The following Guest Blog Post is written by Jill, who has a B.S. in Combined Sciences and is the mother six, including 22-month-old Moriah, a thyroid and adrenal patient who has Down syndrome.
**********
I had gone to several doctors to investigate thyroid treatment for our infant daughter Moriah, who was born with Down syndrome (Ds). From my research, I knew thyroid issues to be quite common in those with Ds, but also frequently overlooked since many of the characteristics associated with Ds are the same as those seen in congenital hypothyroidism.
Also, because many doctors do not order all the appropriate labwork but rely too heavily on the TSH, many of these children remain untreated.
I was determined not to fail my girl on thyroid, so imagine my joy to finally find a doctor willing to prescribe NDT. I happily filled our prescription for 15 mg/day of natural desiccated thyroid and scheduled a follow-up appointment for 6 weeks. What I did not know at the time is that one cannot remain on a low dose of natural desiccated thyroid. (Patient Mistake #1)
The solution to being “a little” hypothyroid is not to take “a little” NDT. As I learned from a new friend and confirmed on the STTM website, that will cause you to become even more hypothyroid than you were to begin with due to the suppression of the feedback loop.
And that is exactly what happened to Moriah.
My friend clued me in, and I felt sick to my stomach, realizing this doctor must not be aware of that since she had not mentioned anything about ever raising Moriah’s dose. Long story short, even with labwork showing a big drop in the free T3, along with multiple new-onset hypothyroid symptoms, the doctor wanted to keep Moriah on just 15 mg/day. Why? Because, she stated “The TSH is by far the most important of the thyroid levels, and her TSH is really good!”
Ugh!
Sadly, the mistaken notion about how to dose NDT is all too common, even among caring, integrative doctors such as the one I had. I read many stories of doctors prescribing “low dose” NDT or adding “just a little” to be “on the safe side” and treat “borderline” hypothyroidism. But this is not how it works with NDT! This “treatment” only makes things worse! There is even pediatric dosing information on the NDT websites, but it is meaningless to a doctor who doses according to the TSH.
What a tragedy that these caring doctors are actually making their young patients even sicker!
Thankfully, we are now working with a new doctor who understands the necessity of evaluating symptoms and all the labwork and understands that, like adults, children cannot be left on “low dose” NDT. I wish there were more doctors like her.
The STTM website has been a Godsend, and I refer everyone to it, especially to check out “Mistakes Patients Make“” so they do not make the same one I did.
********
— See why going by the TSH is the WORST way to diagnose or treat hypothyroidism, here.
— For adults, here’s what we have learned about using Natural Desiccated Thyroid.
— Having what seem like bad reactions to NDT? Learn why. It’s not about NDT, but what it’s revealing!
— Have you Liked the STTM Facebook page?? Come on over for daily inspiration and information based on shared patient experiences!
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
Write a new comment below
22 Responses to ““A Little Natural Desiccated Thyroid” if you’re “A Little Hypothyroid? Don’t Make the Same Mistake We Did!”
Jill2
So does hypo in the mother cause retardation/developmental problems? Is this only untreated hypo? What about hypo being treated with NDT or compounded T3? Any info/resources on this? THANK YOU.
Janie Bowthorpe
Jill2, I don’t think that the author of this Guest Post (also named Jill) is implying that her daughter’s Down Syndrome is caused by Mom being hypo. But research does show that many Down Syndrome children also happen to “have” hypothyroidism. There’s a difference there. I’m thinking you could google Down Syndrome and Hypothyroidism to learn more.
Sallen
Hello My Doc just change me from Levothyroxine 100 to Armour 60. I got the Armour tablets and they are hard, should I chew them?
Sallen
My doc change me from levothyroxine 100 to armour 60. I am not sure if I still have to chew the armour pill or not.
Karyn
Jane.
We currently are in a Spanish speaking country and need to get this lab work done for our ten yos with DS. Is it possible to get the list of recommended labs in Spanish and are there other materials I can give the Spanish speaking doc. It is costly to bring books into this country due to very high customs charges. Is it possible to get them via email? Thanks so very much
Janie Bowthorpe
Karyn, see if someone can translate this: https://stopthethyroidmadness.com/recommended-labwork You know there’s a Spanish edition of the STTM book, right??? Any bookstore over there can order it via Ingram.
Jill2
Just bring the list in in English. When i lived in a Spanish speaking country they had no problem translating it. The biochemical names are nearly identical.
iwuz119
I could not have been happier to get on Armour. However, I started having chest pains on 30mg. When my doctor increased me to 60mg I has SEVERE deep chest pains. I only took it two days! I had never experienced anything like it before. I do not have a heart condition either. I’m still having vague chest pain that I can’t seem to get past as yet. It’s been about 20 days since stopping it too. It may not be completely out of my system yet. I don’t know.
How will you know if Moriah has a problem with NDT?
Janie Bowthorpe
iwuz, that wasn’t the fault of Armour. It was simply revealing one or both of two issues you need to look at! i.e. you were probably having adrenaline surges due to either low iron or low cortisol…or both. Go here: https://stopthehthyroidmadness.com/ndt-doesnt-work-for-me
Jill
That is a good question, since a child so young is unable to tell you. It is important to know the symptoms of hypo and hyper so you can carefully monitor a child and any new symptoms that develop. Taking temps is helpful too, and I keep a care journal for Moriah, which is full of notes and observations. We have run into a few issues (see above comments) not because of the Armour itself, but primarily due to the fact that cortisol was never evaluated prior to beginning NDT, despite Moriah’s history indicating adrenal issues. I wish I knew then what I know now.
Julie
I am wanting to join the FTPO parents of children group on facebook and it is only showing a group for Autism. Any suggestions? I have a 10 year old daughter who has been diagnosed with Hashimoto Hypothyroidism. She also has severe food allergies. We have seen an integrative pediatrician who is monitoring her carefully but I am still baffled as to why this has come up so suddenly. I would love to be a part of a discussion group on this topic.
Janie Bowthorpe
Julie, here’s the group: https://www.facebook.com/groups/FTPOCHILDRENS/ It’s not just for autism.
Jill
Mary Beth, were labs other than the TSH run? Because the conversion issues often seen in our kids are not picked up on the standards tests of TSH and T4. There is a great explanation here. http://www.downsyndrometreatment.net/thyroid.html Dr. Peirson is treating Moriah, and our kids are her specialty. She skypes too, and I highly recommend her.
Leslie
Lisa, my daughter now age 5 who has Down syndrome was diagnosed hypothyroid at age three months. We were on Levothyroxine for her first three years. That last year, she really fell back developmentally and growth and health. At age 3, I discovered Stop the Thyroid Madness and found out we weren’t even testing or treating her active thyroid hormone levels. I had to fire her endo and go back to our pedi. He finally ran the labs as recommended in STTM. She was terribly anemic. We started her treatment for that and also switched her medication from the Levothyroxine to Armour. She began having allergic reactions to the food dyes in the medicines. Within the first month, she grew a whole inch. The same as the previous year put together. Within days, her fine motor skills soared. She began putting on her tennis shoes completely independent. Her speech took off. Her hole in her heart has since resolved. Her frequency of strep infections has gone way down. I have been very pleased. We battled the low tsh and her doc reduced her dose. She got terribly sick and he bumped it back up. We have had some periods where she is more hypo than other times, but I feel fairly confident that we are making some headway and preserving function.
Mary Beth
I have a child with Ds who has been taken off thyroid meds based on TSH being ok/borderline. I have Hashimoto’s myself and
am just discovering iodine/iodine to help improve thyroid function. My doctor does not want to hear about natural thyroid meds, (I take levoxyl). But am desperate to find a good practictioner, who would really help me and my son. Any suggestions? Also I’d love to hear what is working for Moriah. Thanks!
Leanne
The STTM groups can help you find a great doctor with patient reviews and everything. They go by state, so you might have to drive further if you live in a smaller town, but, truly, it’s worth the drive.
(See https://stopthethyroidmadness.com/how-to-find-a-good-doc and the first one on that list takes you to the list by state)
Jill
Great question, Lisa. Untreated hypothyroidism causes irreversible mental retardation and is primary to other health problems, so appropriate early treatment is absolutely beneficial. Within weeks of initially going on Armour, Moriah grew a whopping 3/4″ which was thrilling, since that is one area I was hoping to see improvement. We are still working through other issues, however. Much of what should have been sorted our prior to starting meds in the first place (i.e. ALL the proper labwork as well as saliva cortisol testing, given Moriah’s case history) was not, and we have since discovered elevated reverse T3 and low cortisol, both of which complicate treatment and prevent a quick fix. We are still working through getting her free t3 back up from the drop she sustained as well as improving her cortisol level.
Lisa Parker
I would be interested to know if proper Thyroid hormone replacement has helped Moriah’s Down’s syndrome developmentally. You tell your story that you have found a proper doctor to help, but we don’t know the ending. Is it too soon to say? I have long thought that these children could be leaps and bounds forward if they had the proper thyroid and adrenal replacement. Congratulations on looking outside the box to help your child! But we would like to know it helped her!
John V. Billings MS Advanced Psychiatric Nurse
I think it is important to realize that any medical doctor that suppresses the TSH (except for cancer doctors treating thyroid cancer) is putting their medical practice in jeopardy. It is like Galileo saying that the earth was not the center of the universe. By saying so he was at risk of being excommunicated. However, an Anti-Aging medical doctor has been trained to treat low T3, and even though they are going against the AMA standard for treating thyroid, Anti-Aging doctors have enough clout with research to back them up to withstand the AMA (i.e. Kent Holtorf M.D.)
Jill
The standards are desperate for revision, aren’t they? Structured as is, they keep patients hypo on NDT, which is especially tragic in children whose brains are still developing.
k
Think you should look into gluten free diet benefits, your child might not even need any tablets for thyroid.
After i srarted gluten free my thyroid levels are fine again, and this happened really fast, only few days orweek,mentioning i was previously prescribed low level thyroid medication. There are so many benefits of gluten free diet please check out on internet!
Jill
Yes, thanks. I know many families have found GF beneficial for their little ones with Ds. Moriah has always been GF.