Down syndrome and hypothyroidism
I actually don't remember when Doris was diagnosed with hypothyroidism. She can't have been that old. Maybe a year. Well, in any case, we were told that it was common among people with Down syndrome. If I remember correctly, children with Down syndrome have a 30-fold increased risk and the risk increases with age. A little artificial thyroid hormone (levaxin) would straighten that thing out. Samples were taken every year and the dose of levaxin was adjusted accordingly. Samples have also been taken over the years for celiac disease, but suddenly it was concluded that it was no longer needed because it turned out that Doris did not have that gene. Celiac disease is apparently also common if you have Down syndrome. I myself had no idea what hypothyroidism meant or how it felt, but rather thought that it was nice that it was discovered and with a small tablet every day you got the values in place. Today, in my 50s, I realize that this is something that a lot of women my age have. Hair loss, weight gain, cold hands, depression, dryness and an indescribable fatigue. Now we were standing with a child who couldn't tell how she felt and since she always had an underfunctioning thyroid gland, we kind of noticed no difference in how she felt.
Every year we have found out that she is perfectly aligned with her values and that is good. At the same time, when I think about it, she couldn't have been well at all, she was like everyone else with Down syndrome: tired, unfocused, constipated and dry and we parents didn't think once about whether and how we could help her feel better better. We parents thought that everything was already done and we thought that she couldn't be better than this. Things are as they are and if we could do something differently we would certainly have received information about it from the habilitation or care.
The doctors were so firm about Doris' hypothyroidism and we felt safe with that. First like this In hindsight we blame ourselves, even though we shouldn't, because we simply didn't think twice.
We changed our diet a few years ago to a more anti-inflammation everyday for slightly different reasons. We had no idea at the time that our cleanup of the diet would affect us all so much. We cut out sugar, gluten and refined and weird junk food and replaced it with good fats like olive oil, avocado oil and ghee. In a very short time, all the bodies of the family responded positively in different ways. In Doris's case, this meant that the symptoms of hypothyroidism disappeared. Imagine that the diet would make such a big difference! So if you were consistently feeling better, why would you put in a lot of strange products that didn't add anything to the body but empty energy? It sounds logical, but do you dare to change the norm?
Since Doris will probably live dependent on others, it was important to have a medical certificate and we turned to a functional medicine doctor for help with this. When she heard that Doris had hypothyroidism, she immediately asked which variant it was. Here we stood as a question mark. We had not thought about variants of underfunctioning of the thyroid gland. The samples taken were TSH and T4. Redo and do right is what it's called, so we took new samples and now T3, S-TPO and S-Thgl were also taken. Now the functional medicine doctor was able to deduce that Doris had Hashimoto's. Hashimoto's is the most common cause of hypothyroidism so also in people with Down syndrome and it is an autoimmune disease. I think that all the women I know with the same diagnosis experience a difference before and after illness and many say that they feel like crap even though they got a "normal" TSH value with the help of medication.
This is where I got thoughtful. We know the difference only now. Doris must have felt bad despite medication and the improvement only came after the change in diet. We couldn't ask her, so only now does she herself see the change in her mood. Could it be that people with Down syndrome, who are diagnosed with hypothyroidism, have features that are linked to the chromosomal abnormality when it is actually Hashimoto's that is haunting? I wonder if it is not high time for a change in diagnosis.
If we as parents had known from the very beginning that Doris would have functioned so much better in the stomach, skin, clarity and memory if we had only taken care to keep her away from inflammation-triggering substances, we would have easily and leisurely looked over the entire diet from the beginning.
Doris was in a bubble and it burst with the right diet. Better late than never, but I really want to urge parents who have children with hypothyroidism to look into what is causing the hypothyroidism. Is it autoimmunity ie Hashimoto's? Doris' case shows that you at least have a chance to help so that the person in question feels better.
