My 10 year old has now started on levo

[Refat]

Hi all..

Just to give an update and again for some advise too. Im sorry if this post maybe some what repetitive but I am extremely upset and feel alone at this moment in time.

My daughter has now been prescribed 25 mcg levo thyroxine she has been taking the mercury pharma brand. She was suffering from hair loss before starting medication but once i started giving her iron and vitamin D i noticed the hair loss had calmed down and almost stopped.

Now 15 days into her levo medication the hair loss has returned with a vengence. I am desparately hoping that it will stop once her body gets use to the medication and her thyroid levels are stable. I was hoping if it could be possible to get in touch with some of the parents who have previously written on this forum regarding similar circs to hear how their child is now getting on.

I have also suffered with underactive thyroid most of my life but its extremely disheartening when your baby is going through a similar thing. Im literally in tears writing this post.

[humanbean]

Optimising iron and ferritin will help your daughter's hair, and optimising her Levo dose will help too. But it can take a while to get all these things right. It is important when taking iron supplements to test regularly. Too much iron can be poisonous.

For optimal levels of iron and ferritin, aim for :

Ferritin - mid-range

and for other iron-related levels see this link :

rt3-adrenals.org/Iron_test_...

[SlowDragon Administrator]

Have you tested her vitamin D levels

Important to test twice year when supplementing

vitamindtest.org.uk

Has GP tested B12 and folate too

Her thyroid levels should be retested after 6-8 weeks

Try to always get same brand of levothyroxine, once you work out which one suits her best

[Refat in reply to SlowDragon]

Hi everyone, i have just been speaking to my daughters endo. Raised my concern about her hair loss and he told me its nothing to do with her thyroid. He said her thyroid levels were so marginally high that it would not affect her hair at all!!

I have been advised by endo to contact gp regarding hair loss.

[SlowDragon Administrator in reply to Refat]

Endocrinologists rarely remotely interested in vitamin levels unless test result is actually deficient

Usually hair loss stabilises once on correct level of levothyroxine.

What’s her diet like?

[Refat in reply to SlowDragon]

Hi her diet is getting a lot better. Ive tried to eliminate as much gluten as possible over the past few weeks. She has plenty of fruit veg etc.

I am very much surprised that endo said that hair loss is not due to her thyroid at all. I tried also explaining that her recent thyroid levels were checked at around 2 pm and they were around 4.7 but they would have been higher in morning and he disagreed. I also mentioned that I have learned alot from this group but he dismissed it saying im reading too much.

He told me that to this date no patient of his has reported hair loss when starting on levo either. He made me doubt everything that I have learned.

Hes told me to contact gp and if they cant help then they should refer us to a skin specialist regarding hair loss. Honestly i really could have screamed over the phone.

I will ask GP to test her vitamin D and B 12 with folate and iron again. last time this was tested was back in jan this year. At that point her ferritin was 38 as far as i can remember but as she has periods every 21 days since she started in feb 20 at the moment gp gave iron syrup.

[SlowDragon Administrator in reply to Refat]

Never mention Internet forums (red rag to a bull)

A few thyroid specialist endocrinologists do recognise that timing of testing is important....but the majority are probably unaware ...hence patient to patient tip

researchgate.net/publicatio...

“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Median TSH graph

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

[Rapunzel]

I'm hoping that you may find this useful tpauk.com/forum/forums/for-... best to you; how difficult for your daughter and for you too. Hugs

[tattybogle]

I can understand how dreadful you must feel. I don't have a child on Levo , but when i was a nursery nurse i knew an 8 yr old who was put on it , and she was a different child within a year. with a full head of hair.

But i do know how much harder it is to see your child suffering, and how much you fear for their future when you know thing's they don't.

It's important you try and forget about your fears and guilt here... they're no help to your daughter. Try and stay focused on what you have done , and what you can do.

You 've known enough to get her some treatment......... some kid's don't get this.

You've found other hypo patients on here to talk things through with...... some don't find any support other than GP.

You have experience of being Hypo......... this will be helpful , and much better than if you had no idea how it can effect things.

Your daughter will not have fears for the future like you do....... it may be better if you try and approach this more like a child yourself, than as an adult with your knowledge and fears. Kids are much simpler in how they see things, they are much better than adults at taking each day as it comes.

Whatever happens . you'll deal with it together,

All any kid needs is a good enough mum who loves her. I'm sure you're more than good enough.

Sending you a big ((((hug))))

Tat

[SkyBelle]

Try Wochardt Brand - Mercury Pharma was horrendous on my body