Update on my daughter - 5 months later - Tell me what would you do if you were me? Please please help!

[FallingInReverse]

Previous Post: healthunlocked.com/thyroidu...

We have followed the priorites and action plan in that above post pretty closely.

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MY QUESTION: Do I start her on Levo. Or. Do I wait one more 6-8 week cycle to see what happens to her bloods in that time?

my concern: Without knowing the cause of her blood status, ie AB tests all negative so far, at at her age (17), I'm obviously aware that to go on Levo is a long term, life-long decision. Is there any evidence that low Free Ts observed this early can fluctuate? I'm tempted to just start her on Levo. But also have no idea if I should wait and see for anything in particular to change. Remember I am in the US, and I would be able to ask for a Levo prescription.

I have done tons of research on how pediatric and teen TSH/FT4/FT3 ranges vary from adult ranges. Higher TSH is more prevalent in the youth population, so her Dec 2023 bloods were not at all conclusively hypo based on what I learned. Plus she's a hormonal teenage girl, so I'm not sure how that impacts trends/volatility/conclusions. But March does not look great!

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HEADLINE UPDATE: TSH increasing, Free Ts muddling about in the lower range, vitamins not absorbing as I'd expect.

SYMPTOMS: Still consistently very fatigued, and ongoing headaches.

Supporting details:

- Abs negative so far, still waiting on March ab test results, so this post is written assuming they will be negative. If positive, I guess that would make my decision easier??? I'll update when I have them, if it even matters.

- Ferritin - Working on Ferritin with Three Arrows. Was 16 in Dec, now 22. At least it moved, AND while I have masterfully balanced her iron about 75% through range - proud of myself on that one!

- Vit D . Lack of absorption not encouraging. Was 29 in Dec, now it's 37, despite an early loading dose and 2000 iu/daily.

- Others. Added magnesium this week. Haven't tackled B12 and Folate (one thing at a time, will deal with later).

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March 2024

TSH 3.46 (0.480-4.170)

FT4 .95 (0.83 - 1.43)

FT3 3.4 (3.0 - 4.7)

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December 2023

TSH 2.944 (0.480-4.170)

FT4 1.16 (0.83 - 1.43)

FT3 4.0 (3.0 - 4.7)

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October 2023

TSH 2.799 (0.480-4.170)

FT4 0.95 (0.83 - 1.43)

FT3 4.0 (3.0 - 4.7)

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March 2023

TSH 1.217 (0.480-4.170)

FT4 0.80 (0.83 - 1.43)

[HealthStarDust]

Bump.

[FallingInReverse]

Thanks HSD for the bump.

Hoping to hear anyone’s input.

As the day went on, I’m leaning towards starting her on Levo.

If it was anyone else with those results we’d say the TSH is too high and no one could feel well with an FT3 that low. Yes, she’s 17 but she’s taller than me and the same weight. Not sure if that matters, but she physically looks more adult than child.

Her fatigue and brain fog are constantly in the way of living her life. Cold. Moments of sadness/depression. She’s not absorbing her vitamins/minerals.

It’s been a year of symptoms. I am hard pressed to find any reason to delay. Can anyone think of anything?

If anyone has input otherwise please share.

[Buddy195 Administrator]

You are doing such an amazing job FIR supporting your daughter & have done so well improving her key vitamins. It’s a tricky one thinking about if/ when to start Levo, as levels can fluctuate (especially with less than optimal vitamin levels). Could you consider a Levo trial for 3 months and monitor what impact a small dose has?

[FallingInReverse in reply to Buddy195]

Thanks Buddy195

I can definitely find a way to trial Levo. But when you say “trial a small dose” - wouldn’t I just start her in 50 mcgs in any case? And why would I consider only three months. Are you saying that if it doesn’t make her fatigue and brain fog get better in 3 months, I might stop the Levo? I feel like I need to make a longer term decision? If I put her on Levo, we’re in it for at least a couple years if not a lifetime?

Her fatigue and brain fog are getting in the way of her school work and ability to do things during the day. She’s exhausted regularly , and has headaches regularly.

SlowDragon had asked something 5 months ago about her vitamins that stuck in my head - Question is WHY are her vitamin levels so poor

That stuck in my head. Especially now that her D hasn’t gone up as much as I thought it would.

Although her Ts looked much better a year ago - her TSH is just going up for the entire past 12 months.

That’s why I’m looking for objective input.

Does this look so clear cut to me because I am now so trained to see rising TSH and lower range Free Ts as a problem?

Since I know Levo would replace her, I want her to have that relief. I know raising her Ts will make her feel better. (Right?!)

I’m only very slightly ambivalent about it all, like - am I being short sighted or overlooking something? Why wouldn’t I start her on Levo with those numbers?

[Buddy195 Administrator]

As your daughters thyroid is obviously struggling with TSH over 2, many medics would still suggest waiting to see if it stabilises over time or raises further (to a level when they more readily prescribe Levo). I suggested a trial just to see if after 3 months on a starter dose (50mcg) her symptoms improved/ levels improved.

When my levels were ‘borderline’ my Endo recommended a watch and wait approach/ then a trial for 3 months.

[FallingInReverse in reply to Buddy195]

I am in the US, and I don’t need to wait for my doctor, I will be able to ask for what I need.

I just need to figure out what that is.

So - if this was you or your daughter… would you actually see any good reason to wait?

[SlowDragon Administrator]

I would wait another 6-8 weeks and retest

Meanwhile continue improving vitamin levels

Retest all in another 2-3 months

[FallingInReverse in reply to SlowDragon]

Thanks SD. Is it her age that makes you cautious? If you saw those numbers in a young adult, would you also wait?

[SlowDragon Administrator in reply to FallingInReverse]

No thyroid antibodies…..yet

Have you done ultrasound scan of thyroid

It’s a vicious circle…..low vitamin levels…..low thyroid function

is she vegetarian or vegan?

Has she been tested for coeliac disease

Would she consider trialing gluten free

[FallingInReverse in reply to SlowDragon]

Agree on watching those antibodies, March’s results are still pending so we’ll see there. But correct, still negative.

I could get a thyroid scan - would that be to try and see if there is a physical “cause” to the thyroid; or to see if there is any damage?

She is not vegetarian at all, eat a good amount of meat, well rounded healthy diet, and also supplement with Three Arrows.

Regards to gluten free, I do need to test her for celiacs but I can also say that gluten free would be a very huge endeavor right now. I want to try it at some point too, but it’s nit something I could tackle right now ( unless she’s actually positive for celiacs , then of course,…)

[FallingInReverse in reply to SlowDragon]

Considered this, although it goes to 15 and she’s 17.

Tap to expand.

Chart

[FallingInReverse in reply to SlowDragon]

And this:

Chart

[Buddy195 Administrator]

Personally, I would wait. However, I appreciate we are all different. You have to go with what you feel is right.

Going gluten free made a huge difference to my symptoms, so as SlowDragon suggests, this may be worth considering.

[FallingInReverse in reply to Buddy195]

Would you wait… because you think her Free Ts will recover on their own? Do you think her TSH would decrease?

Genuinely asking - trying to figure it out.

All the numbers above in the articles (I think the articles were on the thyroid Canada site) say she is hypo. The numbers are pretty clear.

I’m a very cautious, conservative person too.

Just been watching her struggle this past year. The words she used to describe the fatigue and brain fog are so familiar.

Appreciate your engagement here, I need to bounce this off this forum because nobody else knows anything, as you know.

[FallingInReverse]

Buddy195 and SlowDragon

Also - I've just looked at B12 and Folate, and they are now in what I read on this forum is what we aim for.

Between 5 months ago and now:

- B12 from 364 to 502 (211-911)

- Folate from >24 (range >5.4) to 20.2 (>5.4)

So I suppose I could consider a maintenance dose for those, but they are not dire, and so I am left asking...

If raising ferritin and D into target would reverse her thyroid trends.

Would gluten free reverse her thryoid trends. Despite it having it's own benefits, if her Free Ts don't increase then she will still feel hypo.

And the chart from the studies above - she fits the criteria for pediatric/teen ranges for hypo (so says that study) and if any "adult" came to this forum with those numbers.. would anyone say "wait."?

[SlowDragon Administrator in reply to FallingInReverse]

B12 too low if below 500

Is she vegetarian or vegan

Look at adding daily B12

Is she taking vitamin B complex

Work on getting ferritin nearer 70 minimum

Get ultrasound scan of thyroid

And coeliac blood test before trialing Gluten Free diet

Also consider dairy free diet

[Buddy195 Administrator]

I would simply wait a few more months to see if there is any further change/ recovery, perhaps after a GF trial. However, others may think I’m being too cautious.

[LynLyn]

Hi. I’ve read your post with great interest. I was told by a doctor that as a teenager had I been given the correct nutrients, lifestyle changes and a year to rest and heal I would most likely have recovered from low thyroid. I was given thyroxine which has lead to feeling unwell for my entire adult life, often due to poor medical advice. I’d wait. Give her system time to recover from the improved nutrients. There are many ways to catch up with education and schooling when hopefully things have settled and she is feeling stronger.

[FallingInReverse in reply to LynLyn]

Thanks Lyn, very grateful for your reply. Question - are you Hashis?

Did you ever consider going off the Levo and letting your thyroid wake up, if your vitamins had recovered?

[LynLyn]

Hi FallingInReverse

I was recently told autoimmune assumed hashimotos after a thyroid ultrasound. I am from the UK and on diagnosis many years ago I was told hypothyroidism with no further testing. There is a history of autoimmune disease on both sides of my family.

I almost have my vitamin levels optimal. I’m currently working with a functional doctor to find maintenance doses. I would hope that conversion will improve with optimal vitamins and I would like to see if I could manage without T3. I remain hopeful that I can reduce my medication.