So many symptoms & genetic history but tests sa... - Thyroid UK

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So many symptoms & genetic history but tests say I'm normal?

littlebluegnome profile image
14 Replies

I have multiple signs of hypothyroidism, plus multiple people in my family have it however I've been tested twice by doctors and once through Monitor My Health, all have said I was normal apart from the first test the doctor did said my results looked like I may have issues in the future(I didn't fully understand at the time but she said it looked like my body may be making extra of something to compensate for somethingelse not being processed properly?).

I have literally all but one of the listed NHS symptoms, can anyone see anything in my results that I may be missing?

Monitor My Health results;

TSH levels normal (normal range 0.27 - 4.2 mU/L) - Your result is 2.74

FT4 levels normal (normal range 12 - 22 pmol/L) - Your result is 13.2

FT3 levels normal (normal range 3.1 - 6.8 pmol/L) - Your result is 4.6

My FT4 levels look close to being low so I don't know if this would make me show the symptoms that I do?

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14 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Yes, they are low and might cause symptoms.

They aren't what's classed as a treatable level.

Might in the future.. sounds like what a doctor might say if you have thyroid antibodies. See if TPO or TG antibodies have been tested.

This shows your thyroid is being damaged by immune system.

Do you remember what time your test was. Testing at 09:00 or just before and fasting over night gives highest TSH this is what doctors look at most.

Nutrient levels tend to suffer when you begin to be hypo. This mimic symptoms so worth testing folate; ferritin, B12 and Vitamin D.

greygoose profile image
greygoose

apart from the first test the doctor did said my results looked like I may have issues in the future(I didn't fully understand at the time but she said it looked like my body may be making extra of something to compensate for somethingelse not being processed properly?).

OK, so, I think what she probably meant was that your pituitary is making extra TSH. That bit is true, but it's not to compensate for something not being processed properly, it's to stimulate your thyroid to make more thyroid hormone because you'res are low.

A 'normal' (euthyroid) TSH (Thyroid Stimulating Hormone) would be around 1. If it's over 2 it shows that your thyroid is struggling to make enough hormone and needs extra stimulation.

Your FT4 (thyroid hormone) is low, you're right, euthyroid would be around 50% through the range. But I suspect that that is not because your thyroid is incapable of making more, but because your pituitary is incapable of making enough TSH. In other words, what we call Secondary Hypo.

Why do I think that? For two reasons:

- In Primary Hypo, when the thyroid itself is failing, you would have low thyroid hormone levels - T4 and T3 - and high TSH. But your TSH is low compared to the level of your thyroid hormones: low TSH + low thyroid hormones = Secondary Hypo.

That said, what time of day was the blood draw for that test?

- Second reason: your FT3 is highter in-range than your FT4, percentage-wise. Which usually means that the thyroid is struggling. Euthyroid would be FT4 just slightly lower thatn the FT4.

So, whilst that GP had a sort of inkling that something was up, she didn't really know what or why.

Have you ever had your antibodies tested?

-

DippyDame profile image
DippyDame

Welcome...

I really dislike that word normal....in this instant it just means your result sits in the reference range.

Sadly doctors are generally clueless about thyroid diagnosis and treatments and follow unreliable information set down in NHS guidelines.

Did you test at 9am....this gives the highest TSH offering a better chance of being diagnosed/medicated!! Maybe don't mention that to a medic it's a patient to patient tip!

NHS maintain wrongly that TSH is the gold standard test...science proves it is not!

thyroidpatients.ca/2021/07/...

TSH test was designed as a diagnostic test for hypothyroidism, before medication...with a healthy thyroid this should be 1 or under. The ref range is too high

What we aim for is the point within the range where your symptoms are resolved.....your doctors are missing a vital clue!

With your results you must be feeling pretty rubbish!

TSH is a pituitary, not a thyroid hormone, it stimulates the thyroid to produce T4 and T3. Your TSH is too high!

Your FT4 is scraping along at the bottom of the range, your FT3 is better because....and I think the first doctor was trying to explain thIs... your thyroid is either failing and isn't producing enough hormone so in an attempt to "compensate" and keep you functioning it is pumping out extra T3. Or your pituitary isn't sending the correct signals to the thyroid instructing it to produce more hormone.

Unfortunately that "emergency" T3 does not usually help resolve symptoms

Your FT4 is 12% through the ref range

Your FT3 is 40.54% ditto

Both Frees should be roughly approaching 75%..so FT3 is much higher than FT4, when percentaages should be similar.

You are clearly hypothyroid and need to be medicated with levothyroxine....starting dose 50 mcg and retested and dose increased after 6 /8 weeks.

To support thyroid function we must optimise vit D, vit B12, folate and ferritin

To check for thyroid auto imune disease/ Hashimotos we check thyroid antibodies TPO and Tg

This is TUK's list of signs and symptoms of hypothyroidism and you will see there is a printable tick list which you can complete and stick under your naysayer medics

They are clearly ignoring your symptoms when in fact they should comprise a major part of diagnosis!

It may seem a lot to take in but with correct medication you should soon enjoy good health.

This will give you some info

thyroiduk.org/if-you-are-hy...

Suggest you go back to your GP and calmly explain that you are really struggling to cope (avoid sounding emotional....they latch onto that and suggest it's our imagination!!

Point out that having spoken to ThyroidUK you now understand that you are hypothyroid and will they please initiate replacement hormone treatment with levothyroxine.

I used to find making a list of points I wanted to make helped me stop squawking like a demented parrot....we learn as we continue along on this journey!

Sorry this is a bit of a rant hope it makes sense.

We are all here to help and understand the problem....just ask

PRJ20 profile image
PRJ20 in reply toDippyDame

❤️This response DippyDame - so caring and explanatory (as all of you here on TUK are ❤️) - and particularly this:

I used to find making a list of points I wanted to make helped me stop squawking like a demented parrot....we learn as we continue along on this journey!

In the past, I feel like I've invariably been more like a demented parrot (so hard not to be, when you've been met with cloth-eared medics who basically trigger every negative experience with authority figures since the year dot with their insistence of 'superior knowledge' 🙄🤔).

Now, since coming on here, I'm learning not only more about my thyroid but, how to deal with so many stressful situations (and I've got at least 3 of those on-going at the moment) with so many 'authority figures', obviously including medics/my GP practice, and I not only write everything down but, ask that [with respect] they do, too! (paper trails are good, particularly when dealing with intransigence over facts! 👍😊)

So grateful to all of you here - Thank You 😊

DippyDame profile image
DippyDame in reply toPRJ20

I actually wrote a document to go in with my med notes which provides a rough timeline ( back to age 4!!) and includes as much as possible about ongoing tests and treatments that I've had over decades. It explains why I decided to " go rogue" and to self medicate with high dose T3-only and the effect that has had etc etc.

We're fortunate to have open minded medics at my surgery but they have their hands tied behind their backs by the intransigence of the powers that be. So, I fly solo on matters thyroid.

This forum has been a life saver... I started to learn from a group of experienced and knowledgeable members as soon as I arrived here about 7 years ago... and still have very much to learn.

Without them I would never have discovered that I have a form of Thyroid Hormone Resistance and need a supraphysiological dose of T3 to stop my body from shutting down

Sharing experience and knowledge here is one way of helping to spread the existence of the appalling state of NHS thyroid care....and how we can self advocate.

Like you I'm hugely grateful for the existance of this amazing forum and to lynmynott who started it all.

Take care.

SlowDragon profile image
SlowDragonAdministrator

Get FULL thyroid and vitamin testing done

With low Ft4 and Ft3 likely vitamin levels are poor

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

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

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

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus both 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/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

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

Littlepotato profile image
Littlepotato

Thank you so much for the helpful and informative replies - it's extremely validating to know that despite the tests saying 'normal' there may still be an issue. I did my Monitor my Health test in the morning but can't remember exactly what time or if I'd eaten yet so will keep that in mind for future tests.

I'm going to order a private full evaluation with vitamins etc and see what that says. I have private healthcare through work so I'm hoping they will be more inclined to look into it than my GP. Not that I need to tell any of you this but it really would be life changing if these symptoms were treatable!

Hedgeree profile image
Hedgeree in reply toLittlepotato

Hi Littlepotato,

Are you and Littlebluegnome the same person? Just curious.

Littlepotato profile image
Littlepotato in reply toHedgeree

Yes, no idea what's going on with my account, I thought it was a bug showing the wrong name, I have no idea what's making it switch between the two. Sorry for any confusion!

Hedgeree profile image
Hedgeree in reply toLittlepotato

No worries. Just thought similar names. The forum is very good and will make suggestions to help you ☺️

helvella profile image
helvellaAdministrator in reply toLittlepotato

If you are trying to keep two names, I suggest you use two different browsers. For example, Edge and Chrome, or Safari and Firefox. And that you use two different email addresses.

Otherwise, the cookies can cause problems.

It is more awkward if you are using only a phone - where browser switching is often not quite so simple.

Basically, log out of HU as completely as possible. Close tabs/windows. Restart. Then go to one browser and login under one name/account. Then the other name on an alternate browser. And always keep to that.

Littlepotato profile image
Littlepotato in reply tohelvella

Thanks! Yes, I'm using my phone. I only want one account, not sure if I set one up a while ago without realising - the similar names do suggest it was me and I just don't remember doing it 🙈 I'll get on my computer later and see if I can sort it out

DippyDame profile image
DippyDame in reply toLittlepotato

If / when you wish more advice post the new results and members will offer an accurate evaluation.

Don't let anyone insist that you, or your results are "normal"!!

We've all been there in one shape or form!

Bearo profile image
Bearo

Some members here have reported better outcomes by taking a man with them to their face to face appointment. We shouldn’t get worse treatment for being female, but there we are.

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