Advice please

[Poppylilly2015]

Hi my 8 year old daughter is on 75mcg levothyroxine for auto immune thyroid disease,she also has delayed gastric emptying and was on 30mcg of omprazole,she is on a low fat diet,weighs 31.1 kg and is 133.6 in height,last week she was really unwell with tummy ache,so her omprazole was upped to 20mcg in morning her thyroxine at 11.30 am then another 20 mug of omprazole at night,she also has to take 10ml of peptic liquid 4 times a day,when her tummy gets sore,you can actually see it hardening from under her breasts right down to her tummy,her bones crack in her knees and ankles,any advice would be great.

She is under endo and gastric at hospital

[shaws Administrator]

Unfortunately it seems to me that few doctors know anything about the purpose of thyroid hormones and are apt to treat 'symptoms' as apart from the lowering of thyroid hormones.

When hypothyroid, and not yet on an optimal dose, we can develop 'low stomach acid' which gives the same symptoms as 'high acid' therefore the doctor prescribes something like omprazole .

On this forum many, myself included, take a Betain with Pepsin tablet during meals

to provide the necessary stomach acid which is needed to dissolve food. (I also must state I'm not medically qualified in any way).

An excerpt from the following link.

If you’ve been following me for a while, you’ll likely have heard of betaine with pepsin. Betaine with pepsin was one of the most helpful supplements I came across during my health journey. I often tell the story about how this supplement changed my life. Excessive fatigue was my most challenging symptom.

thyroidpharmacist.com/artic...

Hashimoto's is the commonest form of hypothyroidism and is diagnosed if we have thyroid antibodies present in our blood.

[m7-cola in reply to shaws]

I heartily support this post. It’s ironic that patients are often given the very drug which worsens their low stomach acid.

[Poppylilly2015 in reply to m7-cola]

Can you explain please

[m7-cola in reply to Poppylilly2015]

Proton pump inhibitors reduce the effectiveness of both stomach acid and thyroxine. See Shaw’s comments.

[Marz in reply to Poppylilly2015]

We need good acid levels to break down proteins in the stomach before it passes into the duodenum. PPI's not only lowere the much needed acid but can also be the cause of lower B12 and other vital nutrients. I have also read that long term PPI's can cause Alzheimers - possibly due to the lack of good vitamins and minerals. it is designed as an 8 week course. I would not take it myself so certainly would not give it to a child.

Low acid and high acid have similar symptoms.....

[Mary-intussuception]

Is it acceptable to give advice on here for an 8 year old?

Especially one with complex medical conditions and needs.

Is anyone on here adequately medically qualified or had personal experience of all these conditions?

One thing worth reconsidering might be timing of Levothyroxine - why 11.30 am?

Very difficult with so many other meds.

[Poppylilly2015 in reply to Mary-intussuception]

Levothyroxine is at 11.30 so it doesn’t interfere with her other medication

[Mary-intussuception in reply to Poppylilly2015]

How close to 11.30 are PPI and medicine?

What's the name of the 'peptic liquid' medicine?

Do you have your daughter's last Thyroid blood tests results to share?

Do you know if her bowel movements are good & regular ?

Is she happy to drink lots of water (2 cups in morning & at least one before each meal)?

Have you mentioned knees & ankles symptoms to the Specialist - what was said? Ask for Orthopaedics referal?

[SlowDragon Administrator in reply to Poppylilly2015]

She needs to see a paediatric endocrinologist who specialises in Thyroid

Has she had coeliac blood test?

Has GP tested her vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with autoimmune thyroid disease(Hashimoto's)

These tests could be done while waiting for referral to endocrinologist

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

[Poppylilly2015 in reply to SlowDragon]

She sees an encrolgist

[SlowDragon Administrator in reply to Poppylilly2015]

Is this endocrinologist a children's specialist

Are they a thyroid specialist or only diabetes specialist

A children's thyroid specialist is rare

Has this endocrinologist regularly tested her vitamin levels and tested her for coeliac disease?