Me again! I need help before GP calls - Thyroid UK

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Me again! I need help before GP calls

KayS68 profile image
15 Replies

Hi again!

Thyroid results back in. Easier to post photos. The TSH is almost out of bottom of range & FT4 has increased, but JUST into range. I feel like shit. My thyroid has bend painful again, and GP was worrying I might be going back to hyper (where it started with thyroiditis in Feb). Concerned he’ll take me off thyroxine (he put me on as a trial 2.5 months ago - still at 50mcg).

Now also - it has been mentioned that I could have central / secondary hypothyroidism. But obvs GPS won’t look for this (think horses, not zebras). I’ve read up on it a bit but I don’t know enough.

The other thing is - with pituitary disorder, usually tumour involved. I recently had brain mri & none. BUT the did find an “arachnoid cyst” but it didn’t say it was on/near my thyroid & said it was on no clinical importance. I guess I’m just so confused & maybe grasping at straws.

I’m honestly considering saving up to see a private endo - but I’m not working!

GP is going to call this afternoon & then he’s going away. I just don’t want to be left feeling this shit. Am I going hyper? In which case should I stop thyroxine? Any suggestions really welcomed. Sat here in tears!

TSH result below. I’ll post FT4 as comment. X

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KayS68
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KayS68 profile image
KayS68

Can’t post image in reply so here are FT4 results.

Range is 12 - 22

5 Feb 26.6

7 Feb 27.9

25 Feb 15.8

24 March 11.4

27 April 11

2 June 11.3

13 July 10.9

18 Aug 12.1

KayS68 profile image
KayS68

GP just called - I mentioned central hypothyroidism & FT4 optimal in upper 1/3 of range. As I’m still getting hypo symptoms, he’s increased thyroxine to 100mcgs. Checking up in a month. Hope this helps!

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

Don’t increase from 50mcg to 100mcg in one go ....increase to 75mcg for 4-6 weeks before increase to 100mcg

Obviously you need vitamin D, folate, ferritin and B12 tested too

KayS68 profile image
KayS68 in reply to SlowDragon

Oh forgot to mention - I spoke to him about those tests too - but I asked if I should wait as I did begin taking iron, b vits & folate & D3 - I’m going to get them tested after I next speak to him.

Is it too much to increase by 50mcg?

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

Have you had BOTH TPO and TG thyroid antibodies tested?

KayS68 profile image
KayS68 in reply to SlowDragon

Just TPO & TSH antibodies - both negative. The endocrine surgeon said TG was if they suspected Grave’s or if TPO was high? Is that right?

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

NHS won’t test TG antibodies unless TPO antibodies are over range

But a significant minority of Hashimoto’s patients only have high TG antibodies ...obviously they struggle to get Hashimoto’s diagnosis

healthline.com/health/antit...

20% of Hashimoto’s patients never have high thyroid antibodies

Ever had ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Suggest you test thyroid antibodies and vitamins soon ...or certainly at next test

Yes many people would find increase from 50mcg to 100mcg in one go too much

KayS68 profile image
KayS68 in reply to SlowDragon

Ah ok. I’ve had a thyroid scan - multinodular & a couple were suspicious, but different scan they said they’re fine & didn’t need FNA. It wasn’t atrophied, it was a bit swollen

I’m going to look at private antibody tests.

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Medichecks often have special offers, if order on Thursdays

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

So that suggests Hashimoto’s....

Nodules and slight swelling = likely Hashimoto’s

Atrophied thyroid = Ord’s thyroiditis

en.wikipedia.org/wiki/Ord%2...

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

Here’s a typical post illustrating only high TG antibodies

healthunlocked.com/thyroidu...

KayS68 profile image
KayS68 in reply to SlowDragon

Oh he also agreed to look at FT3 in next tests TPO as I mentioned the FT4 not really following what TSH is doing & he agreed.

DippyDame profile image
DippyDame

Five months ago you posted the following results

TSH 1.72 (0.3 - 4.2) normal

FT4 11.4 (12.0 - 22.0) slightly low

FT3 4.2 (3.1 - 6.8) normal

Your TSH was on the high side....ideally 1 or below

Your FT4 is not "slightly low" it is far too low at -6.00% through the ref range

Your FT3 is just within range that is not "normal" it is only29.73% through the ref range

Both Frees should be close to 75% through their respective reference ranges

Normal is what makes you feel well not a number in a ref range!

You are hypothyroid and need appropriate medication

Your doctor appears to be struggling to find answers......most of them are poorly educated in things thyroid that is why over 100,000 people have arrived here desperate for help.

If you are hypo you cannot become hyper...

You certainly need that increase from 50mcg though I 'm surprised he didn't add just 25mcg to begin with test again and add another 25mcg. This would give the body time to adjust to a smaller increase first. Suggest you add just 25mcg for the first 2 weeks .

You must not stop the thyroxine it is a replacement hormone which the body needs to function properly when you get the correct dose your symptoms will ease.

Feeling anxious and depressed is a symptom of undermedication

But, be patient, it doesn't happen overnight it will take time but take some solace in the fact you should now slowly start to improve

I, and many others here, have been where you are now....feeling dreadful, barely able to function and with medics who were clueless. With help from experienced members that is under control now

Don't waste your money on a private endo......the experts are here!

Post any concerns you have and members will offer help.

KayS68 profile image
KayS68 in reply to DippyDame

Thank you. I really appreciate all the insight you guys here are giving me. I can’t bear feeling so shit & not understanding it with this mess of a brain is getting to me too (my son who’s 22 thinks it’s funny that I can’t remember words for things - I’m finding it terrifying).

I think the “hyper” mix up might be mine because this initially started with me being in thyrotoxicosis with acute thyroiditis - then the endocrine surgeon said that may well happen again. So i was never “hyper”, just similar symptoms & bloods / if that’s the right way to explain it. Lol.

I tried calling GP back but he’s away now for 3 weeks - should I just split the pills for now?

I also really appreciate you saying not to waste my money on a private endo - £300 for the one who would be my nhs endo if I was referred and I hugely appreciate all the advice & support

I really feel that my other medical issues are used to mask this too - so them thinking how much of this is my peri menopause or my intractable depression. It’s only been 7 months but it’s really taken it’s toll on me. And I feel so bloody dramatic saying that.

Thanks again, this has reassured me so much.

SlowDragon profile image
SlowDragonAdministrator in reply to KayS68

Just cut the 50mcg levothyroxine in half ......to add 25mcg

After a few weeks, probably 6-8 weeks..increase to 100mcg

Depression and anxiety and brain fog (lost words) are all common hypothyroid symptoms

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