Posts Tagged ‘thyroid resistance’

Winter Blues

???????????????????????????????Last night, I sat outside with my SU while soft, white flakes of frozen precipitation gently fell on my shoulders. The water in our spa was warm. The air was quiet. It was that kind of hush that only comes with freshly fallen snow. It was sublime.

Suddenly the quiet of the evening was interrupted by a very distinctive and recognized sound, a certain woosh of feathers and a coo. I identify birds by their calls, so I looked around for the source because I knew it sounded like mourning doves but this it too early.

If this were the halcyon days of spring instead of the dead of winter “my” doves, letting their presence be known, would not be unusual but doing so on February 3 is most uncommon. I finally spotted four of them, one lone scout and three fluffy companions resting comfortably in a decorative crab tree not far from where we lounged.

This morning, I was somewhat relieved to read that while they prefer to spend all year in the Greater Antilles and most of Mexico  (and who doesn’t?) they will also stay as far north as central Minnesota even through our nasty winters. I like to think they know they will be safe at my house where the feeder is always full and the bird bath is warm but still winter is winter and we have months of it left to endure.

In the middle of our winter blues spring tries to sneak in with the coo of one of the loveliest birds I know. Winter is here to stay for a while but seeing my doves has given me a certain confidence that spring will arrive sooner or later.

FYI

I was spurred to action on my blog by the recent conversations on Facebook. If any of my readers are not on Facebook and are not participating in the conversations on the thyroid groups you should know that our supply of T3 from south of the border has dried up.

I do not know all the details but here is what I do know. I placed an order the first of January 2015. Payment was accepted and I received a note that it had been shipped. I paid no more attention until this discussion came up on Facebook.

After I read several comments it seemed clear that yes, payments are being accepted but it doesn’t mean they have T3 on their shelves. One person who has been in touch with the pharmacy said they told her their credit card system is antiquated and doesn’t know how NOT to accept payment.

That comment prompted me to check the email that had been sent right after my order was placed in January. I clicked on the “track your package” link provided and much to my surprise it took me to my last order that had indeed been delivered. In November. It was not, as I thought, an email regarding my January order it was an automatically generated email from months ago.

Screwed

There I said it, I think those of us who order from this pharmacy are screwed. I don’t think they are being intentionally dishonest but their supplies ran out and they don’t know how to handle the situation. There aren’t just one or two people not getting their T3, their lifeline, there are many of us who placed orders as far back as November who are not going to be getting our T3.

Many folks are now reporting that they have been sent an email saying that the transaction “failed”. Those folks feel that this means the problem is not temporary it is permanent. Why the manufacturer would suddenly stop making Cynomel, I do not know but it is starting to point in that direction. Fingers crossed that this an erroneous conclusion and they will fill their shelves again and we will receive our T3.

Choices

Okay, so now that those of you who get your T3 from Mexico know your T3 supply is in danger it is time to pursue another source. I have resorted to begging my doctor to provide a prescription for an American made T3 from Perrigo (formerly Paddock). It is gluten-free unlike the American Cytomel which, by the say, is not guaranteed to be gluten-free. She will not be willing to prescribe the dose I need but anything is better than nothing until I figure this out. At the moment I have three months of Cynomel left and I can supplement what she is willing to prescribe to get my normal dose.

I suppose another choice is to try a natural desiccated thyroid med again. The most popular one right now is Westhroid. It is gluten-free and most people are feeling really good taking it.

Armour is another choice but most people feel it doesn’t  work as well as it used to. Armour has never recovered their reputation after they apparently made a formula change several years ago that they would not acknowledge but the humans taking it noticed a decline in their health.

ERFA (Canadian NDT) has reportedly been causing a return of hypo symptoms, just like Armour. Seriously, if a pharmaceutical company makes a formulation change why not tell the consumer that they have made a change no matter how slight or inconsequential. Patients need to be told before they start feeling a return of hypo symptoms, or worse, are sick on the couch again.

Thyrogold is an over-the-counter natural thyroid med that Dr. Lowe (who died three years ago after a bad fall and trauma to his head) developed and it is now being sold by his widow, Tammy. It sounds great but the cost might make it prohibitive. The general starting point is 2-3 capsules a day and 90 capsules are $54.95 plus shipping. That is approximately $60 a month if taking 3 capsules a day.

If you know of other possibilities please let me know. I will share the ideas on the Facebook groups but it will also help those who read Krisinsight and are not on Facebook.

Krisinsight

This blog entry has been almost entirely my viewpoint but let me share one more thought with you. Allopathic medicine is seriously damaged. Our system is so dysfunctional that it is harming the patients who have to use it. Doctors simply do not understand the thyroid and how it affects our bodies when it doesn’t work properly. They go by the book and the book is old and out of touch with reality.

We are forced to treat ourselves because our doctors look at low FT3 numbers and say all is well. They do not understand RT3 ratios and as long as you don’t have Wilson’s syndrome they tell you all is well when your ratio is revealing a thyroid resistance issue. When you take NDT or T3 your TSH will most likely be suppressed when you finally feel good. However, when your doctor sees a suppressed TSH they assume you are over medicated even when your body temperature is low, your pulse is low and your blood pressure is low. Come on, doc, you should know better.

Sadly, too many doctors tell patients who say they just don’t feel good on their current dose of T4 thyroid meds that they may need psychiatric help. Or worse than that, if a patient asks too many questions they are rudely informed that they are Google experts and will be dismissed as patients if they continue with this nonsense.

Ugh. This is our reality. I faced it five years ago and solved my heart problems (inappropriate release of adrenaline) by treating myself with T3-only. It wasn’t easy and I don’t recommend it to anyone but I did solve my problem so effectively that the SU has completely forgotten how ill I was 5 years ago today.

My wish for all of us. That some day this will change. I pray that “some day” is just around corner.

Santé,

Kris

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Summer and Other Things

IMG_1917 (2)Last week I was sitting on my canopied deck sipping my milky Keemun Congou tea when my ears were suddenly assailed with the chattering of birds. Not just any birds, no, not these birds, these are MY orioles, the Eastern and Orchard orioles. When they arrive in April and May they tell me their winter stories of joy and sorrow. Stories about their long flight north and who made it and who didn’t. They tell stories of their hunger and show their appreciation by gobbling bowl upon bowl of the purple goo that I lovingly put on my deck railing. After all they need the energy to start their nests and raise their broods and their time with me is brief. Within weeks of first hearing their songs they will nest and their visits will wane.

Then around this time of the summer (August) they return in profusion. Only this time they are accompanied by their young, their very demanding, very hungry offspring who have gone from infants to teenagers in a matter of weeks. They yell at their parents and flap their wings demanding more and more jelly be put in their mouths. At times I will look out at the crab tree they sit in and it will be aflutter with a dozen or more orioles and I just smile. These orange and black lovelies make my summer days complete (so I guess you could say they complete me).

Sometimes I am left heartbroken by their stories and it seems every year there is one heartbreaking tale to be told. One year it was a female oriole with a tumor on her beak. Every day she returned for more jelly and would often sit right by me and eat what she could get in her mouth and stare me in the eye. She struggled and I cried but every day she returned and every day we “talked”. One day she came and I could tell she was suffering; really just asking me for relief but coward that I am I knew Mother Nature would offer her solace soon enough and let her be but kept her fed as best I could. Then one day she didn’t come anymore and I knew her suffering was over. I still cry over her (I cry now telling her story).

My orioles will soon be migrating south to escape our brutal winter winds. They will bulk up for the next month on cheap, Target grape jelly because that is the jelly they have requested (believe me I have tried organic this and that and the bowls sit there and are emptied in to the trash) and as soon as Mother Nature alerts them they will leave for Florida and Mexico. I will miss their discussions and their bossy attitude about my deck but I know, as sure as I know winter will come in Minnesota, they will return and I will joyously welcome them home.

Little things can be important

For some my orioles are little unimportant things but to me they are a huge part of my summer joy, so it is with other things in life. Take a night of sleep for instance. For some people sleep is never a problem. For others, like my daughter, sleep is a precious commodity as her nights are still interrupted by the demands of a hungry, growing baby boy. For me, sleep continues to be one of those perplexing issues. I have nights when I sleep the sleep of kittens and then other nights I am fitful and restless all night long and morning simply cannot come soon enough.

This past week I finally took the bull by the horns because I had regularly been waking up all night long with horrible dreams and aches and pains. I decided I had to experiment a bit and suffer the consequences if need be. I have been doing the CT3M dosing for T3 for about two months I think (time does fly so it may be longer than that).

My normal dosing for some weeks has been to take 25 mcg of T3 sometime between 1 and 2 in the morning. My next dose of 12.5 mcg would be between 8-10 a.m. and my final dose around 5-6 in the evening. Almost every night I was waking at midnight in a real huff as the result of some horrible dreams (nightmares). I would settle back down but my sleep wouldn’t be good until I took that 1-2 a.m. dose of T3. After that dose I would sleep like a kitten again.

Think Kristin, think

This got me to thinking, if I am waking at midnight and only sleeping well after I take 25 mcg of T3 at 1 or 2 in the morning, I am not providing enough T3 at the midnight dump. When my demand for T3 is at its greatest (typically midnight) my T3 was mostly used up having not taken any since 5 p.m. Perhaps if I went back to taking T3 at bedtime, lights out, my sleep would improve and there wouldn’t be the shocking nightmares.

In the past week I started dosing my T3 more like this:

  • Bedtime (8:30-9:00 p.m.)- 12.5 mcg
  • 3 a.m. -25 mcg
  • 12 noon-12.5 mcg

Krisinsight

Here is what I think was happening. I am not saying I am right but it is what I think. At midnight I was running low on T3 after not taking any for 7 hours. If you don’t take enough T3 to feed your thyroid your adrenals will kick in some adrenaline to compensate. That mass-produced adrenaline startles you awake and even can produce nightmares. You heart will beat rapidly, your breathing will be elevated and you are  in a sweat, like a hot flash.

By taking a bedtime dose of T3 when my demands are their greatest I have T3 to offer my body and it uses every bit but I don’t wake up with a jolt, nor in a sweat. I have pleasant dreams as I did last night that I can’t quite remember. I was recalling with vividity my disturbing dreams during those weeks of taking my last dose at 5 p.m..

I knew my body was getting enough total T3 because of my recent blood test and that was really perplexing for me. I would go over and over all the possibilities and sometimes even feel somewhat hopeless. I mean, would I ever sleep normally again? Was it time to do a diurnal cortisol test (well, yes it is but money, money, money) and see how the old adrenals were faring?

I don’t know everything and every day I learn something new or I consider it a wasted day. That said, I know one thing for sure, there will be further tweaking. I know, as almost all thyroid resistance folks know, this thyroid stuff is a continual journey and I will not be put off by the need to make a change to improve my quality of life. That is my solemn promise to self.

Like my orioles come back every spring I will return next week. Until then have a great week and if you need help please feel free to ask. Ask me, ask your friends, ask your medical provider because by dealing with the crisis you will find an answer.

Santé,

Kris

How Do You Know When to Increase?

I am writing this post on the day before Mother’s Day because I get the honor of having my daughter, her husband and my grandson with me tomorrow, Mother’s Day. What a great gift she is giving me as I know my daughter hates getting in the car and traveling across town but she is doing it to honor me and that makes me feel very humbled and grateful.

On bold moves

This week I made the bold move of increasing my T3 dosage. To many that may seem like no news. For someone like me who went through an entire year of incremental increases of T3 gradually exceeding the dose my body could tolerate it is a bold move indeed.

I will try to provide a short timeline for those who are interested otherwise skip down to “Along came T3”. I started my T3 only in April 2010. I decided to try T3 only because nothing was helping an irregular heartbeat I had suffered with for about a year prior to starting T3-only.

When I was first diagnosed with hypothyroidism about 15 years ago I was prescribed what I now call Syncrap, T4-only. Then around 2005 I got tired of always needing to increase my thyroid meds and stopped taking them. Just for the record, that was not a good idea. This in turn eventually caused my adrenals to burn out, a.k.a. adrenal fatigue. Finally in about 2007 I started seeing Dr. Robert Bruley in Linden Hills, MN. He put me on compounded T3 and T4 adjusting the T4 according to my symptoms but keeping the T3 very low.

I stayed on T3/T4 for a year or two but my heart continued to give me troubles. I knew from my symptoms that this was not a weak heart or blocked arteries. It would come on at certain times of day and certain times of day it would be non-existent. Exercise didn’t bring it on, stress didn’t bring it on but when it came on it was so severe it would make me cough as if I had asthma.

Finally in late 2009, I convinced Dr. Bruley to let me try Armour. I felt a drug that supplied me with T1, T2, T3 and T4 was superior to one that was mostly T4 with a tiny bit of T3. I was probably correct but it still didn’t solve the problem. My palps were disturbing but thankfully not life threatening.

Along came T3

Then in April of 2010 I took a really bold step and started T3-only. I did so without Dr. Bruley but with the wonderfully helpful people on a thyroid forum who looked at my RT3 blood test and told me I had thyroid resistance and needed T3-only to clear the T4 that was blocking the all important T3 from entering my cells. These folks had all been under treated by allopathic doctors and some had come very close to dying as a result of T4-only thyroid drugs. They had found help in taking T3-only but first they had to clear the T4 out of the thyroid cell receptors and that my friends is the bit of Hell I mentioned earlier.

It took me 9 months to finally feel normal again after starting T3. That was about 4 months of checking my temperature three times a day. 5 months of hand tremors. 6 months of horrible sleepless nights. All that but my heart was beating quite regularly at this point, not all the time but more and more it was not beating irregularly and no more coughing, none. Finally at 9 months came a realization that I had to dramatically decrease my T3 dosage. I couldn’t take the sleepless nights nor shaking hands. I gradually dropped my dose to 37.50 mcg at dose where I felt comfortable and my heart still beat normally.

At that point I felt good and decided I just couldn’t keep concentrating on the negative. I needed to be well. I quit taking my temperature three times a day and got on with my life. I knew 37.5 mcg wasn’t enough but it was okay for a while. About 7 months ago I increased gradually to 50 mcg and have been at that dose ever since.

At 50 mcg I had almost normal energy, my hair loss decreased, my sleep was reasonably good. I even slept on my left side at night (on your left side you can hear your heartbeat and when it is irregular that is disturbing). However, I knew I should wake up feeling more aware and sharp than I was. Even when I started my B12 shots, instead of feeling much better I felt only marginally better and, as time passed I felt even more lethargic than I had been feeling.

The good news

I think this makes a short blog a long one and I am sorry for the verbosity but we now move onward. This week I finally took a basal temperature and when it read 97.3 I knew it was time to increase my T3 and I felt certain my body could handle an increase. On Tuesday I added 6.25 mcg to my 11 a.m. dose. The first day I felt no change whatsoever. The second day I could tell my pulse was slightly higher and my sleep was better.

So far things are working rather well. My temperatures were up on the second day but now four days later they are down again.  My blood pressure is closer to normal (109/70). My pulse is normal (70). I don’t feel so muzzy headed when I get up in the morning. With my temperatures hovering around 98 during the day I know I am not done. I need more T3 and will aim for 75 mcg as that is the level that most people need to feel really good but if at anytime the tremors return or I feel hyper the dose will change. That is the beauty of T3-only, you can lower it and see quick improvement.

Kris Insight

Here is why I think it is working this time. It is only a theory mind you but I think taking the B12 shots and increasing my cellular levels of B12 has contributed to allowing what T3 I take to actually get in to the cells. When the T3 is finally allowed in to the cells you go quite hypo (slight weight gain, sluggishness) because you are using it all and need more.

I also think my inadequate levels of selenium, zinc, CoQ10 and Inositol were possibly keeping my cells from clearing all the T4 out and/or allowing all the T3 in to the receptors. I am now taking therapeutic doses of all those nutrients to get my cellular levels up where they belong.

I could be wrong so don’t take me to task about my insight. I am not a doctor, I am a dental hygienist who has successfully treated her thyroid resistance with the help of the “village”. With that said, if you are still having troubles with getting your T3-only treatment to work for you (or any thyroid treatment for that matter) may I make a suggestion? Get a Spectracell Nutrient test. It is clear to me that we really must test everything we can at the cellular level not just a normal blood test.

If you want more information on the trials and tribulations of going it alone just go here. I have pages and pages of experience you can read through. Obviously I am still learning and I need to keep an open mind and an informed one but for today increasing a minute amount has made a difference and I feel good.

Santé,

Kris

December Thyroid News:The Hypothyroid Heartbeat

It is trite I know but I will say it anyway, I simply cannot believe how time passes us by. One day you are 10 without a care in the world and the next you are 57 with all the cares of the world on your shoulders. Being  a person with autoimmune dis-ease does not make it simpler but there are few if any dull moments and you constantly learn something new and unusual. With that in mind I thought an update on my thyroid health would be timely.

On Sleeping on Your Left Side

Many of my readers and fellow hypo’s will know that my hallmark of thyroid health is being able to lie on my left side and without further ado let me say, I am sleeping on my left side. Not all the time but when my right side is sore from use I can turn to my left side and even if I hear my heart beat it is not irregular and it is not pounding. Just for the sake of feeding my thyroid health superstitions I will add that it is not consistent, there are times when my heartbeat blips or pounds (read below for other reasons) but for the most part I can turn to my left side and fall back in to a relaxing, rejuvenating sleep without any particular upset.

A Brief on the Hypo’s Heartbeat

The above statement may be hard to comprehend if you have never experienced the hypothyroid heartbeat, so let me briefly tell you. When your thyroid is not producing enough thyroid hormone to adequately feed the needs of your body your body produces unnatural amounts of adrenaline to compensate. This over compensation by your adrenal glands, in my opinion, not only causes adrenal fatigue it affects your heartbeat causing palpitations. This often ends with  you sitting in a cardiologist’s office, then being put through a myriad of tests only to be prescribed this and that medication and still suffering the palpitations.

Bear in mind, we “hypos” aren’t used to a normal heartbeat because our hearts often beat too slowly and too softly to be heard, so as we start medicating our thyroids adequately, either with a doctor’s assistance or on our own,  we suddenly hear a pounding heartbeat if we lay on our left side in particular. Add to this “pounding” (but probably normal) heartbeat any kind of irregularity and you have a person who never sleeps on their left side. Never, that is, when they are under-treated or incorrectly treated for thyroid resistance.

Life Changes

I hate to go so far as to say I live in fear of the irregular heartbeat but I have blogged on this subject ad nauseum, so I must dread it. A few weeks ago I found myself at my computer at midnight with a heartbeat in excess of 100 bpm. This always leads to researching online, first to my groups and then to other online comments or studies. This particular knowledge gleaning moment led me to a conclusion that was the end of my world as I knew it, after reading  a hundred entries or so on many different forums I realized what the problem was. I needed to cease my evening tipple.

Yes, you read that right and it pains me to say because I love my traditions (not addictions because I can give them up without bad side effects) many of which I learned while living in Europe, a time that is full of pleasant memories and custom. I love my English “tea ceremony” every morning and I thoroughly enjoyed two glasses of wine in the evening. What I didn’t realize is that my adrenal fatigue had reared its ugly head and adrenal fatigue and alcohol do not mix.

If you have adrenal fatigue alcohol acts as a stimulant akin to having caffeinated coffee or perhaps even Ephedra or other like stimulants (I have never taken Ephedra but I have read about its effects). I knew those were stimulants to avoid just like the nerve racking television which I avoid after 8 p.m. because the lights and noise stimulate me like a cup of coffee or worse.

What I didn’t seem to associate with my sleeplessness and racing heartbeat was the wine before supper that “relaxed” me. Seriously, how could it be a stimulant? It is specifically supposed to help me relax. I felt betrayed (not really) but clearly I needed to stop that long standing custom, so I did. If someone would have told me that putting that particularly bad nightmare scenario to bed was this simple I would have been all over it ages ago.

I know, I know, I can hear all the health conscious folks reading my soliloquy asking with wonder “Doesn’t she know alcohol is bad for her?” Mercola and many others preach and preach on the evils of alcohol but honestly I still don’t think a glass of wine is going to kill you but there is a time and place and I am not in either at the moment.

In Conclusion

With that admission behind me I feel like my shoulders are less rounded as if a weight has been lifted from them. I have to say that other than a few niggling issues I have been exceptionally well. I am still taking 50 mcg of T3 which results in normal energy and slightly below normal basal temperatures. I have recently started taking Ashwaghanda again and I added 5-HTP to my repertoire of supplements to elevate my moods slightly and help me sleep even better.

There are things that still need attention and the one that plagues me at the moment is my dry eyes and mouth. It could be Sjogren’s as that often accompanies Hashimoto’s Disease but I have never had that diagnosis, so my quest for an answer to that problem continues. If you have successfully treated this issue please share your experience by leaving a comment.

I conclude that with almost everything in my life I have come to expect the unexpected and I glean from all I experience what I can. I am fascinated by the stories of the world and the challenges we all face. If you come across this blog while on your own midnight quest for knowledge I hope you find it comforting that you are not alone. We are truly in this together and we share the weight of the world’s health issues on collective shoulders.

To your good health,

Kris

Keeping Promises

I am painfully behind this week but with the Labor Day holiday weekend and a most welcome visit by our daughter and our grandson I can’t say time has been wasted. In fact, I can’t think of a weekend where I have felt the joy of life quite so much. Our family took this time to just relish the happiness and blessings we have been granted. I hope you and yours were able to do the same this end of summer Labor Day weekend.

The Ability to Forget That Which We Already Knew

When I last updated you on my thyroid news I was taking 50 mcg of T3 and I reported my temperatures were just about normal. What I conveniently forgot was something that Val, the moderator of two forums discussing thyroid resistance, said and has said all along. If you take progesterone it will artificially elevate your temperatures.

I remembered her words when I started checking my temperatures on the days I do not take progesterone. They were not normal they were low and they were low all day. As soon as I started my days of 200-400 mg of progesterone my temperatures would hop back up in the normal range or close to normal range. With that evidence of low functioning thyroid and with more than a little trepidation I increased my dose of T3 by 3.125 mcg (1/6th of a tablet) on July 11th.

By July 23rd I was at 62.5 mcg of T3 and currently I am taking 68.75 mcg of T3. This has its good and bad effects and I think it is harder on my adrenals, so I am staying at this dose or lowering until I feel less adrenal stress. I do have more energy and have even cycled 20 miles up and down hills with my spousal unit (talk about adrenal challenge). However, my heart has its moments at this dose and most of them occur at night. When I increased to the latest dose around the end of August I started waking up around 1:00 but going right back to sleep.

Realization Dawns

I didn’t actually attach the restless nights to anything in particular and my thinking, faulty as it was, was my sex hormones were out of whack again. Well, my hormones probably were a little out of whack but it most likely is my thyroid hormone that is not quite right. As recently as this past Saturday night I found myself up drinking that damn salt water that slows my rapidly beating heart. As I waited for my heartbeat to regulate I started reading my health diary and low and behold the restless nights resumed when I increased my dose of T3 in July.

Perhaps the increase was not entirely to blame but in general since increasing my dose I have become more wakeful around 1 a.m.-2 a.m. My more recent rapid heartbeat episodes (Friday and Saturday night) even forced me from my warm and comfy bed where next to me my slumbering spousal unit lay unperturbed. I can stand to wake up as long as I go right back to sleep but when forced from bed for an hour or two a solution must be found. Early Sunday morning, sometime between 2-4 a.m. the light dawned, I knew what I had to do.

I decided that last night I would try taking the same dose of T3 per day but not 25 mcg at bedtime, only 12.5 mcg and spread the rest out over a 24 hour period. It worked wonders last night but if it doesn’t continue to work I will lower my dose by 6.25 mcg and further if necessary. I don’t think 50 mcg was ideal but here is what is true, I was sleeping like I hadn’t slept in years and my irregular heartbeat had become only an occasional unpleasant occurrence instead of a daily event (I am still terribly superstitious about saying all is well). If my temps had just been more normal I would have been quite happy to stay at 50 mcg of T3.

Day to Day Business

Here is where I am as of today. I am taking 68.75 mcg of T3 with the last 12.5 mcg at lights out. Most nights I also take 3 mg of Melatonin (Superior Source brand). Twice a day I take a B complex and Alpha Lipoic Acid (300 mg) both by Metabolic Maintenance. I try to take 1000 mg of Krill oil twice a day, 200 mg of Premier Brand Magnesium Glycinate and of course Vitamin D (5000 mg-10,000 mg three times a week or I use my Sunsplash Renew three times a week for 10 minutes) and Vitamin A from Atlantic Cod liver oil. I also try to take up to 1 teaspoon of sea salt (Real salt or Himalayan salt as well) a day but I prefer to put the salt on my tongue and take a swallow of water to down it. I just have not grown fond of salted water.

I actually have a number of digestive aids that help with my sluggish gall bladder. I regularly take two Biotics Research Beta TCP tablets. On my morning quinoa or in a smoothie I include Apple Pectin powder. Less frequently I take Choline Bitartrate, Ox Bile, Betaine Hydrochloride with Pepsin, Probiotics and digestive enzymes. In fact, if my gall bladder does not trouble me I only take the Beta TCP.

I am finding diet to be the best control of my digestion. I am following but not adhering strictly to Debbie Graefer’s gall bladder diet. I eat lots of quinoa for protein and very little meat, red or white. Sadly I can eat very few eggs but occasionally sneak them in a gluten free pancake recipe I enjoy. I am juicing cucumbers, celery, beets and apples and spicing it up with fresh ginger taking sips throughout the day. For now fat of any kind is very limited but I do include some flax oil, a bit of olive oil, hemp oil and the fat in my real milk and kefir. Anything with wheat and its cousins are but distant memories but I am eating lots of fermented foods for the enzymes and probiotics. It sounds boring but it has led to some weight loss and for sure less gall bladder complaints.

Even with the increased dose of T3 my temperatures are not quite normal. They are better than they were but my basal is slightly lower than it should be at 97.6 and my daytime temps probably average 98.2 but I am not regularly taking my temperature anymore.  Also I do not have my eyebrows back although I can feel tiny hairs growing in and am most encouraged by that development.

Looking Toward the Future

As of today, here are my goals. I want to have normal temperatures with no more cold toes (yes, that is a goal) and I want my eyebrows back even if they are colorless. I would like a better functioning digestive system and my hope is with increased thyroid function my gall bladder, liver, and pancreas will also work better. To increase bodily function I am going to use Reiki and incorporate other more traditional medicine. I am finally ready to get regular exercise back in to my daily routine and plan on doing T-Tapp to restore my physical body.

Promises Kept

I promised to update my thyroid news this week, so consider yourselves updated. It seems to me, when you are trying to overcome thyroid resistance it takes time, lots of time, to tweak and get everything just right. That said, in the last year and a half I have made a lot of progress and I find that very encouraging. I can even look at my own problems now and try to find the answer.

I am just wondering how many people who read my blog, (who have thyroid resistance or other ongoing health issues) feel the same way. Does it seem to take a long time to get it all just right?  When I look back on the last few years and the progress I have made I find myself feeling really grateful for the internet and the information I have gleaned from my fellow human beings. You see, in my opinion, it is only with the sharing of knowledge and experience that we will eventually get it right.

Here’s to getting it right,

Kris

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

What Flute Are You Following?

You know the story of the Pied Piper, right? It struck me in talking to my friend this week that many of us follow our doctor’s advice like they are Pied Pipers. They say something, we follow it like some magical flute leading us along a wrong way path, often because we are given no choice in the matter.

I have talked to far too many people who, when they question a doctor’s diagnosis or ask about something their doctor said (or didn’t say), are put on the spot with some inane question like “I suppose you read that online” accompanied by a look that puts you in your place. For those folks, I thought I would share my friend’s recent experience. As usual I will most likely make a short story long but bear with me.

My friend, who shall remain nameless for privacy sake, receives medical care from, in my words, a functional medicine physician (or integrative is another term for the same type of medical practice) for Chronic Fatigue and Fibromyalgia. Functional medicine physicians as defined by me are MDs who ask more questions, incorporate all walks of medicine in their practice and generally think outside the box. I think they are far superior to the poor overworked GP who has been told by their practice managers that they have no more than 15 minutes per patient and sometimes, it has been noted, never take their hand off the doorknob. This is an important detail because she is being treated, let’s just say for the ease of it, in a rather elite fashion.

My friend and I have weekly discussions about health because we are both avid researchers and honestly, we are willing to experiment with alternative medical treatments. For example, I met my friend when I owned a FIR sauna business. She came in for FIR sauna treatments to help diminish her fibromyalgia pain. She was experimenting to see if the sauna would really help (To her doctor’s credit she had suggested the FIR sauna).

To exemplify my willingness to try alternative medical care, two years ago I bought a Mercola Sunsplash Renew because Joe Mercola claimed it could maintain healthy D levels with no supplementation. I felt having good D levels was of primary importance to the healthy functioning of a human body. I think this is another important detail because both my friend and I try to think outside the proverbial “box”.

We also try various treatment plans our doctors suggest and we try out things we have researched and then we spend time testing these things and discussing them. We have often discussed thyroid disease as that is my primary interest and my friend would tell me about symptoms she thought were typical of hypothyroidism. Practitioners like Dr. John Lowe feel that there is a connection between Chronic Fatigue, Fibromyalgia and hypothyroidism, so I asked her long ago in one discussion if she had ever had a complete thyroid panel. In my opinion, everyone who has some symptoms should have a complete thyroid panel and if your doctor won’t test it then do it yourself.

At the time she told me “No, my doctor has only run a TSH. She always says I am fine.” Really? REALLY? My friend is cold all the time, she suffers from constipation, she can’t sleep, she has unremitting pain and rather more subjectively she feels her hair is falling out. What more do you need before you as a doctor run a complete thyroid panel?

On and on these discussions went and this year when she saw her integrative medical doctor for her yearly appointment my friend requested a complete thyroid panel be done. I will list below the thyroid tests plus the other tests that Janie Bowthorpe recommends to diagnose hypothyroidism properly:

      1-TSH – this lab is only for diagnosis of hypopituitary NOT to diagnose or dose your hypothyroidism
      2-Free T4 and Free T3 (note the word “free”–important since it measures what is unbound and available.)
      3-Reverse T3–to be done at the same time you do the Free T3. Then calculate your ratio with the results.
      4-Thyroid Antibodies (anti-TPO and TgAb. YOU NEED BOTH.)
      5-Ferritin and % Saturation, TIBC and serum iron (all iron related labs)
      6-Adrenal- Cortisol levels (make sure it is done with saliva tests, not the one time blood test your doctor will do.)
      7-B-12 and Folate
      8-RBC Magnesium and Potassium (rather than serum), plus Calcium, Sodium, Glucose (part of Metabolic panel, though you’ll need RBC for above)
      9-Vitamin D (25-hydroxyvitamin D lab test)

My friend had tested many of these things prior to this year’s appointment, so she only requested the thyroid tests and guess what, just guess? She has Hashimoto’s Thyroiditis, her FT3 was a little low and her FT4 was a little high and she had a RT3 ratio of 12 and it should be at least 20. She has hypothyroidism and a RT3 issue and no one, not even the best doctor in our area, had ever checked this out and it would have been so simple. If she hadn’t been diligent, irritatingly persistent and had a doctor willing to indulge her requests she would never have known that her thyroid needs attention.

Of course, now the question is where does she go with her new found knowledge. It is a serous question to ponder. She does not want to self treat, so she is researching the “good thyroid” docs in our area and finding there aren’t very many, sadly she isn’t sure there are any, and this is the “progressive” state of Minnesota. She could go to her integrative medicine doctor but she was already told by that doctor that she knew nothing of reading a thyroid panel like the one my friend requested. I would suggest my functional medicine guy but he totally overlooked my RT3 ratio and when my TSH was suppressed by Armour he immediately lowered my dose which was unnecessary (when on NDT your TSH should be suppressed) , so I hardly want to refer someone to him.

It is a conundrum we all will face eventually. The best thing for all of us would be a revamping of our medical education and elimination of insurance driven medical practices but neither of those will ever happen (I feel government control is no better than insurance companies). We can take things in to our own hands as much as possible as Joe Mercola advocates with his “take control of your health”. Dr. Teitelbaum at End Fatigue had an interesting article on what to do if given a “serious diagnosis” but knowing the right thing for you when things go wrong is difficult at best.

There are many things that can go wrong with the human body. In this case, I think it comes down to the “thyroid madness” that Janie Bowthorpe refers to on her site and in her book “Stop the Thyroid Madness”. No one, not even elite doctors take the issue seriously and we patients have to stop following like lemmings and think for ourselves, do our research and be our own best advocate. If my friend weren’t her own best advocate she would still be in the dark about a treatable condition. I see this as a serious dereliction of duty on the part of medical doctors who have promised to “do no harm”. It is happening too often to too many people out there with hypothyroid symptoms. They are quite literally being led astray by a magical flute played by a medical school graduate referred to respectfully as Doctor. Never mind the last name is Pied Piper.