Help needed with daughter's "normal" TSH result... - Thyroid UK

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Help needed with daughter's "normal" TSH results please.

Gertrude7 profile image
18 Replies

Hello everyone. I was hoping someone could help interpreting my daughter's recent thyroid function test please. TSH 3.83 mu/L range (0.25 - 4.20)

Free T4 9.4 pmol/L range (11.0 - 25.0)

The test was requested by Dermatology at the local hospital after i pushed my daughter to ask. (She's had a few thyroid tests over years by GP which always come back "normal"). She has shown symptoms for years ; weight gain, fatigue, skin problems (very slow to heal), low mood. She is now at the stage where she can go to bed at 8pm and sleep till 10 or 11 am and finds it very difficult to function normally.

By way of background, I was diagnosed with under active thyroid (and have been on levothyroxine) for over 10 years and my other daughter has Hashimotos.

Any advice would be gratefully received.

Many thanks.

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Gertrude7
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18 Replies
SlowDragon profile image
SlowDragonAdministrator

How old is she?

Yes clearly hypothyroid…her Ft4 is below range

She needs to get retested including thyroid antibodies, vitamin D, folate, ferritin, B12

ALWAYS test early morning for highest TSH

Presumably you have Hashimoto’s too

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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 and last dose levothyroxine 24 hours before test

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

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Gertrude7 profile image
Gertrude7 in reply toSlowDragon

Hello SlowDragon and thanks for your reply and the information/links. My daughter is 38 . I should have said that the Dr said in his letter that TSH was "normal" and the T4 was "slightly below normal" and suggested re-testing in 3 to 4 months. Am I right in thinking that TSH although "in range" at 3.8 should really be under 2? Any suggestions on how to argue the case for a trial of thyroxine would be appreciated. As for myself, I've never been told I have Hashimotos, just underactive thyroid.

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toGertrude7

Suggest she request vitamin levels tested NOW via GP

Likely to have low vitamin levels as direct result of being hypothyroid

When hypothyroid we develop low stomach acid and this leads to poor nutrient absorption, low vitamin levels as direct result

Next thyroid test - early morning, fasting only drink water between waking and test

Gertrude7 profile image
Gertrude7 in reply toSlowDragon

I'll ask her to get on to GP re vitamin testing. Also, we'll try the dermatologist who requested thyroid blood test (at daughter's request). Thanks for all the information. It really does help (and I'm sure others on here feel the same) give confidence to push against the system.

SlowDragon profile image
SlowDragonAdministrator in reply toGertrude7

As for myself, I've never been told I have Hashimotos, just underactive thyroid.

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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)

Previous post

healthunlocked.com/thyroidu...

Strongly recommend you get FULL thyroid including antibodies and vitamins tested ……privately if necessary….8-10 weeks after increasing levothyroxine to 100mcg

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

greygoose profile image
greygoose

So, what time of day was the blood draw for this test? That is very important, because doctors only tend to look at the TSH, they don't know any better. And TSH is highest before 9 am. It then drops sharply until midday, when it is at its lowest, and then slowly rises again in the afternoon. You want it as high as possible.

Unfortunately, doctors know very little about thyroid. They do not know that a euthyroid - i.e. without any thyroid problems - TSH is around 1, never over 2 and you are hypo when it gets to 3. But they like it to be at least over-range - preferably over 10!

As for the FT4, given that a euthyroid FT4 would be around mid-range - i.e. with that range, 18! - at 9.4 your daughter's is very low, not slightly below 'normal'. And that just goes to show how ignorant they can be! Your daughter is very hypo but the TSH is not reflecting that. Which, to my mind suggests a problem with the pituitar - TSH is a pituitary hormone, not a thyroid hormone - or the hyperthalamus. What we call Central Hypo. But, I doubt your doctor has ever heard of that. Sigh.

So, some mugging up to be done before the next test and confrontation with the doctor! At least one of you should know something about thyroid. :(

Gertrude7 profile image
Gertrude7 in reply togreygoose

Thanks Greygoose. The blood draw was around 1.30pm (the appointment was with dermatology at the hospital). "suggests a problem with the pituitar - TSH is a pituitary hormone, not a thyroid hormone - or the hyperthalamus" - I'll have to do some reading up on this. Maybe we should push for a referral to endocrinology?

Thank you again for your advice.

greygoose profile image
greygoose in reply toGertrude7

The blood draw was around 1.30pm

OK, so the TSH was at its lowest. It would have been higher before 9 am - possibly even over-range.

Even so, one would expect a TSH much higher than that, given that very low FT4. So, yes, I'm still thinking Central Hypo.

You should press for an endo appointment, but chose your endo carefully because they're not all created equal! Maybe ask on her for recommendations for an endo who knows about Central Hypo in your area - by PM, of course. We can't mention doctors' names on the open forum. :)

Gertrude7 profile image
Gertrude7 in reply togreygoose

Thanks for the information. We'll do some reading up today and come up with a plan. The advice from everyone on here is much appreciated.

greygoose profile image
greygoose in reply toGertrude7

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply toGertrude7

TSH is lowest after lunch

Highest early morning

TSH quite likely over 5 if tested at 8.45am

GP should be retesting thyroid levels 6-8 weeks time as Ft4 below range

Book early morning appointment, and only drink water between waking and test

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Gertrude7 profile image
Gertrude7 in reply toSlowDragon

Thanks again for all the information SlowDragon. This is all a real learning curve and I wish I'd made more of an effort to understand it all years ago instead of just accepting the Dr receptionist's "normal" reply to my results enquiries.

SlowDragon profile image
SlowDragonAdministrator in reply toGertrude7

Come back with new post once you get full thyroid and vitamin test results for your daughter and also another post for your own test results

SovietSong profile image
SovietSong

That t4 is not “just below normal”.It’s not even inside the range,that Doctor is an idiot.Fatigue,weight gain and slow healing wounds all hypo symptoms.Gather all the information you can from the admins on here because what the GPs know about thyroid you could write on the back of a postage stamp.

Gertrude7 profile image
Gertrude7 in reply toSovietSong

Thanks for your reply. I do intend to use my day off tomorrow to look at the information everyone has been kind enough to give and put together a plan 🙂.

rosael56 profile image
rosael56

I have a very similar situation. My TSH is within range (just) and T4 is below range. I've been advised the same - retest in 3 months.

I can't help unfortunately as I'm in the same boat but if your daughter gets anywhere with a diagnosis or treatment, I'd be interested to hear.

Gertrude7 profile image
Gertrude7 in reply torosael56

We'll let you know. Thanks for your reply.

SlowDragon profile image
SlowDragonAdministrator in reply torosael56

rosael56

You also need to get vitamins tested now

At next thyroid test…make sure to book early morning, ideally just before 9am, only drink water between waking and test and get thyroid antibodies tested as well

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