Borderline/low cortisol child: Hello lovely... - Thyroid UK

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Borderline/low cortisol child

figster profile image
8 Replies

Hello lovely people,

I posted last week about my 9 year old daughter being diagnosed with autoimmune hypothyroidism. I received some great support from this community and wonder whether you could perhaps offer me some further wisdom please.

It transpires that she also has a cortisol level that is just below the reference range. This has been checked twice a week apart and the numbers are almost the same. She doesn’t have any symptoms of adrenal insufficiency.

Any thoughts or experience with this please? It all feels a bit overwhelming at the moment.

Many thanks for your support.

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figster
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8 Replies
JumpJiving profile image
JumpJiving

Were the cortisol levels checked by a pediatric endocrinologist? Adrenal insufficiency is deemed a rare condition, and even most endocrinologists have limited experience of it. Even fewer have experience of pediatric cortisol levels, for which the reference ranges vary from adult reference ranges. Realistically, many endocrinologists will never have knowingly seen a pediatric case of adrenal insufficiency. Cortisol levels also vary through the day, so the basic cortisol blood test should always be done between 08:00 and 09:00.

Because of the specialism involved, I would suggest asking this question in the forum at forum.addisonsdisease.org.u...

Despite the domain name, that group deals with adrenal insufficiency in general, not just Addison's Disease (which is primary adrenal insufficiency).

figster profile image
figster in reply to JumpJiving

Thank you for your reponse - I thought I wasn't going to get any this time!! In answer to your question, the cortisol levels haven't been check by a paediatric endocrinologist. The tests were requsted by a generalist paediatric consultant with an interest on endocrine issues. The tests were done early in the morning. I will ask for advice in the addison's forum, as suggested. She has no symptoms of adrenal insufficiency whatsoever but it's just something else to worry about now along with her thyroid dysfunction. Many thanks again - I appreciate your help.

figster profile image
figster in reply to JumpJiving

Ah, it looks like you have to pay to become a member of the forum unfortunately.

JumpJiving profile image
JumpJiving in reply to figster

For a free alternative, you could try the Facebook group "UK Addison’s Disease & AI Info & Support Group".

figster profile image
figster in reply to JumpJiving

Thank you so much for your help.😊

humanbean profile image
humanbean

As an aside to your daughter's problems, when thyroid and adrenals are not working well patients can find that their nutrient levels get trashed.

It would be well worth it for your daughter's vitamins and mineral levels to be tested once or twice a year and for them to be kept as close to optimal as you can get them.

One thing to be aware of is that doctors have almost no training in nutrition and they assume that all patients in the western world have a good diet and couldn't possibly be short of vitamins and minerals. So they often refuse to test. If they do test they often won't treat low levels for long enough to optimise levels.

People with thyroid disease are encouraged on this forum to keep tabs on their levels of Vitamin B12, Folate, Vitamin D and Ferritin (iron stores). It is also quite common for people like us to end up with low selenium, low or high zinc, and low or high copper. Magnesium can also often be low, but magnesium testing is unreliable.

If zinc is low, copper is usually high. If zinc is high, copper is usually low. Low zinc is the most common finding in hypothyroidism but either scenario can occur.

The other problem is that doctors think any test result for nutrients that is within range is "fine". In some cases if a result is below range but quite close to the range the doctor thinks "that's close enough".

There is a difference between optimal levels and a result just being anywhere in range. Optimal is preferable!

The problem with hypothyroidism in terms of nutrients is that the body "dries out". As a result the patient has lower levels of stomach acid than usual and so can't digest food properly or extract nutrients from food. Gut problems (bloating, indigestion, stomach cramps, wind, pain) are common. I am convinced I have had hypothyroidism since birth or infancy. My gut problems began in my teens and have never gone away.

Doctors are unlikely to help much, or at all, with testing and low nutrients. It should become easier once your daughter reaches 18. There are fewer roadblocks in the way once the patient is legally considered an adult.

Blue Horizon Medicals will do private blood testing of children under 18 in some circumstances. They are the only company I have heard of that will do that.

thyroiduk.org/testing/priva...

figster profile image
figster in reply to humanbean

Thank you for all your help at this overwhelming time.😊

caledoniancat profile image
caledoniancat

As already highlighted, the addisonsdisease.org.uk forum requires paid membership but you could try inspire.com/groups/national...

I think it still has a free access forum.

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