Starting dose for a child

[ruthl12]

Hello, I posted a few days ago regarding my 9 year old daughter. She has been prescribed 50mcg of Levothyroxine from a paediatrician. There is no follow up booked with the doctor currently but repeat blood test in 4-6 weeks.

My question is: is 50mcg a lot to be starting on? The instructions clearly state that children should start on a low dose & increase every 2-4 weeks if well tolerated. Any thoughts?

Latest results:

TSH 6.31 (0.27-4.2)

Free T4 14 (12-22)

TPO 1300+ (0-60)

She weights approx. 35kg

Thank you again.

[helvella]

Did you know there are special paediatric ranges for many tests, specifically including TSH, FT4 and FT3?

Use of these special ranges is particularly important in young and very young children because they can be significantly different to adult ranges. Even at age 9 they can be a bit different.

The document linked below is to a list of adult and paediatric ranges for numerous tests.

(That the document exists without reference to specific laboratories is deeply questionable - but I am using it ONLY as illustration. You must use the ranges from the laboratory that did the actual tests on your daughter's blood.)

rcpch.ac.uk/sites/default/f...

[ruthl12 in reply to helvella]

Thank you for taking the time to reply.

I am not sure how they have worked out 50mcg. I have to say that the more I look into this, the more confused I am.

My daughter suffers from extreme fatigue & body aches amongst other symptoms. The last phone call I had with the paediatrician she mentioned a diagnosis of chronic fatigue, despite evidence that some autoimmune responses are going on within her body. We have seen the paediatrician once.

[NWA6]

I’m no expert in any fields of medicine but 12yrs of Hashi’s. 50mcg seems like a huge amount for a 9yr old. Her TSH is only just out of range and her T4 in range. Can you afford to have private tests done so that you can see what her T3 result is?

The very very last thing you want is panic attacks. This would be devasting for your wee girl. If she were mine I’d start on 25mcg. I’d probably start by emailing the secretary of the Endo and ask her to ask him for more reassurance and also his ‘permission’ to start more slowly. You never know he/she may be onboard with you. Id also talk to the GP to get them on side.

Take in with you any supporting documents to show why you gave concerns.

Good luck 🤗

[ruthl12 in reply to NWA6]

50mcg ‘feels’ too much. I am feeling very confused at the level of difficult the doctors have with interpreting my daughter blood tests. She’s also tested positive for parietal gastric cell antibodies, low Vit D, amongst others that haven’t been discussed with me. All this has been done over the telephone & no follow up booked. It all feels very haphazard.

[helvella in reply to ruthl12]

Given the gastric parietal cell issue, I suggest you also post on the Pernicious Anaemia Society's forum:

healthunlocked.com/pasoc

[Mary-intussuception in reply to NWA6]

TSH is too high.

Target Therapeutic maximum level of TSH is far lower than maxImum of 'normal' range.

[ruthl12]

Just found this guidance from NICE

bnfc.nice.org.uk/drug/levot...

Indicating starting on 50mcg... so I should now feel confident administering Levothyroxine to my daughter..

[NWA6 in reply to ruthl12]

I still think I’d be cautious. You say low Vit D and parietal gastric cell antibodies amongst others that haven’t been discussed. I’d push for them to be discussed and or disclosed. Then put right and then start on Levo if necessary.

[Mary-intussuception in reply to ruthl12]

Did anyone do any tests to check her Adrenal function ?

This must all be very difficult for you. The doctors are not being much help as this has gone on for so long. What are the other tests they have done and want to do?

Did they suggest the Levothyroxine or what it a response to your request?

No one on here is medically qualified, I read the NICE guidelines but couldn't see a date on there.

You know that your daughter definitely has raised Thyroid Antibodies (TPO) , she has Hypothyroid results and symptoms . . .

EDIT - I just found a date at the end of that NICE page - 2019.

[Mary-intussuception]

Do you have the date of these results. They are the same as those in your post from 4 days ago . . . .

Worth bearing in mind - wasn't your daughter on multivitamins containing Biotin when this blood test was taken ?

Can we be certain of accuracy?

Do you know when you can get all her results, notes?

ps

What was said about Vitamin D?

[ruthl12 in reply to Mary-intussuception]

She has been prescribed 400 units daily of colecalciferol Vit D3 drops.

Out of the 4 doctors 2 have suggested to start Levothyroxine & 2 said not to start treatment but re-test in 6 weeks. She has had 2 other recent tests results one just under the 5 TSH range & one over. They didn’t test antibodies before the latest one, which I have posted.

I have requested a print out of the blood tests but haven’t got them yet. I can’t seem to attach a pic of what was tested... so many to write out! I can’t see if her adrenal function was tested, I need to go through & look up what all the abbreviations are.

The reason I posted earlier is that just haven’t got much confidence in what has been said to me so far or the treatment plan & was panicking about what to do. I have decided to wait until Monday & hopefully have another talk with her doctor to reassure me about the dose.

Thanks for replying

[Mary-intussuception in reply to ruthl12]

Not helpful when doctors disagree.

There is no denying the HIGH result TPO Antibodies ; the HIGH (over range) TSH and low (bottom of range) FT4 , indicating Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.

How is she feeling at the moment?

Are you able to arrange a special family outing tomorrow or some treat at home? Is she well enough?

Would be nice to be able to switch off for a day and have some fun if she's up to it .

x

ps

If you can't copy the print out on here then, for now, I think I'd read through and look for any results that are in bold, underlined or marked with an asterisk. Or read the ranges and see if any numbers fall outside . If so just write those ones on here.