Thyroid Follow Up

The gains we had with starting treatment for hypothyroidism have slowly waned. Since he is only on a 1/4 grain, which is very low….I talked to my son’s doctor about increasing the dose. She agreed to raise to 1/2 grain. This is also still conservative.

One of the indicators I had to imply he needed an increase was that he wasn’t sleeping well at night again. This was a problem that went away when we started the 1/4 grain. He couldn’t fall asleep and if he somehow made it asleep by midnight, he was up at 3am for several hours.  He is a rather tricky fellow to figure out since he doesn’t have a lot of the normal symptoms you see in hypothyroidism. Rather what he has is a lot of adrenal stress from the low thyroid and not so great labs.

We go back for our follow-up this week so we can see his newest labs on 1/2 grain and also check the progress of the LDN therapy and antivirals. (fingers crossed those antibodies are gone and that CBC normalized)

What is nice to see is that he doesn’t need all that theanine for anxiety now. He reports he isn’t having anxiety now that he’s on thyroid medicine. I’ve seen this with my other child and many others. Sometimes the drain of low thyroid hormones on the adrenal glands is tremendous. I do also suspect methylfolate or P5P as contributors to a re-appearance in anxiety so we have discontinued that temporarily to see.

Wish us luck at our appointment! Fingers crossed we can stop antivirals….maybe

Treating hypothyroidism

I’ve suspected for several years that we might be dealing with subclinical hypothyroidism. A few symptoms, blood work and family history have led me to think this needs to be addressed.

Since we are working with a functional MD that approaches children’s health from a different viewpoint, we have been addressing many things in the past 6-8 months. After discussing my son’s symptoms, his labs etc she agreed that we should try some dessicated thyroid medication.

His TSH has generally been running at 2.5 or higher since the first time anyone bothered to test it, so probably age 9.

This has never improved with adrenal support in his case which is reflective of what I see in our family. (I and my other adult child are also hypothyroid) Mercury is not the only cause for thyroid problems so in some of us despite chelation we may still need this treated.

I have an entire chapter in my book about thyroid function because it’s something I find tends to be overlooked and it’s really common these days.

Some of his symptoms that indicate his thyroid hormones are too low:

  • dandruff that isn’t responding to typical means of treatment
  • fatigue, hard to get going in the morning but can’t sleep at night
  • occasional belching, indigestion regardless of the food
  • anxiety even on adrenal support
  • gaining weight faster that what is considered expected for their age
  • brittle nails
  • brain fog
  • short-term memory issues
  • elevated TSH above 1.5 (his is 2.56)
  • free T3 that is not in the upper third of the range (*do check that the lab is using ranges for your child’s age because often they don’t. My tip-off was the range used for my son was the same one they used on my labs. A teen should have higher FT3 than someone my age. I like LabCorps Pediatric reference ranges)
  • thyroid antibodies: he has elevated TgAb (anti-thyroglobulin antibodies)  which means autoimmune hypothyroid.

Key things I’ve learned with my own thyroid issue and this is child #2 with thyroid issues.

  • When one is autoimmune hypothyroid, often the labs will be less reliable versus how you actually feel and it should be treated with thyroid medication.
  • Just because the hormone is circulating in your blood doesn’t always means it’s getting into your cells where you need it either. Especially if your immune system is destroying it or the thyroid cells. I’ve often wondered how much of the thyroid levels measured in blood are the result of destroyed cells releasing it.
  • If it quacks like a duck..it’s usually a duck so if you have the majority of symptoms, you really need to investigate this.

We have been addressing iron and vitamin D for 8 months now and his thyroid labs have not actually improved.  He’s also been on the antivirals and immune support for two and half months without any noticeable improvements. I realize Rome was not built in a day but that doesn’t mean you should have to feel lousy until and unless your deficiencies and immune issues are resolved.

So we began 1/4 grain and he reported being nauseous with a headache all day. I recognize that as adrenal fatigue. I cut his dose to 1/8 grain for a few days while I waited for the increase in adrenal cortex glandular to do its thing. Then we were able to give the 1/4 grain without any issues.

He is sleeping better. Time will tell what else improves…

My reflections on sensory…

Some days nothing can stop us! It’s going well. Other days like this one, I feel defeated that I have not been able to find relief for my son’s tactile defensiveness. It’s a puzzle that I keep going over in my head while thinking, “I have to be missing something”.

So I’ve decided to do more detective work and start putting together what we know and charting it to look for patterns. He has developed a rating scale for his sensory and each day I write down his rating on a calendar. I include notes regarding if he were home all day, went out, ate something/someplace that isn’t usual etc.

Maybe,….just maybe I’ll see a pattern.

The most perplexing is that some children have sensory and it’s just a constant thing each day. In his case, he has it every day but how bad it is changes from day-to-day.

What I’ve narrowed down is that he has had periods of time in the past where it was markedly better but that hasn’t been for a while. He says it is better when he’s at camp, which is actually way out in the country near nothing. He also finds it better when we go out of town. It’s not gone mind you, but just less severe.

The primary sensory issues are really just tactile in nature. He has a very sensitive head to the point where hair and face washing is extremely uncomfortable. He’s been able to get used to brushing his teeth but there is a lot of gagging surrounding that.

This doc we’ve been working with thought food allergies were behind it because he seems to have a heightened sensory system where he can smell, hear things other people don’t notice.  Bright lights bother him and so does the heat. Some of this is adrenal related in my opinion but anyway, that these were the reason the doc suggested food intolerance. However, four months off those foods…it’s not foods causing it. Plus we found out the food testing that was done was meaningless anyway.   (I detail that in this post)

I’ve been over the “mold” exposure theory, environmental allergies, etc and he just doesn’t have the symptoms for any of that.

The autoimmunity and viral issue….seems sensory would be improving then because he’s been on things to treat that since March and it’s almost June.

So the final though from the doc was to take him back to an occupational therapist for sensory disorders. It’s hard to get a 14-year-old to want to go to anymore therapy.   He’s been through so many of types of therapy already and he reached an age/point where he began refusing several years ago. But trust me it’s not off the table if they can actually help him but it won’t be easy to get compliance and find a properly trained therapist.

Going over my mental list of what I’ve tried:

  • chelation: yes, doing that, approaching 200 rounds.
  • antivirals: done it and  repeating it again now
  • antibacterial: done it, many times
  • antifungal: done it and he has no antibodies to yeast or symptoms at this point
  • antiparasitic: done it every year since he was like 5, no change
  • he has no gut issues so not thinking it’s dysbiosis
  • food allergy elimination diets: gluten free, dairy free, gluten/dairy/egg free diet
  • homeopathy: done it, did nothing for sensory
  • Wilbarger protocol: terrible experience for all including him, discontinued.
  • sensory diet: done it, doing it, but that doesn’t actually “fix” the issue, it’s more a coping mechanism. Which means the electric toothbrush, trampoline, weight blanket etc and so on.
  • primitive reflex integration/visual motor therapy

So I’m sort of at a crossroads because nothing we have done to date lets him wash his own head or face.

I don’t think he’s hardwired this way because if that were true, the condition would not change from day-to-day.  In our early days of chelation he had fluctuations with sensory and large improvements with it but we reached a point where I don’t see it improve anymore. Duly noting a DMSA/ALA round a few months back he did report it was worse so it’s possible some metals could still be a factor. But then again, he reports it’s worse some days and he isn’t on a round at all. It’s possible it wasn’t the round at all, and it was just one of his bad days.

Ahhh! So frustrating doing your own research because no one out there knows. Guess we will see how the journal log of symptoms goes.