How many Chronic Fatigue Syndrome (CFS) patients actually have thyroid imbalance as the cause of their symptoms even when their thyroid lab tests are declared ‘normal’? I’ve wondered this for some time.
Written by Paul Robinson
My Chronic Fatigue Syndrome ‘label’
In the summer of 1993, I was thirty-four years of age. I had been diagnosed with Chronic Fatigue Syndrome (CFS) by at least one endocrinologist. They sometimes referred to what I had as ME (myalgic encephalitis). Whichever label they gave me, they clearly did not know what to do with me anymore. I was not convinced that I had CFS. Sure, I had a lot of the symptoms of CFS, but there were many reasons I did not believe it.
Feeling rubbish with ‘normal’ thyroid labs
For the past four years I had been on Synthroid (T4) for hypothyroidism due to Hashimoto’s thyroiditis. My endocrinologists and family doctors had tried various different doses of Synthroid, and somewhere between 150 mcg and 200 mcg appeared to make them all extremely happy, as my thyroid lab test results were ‘normal’. I still felt really ill though. I had been on a gluten-free, grain-free and dairy-free diet for a couple of years. I’d had anti-candida treatments for my digestive system, which caused pain after every meal. I’d had anti-parasite treatments. I’d been treated for heavy metals, had my amalgam fillings removed, seen kinesiologists. I’d even done the kinesiology training and was qualified to practice it. I’d seen a number of other complementary medicine specialists. I was desperate to get well. I would read something and think, “It might be this!” But none of these things helped at all.
At this stage, I had such fatigue that I could barely climb the stairs. My concentration was bad. I was weak. My cortisol was very low. But I had passed an ACTH Stimulation test, so the endocrinologist said I was Ok! I wasn’t though. The low cortisol made my blood pressure so low that I passed out regularly. It also caused me to lose a lot of weight (I went from 170 pounds down to only 110!). Basically, I still had the majority of the symptoms of hypothyroidism that I had when I was first diagnosed. The low cortisol had come on during the past few years and added to the fun.
I pointed out to every doctor that I saw that I still had most of the original thyroid symptoms. They just said my labs were normal and that the symptoms must be from some other condition! Some other condition had arrived that completely masqueraded as hypothyroidism! Crazy! Anyway, that’s why I was given the CFS diagnosis. They stuck a label on me and sent me on my way.
I honestly had lost a lot of respect for the medical professionals who had failed to get me well. The “just take this one little pill and you’ll be well in no time at all” statement had been a big lie. I was frustrated with the doctors. They just did not seem to be at all logical in the way they looked at my problems. Every appointment I went to, I got nervous beforehand, as I expected to be ignored. All they offered me was the CFS ‘label’.
I was scared about losing the career that I loved and concerned about the financial security for my family. My little kids did not have a proper Dad and home life was very tense and strained. I also began to believe that I was going to die. It was a total nightmare.
I did lose my career! My family life did deteriorate! Lots of relationship damage was done, much of which will never recover.
T3-Only thyroid treatment is a life saver
However, I did recover. I never gave up searching for answers – this is a vital part of recovering for some people. I read endocrinology textbooks and eventually realized that I needed to have a trial with T3 (liothyronine). I felt my body’s ability to convert T4 thyroid hormone to T3 had worsened from when I was healthy and that, although my Free T3 was ‘normal’, it had probably once been higher. My doctor wanted me to try T4/T3 first, then natural desiccated thyroid. Even combined with hydrocortisone, nothing worked, and my symptoms remained. I argued to get T3, and eventually I got on T3-Only with no T4 in my medication at all.
Within a few days of T3-Only the lights went on! It was like I was back in a world of full color, compared with the black and white, washed out, living hell I had been in for the past seven years. Within three weeks all my digestive symptoms cleared up. I did not need to be on the special diets at all. I eat a more or less ketogenic diet now – not because I need to avoid some particular food, simply because I feel good on it.
It took three years to figure out a protocol for finding an optimal and safe dosage of T3, and to fix my remaining symptoms. T3 also fixed my cortisol issue and the symptoms that went along with it (for years I had been passing out regularly).
It worked. I got well and improved even more over time. My thyroid labs look screwy though. I had suppressed TSH, no FT4 and elevated FT3 – but I am well and am not hyperthyroid at all. There are good reasons for not being hyper even if FT3 is elevated in someone on T3-Only (but too complex to go into in this article). We’re all different, of course, and what’s right for me may not be for another person.
I use three doses of T3. This avoids any single dose needing to be too high, and it also means during the time before the next dose is due the levels don’t fall too low. For me, two of these doses are in the daytime and one is in the night. I term this night dose the Circadian T3 Method (CT3M). It is a way of providing the pituitary gland with enough T3 to function and make ACTH (the hormone that drives the adrenals to make cortisol). Many people with low cortisol have hypothalamic-pituitary dysfunction. This can often be caused through low FT3 in the night, which can happen through using daytime-only thyroid medication. The CT3M protocol is only for those with low cortisol (most of my book is about daytime dosing of T3). Note: T3 is still the hardest thyroid medication to use as blood tests are of little help in the dosing. So, I always suggest that it is the last treatment people consider. NDT or T4/T3 are my preferred choices where they can be made to work well.
So, I got well, but I could not repair all the collateral damage. My life changed totally through my condition remaining improperly treated for so long. It was ten years before I eventually recovered. That is too long a time to remain so sick without consequences. This is why it is critical to recover quickly.
Chronic Fatigue Syndrome and thyroid connection
So, what can this tell us about Chronic Fatigue Syndrome? Well, CFS went into my medical records. That was the diagnosis. I was told I had CFS and that I had near perfect thyroid labs. I have come to believe that a good proportion of CFS patients could still have a thyroid hormone imbalance behind their CFS symptoms. These CFS patients may, or may not, be on thyroid hormone treatment. I also think that other complex conditions that are hard to diagnose properly, like B12 insufficiency, can also be behind many CFS cases. The problem is that it is often extremely difficult to find the cause(s) and so the label of CFS is the only thing that the poor patient is left with. I wish more doctors would consider trying T3 therapy or B12 injections if they have cases of CFS patients for whom they have no other clues.
DIO1 and DIO2 gene defects
In my own case, I have recently discovered that I have both copies of the gene defects DIO1 and DIO2. These defects impact the quality of the D1 and D2 deiodinase enzymes involved in converting T4 to T3. This issue and the loss of thyroid tissue due to Hashimoto’s would have impacted my conversion capability dramatically. I now know that the thyroid gland contributes around 25% of the T3 in the body – most of this is through its conversion capability. The thyroid is the most important converter we have. When we lose thyroid tissue, this conversion capability is gone. In my case, if I try to take even small amounts of T4 medication with my T3, I crash within 5-7 days. I just cannot process it because my ability to convert it is so poor. However, at least I can finally explain what happened to me and why I cannot cope with any T4-based thyroid medication.
Sadly, my situation with poor diagnosis and treatment is not unique.
CFS and hypothyroidism can both be a total minefield for people. Many of us know how hard it can be to get out of it and claw our way back to good health. It isn’t at all straightforward. I hope this article is helpful to some of you, and that it gives you some ideas to consider during your own health journey.
About Paul Robinson
Paul Robinson is a thyroid patient advocate who became ill with hypothyroidism in his late twenties. He was eventually able to recover using T3 replacement therapy. He is now in his sixties and has written 3 books – Recovering with T3, The CT3M Handbook, and The Thyroid Patient’s Manual.
I was born without a thyroid gland and thanks to my mother’s persistence I was diagnosed at 3 months. I was on 200mgs up until I was 18 years old. Then 175 mgs for years and during both my pregnancies with my sons.
In the past 10 years my doctor has reduced my level down to now to 100 mg. My weight is now creeping up and my concentration is getting worse and brain fog. I fought hard to lose 5 stone and putting on weight again is causing depression. I am due to go back for another blood test in two weeks. I am stressing already as new GP practice is useless and do not listen to me. Totally flustrated and I am going to demand to be referred to endocrine department in hope that they will listen.
Not sure why my hormone levels at 54 are going up, can menopause cause this to happen?
September 5th 2021.
I had my thyroid gland removed and I balloon from 135 to 198 and then for some reason I lost 30 lbs. And now I’m stuck between 168 to 173. I’m on 100 MCG tablet (Levothroxine). I had my thyroid glands remove in March of 2008. My glands (parathyroid) 3 of them were removed out of 4 of them. Now I have no interest in sex anymore and other things that was lost also. I’m trying to get back to 140 but nothing works and I am frustrated with it. Lost interest in things that I used to love now I’m just lazy can’t seem to want to do anything.
I’m sorry to hear all you’ve been going through. It is a real challenge to deal with thyroid disease and how it can impact every part of the body. Levothyroxine contains T4 thyroid hormone and our bodies need to covert that T4 to the active T3 hormone to be utilized by the cells. While some do great on these types of medications, there are other options that may be better for some patients. Here is information about the different thyroid medications. Regards, Dana Trentini (Hypothyroid Mom)
https://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/
On 36mg iodine daily. Feel great but have brain fog and insomnia. Was on levothyroxine for years, gained weight, felt terrible, no desire to do anything. Dr. Tells me I will have to get on thyroid medication to keep from having all kinds of problems. My weight is normal now. I eat most anything, but try to be careful. Dr wants to put me on armore. This t3 thing sounds interesting. I don’t need weight gain and bloating. Need help but no one to turn too. Dr. Has assured me I will have all kinds of problems unless I take a thyroid drug. I do not have arthritis problems now. Any suggestions?
I am in a brain fog. I have always said I had an underlying medical problem. If anybody could find out what I may could get better. I just keep gaining weight . im so over weight. I have tried everything . I haven’t drank a soda in months. Only water and unsweeted tea. i just found out im hyprothyroid. I have muscle weakness cramp lots and I been on levothyroxin for 2 months Dr going to check blood work in July . I have started itching all over nobody can tell me why. Im 51 and I feel like im spiraling down out of control do not no wants wrong with me.depressed over weight changed way I eat every kind if way. Does anybody have same are heard of this
Ginalyn I have all of those symptoms too. I walk everyday eat right. I have rashes itching and weight gain. NO can help me. I have been on 100 mg of levothyroxin for years. I am still so tried all the time.
It the levothyroxine medication
was diagnosed in may 2019 after having sweaty nights for 3good years and low energy levels. I went to hospital they did a scan on my thyroid and took blood test but yet to been given any medication. No advice even on diet how to I go about this? pls help
I am diagnosed with hashimotos hypo, CFS, fibromyalgia, raynauds, have a positive ANA, etc. I have not shown positive for another autoimmune disease in bloodwork. So I’ve had high blood pressure since my early 20s and I was stuck then. Thyroid stuff, migraine med and years later I’m much heavier (some due to a migraine med I’m sure). Now I am starting Levoxyl. Did better on synthroid than Levothyroxine generic. Did better on naturethroid until I couldn’t get it. Just tried generic cytomel with Levothyroxine and couldn’t do it. My heart would beat so hard and a little fast that I was afraid it would jump out my chest just after taking c3 med doses. They think my blood pressure and rapid heart rate are hereditary. I don’t haven’t taken my first dose of the new Levoxyl yet. Not sure what else I can do to get more back to normal since t3 isn’t an option for me. Any thoughts appreciated.
Should have been “stick thin”.
Hypothyroidism and Hashimotos was diagnosed when I was 30 years old. Since then my body has not cooperated in the area of energy for years. I did succeed in raising two healthy boys and am a fairly good spouse. However, no job, not enough energy for one. And my compulsive desire to have a clean perfect home lie unfulfilled. It is depressing to not be able to finish those started paintings or write that children’s book I’ve always wanted. However, much of life has been good. My health could use a lot of improvement and my thyroid supplement is helping only with my blood pressure. Think I need to save up and see a natural hormone doctor or get a complete workup somehow.
Hoping someone can reply with insight. I “see” myself in this article including almost job loss (found new one before losing old one…a band-aid at this point). Normal basic thyroid labs although another thyroid-related holistic site shows that my free T3 and free T4 are both below optimal. I tried natural desiccated thyroid or NDT (bovine) at a low dose and ended up with significant bloating, although I felt better (more clear-headed and calm). I am in the throes of peri-menopause, age 49. Question(s): Has anyone else taken NDT and bloated from it? Did you find out why? Is there a connection to BHRT over or underuse with this outcome, i.e. is BHRT Bi-Est or BHRT progesterone (topical) more likely to cause this, and if so, why? I may have Hashi’s, not sure, MD keeps saying – as in this article – thyroid is fine. Definitely experiencing bouts of hyperthyroid when I use too much progesterone now, which as I’ve read may be due to unlocking thyroid hormone that estrogen locks up. Any insights here, along with a path to balance, would be so helpful. The complexity of hormones is vexing to most MD’s. Personal belief, we need easy and affordable access to real time (daily, weekly) labs just like blood sugar for diabetics. If we can check hormones during symptom spikes, we can likely get to the root cause – and balance – more rapidly. ZRT labs are too expensive for the majority to do frequently.
I am on Armour and bloating is the story of my life. In fact I am frustrated by that more than my fatigue, as I cut out more and more foods from my diet. Anyway, from my research I believe that the chronic hypo-symptoms lead to poor digestion and maybe even SIBO. You should look into the articles by Ray Peat http://www.raypeat.com, he also has lots of radio interviews you can find on youtube. His ideas go against even alternative health circles, but his website documents all the research to support his beliefs.
EVERYTHING mentioned in this article I can relate to because it has happened to me. I was diagnosed when I was 7 years old, I am now 73 and have just come off one of the worst 5 year journeys I have ever been on. It started with fatigue, no energy, depression,
and went all the way to not being able to walk, without help. All because the Drs. had me on the wrong dosage of thyroid medication. I wish I had time to tell my story. IF you have EVER been diagnosed with a Thyroid disorder, demand they send you to an Endocrinologist. No body knows your body better than you!
This is an aspect I have never heard of. I am glad I found this article. Thank you!
Thankyou for your information on Thyroid as I have a Thyroid condition. Have a lot of trouble finding information on it. I want to find out more as I have been very ill for a long time and my doctor cannot find anything and yet I am losing weight to the point that my body is physically fighting and losing. I am 42 kg in weight and losing more. I am wondering if my Thyroid is causing it? I have other health conditions that are serious and could be that too.