My 18 year old, one year later.... need all your wisdom and advice pleeeeease!

[FallingInReverse]

Hello all, my favorite wise forum friends! Long post, but here it goes. Nothing like a slightly desperate mom to just lay it all out there!

Can you believe I have been patient for a whole year! Optimizing vitamins! Which has been tough watching my girl be tired all the time, and dipping in and out of limiting fatigue and regular headaches, all while in her first year at university. Periods irregular. Recently have identified random very high/jumpy heartrate... POTS-like when she gets up sometimes (like from 80 to 150 in a minute upon standing). Sometimes she's doing "better" (I know she's working hard, and seeing her friends) but she's never "good" and is truly tired all the time. She describes that familiar body-shutting-down fatigue feeling that we all know so well.

1 year ago I wrote this: healthunlocked.com/thyroidu...

All gave advice that I took, and would love your and EVERYONE'S input.

Please help!!!!

QUESTIONS:

* What would you do?

*  Buddy195 had suggested a 3 month trial of levo a year ago... I'm about ready to try it at this point... I know it's important to find out WHY her numbers are the way they are.... but in any case, they are LOW and I'd sure love to replace her thyroid hormone to help her.  LynLyn Your comments stuck with me... any life experience to share now?

* Fluctuations over time... early signs of a failing thyroid? Or could it just be ferritin? Or something else entirely?

* Conversion has taken a hit... will prob add selenium now but can't imagine it would actually fix the intensity of her symptoms (???)

* I'm pursuing an iron infusion to bring her ferritin up... it's hard (even in the US!) to find a knowledgeable dr. but still trying. I want to address this in ANY case, as it needs to come up. But not convinced it's the CAUSE... possibly an effect of low thyroid impacting absorption.

* Her low TSH of 1 is throwing me off.... pituitary?? temporary?? Or actually NORMAL???? I may look to get a pituitary scan, but can't imagine it's that. Despite... her Free Ts are still on the low side. Is it  SlowDragon or  greygoose who has had advice on secondary hypo?

* IS THERE ANYTHING I HAVEN'T TRIED???? It's hard to wait. It's hard to watch her be so down.

BLOOD TEST RESULTS HISTORY - see picture.

HEALTH HISTORY:

* No diagnosis, No antibodies

* Thyroid scan last summer all normal

* No celiacs

* Did 6 point saliva cortisol a year ago and nothing stood out to me; Have done sex hormone panel and nothing stood out. Both of these I've concluded are not the CAUSE but could be impacted by low thyroid... or low ferritin.

* Supplementing 2x Thorne b complex a week, 5000 D+K daily, and we've moved key vitamins to near/optimal; results since May 2024 have been between:

B12 - 550-730

Folate - 10-20

D - 40-55 ( ng/mL so this is optimal)

Also takes magnesium daily

* Supplementing 2x Three Arrows weekly... Circulating iron and FBC is absolutely Goldilocks perfect; remaining problem... ferritin, although improving from 5 to 35, is still too low.

Thanks to everyone as always.

[arTistapple]

I have started thinking seriously about arranging private testing for my daughters - although they are both approaching menopause! I totally understand your distress. We don’t want this nonsense for our daughters!

Your post brings back extremely unpleasant memories of being 18 and thinking you are going mad, unable to fulfil your potential etc because of this lousy interference.

It almost does not matter whether it’s central or acquired, or indeed any other reason! She looks like she definitely needs help, plus we know this is unlikely to be straightforward. However she is lucky to have such a Mother with such understanding. She is not alone.

It seems to me you are on the correct road. You recognise she needs help. It’s a matter of finding it.

You are in the States. What about Bianco? Honestly I have thought of flying over there to see him (I may yet do that) myself, such is my frustration at treatment in the U.K.

However it’s that ‘preloading/upfront’ level of attention that seems to be required everywhere. It’s the multiple changes necessary until the sweet spot is found that I find is a huge barrier to good treatment. There are no practitioners doing this that I can find.

I think it’s even worse worrying about a loved one in this circumstance. You have completed a great history for her. Admirable.

[FallingInReverse in reply to arTistapple]

It seems to me you are on the correct road. You recognise she needs help. It’s a matter of finding it.

You are in the States. What about Bianco? Honestly I have thought of flying over there to see him (I may yet do that) myself, such is my frustration at treatment in the U.K.

Hi! Thank you!

So I was thinking … as we know, the one good thing about an underactive thyroid is that no matter the reason, the treatment is the same: Levo.

The one hesitation over the past 2 years is whether it was transient. As time goes on… I’m more willing to take a chance and start Levo with the idea that one day she can consider weaning off (I know, I know…) but that I want to get her feeling functional and through university right now.

But once I make a decision, I’m in the US, and can likely find a way to get her a Levo prescription.

That being said. If it was you, would you look for a Bianca (long shot)… or just put her on Levo…?

[arTistapple in reply to FallingInReverse]

Ooh lots of quality advice posted now for you. Quite a few more decisions revealed to you. I get what you say about getting her on Levo. It’s a critical time for her - and you know it’s unlikely to be plain sailing. I managed to scrape into my last year at Uni but just could not go back (at that point). Not ideal. Lots more self criticism to add further to my distress at the time and a long time after. Scans and ultrasounds much less expensive than they used to be. However you can wait a long time for interpretation. But it’s all available! Is she onside? I think that’s critical.

Your wisdom and knowledge will be hugely important. BUT her opinion will count enormously. It’s such a delicate subject.

[FallingInReverse in reply to arTistapple]

I know, right! What an incredible bunch of replies.

One of HB’s links indicates that in any Central Hypo case, the adrenals need to be looked at before starting Levo to avoid an adrenal crisis.

So I am now in the mindset - rule out or rule in a CeH diagnosis. If it is, great. If it’s not, I’ll have a few more blood tests for trending and can answer the Levo question at that time.

I should be able to wrangle a scan and the ACTH test through whatever hoops I need to jump through. I don’t need a knowledgeable doctor right now (if they even exist)… just one that will write a prescription for a scan! I can take it from there once I have the diagnostic tests. Not easy, but clear next steps.

I will read your comments to my daughter. She is really pushing, working hard, and knows that I am focused on finding her an answer. The last doctor I talked to about her briefly concluded with a “and you know, it could just be anxiety and depression and some things you never know.” OK!!! But you and I both know her symptoms are real and she’s not just a complaining teenage girl. How far out medical professionals have fallen, how dangerous their egos are.

[greygoose]

Why can't you imagine that it's Central Hypo? Why shouldn't it be the pituitary that is failing rather than the thyroid?

Were all these tests done before 9 am? If so, then it very much looks like Central Hypo because having a TSH of 1.2 with an FT3 of only 5.9% through the range makes no sense otherwise. Low ferritin may slightly reduce TSH levels but even so, with an FT3 that low, the TSH should most definitely be higher. And a TSH of 1.2 may be euthyroid, but an FT3 that low certainly isn't. So, whichever way you look at it, that TSH is not right. Ipso facto: pituitary/hypothalamus problem: Central Hypo. And the low ferritin is the result, not the cause. That's what I'd put my money on.

[FallingInReverse in reply to greygoose]

I thought central hypo was more rare, and so thought it unlikely. I also look back to her higher TSH results and didn’t know if that disproved it. I will say, there’s been no head injuries.

I also know/think that an ft4 of 50% can be seen as normal (?) for a euthyroid person, so then wondered if it was just a conversion problem.

I will sheepishly note, that the last few tests were in the afternoon… her classes start early and with her fatigue there is no waking up early to get blood before. I’ll edit the post, should’ve mentioned that.

Once when I was analyzing my 80 year old moms bloodwork I researched the circadian rhythm of TSH and remember thinking it wasn’t more than a few tenths… but I know we can’t really know the impact.

That being said, GG, the million dollar question (as we say here in the US) is… to Levo or not to Levo!

I was thinking … maybe try to get her started, while I also pursue a pituitary US.

[greygoose in reply to FallingInReverse]

Doctors would like you to think Central Hypo is rare - perhaps they even believe it - but it does cut down on the number of people they're forced to diagnose. Call me a cynic if you like, but I'm willing to believe that at the base of this belief is the desire to diagnose as few people as possible. But, if you read on here for any length of time, you'll see that it's not as rare as all that! The pituitary is only a gland, after all, not a super power, and glands can go wrong. And head injuries are not the only cause. She could have a benign tumour on her pituitary, or a malformation of some kind.

However the last two tests being in the afternoon could paint a different picture. But I doubt it. Her FT3 is so very low. And even if it were 'just' a conversion problem, her TSH should be higher, even in the afternoon. But, if her problem is a conversion problem there's not much point in putting her on levo, because she won't be able to convert that, either. And, remember, conversion is also controlled to some degree by the TSH.

And it's not just a pituitary scan that is needed. If the problem comes from there, all her other pituitary hormones are probably also low. So, they need testing, as well. But a scan would be a good start.

[FallingInReverse in reply to greygoose]

And it's not just a pituitary scan that is needed. If the problem comes from there, all her other pituitary hormones are probably also low. So, they need testing, as well. But a scan would be a good start.

Right. Just re-read my Google search results, and I know all these symptoms overlap…. But this is a darn good hypothesis. A good match for the symptoms and nature of those symptoms.

I feel enlightened! Thank you for making me smarter : ) Thank you for knowledge that will help my daughter. She would be suffering in the dark for years without your input.

I am going to pursue:

- follow up thyroid US

- a first pituitary US

- I’m going to look back at her sex hormone tests with fresh eyes.

- I see the pituitary makes ACTH, so will prob do another 6-point cortisol with her, and maybe try to do the next level follow up with whatever one does with ACTH.

[greygoose in reply to FallingInReverse]

Well, the ACTH itself should be tested for a start.

[LynLyn]

Dear FallingInReverse Your daughter is very lucky to have you!

This forum has saved my life (literally) and you’ve been given wonderful advice. I wish you all the best - your plan above sounds great.

Myself, I’m looking at visiting a metabolic doctor in Greece. I’m hoping for a different perspective on my symptoms and some good advice to move forward.

[humanbean]

Since your daughter has had quite a few low results for her nutrients it would be a good idea for her to test once a year from now on and keep her nutrients optimal for the rest of her life.

I think I have Central Hypothyroidism (CH), although I am self-diagnosed. It can take a very long time to get an official diagnosis in the UK, because doctors are convinced it is really rare, so they don't test for it, thus making it appear even more rare.

I don't know what the USA is like when it comes to diagnosing CH. You might have to really push to get your daughter scanned and tested.

Anyone who thinks CH is a possibility should get tested for it - it isn't a benign condition. The number of things that could go wrong if it is left untreated is enormous. For the sake of your daughter's quality of life don't wait for testing. Be proactive and push for it.

Some links on CH that you might find helpful :

endocrinologyadvisor.com/dd...

edm.bioscientifica.com/view...

thyroidpatients.ca/2021/05/...

bestpractice.bmj.com/topics...

pituitary.org.uk/problems-w...

thyroidpatients.ca/2020/01/...

pmc.ncbi.nlm.nih.gov/articl...

karger.com/etj/article-abst...

my.clevelandclinic.org/heal...

endocrinepractice.org/artic...

[FallingInReverse in reply to humanbean]

HB - golden! Have read them all and going back to make notes for my action plan.

QQ - so regards to imaging, do I need just an US for the pituitary… or maybe it’s actually an MRI… maybe you can’t US the pituitary bc if it’s location?

Ultrasounds, mri, cat scan, X-rays…

What do you know?

Reading those “missed diagnosis” articles are tragic. Sometimes I think that the greater purpose in my getting sick is that if there is something actually wrong with my daughter’s thyroid or pituitary, I have now saved her from being another story like that.

I got her first blood panels and FBC in March 2023. Was told to take iron pills for a few months then “all good”! An under-range ft4 and yet… “nothing to see here!” I was diagnosed Aug 2022, suffered on the wrong dosing until I found this forum for myself in Aug 2023, and by Oct 2023 got my daughter the bloods she needed. It blows my mind how in the dark I would be without you guys.

[FallingInReverse in reply to humanbean]

Quick follow up - I’ve found a way to get her pituitary imaging.

I’m very happy with this as a next step … if there is a physical something wrong with her pituitary then that’s something I really want to know asap!

If not - then at least I’ll have another 1 (or 2) thyroid panels done in the time it takes to get the scan and results. Who knows what surprises future blood test may hold!