Hi, I'm new in the neighborhood, or as we say in Mexico, la colonia!
This is a story of my 11 year old daughter. At the risk of giving too much information (or not enough), I've condensed her story into two versions, short story and novel. For those who would like the complete history please scroll down to the novel portion.
Here's the short story....
May 2012 - May 2017: Undiagnosed Cyclical Sickness
January 2017: Diagnosed with Hypothyroidism: Euthyrox 50mcg prescribed, labs still wonky
May 2017: Diagnosed with Lyme Disease: Cowden Protocol Treatment for Lyme disease, Cyclical symptoms improved!
September 2017: Switch to Armour, worried our "Holistic" Doctor has made an error in making the transition from Synthetic to Natural Thyroid as our daughter is now experiencing a rapid and pounding heart, and feeling winded after light physical activity.
Today: Please scroll down to my question at the bottom of the post.
Here's the novel version:
I have an 11 year old daughter who has suffered for 5 years with a strange cyclical sickness. Every 3-5 weeks she would start with an extremely sore throat, followed by nausea, vomiting and lethargia for 24 hours, followed by complete health in between. She was diagnosed with cyclical vomiting syndrome (CVS) but we continued the search for the real reason. After 15 specialists (and way too many lab tests) she was finally diagnosed with hypothyroidism in January due to an enlarged goiter. She started on 50mcg of Euthyrox (Levothyroxine) and has been continuing on this dose despite consistently slightly high Free T3 and slightly elevated TSH.
In my heart I knew the thyroid problem was an attack by some virus or bacteria on the gland because it just didn't make sense that such an otherwise healthy kid should be struck by CVS and Hypo at such an early age. So we continued the search for a diagnosis for the cyclical sickness. After seeing 7 more specialists (and way too many lab tests) she was finally diagnosed with Lyme Disease. Even with this diagnosis, only 1 of the 5 endocrinologists that we've seen admit that her thyroid problem could possibly be Acute Infectious Thyroiditis.
For the past 4 months her Lyme has been treated naturally using the Cowden Protocol accompanied by a completely healthy change in diet. Thankfully her Lyme symptoms have diminished and she is healing. I have been learning a lot about Lyme and I feel very comfortable with her treatment and progress. However I have not until today done a lot of research on hypothyroidism due to the fact that I have always believed that once the Lyme is dealt with, her thyroid will return to normal.
Unfortunately that's not the case. Her Free T3 has always been slightly high despite the medication. Her TSH has been up, normal, and up again. All other levels are in the normal range.
Free T3: 4.13 to 5.05pg/mL; (normal range is 1.5 - 4.1pg/mL)
TSH: Started at 37.8uUI/ml before meds, lowered to 0.68-1.69 during meds and now back up at 9.27 to 11.88 before Armour (normal range 0.4 - 5.5)
I was so happy to finally find a holistic endocinologist that prescribed Armour after her being on Euthyrox 50mcg for 9 months.
Here comes the problem... I completely trusted in this doctor and now we find ourselves in a distressing situation. Since starting Armour (plus full dose of previously prescribed Euthyrox) my daughter has been experiencing shortness of breath after climbing a flight of stairs, or running a little bit (same as when she first started on Euthyrox), and on top of that she has been having a very loud, rapid, thumping heartbeat, mostly when doing moderate exercise, but sometimes while sitting still.
What should we do? I've been in constant contact with our Endo, but she has been telling me to wait for things to normalize. Finally she said we can 1/2 the dose of Euthyrox. After doing some research today on my own I find that the dose my daughter was given was 4 times what she should have had. Here's the doses as per the Doc:
First 2 weeks: Stay on 50mcg Euthyrox + 1.5 grains Armour
3 days: Reduce to 25mcg Euthyrox + 1.5 grains Armour
Next week: 25mcg Euthyrox + 3 grains Armour
From what I've been reading, her normal dose of 50mcg Euthyrox is nearly equivalent to 1/2 grain of Armour. According to my calculations my daughter took quadruple the dose of meds! And the doctor has prescribed things completely backwards and unconservatively.
I plan to take her first thing in the morning to do complete thyroid blood tests to see what's really going on. I also plan to continue with 50mcg Euthyrox, and completely discontinue the Armour for the time being until we can get our hands on 1/2 grain and get some answers as to how to transition from Levothyroxine to Armour.
In the meantime, it would be so nice if one of you kind souls could chime in on what's the best course of action here. I really appreciate anyone who can offer some support or words of wisdom.