Almost Nirvana and Other Madness

This week’s blog is for my fellow thyroid sufferers and other “spoonies”. A thyroid friend contacted me the other day and asked how I was doing (Hi Olivia) that got me to thinking that I hadn’t reported recently on the status of my health. There isn’t really anything earth shattering to report, nothing fabulous or horrific but I feel after a year on T3 only, and hitting more than a few bumps in the road, things are nearly there, almost nirvana (but superstition keeps me from saying anything more).

I will do a quick rundown of the past year for those who might be unfamiliar. I have had hypothyroidism for 15 years give or take a year. In those years my dose of Syn-crap was constantly inadequate and being increased every time I had my blood drawn. I found a good doctor who would let me try Armour in 2010 but after about a year on Armour I was still having problems with an irregular heartbeat that began three years prior to trying Armour (things started out quite well on Armour but then Forest Pharmaceuticals changed the formulation and the irregularity came back with a vengeance).

I decided to go the “T3 only” route in April 2010 after reading Stop the Thyroid Madness by Janie Bowthorpe and investigating various health forums that she introduced to my world. I had been battling this irregularity for more than three years now and despite what my doctor was telling me (you need to see a cardiologist) I knew  my heart was reacting to something akin to an improper release of adrenaline and that had to be caused by one thing, my improperly treated thyroid. I fit the description of a person with a Reverse T3 issue, basically an inability to get enough T3 to the thyroid receptors because they are blocked by T4. If the receptors are blocked by T4 the T4 is not converted to T3 as it needs to be for the thyroid to use it, so you are always under treated and have a resistance to any thyroid medication that has T4 in it.

Around this time last year, that is July Fourth and approximately 3 months on T3 only, I suddenly started having panic attacks, inability to sleep through the night, a feeling of not being able to swallow, diarrhea and a basal temperature of 98.2 -98.4. My daytime average wasn’t that high and other factors led many with whom I consulted to feel I was suffering intolerance. Adrenal fatigue can lead to intolerance issues, so I tested my adrenal health. The tests showed challenged adrenals, not full blown adrenal fatigue but low normal results especially midday, so I did try Isocort and then hydrocortisone but by and large those made me feel worse. [In retrospect, thanks to many talks with Nanci, I have concluded that my adrenals were weak but should never have been treated with anything containing hydrocortisone but hindsight is 20/20 as they say].

I “cleared” in July and had to drop my dose from 125 mcg to 68.75 mcg. I stayed on the Isocort (taking it like this 3-3-2-1) and gradually increased my dose of Cynomel according to my temperatures. Increasing according to my temperatures meant that I actually increased too much and too fast and eventually developed a bothersome tremor in my hands. It was so pronounced that it made my job (dental hygienist) difficult but the good news is I never had to quit working despite what I would call the rigors of clearing T4 from my receptors.

Last autumn was actually pretty miserable as I diligently climbed my way back to taking  125 mcg of T3. I was constantly taking my temperature three times a day and finding it sub normal over all, sometimes even my basal temperature was below 97.6, so I would up the dose despite the tremor and sleepless nights. Things weren’t great, I didn’t feel “normal”, my temperatures weren’t “normal” and I was getting discouraged.

Christmas was the nadir of my T3 only treatment. I had increased and decreased and now I was taking 118.75 mcg. It was Christmas Day and we were in Bayfield, Wisconsin with family an activity that usually brings me joy. That weekend I hardly slept, my heart was racing constantly. Basically, I was miserable, so I decreased again despite my temperatures  (which still weren’t normal) to 112.50 mcg. Nothing improved, nothing.

To make this now long introduction a little  shorter, after talking online for months with several helpful “thyroid friends” (to whom I am most grateful) this last winter, in February, I decreased dramatically to 50 mcg of T3. Miracles of miracles, almost overnight all of my objectionable symptoms disappeared, my temps didn’t come up but I finally felt human again after months of, gosh I hate to be dramatic, torture. I honestly couldn’t believe what a difference it made. I could go upstairs without feeling breathless, I was sleeping the sleep of normal people, my thinking was clear, my tremor completely disappeared and miracle of miracles my irregular heartbeat was better than it had been in years.

Enter Kris today. I am enjoying summer in Minnesota (yes, it finally has arrived), my new grandson and relatives visiting for the Fourth of July. I am still taking 50 mcg of T3 spread out in four equal doses the last one being as I turn the light out at bedtime. My daily average temperature is sub-par but my basal is within normal limits (97.8) and as long as I feel “human” I am sticking to 50 mcg of T3.

I know my current regimen flies in the face of everything my gurus on the RT3 site recommend but my heart is as regular as it has been in years and the other night I actually found myself sleeping on my left side. That is a significant event only for those of us who have experienced the sound of a pounding irregular heartbeat. When you lay on your left side the sounds of your heartbeat are magnified and, needless to say, unbearable when those beats are irregular. When I awoke sleeping on my left side I knew I had passed a milestone in my treatment.

I have my daily supportive routines like taking at least 1/2 teaspoon of Celtic Sea Salt every day, twice a day. I take one Thorne B #12, Thorne folocal if I take additional B12, Krill oil, antioxidants with 2000 mg of Vitamin C, and Bio-Astaxanthin every day. Other days I might add Vitamin D3, Vitamin A, Zinc Picolinate Plus, Super K, Chlorella and Spirulina.

Three times a week I put a scoop of  Boku Superfood in my morning smoothie which consists of some form of protein powder (SunWarrior or Mercola’s Whey). I am currently not following a gluten free diet but my carb intake is very low during the week and only on the weekend do I eat more carbs. I guess you could call it carb loading for a day or two which is sometimes recommended by exercise coaches.

All in all, I feel my health this summer is far better than last summer. My blood test panel showed improvements but certainly not perfection. My hormones are all low but my SHBG was very high, so that is the explanation for the low levels of my sex hormones. I know I need to compensate with higher doses of Estradiol and Progesterone but have yet to find a doctor who is knowledgeable in treating with the Wiley Protocol. My gall bladder still troubles me but that has been ongoing for years and I now understand that a sluggish thyroid lends itself to a sluggish gall bladder, so I take the necessary steps to keep it as healthy as I can. I have a very dry burning mouth at times and my eyes feel dry, so I suspect Sjogren’s but there is no diagnosis of such a thing and with a diagnosis I am not sure anything would change. I use natural lubricant for my eyes and I have very good oral hygiene.

Does my heartbeat still trouble me? Sometimes I can feel it “skip a beat” but instead of panicking I take it in stride and soon things are normal again. It is never precipitated by exercise, so I am not fearful. My blood pressure is nearly perfect if on the low side. My energy is good but I am careful not to overdo as I feel my adrenal health is still compromised (indicated by my low temperatures of 98 degrees most afternoons that I check). My sleep is the best it has been in years and I often don’t wake at all or if I do it is only once and I go right back to sleep.

My wish for all the “thyroid friends” and “Spoonies” who read this is that you, too, can find your peace. Just know that some day you will turn the corner and find your self again. Even if it is fleeting, for that singular moment just enjoy the experience of  being you again.

Happy Fourth of July,

Kris

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2 responses to this post.

  1. Posted by Cheryl Remmerde on 20:18 at Tuesday, September 23, 2014

    thanks for writing all this stuff!! I recently finally was diagnosed with Hashimoto’s after years of wondering that the heck was wrong with me and many doctors not finding anything! ignorance abounds.
    I wanted to comment on a couple of things, one being dry mouth. What kind of toothpaste do you use? I had a terribly dry mouth for a very long time until I switched toothpaste!! I went to an eye doc for dry eyes and my eyes are not dry, they aren’t “oiling” properly. and lastly, I have the night palpitations and have had for years and want to let you know you can omit the salt. Plain old water also alleviates the palpitations. I also find that if I drink plenty of water before going to bed (even though it makes me have to get up in the night and go) I don’t get the palpitations. Maybe some of this will be of use.

    Reply

    • Hi Cheryl,
      Welcome to the world of Hashimoto’s. My dry mouth is much better these days but was a huge problem when my thyroid hormones were unbalanced. I do not use toothpaste at all. It isn’t necessary for clean teeth nor healthy gingiva. I am not a believer in fluoride as it blocks the thyroid receptors, so long ago quit using toothpaste. I do occasionally use baking soda and I do some oil pulling with coconut oil.
      My eyes are still gritty in the morning but they don’t bother me for most of the day. My eyes are actually an issue I have done very little about and I need to. I am sure an ophthalmologist could tell me plenty about my eyes, some of which I might now want to hear. What are you doing for “oiling” your eyes?
      I would never give up my sea salt but mostly because my blood tests show a low sodium-low potassium issue. I tend to go by blood test results when it comes to electrolytes. How are your electrolytes? If they are in the upper end of the range (In other words okay) then water alone might help the palps.
      If sodium-potassium-magnesium are off or out of balance I believe patient experience proves that water consumption would not correct the imbalance. Another thing that can help with palps is a massage that brings your stomach down and stops pressure from building against your heart. It is a massage for hiatal hernia and there is a video on my site if you type hiatal hernia in to the search box.
      I really appreciate your comments and if anyone reading this wants to give it a try let me know how it works for you. After all this is a site written by one Hashimoto’s survivor to share my experience. I am not a doctor nor do I recommend treatment but I do share my experience and the experience of my readers.

      Reply

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