Abby's Healing

As has so often happened in Abbie’s journey, divine circumstances disguised as a chance meeting introduced us to a topic that has radically altered our course. In September of this year (2007) Dr. Tennant was teaching a course attended by Dr. Mark Starr, who is the author of a book called Type 2 Hypothyroidism.

The premise of the book is that like diabetes there are two types of hypothyroidism, with Type I showing up on lab tests, while Type 2 does not. Imagine if they only treated diabetes that showed up on lab tests! Well, that has been what is happening with hypothyroidism since the availability of lab tests for TSH.

After meeting Dr. Starr, Dr. Tennant phoned me to discuss the possibility that Abbie could be afflicted with Type 2. Given her consistently low body temperature, and cold extremities, it seemed like a viable idea. Dr. Tennant introduced me to a new term that day, “mucin”. He said he was almost sure Abbie was hypothyroidic given her mucinous appearance. I honestly had no idea what that meant. Mucin is like mucous, but thicker. It infiltrates the connective tissue of hypothyroidic people, making them look puffy – it is also called “myxedema”, which is non-pitting swelling. This can be especially apparent above the eyes, at the jowls, and on the hands and feet. This did seem to fit with Abbie, so my interest was piqued.

As soon as I read Dr. Starr’s book , I was convinced that Abbie was hypothyroidic, but also realized that I’d too easily dismissed something else Dr. Tennant had mentioned. There is a strong hereditary aspect to Type 2 hypothyroidism, with it being passed down along maternal lines. This route of passage is because Type 2 deals with the mitochondria in the cells, which are only passed from the mother. I’d assumed Abbie had been pushed into hypothyroidism by her injury, since I obviously wasn’t afflicted with it…or was I? I did the “pinch test” to confirm my growing suspicions. Pinch the skin on your outer upper arm. You should be able to get skin-to-skin contact. I had over an inch of flesh between my fingers. Again, mucin is the culprit, and this was a give-away sign that I was also Type 2. In the book I saw almost my entire medical history described, from my earliest memories of hospitalization for recurrent kidney infections, to always being cold (not convenient when in the Army), to my eyes that are growing puffier with age. In thinking about Abbie’s medical history prior to her injury, I realized that she had been hypothyroidic before she was ever injured. In looking at family photo albums I could clearly trace the evidence of hypothyroidism in my mother and her mother. I can now see it in my boys.

As I thought about this tears came to my eyes…I’ve long thought that Abbie has undertaken this journey partially to save her family. I wasn’t sure in what way – spiritually, relationally….but I never imagined, physically. If she had not been injured, we never would have learned about this, and I believe this new knowledge will change the course of our lives, both medically and otherwise.

I hesitate to give bullet points from the book, because I am afraid that like I did initially, you will decide it doesn’t apply to you. Dr. Starr’s book is about $15, available at Amazon or his site (www.type2hypothyroidism.com) and I urge to you buy with as much intensity as I can muster. If you don’t think it describes you, I assure you that you will see someone in your family. It is more prevalent than we can even measure at this point. It is important to note that the same condition, Type 2, can present totally different symptoms in people, so don’t think that just because you are not gaining weight and losing hair that you don’t have it.

The first, best assessment is to check your basal body temperature before rising in the morning. Put the thermometer under your arm. A normal temp will be 97.8-98.2. 97.0 or below indicates a definite need for treatment. You can also do the pinch test I described above. The list of other symptoms is so long and inclusive that they each need a narrative – so again, buy the book…please!!

Abbie’s treatment is Armour Thyroid, which is dessicated (dried) pork thyroid and Iodoral (an iodine/potassium supplement). One of our doctors called Armour the “old-fashioned” thyroid medication, because it was widely used before Synthroid, a synthetic form of T4 became available. Important to note is that Synthroid is a “grandfathered” drug, which came on the market prior to efficacy studies being required. It has never actually been proven to effectively treat hypothyroidism, and has had to undergo several formulation adjustments through the years. As our neurodevelopmentalist told us recently, however, although it is nowhere near as good as Armour, it is definitely better than nothing. Armour contains both T4 and T3, the active form of thyroid. In addition, because it is natural it contains the whole host of thyroid substances, some of which we may not even know about yet. Having the “complete package” results in much better treatment, especially in the case of Type 2, for which Synthroid is ineffective.

Abbie started out on “1/2 grain”, which is about 30mg. This brought her temperature up to normal and instigated a whole range of very positive changes that I will detail later. After about a month I noticed that her temperature began to slip again, so we increased her dosage to _ grain. We just have to make sure her temperature does not rise above 98.2 and that her heart rate does not rise above normal, since these would both indicate the dosage is too high. Verbal patients can communicate other symptoms to help regulate dosage, but since right now Abbie is non-verbal, we rely on the thermometer and the pulse-ox machine.

One cause, or complicator of Type 2 is iodine deficiency. There are many causes for this outlined in Dr. Starr’s book. To remedy this, we give the Iodoral, which is a tablet form of something called “Lugol’s solution” that was developed by a physician to treat iodine deficiency. I won’t go into too much detail, and rely on your reading Dr. Starr’s book, but just know that iodized salt is simply not the answer. Also know that chlorine, fluorine, and bromine are in the same chemical family as iodine, halogen. This means they compete with iodine at iodine receptor sites which are found all over the body. Competition means that they can take the place of iodine, which explains why the chlorine in our water (and fluoride if you have it in your water), and the toxin bromine which replaced iodine in all bread products in the 1980s reduce iodine in the body and depress thyroid function. I highly recommend Iodine: Why You Need It, Why You Can’t Live Without It by David Brownstein, MD. This book describes the synergistic relationship between thyroid and iodine. It also has very helpful advice in easing the detox process as the body begins to kick out the bromine.

I have started taking Iodoral myself, and can confirm that a detox process that is not enjoyable does take place. Upping Vitamin C intake (to between 3 and 10 grams per day), increasing intake of unprocessed sea salt, and ingesting some magnesium helps lessen the discomfort, and have used these methods with Abbie, too. I can also say, however, that my energy levels have certainly increased, while the bags under my eyes are shrinking. I am planning on starting Armour Thyroid very soon.

The pharmacist who filled Abbie’s first prescription for Armour said, “You may start to see changes very quickly.” “Ha!” I thought, “He doesn’t know what ‘quickly’ means to us now…we measure in months, not days.”

Well, turns out he did know what he was talking about. Within one week of starting treatment, Abbie’s oxygen needs fell dramatically. Our usage of supplemental oxygen has been creeping up for about a year now. Slowly enough that we didn’t become alarmed, but consistently enough that by this September it was just assumed that she would need it all night, and perhaps at some points each day. Off oxygen she normally satted 95-98. Suddenly, she was satting 100, asleep on her tummy. What??? She was also sleeping all night without oxygen – how wonderful!! It makes sense when you think that her lungs are surrounded by connective tissues that once infiltrated with mucin constricted her lungs and lowered their capacity.

Now that we are a month into this, I must say it has been a bit of a see-saw. There is a lot of mucin leaving her body, and it has to get out somehow. This means that sometimes she has more secretions than she normally does, but they are all clear with no sign of infection. Sometimes we are suctioning more than normal, and sometimes she needs oxygen to get through particularly junky times, but her overall needs are greatly improved!

The second week of treatment we noticed her body starting to change shape. Her face was thinning out, as were her belly and thighs. The G-tube button that had been getting tight was now loose and spinning freely. Her bottom lip also began to shrink, which helped it stay in a more proper, upright position, cutting down on drooling. These changes were apparent even to a pediatrician who had seen Abbie 4 weeks before. She was concerned that Abbie was losing weight, but in checking the chart found that she had actually gained half a pound. Dr. Tennant mentioned that she may be converting some of her “padding” into muscle mass.

The third week of treatment brought long-awaited joy…Abbie’s body, particularly her legs, loosened up beautifully. For a very long time they have been externally rotated (knees pointing out to each side), with thighs pretty much glued together to the knees and then lower legs veering out. Her knees did bend, but not very far and not very easily. Now, exercising her feels like a dance!! We are able to do leg exercises that we’ve not been able to do well in over two years, and she is doing them more easily then ever before. It is truly astounding. Her whole body is softer and more properly aligned, and I can’t help but think that this must make her much more comfortable.

The fourth week of treatment brought exciting cognitive changes, or at least changes in the ability to express her cognition. Her neurodevelopmentalist saw her towards the end of the fourth week for the first time in 6 months. She was thrilled to say the least. Part of her new program for Abbie includes teaching her to read. We tried this about 18 months ago with no success, partially because of very limited vision. While waiting for the prescribed reading program to arrive (www.loveandlearning.com kit #1), I pulled out the flashcards I made during our first attempt. Her vision is so much better now – I can even elicit tracking most of the time, a HUGE improvement. But, what surprised me is that by the third day of working through the first five words she was able to correctly identify some of them using her switch. I was in disbelief at first, but she has also done it for her nurses, and today did it in front of her case managers. Wow!! This expression of her cognition has really challenged me to keep her stimulated, keep her learning, and recognize again just how much potential is locked up inside her approaching-freedom body. She is also identifying letters as of today, and her responses to questions is now so quick that she sometimes anticipates the end of the question and answers before I can get the whole thing out. She has so much more energy, and now looks forward to working hard. As we put her on the massage table at 7am this morning, she grinned as we began her program. What a joy! I must admit that it is so motivating to work hard when you see progress. For so long we have been trudging along, persevering because we love her and we trust God, although sometimes our hearts grew heavy. This now feels like walking on clouds.

Dr. Tennant thinks that clearing all the mucin out of her body will take about six months. What an exciting adventure! I wake up every morning anxious to see what the day will bring. I confess that during the past few years that hasn’t always been the case, and we’ve gone through periods where I thought I may never feel that way again.

I pray that you will get Dr. Starr’s book, find a provider who is comfortable prescribing Armour (see www.armourthyroid.com for a provider list) and join this adventure with us if Type 2 is also affecting your family. I so want every other mother of an injured child to experience the joy and hope that is now flourishing in my heart.

— November 2007