaction with other hormones. CFS and dysautonomia patients are paying the price of this ignorance. It’s akin handing a diabetic patient a bottle insulin without glucometer or any guidelines on how to use it – what do you think are the odds of them making themselves better vs worse in this situation? As a result of all the current endocrine ignorance, many people are not getting the treatment they need, and those who get treatment are often made worse.
I started writing about this because I don’t want people to go through the same torture as I did. I want to do what I can do on my part to dispel the ignorance.
The method I ended up settling on was developed by Kenneth Blanchard, MD – a free-thinking endocrinologist has spent several decades of his life trying to advocate for a better approach but despite his great success as he laments in his book “Functional Approach to Hypothyroidism” none of his colleagues would listen to him.
The moral of this story is if you have an invisible illness you may need thyroid. Even if you have normal labs and had side effects or if you tried it and thought it didn’t work for you.
RECOMMENDED FURTHER READING: “BREAKING THROUGH THE FOG: T3 AND 5HT RECEPTORS“
Hello,
I have been looking into Dr Kenneth Blanchards way of treating thyroid as well. I have been down the road of Levo only for years, then trying NDT and not feeling stable, always up and down, hypo to hyper within a matter of hours but also feeling the very positive feelings you have written here about the T3. I cannot give up on my quest to get the right thyroid treatment and getting my T3 to a therapeutic level. I am currently taking Tirosint and a smal dose of 5 mcg of Liothyronine, which at times still feels like too much. I feel I am far from good treatment yet but know I cannot handle anymore T3 than I am already taking. I feel like Dr. Blanchards approach is logical and makes sense and am hopeful I will be able to get my doctor on board to try it. Are you using the slow release T3? Or are you multidosing with regular T3? Do you think multidosing with regular T3 first to find a dose that would work would be best? There is really so little information out there to go by with this protocol but the few people I have read about make it sound like it works like a charm. This can be a long drawn out battle. I wish there were smaller increments of T3 available…. and I also wish Dr’s and pharmacuetical companies cared a little bit more to help us.
Hi Melanie,
Please do not give up on your quest! Yes, I too wish that patients like us had better options but for now we’ll have to try and do the best with what we’ve got.
Yes, even 5 mcg of T3 would be too much for my body. Dr. Blanchard recommended the ratio of about 0.3 (!) mcg for every 25 mcg of T4 compounded in a slow release form. That means that if, for example, you take 100 mcg of Tirosint you would need only 1.2 mcg of T3 per day – and even that can be taken in divided doses. You may even need less than that. You can also use an eqivalent dose of NDT, which would be 2.5 mg per 25 mcg, ideally also in a slow release form but if you can’t get it prescribed you might try breaking 1/4 grain into tiny bits.
Your doctor can send a prescription to a trusted compounding pharmacy. It should be compounded in slow release capsules with a binder such as Methacell or Avicell. I have found that in this form of T3 has a very different effect than the immediate release form as it doesn’t depress your TSH or mess up your peripheral deiodination settings as much, leaving you more hypo when the T3 dose wears off. It may sound paradoxical but I always got a much more powerful yet more smooth effect from even these tiny doses of slow release T3 than from 5 mcg of Cytomel.
Remember that we are all unique individuals and you have to find the optimal T3/T4 ratio that works for you. It’s a long process but it’s worth it. Good luck to you!
Hello again Voyager,
I have read Dr. Kenneth Blanchards book about 3 times and I am really considering trying it. So far it seems nothing I have tried is making me any better. I have such a hard time handling more T3. I tried NDT working my way up to 3.75 grains. In some ways the T3 would make me feel better but it would never last. I was on a daily rollercoaster ride “waiting” for it to straighten out. The T3 never stays with me, as soon as it wears off, I was in a hypo hell. Waking up in the morning barely being able to function until I took my dose of NDT(getting my “fix”) and then the rollercoaster would just start again. So at that point me and my doctor decided to reduce the NDT and add some T4, trying that angle to get regulated went on for almost a year. When the Naturethroid and WP shortage hit if forced me to try NP thyroid which didn’t really make a difference, always still on the rollercoaster and then I went to get a refill of NP at one point and the pharmacies in my area couldn’t get that either, so I then I tried to switch to an equal amount of T4 and T3 (liothyronine) to match what I was taking for the T4 and NDT combo. And then I went REALLY wonky. So I decided to stop all T3 for a while and try just straight T4, but instead of taking generic Levo I wanted to try Tirosint on a reduced dose because it is supposed to absorb so much better, I went very hypo but all in all I felt relatively peaceful by the end of the 6 weeks, no rollercoaster ride, but very hypo. I have to mention my TSH had been suppressed ever since getting to the 3.75 grains of NDT, so after switching to Tirosint at the 6 week mark my TSH was finally reading again at .12, T4 was 1.1 (.7-1.7) T3 1.8 (2.2-4.2) With all of the trouble I have had with T3 I didn’t want to have to add it back in but with the way I was feeling I knew I needed it so me and my Dr thought to just try real slow again and we added 5mcg split 2 x per day. This helped a tad for a bit but at the 6 week mark I was still feeling extremely hypo but the rollercoaster ride was mild from the T3. My labs actually got a tad worse but TSH better again. TSH at .86 T4 .9(.7-1.7) T3 1.5(2.2-4.2) At the same time as these labs I had to switch doctors and the new doctor would not let me raise my T4 because of my TSH but did let me try a raise in T3. I tried a raise of 5 mcg (which thinking back was too much to try at one time) the first few days it felt good but then it got really bad. The roller coaster ride was horrible. Hypo to hyper back to hypo, a pain in my middle section that I can only describe as hunger such a hunger that I wasn’t really hungry but like I needed food to keep myself from dying….. it was horrible. At that point I told my Dr I couldn’t handle the T3 raise dropped back to 5 mcg, I begged to raise my T4 because I was just so hypo, she wouldn’t. The next week went back to my original thyroid Dr. who specialized in thyroid. He raised my T4 for me and I have stayed at the 5 mcg. At the 2 week mark I felt like things were maybe starting to come around and I was feeling I had a tad more energy but since then in this last week I feel like I am on the T3 rollercoaster ride more so again. He wanted me to go back in a month for labs so I am going to do that next week. I obviously don’t convert well but at the same time I don’t think I can handle more T3 either, and am very scared to try. How would you suggest a person start the protocol that Dr Blanchard used, at this point I am scared to screw myself up even more than I am already screwed up. I definitely think there is a difference between the synthetic T3 compared to the NDT T3. WP Thyroid was the only NDT T3 that felt the best that I tried, and I can’t get that. I wish I could start this whole thing over knowing what I know now…. 2.5 years ago before trying the switch to NDT I was a tired and couldn’t lose weight but I was not THIS SCREWED UP. My labs back then on just 175 levo looked like this TSH 1.86 T4 1.2 and T3 2.3. Thinking back maybe it would have been a better idea to just add that tiny bit of T3 like Dr Blanchard did. You sound like you know sooo much about this stuff. At this point I am inclined to drop all T3 because I just don’t do well with it, but I am scared of being completely hypo again too. The T3 gets me thru the day, it is up and down, but I am scared of what I will feel like without it too. I also belong to a couple of FB thyroid forms and things they suggest just sound wrong. Telling me to drop taking T4 and take only T3…. that is just a road I know will not be right and I am trying to get out of the T3 hell. I am just too unstable on T3. Who knows maybe I just need a bit more of a raise in T4 yet too, to balance things out more, I will see from bloodwork next week I guess. Sorry this is sooooo long. I just don’t really know where to begin without screwing myself up worse if I wanted to try to mimic Dr Blanchards protocol using liothyronine tablets with my Tirosint. I cannot afford compounded at this time. My husband just lost his job.
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Hi Voyager.
How many times did you take the Armour before you noticed these symptoms?
Thanks,
Andrew
On average, I would say the “honeymoon” lasts 3 days, then things start getting worse. The first time I lasted about 2 weeks before I began to develop bad POTS but later on as I became more depleted in certain nutrients and neurotransmitters I couldn’t handle even one dose.