Help with daughters results please: Hi, I am in... - Thyroid UK

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Help with daughters results please

Refat profile image
11 Replies

Hi, I am in need of guidance with my 13 year olds recent results. She has had a dose increase to 125 mcg levo for 3 days a week and 100 mcg levo 4 days per week. Her last results on 31/05/2023 whilst on 100 mcg daily waa tsh 1.1 ref range 0.2 to 4.0 and t4 16.4 ref range 11 to 22.6. She has recently had bloods taken last week with the following results tsh 0.33 and t4 17.1 the ref range remain the same. I was hoping for a higher t4, please could u tell me what steps to take..i know there is a scope to increase her levo but is there anything else that can be done. Many thanks in advance.

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Refat
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SlowDragon profile image
SlowDragonAdministrator

ESSENTIAL to test folate, B12 and ferritin at least once a year

Can see on previous post she was deficient in ferritin

Retest vitamin D twice year when supplementing

What vitamin supplements is she taking

Please add most recent vitamin results

SlowDragon profile image
SlowDragonAdministrator

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

is this how she did her test?

What’s her diet like

Does she eat red meat?

As she has hashimoto’s is she on dairy free or gluten free diet

If not get coeliac blood test done via GP BEFORE considering trial on gluten free diet

Refat profile image
Refat in reply to SlowDragon

Hi, sorry thought my reply had gone but there appears to be a glitch at my end.her bloods were done at 9 am she didnt drink much water at all just managed to drag her out of bed and to the surgery at that time.

She hasnt had any other recent bloods other than ferritin in may which was at 69 and range remains the same as last time it was checked. I'll be honest since may i havent been on top of ferritin as dont wish to over do it, i have been some what slack with her vitamin b complex and vitamin D during summer even though she has not been out much. I am starting it all back up now.

She was tested for celiac in 2020 and that was negative and endo refuses to do it again as says there is no need but i will ask GP to do it.

Her vitamin D in the past was just over 50 too.

Her diet isnt great, she is very picky but try to give her plenty of chicken and meat too.

SlowDragon profile image
SlowDragonAdministrator in reply to Refat

If she’s already had negative coeliac blood test no need to repeat

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Refat profile image
Refat in reply to SlowDragon

Thank you for your detailed reply it is very much appreciated. I will try going as gluten free as i possibly can with her. Fingers crossed for improvement in increasing t4.

SlowDragon profile image
SlowDragonAdministrator in reply to Refat

Discuss trying small increase in levothyroxine with GP

Perhaps 125mcg 5 days…..100mcg 2 days

Refat profile image
Refat in reply to SlowDragon

Hi SlowDragon..could the way i give my daughter her levo have had an impact? she had a dose increase in january 2023 to 100 mcg levo and i always give her mercury pharma brand. I was giving her 4 x 25mcg of mercury pharma a day to make up the 100, she had a blood test in March (sorry dont have results) but her tsh was nice and low and T4 nicely at the top end which was slightly above 19. The local pharmacist then told me he could get 100mcg mercury pharma levo which i agreed with. After 6 weeks on the 100 mcg levo i noticed that she began to feel tired...did bloods in may and tsh rose to 1.1 and t4 was 16.1...this is when her dose increased to 125mcg every 3 days and 125 mcg every 4 days...this change has not increased her t4 to the upper end. Now im wondering if i should go back to giving 25mcg tablets instead..i know it'll mean swallowing more pills but she was doing that initially anyway. Perhaps the 100mcg isnt absorbed well. Its just something worth trying for about 2 months and then checking her levels again. I have spoken to the pharmacist at our GP surgery who has said its fine to do that but we dont know if it will make any difference, but i think its better to try this first instead of an increase at the moment.

SlowDragon profile image
SlowDragonAdministrator in reply to Refat

No it’s probably just coincidence

Levothyroxine must be taken on empty stomach and then nothing apart from water for an hour after

very common to need further increase 3-6 months after last one

As we get use to a dose of levothyroxine, then metabolism improves and dose levothyroxine needs increasing further

How much does she weigh in kilo approximately?

Most importantly how does she feel, what are her main symptoms

Refat profile image
Refat in reply to SlowDragon

The last time she was weighed she was 54 kg, but she has gone taller since and also appear to have put on just slightly more weight. The only symptom she has is slight tiredness i just dont want her to develop more symptoms which is why in trying to be proactive now.

Cornwaller profile image
Cornwaller

How is your daughter? Her sense of well being or symptoms are very helpful in managing her hypothyroidism.

Bearo profile image
Bearo

Just to add, and I know it will be difficult, but going gluten-free is said to be all-or-nothing, I.e you can’t just reduce gluten.

But I’m not gluten-free myself, it’s just what I’ve read on here.

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