Am I safe to trust TSH only results? - teen

[Megaloo]

I've asked this on an older original post, but asking again here in case it gets more traffic - I hope this is ok.

Our 14 yo is suffering with extreme anxiety (showing as racing heart and palpitations, sweating, general aches and pains and general anxiety - no weight loss and I think sleep is ok once she gets to sleep).

I asked GP for thyroid tests as whilst unlikely at her age, I thought sensible to double check. He agreed it is a good idea. They only did TSH (sadly).

Her results are 0.87 (levels 0.51-4.3) which looks safely inside the range to me - but am I right? Can I check with those on here much more knowledgeable than me that I shouldn't go back and ask for T4/T3 too, to be on the safe side?

I don't really want to get her hopes up that there's a medical explanation (obviously I know this wouldn't actually be a good outcome, but in her mind it would be) as I assume it's pretty unlikely.

Any thoughts/advice?

TIA

[SlowDragon Administrator]

Definitely need thyroid antibodies and vitamin D, folate, B12, ferritin levels tested

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Autoimmune hypothyroid disease frequently starts with transient hyperthyroid type symptoms and results before becoming increasingly hypothyroid

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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

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

[Megaloo in reply to SlowDragon]

many thanks

[humanbean]

Personal anecdote, which might or might not be relevant to your daughter...

I had problems with below range serum iron and very low in range ferritin (iron stores) and I was also extremely anxious. I struggled to get a prescription for iron supplements from doctors (I succeeded just once) and I ended up buying my own supplements without prescription. I also did a private iron panel with finger-prick blood testing. Massively improving my iron and ferritin levels made my anxiety disappear, and also reduced my depression quite a lot.

If getting an iron panel done interests you...

The problem you will have is that your daughter is only 14, and few private testing companies will test people under 18.

I've read that Blue Horizon Medicals (BH) will test under-18s, but have never needed to find out if that is true (I have no kids.). This is their version of a finger-prick iron panel :

bluehorizonbloodtests.co.uk...

Which Tests are Included in the above test package? Iron, TIBC, Transferrin Saturation & Ferritin

It would be better with a CRP test included as well, but BH doesn't offer that.

It would be worth checking with BH that they will do a test for a 14 year old, before spending a single penny.

I don't really want to get her hopes up that there's a medical explanation (obviously I know this wouldn't actually be a good outcome, but in her mind it would be)

As someone who also wanted doctors to find what was wrong with me over several decades and it so rarely happening I understand what your daughter is going through. If someone feels awful and doctors don't find the cause then they have no guarantee that they will ever be well again, and that is an awful feeling to have.

I've been told by doctors in the past "Good news, Mrs X, your test results all came back normal". Then doctors just sat their expecting me to look happy and then get up and leave their office, but they pretended they couldn't understand why I wasn't happy. It was because I knew I wasn't going to get an answer and a cure for whatever ailed me. Instead what I got was zero compassion, zero belief, and zero help from many different groups - family, friends, colleagues etc. And there was so much gaslighting too!

[FallingInReverse]

My daughter also would welcome a diagnosis… ANY diagnosis, as then she could feel hopeful there was a course of treatment…

My daughter is 17. She has so many complaints that make me think she has what I have (hashis). Her blood tests are ambiguous, but don’t really look good. Although it really is a big black box - I truly have no idea how this story will end.

BUT this forum has given me excellent advice. Which is - regardless of whether one day my daughters thyroid numbers start to trend better or not,… the very first thing I need to do is optimize her key vitamins and minerals.

So I have tested her (I’m in the US, so I think different than UK) . And I have spent the last 6 months improving her iron/ferritin, vitamin B, and have added magnesium.

I am also going to reply with a couple charts that I found when deep diving on my daughter’s situation. Specifically, pediatric ranges for thyroid are slightly different than adult ranges. I found it very helpful when trying to understand her results.

[humanbean in reply to FallingInReverse]

I have spent the last 6 months improving her iron/ferritin, vitamin B, and have added magnesium.

Were her results low when she was first tested? And does she feel better now that she has been improving her levels?

[FallingInReverse in reply to humanbean]

In October ‘23

Ferritin 5 (7-271)

Iron 48 (50-170)

Supplement: 2 Three Arrows a day (I think, from memory)

December ‘23

Ferritin 16

Iron 210

Supplement: Reduced to 1 Three Arrows every third day (about twice a week)

March

Ferritin 22

Iron 125

Symptoms

I observe patches of improvement. She is still fatigued but I can see her functioning more steadily. And to be fair - her Ferritin is still only 22!!!

I have been a little scientist with my and her Three Arrows. I’ve seen how differently we both absorb! And I give myself a big gold medal for now keeping her perfectly in range for iron while steadily improving her ferritin: )

That being said, in the last 6 months her TSH has risen… which I wrote a post about and I am setting aside my extreme worry there while I continue on her Three Arrows, improve her D, B (B12 spray + Thorne B complex) and she’s now taking magnesium. I just got her a Thyroid US which showed nothing obviously abnormal, and have an endo appointment for her in about three weeks.

Im worried she has a thyroid problem, her TSH is creeping up to statistically worrisome levels. but of course it’s a little like a Rorschach test, right? Also - no antibodies at this point. Plus she’s so young - why would it statistically pop up now?

I got her first bloodwork in March ‘23. That was 6 months AFTER I was diagnosed and 6 months BEFORE I found this forum. The more I learned about myself here made me go back to her March bloodwork with totally new eyes. Of course the pediatrician said “nothing to see here!” Instead I’m fortunate to have a history of all her Ts and key Vit/minerals.

Incidentally, the hardest thing for me this past month was NOT putting her on Levo. Knowing it would raise her Free Ts. But this forum talked me off the ledge… said, give her a little more time, optimize vitamins and give her thyroid an environment where it has a chance to work.

Step at a time. Pretty stressful! Thanks for asking.

[humanbean in reply to FallingInReverse]

That being said, in the last 6 months her TSH has risen

This could mean one or both of the following :

1) Her thyroid has become more damaged and her thyroid hormone levels have dropped, and her TSH has risen as a result.

2) Poor levels of nutrients can reduce the pituitary's ability to produce TSH, even when more is needed. Improving the nutrient levels can increase TSH even when the thyroid hormone levels haven't actually changed.

[humanbean in reply to FallingInReverse]

Assuming the reference ranges are the same as the first ones you gave the latest iron/ferritin results are better than they were, but are still not great. The ratio of iron to ferritin is also poor.

Ferritin 22 (7 - 271) 5.68% through the range

Iron 125 (50 - 170) 62.5% through the range

Do you have any results for Vitamin B12 or folate? If either or both of these are low and they are improved they might alter (in a good way) the ratio of iron to ferritin. But to do this the right forms of B12 and folate supplements are required.

[FallingInReverse in reply to humanbean]

Thanks HB

Same ranges yes.

As for Bs : B12 at 502 (211-911) and Folate 20.2 (>5.4) in the March’24 test. And October’23 : B12 374 and Folate >24

AFTER the March’24 test I started her on BetterYou B12 spray and a couple weeks later the Thorne B complex 2x a week.

Can you explain your point #2 re TSH:

Does that mean that… as nutrients improve, her TSH rises… but it might be a response to the vitamins optimizing… so… maybe it will fluctuate down when things reach more of a stable state?

Of course I hate seeing that TSH go up. But also know she’s 17, and maybe I just know too much by testing so much, and her hormonal teenage body will level out as she gets older.

Can she have a 3.4 in March ‘24, from 2.7 in October’23 and 1.2 in March ‘23, and still gave hope this isn’t a one way lifelong thing.

Or maybe … cortisol or sex hormones. I actually just had her do a cortisol test yesterday so will mail that in and see what it tells me. It was a 6 point saliva and includes DHEA I think.

It’s killing me as a mom : ( literally could cry writing those TSH numbers.

[Jaydee1507 Administrator in reply to FallingInReverse]

Please start your own post if you need recommendations for your daughter. Its unfair on the member that started this post to piggyback it.

[FallingInReverse in reply to Jaydee1507]

Will do, although I do hope the OP Megaloo will also see value in other mom’s story managing a teenager through ambiguous test results.

There are a few of us posters here who post about their teenagers, and I find value in all of them.

Megaloo, please keep us posted on progress. It’s a long haul and lots of steps to navigate and discern “normal” teenage girl behavior amidst potential hormone issues!

[FallingInReverse]

Assuming your daughter’s test result units are aligned to the below , you can visually see that at 14, there is a big cluster of her peers that are below 1. It’s actually a pretty even distribution between 0.5 - 2, which isn’t always the case for tween/teens as the chart shows.

This would give me more confidence to do a vitamin work up first, while also doing what you can to also try to get a full thyroid panel. But for me in a similar situation, I’m doing vitamins first too.

Pediatric tsh chart

[FallingInReverse]

If you do end up getting TSH, FT4 and FT3 together, this chart will be helpful. A point is made that given the general lack of understanding of how children’s ranges are different, it can easily lead to mis-diagnosis. Make sure to tap the image to see the whole thing.

Pediatric chart

[Megaloo in reply to FallingInReverse]

Many thanks for this

[AKatieD]

Even if g.p. asks for proper thyroid tests including free T3 and T4, the lab may just not bother. This happened with many of us, so you can easily obtain your own tests and then come back here for help interpreting.

More info here

thyroiduk.org/testing/thyro...