An Open Letter to A Hospital

by the Fish Family

We wrote this letter to the hospital that my brother and his twin sister were born in. There were several things which we were not told about and did not know, that we should have known, while my brother was under their care. We wrote this letter to them in hopes that it will help their care of future children with Down Syndrome.

Dear ____________,
We are hoping that this letter will encourage you in your treatment and in your dealings with future infants with ds and how hypothyroidism affects them. My son, of course, is the main example in this letter as we would like to share with you what we have learned about hypothyroidism. There are several problems that my son had that we have come to believe were all related to hypothyroidism.

For starters, I would like to include several definitions of hypothyroidism in infants that we found online. I have bold-typed the things that my son had (or has). The first is from http://thyroid.about.com/cs/childrenseniors/a/hypothyroidkids.htm and states,

"There are different types of hypothyroidism in infants/children,
methods for detection and treatment, and why it is crucial that your
newborn be tested within the first few days of birth. In some extremely
rare instances, hospital tests can be faulty. Some symptoms to watch
for if you suspect a faulty test:
Puffy face, swollen tongue
Hoarse cry
Cold extremities, mottled skin
Low muscle tone (floppy, no strength)
Poor feeding
Thick coarse hair that goes low on the forehead
Large fontanel (soft spot)
Prolonged jaundice
Herniated bellybutton
Lethargic (lack of energy, sleeps most of the time, appears tired even
when awake)
Persistent constipation, bloated or full to the touch
Little to no growth"

Here is another definition from http://health.yahoo.com/ency/healthwise/te2453
"In the first few months of life, symptoms include poor appetite and choking while nursing, failure to gain weight and length, constipation, jaundice, breathing difficulties, a hoarse cry, and sluggishness. The baby's abdomen may be enlarged. His or her skin may feel cold and look mottled, and the genitals, hands, and feet may be swollen.

Later signs include dry, scaly skin, poor growth of hair and nails, and a delay in the appearance of teeth. The child's growth may be stunted. His or her fingers and toes may be shorter than those of a healthy child. The child's head may look puffy and large, and the tongue may look swollen. Infants are treated with synthetic thyroid hormone replacement. An infant treated for hypothyroidism within the first month of life grows and develops normally. Treatment must be continued for life."

Now a few specifics that we dealt with in my son: his TSH level, his
lack of weight gain, lack of growth, cold extremities, symptoms of GERD
and constipation.

A. High TSH Levels
When my son had his blood work done in the NICU we were told that his TSH levels were fine. At the time, this info was foreign to us so we did not question the diagnosis. We were dealing with other issues (such as twins, ds and having to be away from our home and each other). All I knew at the time was that there was a remote possibility
that we would have to deal with hypothyroidism at a later date. In September 2005 we moved on to Dr. ________ as my son's primary care giver. We had heard that he specialized in down syndrome and was close enough for us to go to on a regular basis. At our first visit, blood work was ordered to check the thyroid. A few days later we received Dr. _______ phone call telling us that my son was borderline hypothyroid and that he would like to start him on Synthroid as soon as possible. His level at this point was 6.26. Of course, we asked for a little bit of time to research it out. As we began to scour the internet, we were shocked at what we found out.

There have been several studies done to show that TSH levels above 2.5 show retarded growth, along with other things. The list of symptoms were so close to many of the issues we dealt with while at the hospital that we wanted to find out more. So, sometime in the month of October or November 2005 we returned to the hospital to get copies of my son's lab work. We read in amazement that his TSH levels were at 8.44 in the NICU - this is when we had been told that everything was fine. The article entitled Growth Studies in Infants and Children With Down's Syndrome and Elevated Levels of Thyrotropin explains some of the delayed or complete lack of growth issues that hypothyroidism presents. According to the hospital's lab sheet, the acceptable TSH range is 0.4 to 4.67. My son's TSH was at 8.44 and we were told that his TSH was fine and that there was no problem there.

B. Lack of Weight Gain
This leads me to our second point - lack of weight gain. I think you will recall that the biggest issue we dealt with while in the NICU and during the visits to the clinic in the months to follow was the fact that my son was not gaining weight. I remember spending much time trying to convince the staff at the hospital that breastmilk was good enough, if not better, than the formula that we were being told we should give my son. We were being told that my milk was lacking and that we should supplement with formula to get him to fatten up. I remember bringing in charts and information that I obtained from a lactation consultant to "prove" that a mother's milk can sustain an infant. There were reports and charts to show that the mother's hindmilk was very high in fat. We discussed using his twin to bring the milk in and then letting him nurse second so as to benefit from this fatter milk. Looking back, I wonder why there was no mentioning of hypothyroidism at this point. One of the most obvious signs of hypothyroidism in infants is a lack of weight gain yet, we spent countless hours debating breastmilk versus formula.

C. Lack of Growth
This goes along with the above point. He was a skinny and scrawny looking infant for months on end! When we were out in public people would even ask what was wrong with him. Looking back at his pictures, he does look very skinny but, that is because he was hypothyroid. This should have been mentioned and could have been dealt with the first week of his life.

D. Cold Extremities
On one visit, I remember asking about Osiyyah's cold hands and feet. I assumed it was just because he was a skinny little infant. Or, maybe it was just hereditary. But, we have since learned that this is just another symptom of hypothyroidism.

E. GERD
GERD was another issue that we discussed in detail while coming to the clinic. My son spit up constantly and quite a bit (much more than some of our other children). We researched and learned about GERD. I remember coming to the clinic and discussing plans of action to help his GERD. Maybe if we could keep more food in him, he would begin to grow was the hope. We learned about keeping him upright after feedings, about feeding him more often and feeding smaller amounts. I believe that all of this was to no avail also considering the fact that he was hypothyroid. If his hypothyroidism had been noted and dealt with, I believe his severe GERD symptoms would have subsided since as soon as we started to deal with his hypothyroidism, his spitting up stopped.

Please see the following links:
Gastroparesis affects children and adults:
http://digestivedistress.com/what_is_GP.html

- secondary cause of gastroparesis: hypothyroidism
http://digestivedistress.com/who_gets_GP.html

- Motility disorders, one of which is gastroparesis, are common in
children:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11826807&query_hl=3&ito
ol=pubmed_docsum

F. Constipation
This was also a big issue at the time. My son's bowel movements were very sporadic. He would go 3 to 6 days without a movement. We thought that maybe he wasn't getting enough liquid in - it was summertime and hot out. But, again this should have been another warning sign that his thyroid was not functioning properly.

G. Mottled Skin Appearance
I remember asking about his skin color. He was very white looking and had a mottled appearance. We were told that this was just "normal" for kids with down syndrome. Again, we believe it was just another sign of a thyroid that was not normal.

I would like to say at this point that we were (and still are) very thankful for all that did happen while we were at the Hospital. We do believe that God worked out many details for us regarding the delivery of our twins. We are just very concerned that my son's hypothyroidism went unnoticed. We feel that he "lost ground" so to speak because of this. Please consider these things and use them as a reminder to watch out for the next infant with ds that comes through your NICU and clinic.

You might also note a study done in March 2005 entitled, "The effect of thyroxine treatment started in the neonatal period on development and growth of two years old Down syndrome children: a randomized clinical trial." These researchers concluded with this statement, "The data of our study provide evidence to support the hypothesis that thyroxine treatment may improve development and growth of young Down syndrome children. Thyroxine treatment should be considered in Down syndrome neonates, to maximize their early development and growth."

Thus far, we have been able to avoid putting my son on Synthroid. We have discovered there are dietary and nutritional things that can be done for someone with DS to change their hypothyroidism. Within the first week after we changed my son's diet he improved tremendously. He started gaining weight extremely well, his spitting up slowed down and stopped for the most part. In a matter of 3 months he went from the 5th percentile (on a DS chart) to the 25th percentile (on a DS chart). Also, his thyroid went down almost a whole number (from 6.26 to 5.8). We now have a medical doctor (Dr. _______) who went from wanting to put my son on Synthroid to being completely content with where he is at and how he is "taking-off" in growth, activity and all areas. We do not believe that every Down infant should be started on Synthroid at birth because we believe that there are some detrimental side effects to a lifetime of prescription drug use. We have found a natural and dietary way that is working for now. In the following paragraphs, we will explain what we have done.

A. Avoid All Goitrogenic Foods
A goitrogen is a food that suppresses thyroid function. My son (and myself, since he still nurses) are following this diet plan. As much as possible, we avoid all goitrogens and include in as many foods that are known to actually help increase thyroid production.

B. Have Added in Coconut Oil on a Daily Basis
There are many testimonials and info that support the idea that coconut oil helps with hypothyroid problems. Just check online to find out more.

C. Are Giving Him NutriVene Supplements
This is a controversial issue with some people but we have found that the research in favor of TNI (Targeted Nutritional Intervention) is very overwhelming. There is much to be learned by studying the biochemistry make-up of the Down individual and what vitamins, minerals and amino acids their bodies typically lack. By giving supplementation, it appears that some processes can be slowed down (such as oxidative stress and premature cell death) and that other problems can be corrected (such as hypothyroidism and its relation to low zinc levels
that many ds people have).

D. Monitoring His Blood for Zinc and Selenium Levels.
There have been several studies done to show that there is a correlation between low zinc and selenium levels and hypothyroidism. In the study entitled: Thyroid hypofunction in Down's syndrome: is it related to oxidative stress? by Kanavin OJ, Aaseth J, Birketvedt GS of the Department of Pediatry, Buskerud Central Hospital, Drammen, Norway they say, "Our results support the suggestion that thyroid hypofunction in patients with Down's syndrome in some way is linked to the low serum levels of selenium found in these patients."

There are several studies about zinc and the major role it plays in ds that can be searched for at this site: http://www.dsrf.co.uk/ . One in particular states, "In both their 1992 and 1993 papers, Licastro et al found that TSH levels returned to normal with zinc supplementation." If you go to www.pubmed.com and do some searching there is a lot of evidence to support this low zinc and thyroid problem issue. Below are a few studies that come up when searching with the words "zinc thyroid syndrome".

Zinc affects the metabolism of thyroid hormones in children with Down's
syndrome: normalization of thyroid stimulating hormone and of reversal
triiodothyronine plasmic levels by dietary zinc supplementation.

Licastro F, Mocchegiani E, Zannotti M, Arena G, Masi M, Fabris N.

Department of Experimental Pathology, University of Bologna, Italy.

Levels of circulating thyroid stimulating hormone (TSH),
tetraiodothyronine (T4), 3,5,3'-triiodothyronine (T3), and 3,3',5'
triiodothyronine (reversal T3 or rT3) were measured in 25 children with
trisomy of chromosome 21, also known as Down's syndrome (DS), and in 14
normal children. In subjects with DS TSH levels were increased, while
plasmic levels of rT3 were decreased. No alteration in T3 and T4 levels
was observed. Before zinc supplementation, plasmic levels of zinc and
thymulin, a zinc dependent thymic hormone, were significantly decreased
in DS children. After four months of dietary supplementation with zinc
sulphate, a normalization of plasmic zinc, thymulin and TSH levels was
observed. Plasmic levels of rT3 significantly increased, and after zinc
treatment no difference was detectable between DS children and normal
children. Clinical evaluation of the health status of DS children
showed that zinc supplementation decreased the incidence of infectious
diseases and improved school attendance. Thus, the increased efficiency
of the immune system and the normalization of some endocrine parameters
by zinc supplementation suggests that zinc deficiency may play a
crucial role in some of the pathological manifestations associated with
the syndrome, such as infections and malfunctioning of the thyroid
gland.

Is there a relationship between zinc and the peculiar comorbidities of
Down syndrome?

Romano C, Pettinato R, Ragusa L, Barone C, Alberti A, Failla P.

Unita Operativa Autonoma di Pediatria, Oasi Institute (IRCCS), Troina,
Italy. cromano@oasi.en.it

Zinc plays a central role in the immune system and has been found to be
significantly reduced in people with Down syndrome. The effectiveness
of zinc supplementation in people with Down syndrome has been reported
with discordant results. A comparison was made between a range of
clinical and biochemical variables and zinc levels in 120 individuals
with Down syndrome. Two groups of participants, one with normal zinc
levels and the second with low zinc levels, were compared on the
following measures: growth hormone secretion, IgA and IgG antigliadin
antibodies, presence of coeliac disease, T3, T4, fT3, fT4, TSH,
hypothyroidism, hyperthyroidism, CD4/CD8 ratio, total immunoglobulins G
and subclasses. No significant difference was found between the two
groups, except for IgG4 which was, unexpectedly, significantly
decreased in the group with normal zinc levels. In conclusion, an
impairment of zinc blood level in individuals with Down syndrome does
not necessarily impact on the organs and systems evaluated here.

Immune-endocrine status and coeliac disease in children with Down's
syndrome: relationships with zinc and cognitive efficiency.

Licastro F, Mariani RA, Faldella G, Carpene E, Guidicini G, Rangoni A,
Grilli T, Bazzocchi G.

Department of Experimental Pathology, University of Bologna, Bologna,
Italy. licastro@alma.unibo.it.

Immune defects, thyroid abnormalities, plasma zinc levels, and the
presence of gastrointestinal disease were investigated in 43 children
with Down's syndrome (DS). Peripheral T lymphocytes with the phenotype
of helper cells or cluster of differentiation 4 (CD4) were decreased.
Circulating activated T cells (CD3/HLA-DR-positive cells) and large
granular lymphocytes (CD16/CD56 positive cells) were increased. Plasma
levels of interleukin-6 were higher in DS children than in controls.
Serum levels of thyroid-stimulating hormone were increased in DS.
Coeliac disease was over-represented in the group of DS children and
many of these children also showed increased serum levels of
immunoglobulin-G (IgG) specific for gliadin antigen. The increment of
serum interleukin-6 was age-related and correlated with anti-gliadin
IgG levels in DS. Plasma zinc levels were lower in DS children with
coeliac disease and in those with anti-gliadin IgG than in DS without
detectable anti-gliadin IgG. Dietary antigens may represent a
continuous stimulus for the immune system in this syndrome and
interfere with normal immune responses. Altered intestinal absorption
of nutrients may in turn affect endocrine functions, brain development,
and cognitive performances.

Zinc sulfate supplementation improves thyroid function in hypozincemic
Down children.

Bucci I, Napolitano G, Giuliani C, Lio S, Minnucci A, Di Giacomo F,
Calabrese G, Sabatino G, Palka G, Monaco F.

Cattedra di Endocrinologia, Universita G. D'Annunzio, Chieti, Italy.

In subjects affected by trisomy 21 (Down syndrome), hypothyroidism is
the most common endocrinological deficit. Plasma zinc levels, which are
commonly detected below the normal range in Down patients, are related
to some endocrinological and immunological functions; in fact, zinc
deficiency has been shown to impair immune response and growth rate.
Aims of this study were to evaluate (1) the role of zinc deficiency in
subclinical hypothyroidism and (2) thyroid function changes in Down
children cyclically supplemented with zinc sulfate. Inverse
correlations have been observed between age and triiodotironine (T3)
and between zinc and thyroid-stimulating hormone (TSH); higher TSH
levels have been found in hypozincemic patients at the beginning of the
study. After 6 mo of supplementation, an improvement of thyroid
function (TSH levels: 3.96 +/- 1.84 vs 2.64 +/- 1.33 mUI/mL basally and
after 6 mo, respectively) was observed in hypozincemic patients. In the
second cycle of supplementation, a similar trend of TSH was observed.
At the end of the study, TSH significantly decreased in treated
hypozincemic subjects (4.48 +/- 1.93 vs 2.96 +/- 1.20 mUI/mL) and it
was no longer different in comparison to normozincemic patients. We
suggest zinc supplementation to the diet in hypozincemic Down children
as a simple and useful therapeutic tool.

[Anomalies of thyroid function in children with Down syndrome]

[Article in French]

Toledo C, Alembik Y, Dott B, Finck S, Stoll C.

Institut de puericulture, CHU, 23, Strasbourg, France.

BACKGROUND: Abnormal thyroid function was shown in children with Down
syndrome (DS). This study was undertaken in order to specify these
anomalies. POPULATION AND METHODS: Thyroid function of 105 children
with DS aged from 3 months to 20 years was studied by evaluation of
serum concentration of thyrotropin, free T4 (FT4), free T3 (FT3) and
reverse T3 (rT3). Each DS child was matched to a control of the same
age. RESULTS: The mean concentration of thyrotropin of children with DS
was increased while the mean concentration of rT3 of the DS children
was significantly decreased compared with the controls, as was the
ratio rT3/TSH. When DS children are split into two groups, those with
and those without increased thyrotropinemia, a significant decrease in
the ratio rT3/TSH appeared in DS children with increased
thyrotropinemia whereas there is no difference between these two groups
regarding to level of FT4, FT3, rT3 and zincemia. However, in all DS
children serum zinc levels were lower than in controls. Thyrotropin
levels rapidly normalized after thyroxin treatment. CONCLUSION: One
half of the children with DS have increased thyrotropinemia and all
have a decreased rT3.

Thyroid function and plasma immunoglobulins in subjects with Down's
syndrome (DS) during ontogenesis and zinc therapy.

Sustrova M, Strbak V.

Department of Clinical Immunology, Children's Hospital, Bratislava,
Slovakia.

Thyroid function parameters and immunoglobulin concentrations in sera
of outpatients with Down's syndrome (DS, n = 110) of different ages
(DS1 = 1-9 years; DS2 = 6-15; DS3 = 15-35) were compared with those of
age-matched controls (n = 110). Although mean serum TSH was higher in
all DS groups, thyroid hormone concentrations were significantly lower
only in DS3. In DS1, a notable frequency rate of high T4 and T3 was
found. Serum concentrations of thyroxine binding globulin (TBG) were
significantly higher in all DS groups. Free T4 and T3 indexes,
calculated as the ratio of total hormone: TBG concentrations, were
lower in all DS groups. IgA serum concentrations were significantly
higher in all DS groups, IgA was higher in DS1 and DS2. Serum zinc
levels were lower in all DS groups. Repeated examination after one year
revealed lower T4 and higher TSH in DS patients treated with zinc
during this interval as compared to values observed before treatment.
Our results suggest a high occurrence rate of complex immune and
endocrine disorders with thyroid dysregulation in DS patients, with
zinc deficiency playing a considerable role.
-----

We hope this is helpful to you all in your practice with infants with
Down syndrome.