Congenital hypothyroidism : My son was diagnosed... - Thyroid UK

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Congenital hypothyroidism

My son was diagnosed with congenital hypothyroidism shortly after birth and consequently he has taken levothyroxine his entire life. He has a blood test once a year and has taken 200 micrograms daily for some time.

He is just about to turn 30. He is overweight and suffers from dry, scaly skin. His blood tests always come back normal and his doseage is therefore considered correct.

Should he be asking for a review of his medical condition, given that he has had no clinical assessment of his hypothyroidism since he was discharged from Great Ormond Street as a child?

11 Replies
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Wiggy57

What are his latest test results?

TSH

FT4

FT3

When I have been undermedicated, the skin on my legs has been so dry that there was a shower of skin when I took my trousers off. The fact that your son has dry, scaly skin and is overweight could suggest he is undermedicated.

His doctor may say his results are "normal" but all that means is that they are somewhere within the range. It's where within the range they fall that is important.

Does he always take his Levo on an empty stomach, one hour before or two hours after food, with water only (no tea, coffee, milk, etc), and water only for one hour each side? Does he take his Levo 2 hours away from other medication and supplements (some need 4 hours)? All this ensures that the Levo is absorbed properly.

Are his vitamin and mineral levels optimal?

Vit D

B12

Folate

Ferritin

Optimal levels are needed for thyroid hormone to work properly. Many hypo patients have low levels or deficiencies.

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Thank you. This is really helpful. I don't think he is ever given his test results- he's just told they're within the 'normal' range. He's also never been given advice on how to take his medication. I shall pass this on and get him to speak to his doctor about getting access to his test results and having some more tests done. Thank you so much for taking the time to reply.

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He doesn't have to speak to his Dr for hiss results, simply ask the receptionist to print off a copy each time.

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Wiggy

If you live in England, I believe that online access to test results is supposed to be available, so he could ask about that. I live in Wales and it's not available in my area so I can't help there.

If online access isn't available, then he should ask for a print out of as many results as he can get, certainly his latest one. Don't accept verbal or hand written, mistakes can be made, he should get a print out from the reception desk (no need to ask the GP). In the UK we are legally entitled to our results, with no charge, under the Data Protection Act.

Post any results on the forum for members to comment.

He can always do a full thyroid/vitamin panel with one of ThyroidUK's recommended labs if he can't get everything done with the GP. Ask and we can point you in the right direction and suggest the best test. They can be done by fingerprick or venous blood draw. The results are as reliable as the NHS tests, they are done by accredited labs.

For future reference, when booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed), this means have your evening meal/supper the night before then delay breakfast until after the blood draw, drink only water, no coffee, tea, etc, before the test.

This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take Levo after the blood draw because if you take it before then FT4 result will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

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Thank you! I am going to discuss all this with him at the weekend ( he's too exhausted at the end of the working day to do anything) and get him to make an appointment for a blood test. I'll let you know how he gets on.

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Could you also advise on where to get independent testing and how much this would cost?

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The two most popular are Blue Horizon and Medichecks.

Medichecks medichecks.com/thyroid-health

Full thyroid/vitamin testing is the Thyroid Check ULTRAVIT medichecks.com/thyroid-func...

Sometimes on offer on a Thursday with £20 off, if not then use code THYROIDUK for 10% discount

Blue Horizon bluehorizonmedicals.co.uk/t...

Full thyroid/vitamin testing is the Thyroid plus ELEVEN bluehorizonmedicals.co.uk/t...

If he prefers a venous blood draw at extra cost, rather than doing it by fingerpick, there are details on their websites where it's available at certain clinics/hospitals, or home phlebotomy service can be arranged.

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I forgot to mention. We live in east London, so anywhere in London is accessible.

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Thank you for your swift reply. He has never been given advice on how to take his medication. I will pass on your advice.

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