Consultant review on tomorrow. Latest bloods. A... - Thyroid UK

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Consultant review on tomorrow. Latest bloods. Any comments gratefully received, thanks ๐Ÿ˜ƒ

Slappiduck profile image
Slappiduck
โ€ข19 Replies

Free T3 3.3 (3.5-6.5)

TSH 0.73 (0.55-4.78)

T4. 8.1. (10- 18.7)

I am currently taking 10mcg T3 am 5mcg T3 pm and 100mcg levo.

Symptom wise my energy levels went up, brain fog reduced, constipation improved following the additional 5mcg T3 but my weight is not shifting. My periods have become much lighter though ๐Ÿ˜ฌ I have also noticed a Reynaurds type phenomenon especially with my fingers.

I am having physio for back problems and he has asked the GP to refer me to a rheumatologist.

These are my bloods on 10mcg T3 + 125mcg levo from April

TSH 0.02 ( 0.55-4.78)

T3 4 ( 3.5-6.5)

T4 - didnโ€™t get

Pre T3 in Feb 2018

TSH 0.3 ( 0.55-4.78)

T3 3 (3.5-6.5)

T4 9.8 (10-18.7)

Any ideas what on Earth my body is doing?!

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Slappiduck
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Slappiduck profile image
Slappiduck

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SlowDragon profile image
SlowDragonAdministrator

Personally I think you need dose increase in both T3 and T4. But only increase one at time.

Probably increase T4 up first, back to 125mcg. Retesting in 6-8 weeks time.

What are you vitamin levels like?

SlowDragon profile image
SlowDragonAdministrator

Also have you had coeliac blood test yet? Or are you having endoscopy?

Majority of us with Hashimoto's need to be absolutely strictly gluten free

You do not need ANY gut symptoms and yet still be very gluten intolerant

Most test negative for coeliac

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Slappiduck profile image
Slappiduck in reply to SlowDragon

Do you need to be gf even if you donโ€™t have Hashimoto ?

humanbean profile image
humanbean in reply to Slappiduck

It helps quite a lot of people with dodgy thyroids.

I got my very first mildly positive TPO antibody result quite recently. Previous tests had come back negative over many years. I don't have coeliac disease. Despite this, when I went gf 3 and a half years ago I got benefits within a week. It's always worth trying a gluten-free diet. But if you do it it must be done 100%. People can't be almost gluten free.

humanbean profile image
humanbean in reply to humanbean

I should also point out that going gluten-free isn't a life sentence. If it doesn't help you then you can go back to eating it.

Slappiduck profile image
Slappiduck

Hi SlowDragon. Vitamin levels havenโ€™t been tested since Feb and results showed most things except Ferritin were within normal limits. Iโ€™m supplementing Vit D and dithering about Iron supplementation.

Slappiduck profile image
Slappiduck in reply to Slappiduck

Sorry I should rephrase that! My Ferritin was within normal limits but not 70

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

Eating liver or liver pate once a week should help improve levels of ferritin

Slappiduck profile image
Slappiduck

My coeliac blood test was negative so no plans for any further investigation on that front.

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

A negative coeliac test doesn't mean you can not be gluten intolerant

As humanbean says, it's always worth trying for 3-6 months.

Also testing negative for thyroid antibodies doesn't rule out Hashimoto's. Apparently about 20% with Hashimoto's never have high thyroid antibodies

Endometriosis is linked to autoimmune disease

Slappiduck profile image
Slappiduck in reply to SlowDragon

I am seriously contemplating gf. I guess I was thrown about my lack of antibodies. Would it be worth testing again or is that a waste of money? Would it change my treatment?

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

Would it be worth retesting what? Coeliac? No it wouldn't

Being Gluten intolerant will not show up in a coeliac blood test.

But just because it doesn't show in a coeliac test it doesn't mean gluten intolerance is any less debilitating.

The only way to know is to try it. You don't need any gut symptoms of any sort

humanbean profile image
humanbean

Your Free T3 is below the reference range. Your T4 (is that Total T4 or Free T4?) is below the reference range.

You clearly need an increase in both your T4 and your T3. The fact that your TSH is low suggests that your body - your pituitary to be precise - isn't capable of producing sufficient TSH for your needs.

This can happen for two reasons - either you have a problem with your pituitary (which tells your thyroid what to do) or your hypothalamus (which tells your pituitary what to do).

In primary hypothyroidism, which is the commonest form of hypothyroidism, someone with low Free T4 and low Free T3 would have a high TSH.

You don't have a high TSH, which suggests you don't have primary hypothyroidism. What you appear to have is central or secondary hypothyroidism. This is the situation I described above. Your pituitary isn't producing enough TSH for your needs.

In treating central or secondary hypothyroidism doctors must ignore your TSH and treat you according to the levels of your Free T4 and your Free T3. Ask your GP for a referral to an endocrinologist with expertise or an interest in central hypothyroidism. You are never going to be adequately dosed if doctors keep using your TSH to decide your dose.

When both Free T4 and Free T3 are low and you are being treated properly it would be usual for the T4 to be raised first, then T3 to be added as necessary when the effects of the extra T4 have been tested.

Slappiduck profile image
Slappiduck

Thanks HumanBean. I am currently seeing an endo who started me on T3 nearly 4 months ago. Prior to seeing him I was on 125mcg levo and no T3. I definitely feel better on the T3, but as my T3 meds have increased the T4 has decreased.

Regarding the T4 levels it just says T4 on the results so am presuming itโ€™s not free T4?

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

The range looks like FT4

Like you I had Levo reduced from 125mcg to 100mcg when T3 was added in. After 3-4 months my FT4 was near bottom on range and increasing number of symptoms returned. I increased Levo back, initially 100/125 alternate days. Some improvements and bloods slightly better after 8 weeks. So increased back to 125mcg, and retesting 8 weeks later FT4 back to mid range approx and feeling much better. Remained on that ever since. More on my profile

Slappiduck profile image
Slappiduck in reply to SlowDragon

Iโ€™ve had a good read of your profile SlowDragon. You have had an utterly awful time of it!

Do you recommend I ask for an increase in both meds?

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

Only ever change one thing at a time....in my experience

See what, if anything your endo suggests

Slappiduck profile image
Slappiduck

Endo has recommended increasing t3 to 10mcg twice a day and maintaining current levo dose at 100mcg ๐Ÿ˜ฌ

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