Can anyone comment on my daughter's blood tests and advise what - if anything - we should do next?

[ReaCoe]

My daughter is 18. I first requested blood tests with the GP when she was 15. This was during covid. I had to fight over the phone for them but she'd put on weight rapidly, she especially looked to be retaining fluid in her legs, feet, hands and face. Other symptoms = tiredness, slow movements, dry eyes, dry coarse hair, often cold when no-one else is, low mood, anxiety, heavy and irregular and painful periods. Blood tests came back okay and there was no follow-up and we spent a few years considering other things, PCOS, low iron, low folate, allergies etc...

Last year, at age 17, we pushed again for her thyroid to be tested, as she'd continued to put on weight despite a super healthy diet and a year of going to the gym. The results were:

TSH 1.17

T4 16.2

3 months later I arranged for private blood tests so I could also get her antibodies tested as I still suspected her thyroid was an issue. Results below all deemed in normal range:

Ferritin 25.8 (13 - 150 μg/L)

Vitamin D (25 OH) 53 (50 - 200 nmol/L)

TSH 2.38 (0.27 - 4.20 mU/L)

Free T3 6.0 (3.1 - 6.8 pmol/L)

T4 Total 88.8 (66 - 181 nmol/L)

Free T4 14.2 (12.0 - 22.0 pmol/L)

Serum Folate L 7.13 (8.83 - 60.8 nmol/L)

Vitamin B12 327 ((145 - 569 pmol/L)

Magnesium 0.82 (0.7 - 0.91 mmol/L)

IMMUNOLOGY

Anti-Thyroidperoxidase abs 14.7 (<34 IU/mL)

Anti-Thyroglobulin Abs 12 (<115 IU/mL)

She's been taking supplements to raise her ferritin and folate, vitamin D etc... 5 months later we repeated at home private blood tests . Results:

* Vitamin D (25 OH) 59 (50 - 200 nmol/L)

* Magnesium 0.84 (0.7 - 0.91 mmol/L)

* Ferritin 53.00 (13 - 150 μg/L)

* Serum Folate 15.70 (8.83 - 60.8 nmol/L)

* Active B12 63 (37.5 - 150 pmol/L)

* TSH 3.55 (0.27 - 4.20 mIU/L)

* Free T4 14.2 (12.0 - 22.0 pmol/L)

* Free T3 5.4 (3.1 - 6.8 pmol/L)

* T4 Total 86.1 (66 - 181 nmol/L)

* Anti-Thyroglobulin Abs 15 (<115 IU/mL)

* Anti-Thyroidperoxidase abs 18.1 (<34 IU/mLTSH 2.38)

So, my thoughts and questions because I am confused what to do next, if anything.

I've read a study which says normal TSH range for females aged 18-29 might be closer to TSH 04 - 2.5. So, my daughter's TSH is now beyond normal range. I've also read a study which says the presence of positive antibodies means the person will go on to develop autoimmune hypothyroidism. And also read a study which says all of the population have low antibodies and only a small percent will go on to develop an autoimmune condition!

The bottom line for me is that her TSH is going up. Two members of our family recently were diagnosed with coeliac disease so now we have evidence of autoimmune disease in our family. But I am guessing a GP is going to turn us away and do nothing. Still, she has symptoms. All the same symptoms and has done so for at least 3-4 years. And these are making her miserable. Each year we are having to buy her new clothes as she gets bigger. She's just never energetic, despite the very healthy food. She's a young adult who should be enjoying life.

I wonder if she didn't already practice a very healthy lifestyle whether her numbers would be higher? Or are her numbers just normal and what are found in the general population. By contrast, my thyroid was measured this year and last and my TSH was 0.48 and 0.95 respectively. If we went private, would anyone do anything? Is it even worth seeing our GP just to log with them we've had further blood tests for future reference?

[ReaCoe]

Just to add. We're very onboard with treating with lifestyle changes if this is just early warning signs and all that is needed. She's thinking of going gluten free, because we are already all gluten free at home following the two of us who got a coeliac diagnosis. she could do more to address her stress levels and it looks like she needs more improvement in her folate, ferrtin, magnesium and D3. But I don't want to do her a disservice if we should do something else and don't do it, if you see what I mean.

[SlowDragon Administrator]

She's been taking supplements to raise her ferritin and folate, vitamin D etc... 5 months later we repeated at home private blood tests

Vitamin D (25 OH) 59 (50 - 200 nmol/L)

* Magnesium 0.84 (0.7 - 0.91 mmol/L)

* Ferritin 53.00 (13 - 150 μg/L)

* Serum Folate 15.70 (8.83 - 60.8 nmol/L)

* Active B12 63 (37.5 - 150 pmol/L)

Vitamin levels are improving but still got some way to go

How much vitamin D is she taking

Exactly what B12 and vitamin B complex

She needs coeliac blood test BEFORE cutting gluten out

20% of Hashimoto's patients never have raised antibodies

Get ultrasound scan of thyroid

thyroiduk.org/get-support/t...

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[ReaCoe in reply to SlowDragon]

She tested negative for coeliac disease via the GP when her thyroid was tested. That was 8 months ago.

[ReaCoe in reply to SlowDragon]

Thanks - is having the scan a good way to be sure either way? If the thyroid isn't working properly, would it show something on the scan?

[FallingInReverse in reply to ReaCoe]

SD will also reply, but in my case - ambiguous and inconclusive thyroid numbers and negative antibodies - in other words … even by us forum members it’s unclear whether she has or will develop a thyroid issue.

Ultrasounds are helpful (for teenagers and adults alike) when other signs are inconclusive since it can show physical qualities to the thyroid (size, nodules goiters and other growths, etc) that can “diagnose” whether the thyroid is causing problems.

SD - pls correct me if I’m off on that!

[SlowDragon Administrator in reply to ReaCoe]

Ultrasound could show issues

Nodules, or granular appearance

or with Ord’s thyroiditis ….thyroid would be smaller than typical. Shrinks and shrivels up

[FallingInReverse]

Edited

Have a read of my recent post:

healthunlocked.com/thyroidu...

I also highly recco a thyroid ultrasound for peace of mind

Also - Have you tested her for EBV (Epstein Barr?)

A few posts here pop up and I’ve pieced together that my daughter likely also has symptoms from a past EBV virus and from what I read and see, I think the knock on can last a good solid year or so.

PS re antibodies

The AB test results are negative. They are under the range and that’s what matters. Yes, everyone has some, but you need an actual above range positive test to be autoimmune. You should of course always throw them into your panel when testing. They do fluctuate and change - but right now no indication that she is autoimmune or has a higher likelihood of going hypo later.

[ReaCoe in reply to FallingInReverse]

Thank you. That is very useful.

[ReaCoe in reply to FallingInReverse]

I will catch up with the history of your posts as it is interesting to compare with your daughter. Wasn't the pandemic such bad timing? We kept attributing my daughter's symptoms to the pandemic, lockdown, etc... If only that hadn't happened then, we'd have been pushing for more answers from the GP at the time.

Has your daughter been tested for coeliac? I was recently diagnosed. a so called silent coeliac but since going gluten free lots of niggly symptoms I'd put down to perimenopuase have disappeared, including migraines. I've not had one in 3 months and I was having them most weeks. My other daughter was unexpectedly diagnosed with coeliac disease when severely anaemic. No gastro symptoms at all.

[FallingInReverse in reply to ReaCoe]

Regards pandemic, I do look back not necessarily with regret - because who knew… but yes, pandemic, she was 13 years old, and those two things alone could explain all of this.

I mean - really… I will congratulate you on getting the through the 13-17 year old phase too… aren’t those girls a trip!!!!!!

Celiacs for me (and her) is the last frontier … I asked for test and they forgot and I forgot to follow up. Will, and need to, just too much to handle and so I’ve busied ourselves with frequent blood tests and vitamin optimizations. She had ferritin at 5 last year… I’ve got it up to about 20 now. Still working on that. I’ve recently added magnesium and B on top of her iron and D. (Btw - GOOD JOB ON YOUr VITAMIN SUCCESS THERE! Ours has been less stellar but going in the right direction… my niggling question isn’t the vitamins but WHY she is having trouble absorbing… )

Out of curiousity - what is your daughters supplement regimen?

I did get an at home 6 point cortisol saliva test done. Surprisingly her results were fine (ie, nothing glaring but I’m not trained up on the nuances yet so will be revisiting at some point.BUT her DHEA showed levels like a menopausal woman lol. Then again… teenagers are volatile so I’m in watch and wait mode there too.

I do have her taking her Basel temperature every morning. A good easy and free way to keep check on another vital sign : ) Her periods are NOT like clockwork so I’m in the monitor & observe phase there.

She leaves for college in about 6 weeks … flying by the seat of my pants managing my own chronic illness, dealing with that, prom, graduation, packing… and oh yeah - keeping my job through all my fog and fatigue.

I haven’t posted a formal update on either my or her last blood tests. Will, need to.

But I am also (as I sense you are too) and methodical, slow and steady person.

Sorry for the rambling … I’m also curious with your daughters weight gain - and the difference between water retention, weight, and yes - just “normal” filling out that teenage girls do when they grow into women. Neither me nor my daughter have gained weight - but just curious how much weight your daughter has gained if you want to share.

Also…. MOMMIES UNITE! We would do anything for them huh!

[greygoose]

Free T3 6.0 (3.1 - 6.8 pmol/L) 78.38%

Free T4 14.2 (12.0 - 22.0 pmol/L) 22.00%

* Free T4 14.2 (12.0 - 22.0 pmol/L) 22.00%

* Free T3 5.4 (3.1 - 6.8 pmol/L) 62.16%

OK, I'm going to tell you the way I see it, looking at her numbers. Although there's probably not a doctor alive that would agree with me!

Her first lot of private tests, the TSH was 2.38. Too high, but not very high. If we look at a euthyroid TSH - i.e. TSH of someone with no thyroid problems - the TSH wold be around 1, over 2 means that it's struggling. And over 3 is technically hypo.

Her FT4 is very low. So, why isn't her TSH higher? Well, because her FT3 is abnormally high.

Why do I call it abnormal? Because if it were euthyroid - 'normal' - it would be around 50% through the range and slightly lower than the FT4.

So, what does that mean? It could mean one of two things:

a) that she does have Hashi's, even though her antibodies are low. About 20% of Hashi's people never even have over-range antibodies and are diagnosed by ultra-sound when the damage done to the thyroid is bad enough to be visible. With Hashi's levels can jump around a lot and you will sometimes get weird results like these.

or:

b) Her thyroid is failing for some other reason. When the thyroid is failing it tends to make more T3 at the expense of the T4, just to keep you alive.

(There is a third possibility and that is iodine deficiency, but from what you say about her diet, and thyroid problems being in the family, it's probably not that.)

or: it could be a combination of the two.

So, in the second lot of private tests her TSH has gone up - probably because her FT3 has gone down somewhat. Which wouldn't be surprising because if the reason for the high FT3 is:

a) high levels are only temporary, and excess is eventually used up/excreted and the levels drop.

And if the reason for the high FT3 was:

b) the thyroid cannot continue to make high levels of T3 like that eternally. As the state of the thyroid worsens, it will make less and less T3.

Basically, now her TSH is over three, and the FT4 is still very low, she is hypo. And that would explain the low levels of nutrients because hypos tend to have low stomach acid, making it difficult to digest food and absorb nutrients. But, her FT3 being so high, it does not adequately explain her symptoms. Could be that her FT4 is too low for her needs. Or, it could be that her low nutrients are causing symptoms.

So, the best thing you can do for the moment, is keep testing regularly to see how things evolve, and in the meantime, optimise her nutrients and keep her on maintenance doses of them all. Because with these lab results I very much doubt you're going to get a doctor to give you any sort of thyroid diagnosis - not whilst the TSH is still in range, anyway. And they would consider that she doesn't need thyroid hormone replacement with those levels. And that probably goes for private as well as NHS doctors. None of them know enough about thyroid to work it out logically, looking the numbers in relation to each other. They would just see three results all in-range and say there's nothing wrong with her. I'm afraid it's a case of waiting until at least one of them goes out of range - either under or over.

All that may not be of much help to either of you, but I just thought I'd put it out there for consideration.

[sparkly in reply to greygoose]

I'm with you on this. That ft3 is far to hight to be classed as normal blood results

[FallingInReverse]

to follow on GG

Or, it could be that her low nutrients are causing symptoms.

So, the best thing you can do for the moment, is keep testing regularly to see how things evolve, and in the meantime, optimise her nutrients and keep her on maintenance doses of them all.

This part was key for me …

You’ll see when you read my last post - my “thought exercise “ was different as since I’m in the US I could actually (somewhat) easily get my daughter treated with Levo for low thyroid.

GG advice, for me, is exactly what I needed.

Talked me off the ledge, along with another person who replied to me who had been put on Levo when young, and had regrets… you have to read for yourself to get the gist of it… obvious If we need Levo so be it. but the idea that I had to give my daughters thyroid a chance…

As GG notes - vitamin deficiency CAUSES the thyroid to not work. Now, as I said - the reason for the vitamin deficiency is the million dollar question (could be hypo/hashi at the root).

So because teenage girls bodies are an absolute crazy mess! For me, even though I had nothing stopping me from getting Levo for her. I didn’t. Because it was the right thing to do (for us.)

Note - I watched my daughter’s TSH rise over the past year from about 1 to 3 to 3.5. I was horrrifed to see it, panicky, and so worried and sad for her. Awful mom feelings.

3.5!!!!

[FallingInReverse]

Me again - let me also point you to my previous posts age-based charts for TSH and free Ts.

At 17… they are slightly different than adult populations which makes your 2.xx TSH less alarming than if in an adult. That’s how I felt until my daughters TSH went to 3.5 😩

I did a ton of deep dive research over the past year on pediatric and teenage ranges/distributions of thyroid results. Was helpful.

[sparkly]

Oh I really feel for your poor daughter. She's not living a teenagers life and must be so upset with the weight gain when she's doing everything right. I imagine you've constantly been at the gp as you yourself know something isn't right.I too, straight away saw them first private bloods and know they are not normal.

Her ft3 should not be that high, not with a "normal" tsh and low ft4.

TSH 2.38 (0.27 - 4.20)

FT4 14.2 (12.0 - 22)

FT3 6.0 (3.1 - 6.8)

I too had identical results when I was so poorly before being diagnosed.

I agree with greygoose just keep on doing private bloods tsh, ft4 and really important ft3.

Something isn't right and only a good endocrinologist would see something is a miss. That's just my opinion on this. With similar happening to me putting weight on for no reason very quickly when I was young and bloods similar.

I hope her tsh goes out of range quickly and can start on medication or if something else causing issues then diagnosed quickly, able to lose weight and can start living a normal life again.

[ReaCoe]

Thanks to everyone for your comments. I'm a bit short of time at the moment to reply to replies but I will come back and do so. Thank you also for helping a mother feel validated in her concerns. I just know that something is not working properly in her body and she ought not to be struggling as she is.