(This post has been updated to the current day and time. Enjoy!)
Before my thyroid disease of hypothyroidism was discovered, I had horrific and debilitating consequences from exercise or any activity. You can read about it in even more detail in the Introduction of the patient-to-patient Stop the Thyroid Madness book.
When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING. I was put on Synthroid and my anticipation for a better life was profound.
But my hope was dashed.
Not only did my body continue to overreact to activity, it got much worse over time. Horribly worse. I got to where I couldn’t even grocery shop without paying horrible prices in fatigue and other miserable symptoms.
Nearly twenty years after I had started on a T4-only medication, and had even raised it. I was told by one doctor after another that my problem was not my thyroid. I was forced to start the process of applying for social security disability–a low, low time for me.
But they were all dead wrong.
Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to activity or stress. But remaining hypothyroid, as so many of us do on t4-only medications, had made it far, far worse. And I proved it. When I switched to natural desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred. My severe autonomic reactions made an almost complete turnaround.
And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.
Last week, I received an email from a man whose brother has MS–Multiple Sclerosis. And though natural desiccated thyroid has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is quite impressive.
So I am left wondering: what other conditions or diseases, which are unique in themselves, are worsened being either undiagnosed or dosed the lousy TSH lab test range…or due to the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and all other T4-only medications for all to many like myself? It’s awful to think about it.
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13 Responses to “Multiple sclerosis, Dysautonomia, you name it…ALL made worse from hypothyroidism or being on a T4 med”
Lianne Simon
While on Synthroid, I developed Meniere’s, got frequent infections, and became hypoglycemic. When I switched to Nature-Throid, my Meniere’s went into remission, the infections stopped, and I became mildly insulin resistant. I also started getting allergic reactions. When they put me on QVAR for extrinsic asthma, the allergic reactions stopped. Now I can deal with my Dysautonomia. My doctor suspects that’s caused by Mast Cell Activation Syndrome.
Jan R
Janie, here’s a brain-twister for you: In 2 years I have gone from no treatment for 20+ years, to Synthroid 6 mo, to CT3M 6 mo, to Naturethroid +T3 , gradually phasing out T3 in favor of 100% Naturethroid last August. I was diagnosed with dysautonomia 3 years ago. All of the blood and saliva tests you have recommended were done and all except TSH, FT3, FT4, & RT3 were either normal or low normal.. With suplementation all are now optimal.
Here’s the problem – On Naturethroid I developed an irregular heartbeat, infrequent at first then eventually almost daily as I raised my dose (started 1/4 gr and raised to 1 gr). The raise to 1 1/4 gr coincided with the onset of cold weather last October. My system went crazy, wildly irregular pounding pulse, tachycardia, high BP and throbbing headache. I panicked and stopped all thryroid meds for 3 days. Then I restarted CT3M T3 only, hoping for a reset. Felt great at 0.025mg a day of Cytomel – no irregular heartbeat, no further problems until now. For a week now, we have been staying at a place where the noise level is very high. It began to affect me at once. Feeling agitated and anxious all the time, with difficulty sleeping. Finally two nights ago I almost didn’t sleep at all – irregular heartbeat and totally wired in spite of taking melatonin. Yesterday morning, I took my circadian T3 dose and when I got up I had another episode. I was a zombie (severe brain fog), pounding irregular pulse, throbbing headache, tachycardia, high BP! I took a small dose of Fludrocortisone, skipped my mid-day T3 and felt better – the symptoms were gone by evening. Today I took Fludro plus my morning regular dose of T3 with no problems. Will restart the mid-day dose tomorrow if all goes well today.
My theory is that the October episode was an allergic reaction to something in the NatureThroid compounded in October by a dysautonomic reaction to the cold ( I have Raynaud’s) which depleted my cortisol reserves.
But I think the second incident was purely dystautonomic – my autonomic system just never shuts off from reacting to the constant noise, so it quickly depletes my cortisol reserves.
Taking T3 without sufficient cortisol can be dangerous, right?
Today my research again led me to your blog. So Janie, do you think I’m right? Could these crisis episodes be brought on by dysautonomia? Am I right about what’s happening? Did I handle it correctly? Is there a protocol for taking thyroid meds if you have dysautonomia?
My doctors seem clueless and, as usual, you are much better informed. 😉 Thanks so much for putting this info out there and for any comments or advice you can give. (sorry for this long post)
Janie Bowthorpe
Jan, as another thyroid patient, I can make this supposition: the problems when you raised to 1 1/2 grains (and perhaps what happened on T3) may have nothing to do with Dysautonomia. Your answer is probably #2 here: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me And by way, my horrific dysautonomic reactions didn’t lower my cortisol, but who knows with you. We know we need to order and do a 24 hour adrenal saliva test. Those places listed here: https://stopthethyroidomadness.com/recommended-labwork
Deanna
I am dealing with the same issues right now,and I have been thru tons of testing and still doing it now..Thanks for posting this..
Vivian
i finally got my doctors to try NDT with me….I have been on Synthroid for 21 years. They had me check TSH after 2 weeks of being on Armour …… Results .46 so they said all is good we will see you in 2 months. Two weeks later I knew I needed to increase dosage but I also knew they would bulk at me calling and wanting another blood test so soon. I just had my appointment which was
3 months from starting Armour…..my TSH was 15. They doubled my dose and gave me standing orders for a blood draw when I feel necessary. Of course the next one will be in 2 weeks. I am hoping to lose the 13 pounds I put on in 2 months, be able to move without pain, and be able to sit without movement and stay awake! You guys are my support and hope for a better life! Thanks
Dana
So interesting! I have been unable to exercise or overexert without feeling it, especially three days later, as too much pain and exhaustion. This has been going on forever. I was tested as hypothyroid at age 14 and have been on synthetic thyroid since. I have always felt low energy and get sick if I sit in a draft of air. But I have been thoroughly puzzled how I can’t exercise to ‘get in shape’ and lose that overweight. Exercise feels like I’m committing suicide.
Lara McCabe
Hi Janie, do you think it was the thyroid meds that turned around your dysautonomia or was it something to do with them helping your mitral valve prolapse? Did you have lots of adrenaline and anxiety? Thanks so much.
Janie Bowthorpe
Lara, WITHOUT A DOUBT. Remember that before I got on NDT, I had 20 years of a severe and disabling over-reaction of my autonomic nervous system in response to any moderate to high activity. And I can’t underscore enough the “disabling” factor. It was absolutely awful. It got so bad that just before I finally got on NDT, I would get that same disabling reaction just from sanding a small piece of wood while sitting.
Within a week after starting NDT (and it was only 3/4 grain at that time–definitely not optimal yet), I could tell a difference. In fact, I never had another severely disabling reaction again of my autonomic nervous system. That was nearly 13 years ago. Today, the only time I notice my dysautonomia is if I’m faced with having to confront someone with, or deal with, a difficult topic. My heartrate gets pretty darn high, occasionally I shake. i.e. the excess adrenaline release is still there…occasionally. But that’s it. I can do any kind of activity or exercise without that horrifying over-reaction.
Johanna
This gives me a little hope. I have a debilitating dysautonomia and started taking Armour Thyroid in December. I’m not on the right dosage yet and my dysautonomia symptoms haven’t lessened. How much time did it take you Janie, to feel a difference? And may I ask what kind of symptoms you had?
My symptoms are:
TACHYCARDIA
HYPOTENSION
NEAR SYNCOPE
DIZZINESS
EXCESSIVE FATIGUE
EXERCISE INTOLERANCE
MIGRAINES / HEADACHES
GASTROINTESTINAL ISSUES
NAUSEA / DIARRHEA / CONSTIPATION
INSOMNIA
JOINT / MUSCLE PAIN
MUSCLE WEAKNESS
THERMOREGULATORY ISSUES
ANXIETY
LOW MOOD
FREQUENT URINATION
COGNITIVE IMPAIRMENT (BRAIN FOG)
TREMORS.
Janie Bowthorpe
Johanna, I felt a different not long after starting on only 3/4 grains. But my optimal dose ended up being close to 3 3/4 grains then. Today, after meno, it’s just 3 1/2 grains. And eleven years after being on NDT, I STILL have none of those terrible autonomic nervous system overreactions to exercise or the sun. It’s been like a miracle. What I DO still have is Mitral Valve Prolapse, and I have noticed that high altitude combined with stress makes my heart palp a little more than normal (adrenaline). But nothing like I had before.
Johanna, it sounds like you have some adrenal issues going on, and perhaps both a cortisol and aldosterone issue. And patients do saliva testing to find out. Read https://stopthethyroidmadness.com/ndt-doesnt-work-for-me if you are having trouble raising NDT.
Amy
Are you feeling better? I have started on supplements to treat my adrenal issues, but this post on dysautonia have really hit home… It explains my chronic pneumonia, stuttering, vision problems, chronic hoarse voice, constant chest pain, fatigue beyond fatigue, joint pain( all of ’em). Pretty much every symptom on the book. Every doctor thinks I’m crazy and my friends and family see me as a hypochondriac, but when I read the symptoms of Addison’s, Hashis, and now this, all of the puzzle pieces are coming together. I just turned 32, and was in a bootcamp, but the past year has been so up an down I keep getting sick when I work out…. Self medicating with Ltyrosine, Ashwagndha, rhodiola, selenium, magnesium, vitamin d, vitamin c, holy basil, and adderal… Still feel fatigued bc I know I need NDT …feel like I’m getting worse before I’m gonna get better
Mike Brittain
Check your adrenals I have adrenal insufficiency and if your endo is worth his/her salt they would have done that by now. I have huge gut issues stomach paralyzed no doc cares they just blame it on other meds but do have your adrenals checked.
Cookie Lady
That’s interesting. I will want to do some other googling about that. My daughter had hashimotos and thyroid cancer (at age 15). Her thyroid was removed. She has just been diagnosed with her second round of mono at the end of her freshman year of college. She was told that they’ve seen stress trigger it. But, she is on T4 only and hasn’t felt great since her original surgery.