Help interpreting daughter's unusual test results, thank you

[J972]

Hi everyone,

Looking for help with regards to my daughter's thyroid test results, conducted yesterday morning at 8.15am using Monitor my Health. Levothyroxine (125mcg) withheld for 24+ hours.

A bit of background first.

My daughter, who's 19, was diagnosed by GP in early July 2023 with the following results:

TSH 4.08 mu/L (0.47-3.41)

FT4 12.1 pmol/L (9.3-17.6)

TPO antibodies 201 ku/L (0-34)

Her symptoms were tiredness, mental fogginess and weight gain. All of the key vitamins & minerals were also very low and we've been working on improving them ever since.

Started on 25mcg of levo, we soon requested an increase to 50mcg.

Out of a sense of caution, GP also referred her to endocrinology who quickly arranged blood tests for late August 2023 (didn't actually see endo). Her results on this occasion were as follows:

TSH 2.88 mu/L (0.47-3.41)

FT4 12.3 pmol/L (9.3-17.6)

FT3 5.4 pmol/L (3.6-5.7) This high-in-range result is what (I think) triggered the lab to also test for the following antibodies:

Thyroid Stimulating antibody - TSI 1.92 iu/L (< 0.56)

So my daughter received a letter from the endo summarising these results and stating that she will leave it to the GP to manage.

Then, out of the blue, my daughter is invited for an endo appointment which we attend in February 2024. We requested repeat thyroid tests in advance of this appointment and the results are as follows, on 75mcg of levo at this point:

TSH 2.25 mu/L (0.47-3.41)

FT4 14.1 pmol/L (9.3 - 17.6)

FT3 5.1 pmol/L (3.6 - 5.7)

The appointment lived down to the expectations and experiences of many on here, including the endo, whilst agreeing to an increase to 100mcg, bizarrely stated that my daughter should ask her GP to check the levels in "2 weeks". I had to ask the endo to examine my daughter's thyroid which led her to confirm that it was bulky and refer her for an ultrasound (this was done in May 24 and, whilst her thyroid is indeed 'bulky', nothing suspicious was detected).

Letters from the hospital were now referring my daughter as having the diagnosis of "Graves' (with hypothyroidism)".

My daughter is now on 125mcg of levo but, from what she reports (she went to uni miles away in September last year), she is still struggling with energy levels and will routinely need to sleep during the day. She also reports having periods where in her words she feels like she has too much energy and will have to 'get it out'. This seems to be happening later in the day.

Each time I've seen her since she left for uni, I'm surprised at her weight gain. She eats really well at uni - impressively so actually - and walks everywhere, sometimes clocking up 20,000 steps a day. She doesn't 'look' well; her face is puffy and has an unhealthy pallor. I'm worried about her if I'm honest.

She's home for Easter and I persuaded her to do her first ever home finger prick test yesterday. The results are as follows:

FT4 20.8 pmol (12 - 22)

FT3 5.1 pmol/L (3.1 - 6.8)

TSH 4.09 mu/L (0.27 - 4.2)

Why might her TSH be elevated whilst her frees are a good way through range?? Could this be caused by stimulating antibodies?

Might we benefit from taking her to see a (well-regarded) endo privately? To be honest, the NHS has pretty much abandoned her which I personally find completely unforgiveable, given her age. Might she get better results on, say, NDT? Are there any other tests we could arrange privately which might shed further light on what's going on here?

Thanks ever much for reading and I appreciate any insights provided.

[greygoose]

What's going on is that she has Hashi's, so her thyroid is bound to be bulky, and her levels are bound to jump around. Sometimes she will appear hyper and sometimes hypo. But the end result with Hashi's is hypo. It's all part of the disease and there's not much you can do about it.

Her 20000 steps are unlikely to make her lose weight, nor to stop her putting it on. That, too, is part of the disease, and it's unlikely to be due to putting on fat, more likely to be water-retention. And there's nothing you can do about that, either. And no matter how well she eats, she is likely to have nutritional deficiencies due to low stomach acid and difficulty digesting food and absorbing nutrients. So, it would be a very good idea if she got her vit D, vit B12, folate and ferritin tested, and supplemented where necessary.

TSH shouldn't be taken too seriously. It doesn't move as fast as thyroid hormone levels, it takes a while to catch up. At best it's only a rough guide to thyroid status, anyway. And once one is on thyroid hormone replacement, it doesn't do anything, anyway, so just ignore it.

[J972 in reply to greygoose]

Thank you for the response.

All vits and minerals are being kept on top of by my daughter’s militant mum (me).

I hear what you’re saying about hashis causing weight/water (mucin I guess) gain/retention but I’d have thought that given she’s been in levo for almost 2 years and her frees are looking pretty good that it would be having some sort of positive effect.

Thanks again.

[greygoose in reply to J972]

It can take a long, long time to have an effect on the mucin. And sometimes it never does, I'm afraid. What I found was that I needed a super high dose of T3 to get it moving, FT3 well over-range.. And her FT3 is not that good. It's only just over mid-range. Could be a hell of a lot higher.

[J972 in reply to greygoose]

Thanks for that. I was wondering about her FT3 also, room for manoeuvre there. She’s at her dad’s right now and he messaged to say she’s fast asleep. I know she had a good 10 hours sleep last night because she’s home.

[greygoose in reply to J972]

It can do that to you.

[Hedgeree in reply to greygoose]

With a positive TSI and TPO antibody results does that mean that J972's daughter has Graves and Hashimotos at the same time?

[J972 in reply to Hedgeree]

I can answer that. Yes, it does. I’ve previously sought input from the forum about this. Apparently not super uncommon. Probably super under-diagnosed from what I gather. It’s bound to be having an effect which prompted my post and question about perhaps seeing a specialist. Many thanks for taking an interest, it’s appreciated.

[FallingInReverse]

I have a 19 (well, a few months away) daughter too : ) You can read about our in-progress journey in my previous posts.

Here are some things I’ve checked on as I’ve tried to help my daughters fatigue, etc.

|

Have you also tackled vitamin/minerals:

B12

Folate

D3

Ferritin (with CRP-hs; and full iron panel if needed)

Is she taking magnesium?

Ever tested her for EBV (Epstein Barr), Lyme disease, and did she ever get Covid?

Tested for celiacs (or us she totally fine with GI stuff?)

Have you ever, for a baseline, gotten her sex hormones blood panel done?

What were her last full blood count results?

How’s her sleep hygiene?

[J972 in reply to FallingInReverse]

hi there thanks, I recall that you’re also keeping a keen eye on your daughter.

Coeliac tested for and ruled out. All of those vitamins and minerals tested in 2023 and retested subsequently. I’m on the forum daily and am familiar with how being hypo can cause low stomach acid and the knock on effects that can have. She takes magnesium yep.

Not going down the Epstein Barr/Lyme etc route but thanks for suggesting.

Sleep is probably typical for the average uni student eg crap.

I was considering getting her sex hormones tested, thanks also for suggesting.

My main focus for now is on these thyroid results and specifically the role that Graves’ may be playing, if anything.

[FallingInReverse in reply to J972]

tagging pennyannie if any insights further on the graves angle

[J972 in reply to FallingInReverse]

Thanks for that

[pennyannie in reply to FallingInReverse]

Hello there - I did read through this post earlier and do not believe these blood test results look like Graves Disease.

The TSH is not suppressed and the T3/T4 present as someone taking thyroid hormone replacement.

I did pick up on the over range TSI and read that it can also be elevated in cases of Hashimoto's - which I believe is the diagnosis already in place with this young lady.

healthline.com/health/tsi#p...

[J972 in reply to pennyannie]

Thanks very much for sharing that article, I’m not convinced by the Graves with hypothyroidism diagnosis either. Initially I was because I was ignorant about how thyroid levels can fluctuate in early stages of Hashimoto’s.

[SlowDragon Administrator in reply to J972]

Coeliac tested for and ruled out.

But has she actually tried strictly gluten free diet for at least 6 months

and similarly tried dairy free (and lactose free Levo)

All of those vitamins and minerals tested in 2023 and retested subsequently.

What vitamin supplements is she taking

What are most recent results

Levothyroxine brands

Does she always get same brand Levo at each prescription

[FallingInReverse]

a couple of my fave illustrations for antibodies. Not sure it will help your analysis, but I find them very helpful to understanding ABs at all.

Abs

[FallingInReverse]

and this one too.

Abs

[J972 in reply to FallingInReverse]

Thanks very much.