Help with results

[Pomart]

Hi!

My 17yr old daughter was diagnosed with ? Hashimotos early last summer… high antibodies and TSH on 3 occasions. Commenced on thyroxine 25mcgs.

TSH still above 5 so increased to 50mcgs mon/wed/fri then 25mcgs rest of week.

TSH 3.45(0.27-4.2) and T4 18.7(12-22) in Feb 2024. No T3 or antibodies done.

Told these were ok when I asked should her TSH not be a little lower…plan was to repeat bloods in a year.

when she got really tired again in August I asked for them to be repeated. Reluctantly they were. TSH 7.36 and T4 21.3

She has missed a ‘few’ doses… not that many as I constantly remind and give them to her. GP can’t speak to me for another 2-3 weeks🙈.

I’m aware the T4 should be lower if TSH raised.

she had her blood taken on an empty stomach with no medication that am.

Do you think these bloods are from the small amount of doses missed or anything else? She has never seen an endocrinologist.

Tried to help her go gluten free but she found it too hard.

Any advice welcome. Thanks!!

[GlowCoach Administrator]

If shes on less than 50mcgs Levo then its a very low dose indeed and likely she needs more.

Is she always careful to take Levo on an empty stomach, 1 hr before anything other than water? Many people find taking it at bedtime works well for them.

A high TSH with reasonable FT4 looks like absorption problems. levo is very fussy indeed and needs to be taken strictly alone.

Has she tested vitamin levels yet?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[Pomart in reply to GlowCoach]

hi thanks for that!

She has a ferritin in the 30’s which GP said was ‘in range ‘ despite me saying should it not be closer to 80? She has had a chronic low serum iron . Off supplements now as it has com e above range to 8🙈. Range was above 10 but now dropped to 6!

Her B12 in the 400’s but this is the same surgery who won’t treat me private Active B12 of 36 with a positive MMA!

Folate also 5-9 and agin and hey say this is ok.

I tried to get bloods in medichecks but told she has to be 18

[GlowCoach Administrator in reply to Pomart]

If GP is ignoring below range iron or ferritin then easy to buy your own supplements. Need to be taken 4 hours away from Levo or any other supplement.

Many members do well with this heme iron:

threearrowsnutra.com/en-uk/...

You'll have to sit her down and stress to her the importance of how she takes her Levo and being responsible for her own health. Can't be easy at 17!

She must be mostly exhausted and if she paid more attention to her health she could feel so much better. Other than an increase she needs to supplement iron but also B12 & folate.

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

She could likely also benefit from a D3 supplement with K2 to help it go to her bones.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

[Pomart in reply to GlowCoach]

Pomart profile imagePomart

A few seconds ago

just had an update. I phoned hospital to speak to endocrine secretary as couldn’t wait any longer to speak to GP in 2 weeks. Turns out she is not awaiting a referral to endocrinologist.. they were just giving an opinion which was that ‘she obviously isn’t taking her Levo and that’s all the blood tests show’. No change in dose ordered. The endocrinologist also said because her bloods were fine in feb(they weren’t.. TSH was 3.9) that it was all due to not taking medication. All this without speaking to or examining her. They have now discharged her. Without actually seeing her.

I am definitely left with no choice but to get a private opinion.

[greygoose]

To start a 17 year old on 25 mcg levo is just ludicrous. It should have been 50, with an increase of 25 mcg after six weeks.

However, having a high FT4 and a high TSH on her very small dose can mean one of two things:

- either it's the Hashi's at play

- or she's a very poor converter.

I think it's probably the latter - or it could be both. But, unless she has full thyroid testing, it's impossible to say.

[Pomart in reply to greygoose]

It’s also the lack of follow up when she clearly wasn’t stable . Yes… think I’ll get someone to do private bloods as GP is not helpful at all. Thanks again!

[greygoose in reply to Pomart]

Well, it's not so much about being stable. You can be stable with a TSH of 1 or with a TSH of 100, but I know which you'd prefer! It's more about finding the right dose, and the way he's doing it, it's going to take years! But I do agree, there should be follow-up.

Besides, it's difficult to be stable when you have Hashi's because all levels tend to fluctuate.

Details of private testing here:

thyroiduk.org/testing/priva...

[Pomart]

I think I’ll have to take her privately to get seen. They have left her with these bloods since mid August and can’t even schedule a phone call for 2-3 more weeks. I had to insist on repeat bloods in August as they were saying she didn’t need them done for another year!! She def has bowel issues. Her Calprotectin level was 500 but did settle to normal. Gastro diagnosed her(without even palpating her abdomen) with IBS.

She has put on weight/tired/hair falling out etc.

[GlowCoach Administrator in reply to Pomart]

No wonder she is struggling as she is in desperate need of an increase. Do stress she mustnt take Levo before the test that day but after. Do test fasting, no biotin for 4-7 days. Test early morning before 9am.

If she wants to feel better then she is going to have to wise up to what she needs to feel well.

[Pomart in reply to GlowCoach]

Thanks for reply. I’m hoping she will listen🤞

[SlowDragon Administrator]

Blue horizon will test under 18’s

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Told these were ok when I asked should her TSH not be a little lower…plan was to repeat bloods in a year.

when she got really tired again in August I asked for them to be repeated. Reluctantly they were. TSH 7.36 and T4 21.3

Obviously she now needs increase in Levo

Push for 50mcg and 75mcg on alternate days initially

Retest in 6-8 weeks

Ideally always get same dose brand levothyroxine at each prescription

ESSENTIAL to maintain optimal vitamin levels

GP should NOT be ignoring deficient vitamin levels

aiming for optimal vitamin levels at all times

Many, many people have to self supplement to maintain optimal levels

[Pomart in reply to SlowDragon]

thanks for that!

[Dandelions]

just a message to say: keep going! You’re doing great. But it can’t be easy. Know that we all got your back on this forum.

[Pomart in reply to Dandelions]

Aww that is soo kind Dandelions. I really appreciate your message.

[Pomart]

just had an update. I phoned hospital to speak to endocrine secretary as couldn’t wait any longer to speak to GP in 2 weeks. Turns out she is not awaiting a referral to endocrinologist.. they were just giving an opinion which was that ‘she obviously isn’t taking her Levo and that’s all the blood tests show’. No change in dose ordered. The endocrinologist also said because her bloods were fine in feb(they weren’t.. TSH was 3.9) that it was all due to not taking medication. All this without speaking to or examining her. They have now discharged her. Without actually seeing her.

I am definitely left with no choice but to get a private opinion.