T4 High TSH Normal

[Culnacille]

I feel so unwell and fatigued. I was on 120 Levothyroxine and was reduced to 100 my Dr said my T4 was high but my TSH was normal. I can't sleep at night but tired all the time. My face is puffy and my stomach distended I have had an underactive thyroid for 28 years and was told my thyroid was the size of a five year old. I just do not understand what is going on my Dr said she may reduce my Levothyroxine if my next blood work shows my T4 is still high... I do not know what to do.

[SlowDragon Administrator]

Looking at your previous post are you also taking any T3

How much levothyroxine are you taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

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)

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

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

if in RoI - you can get tested via Let’s Get Checked

Thyroid

letsgetchecked.ie/home-thyr...

Ask GP to test folate, B12, vitamin D and ferritin

B12

letsgetchecked.ie/home-vita...

letsgetchecked.ie/home-vita...

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

support.medichecks.com/hc/e...

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

[Culnacille in reply to SlowDragon]

Hi and thank you s much for the reply a lot to read over. I was on T3 Tybon over a year ago I didn't feel any better. I do know my ferritin level is on the high side previously my iron was on the low side and I was prescribed Galfor for 3 months but I have stopped that about 6 months ago. I am having a while slew of blood tests on 19th September. I know I will not be able to ask what to add on but I will on my next Dr visit. I am in ROI and waiting times are horrendous. My fingers nails are so bumpy and pitted too.

[greygoose]

Sounds like you have Ord's and you're a poor converter. But you would need full thyroid testing to show that. Even then, your doctor probably wouldn't understand. It's no use keep reducing levo if you don't add in some T3 because it's just going to make the patient worse!

[Culnacille in reply to greygoose]

My Dr says my T3 levels are fine.. I'm at a loss. What do you mean by ords? I should mention last year I climbed a mountain this year I'm exhausted when I climb the stairs Thanks for the reply

[greygoose in reply to Culnacille]

Well sorry to say this, but I very much doubt your doctor would know a fine FT3 if it was staring her in the face. Even if it was right at the bottom of the range she would say it was fine because it was in the range. But that doesn't mean it's optimal. And if your FT3 is low, they you would be exhausted when climbing stairs, that's obvious - well, to a thyroid patient it is, not to doctors.

Ord's autoimmune thyroid disease. Like Hashi's. But the difference is with Hashi's the thyroid becomes inflammed and forms a goitre, and with Ord's it shrivels up.

[Culnacille in reply to greygoose]

Ah I had never heard the abbreviation Ords before... I feel a little silly for asking now. Next appointment I WILL ask about going on T3 again I've never felt exhausted like this even after a shower I want to lay down... I know I'm depleted a lot of things aren't making sense like heat intolerance which is a symptom of too much eltroxin I know. I have gain over a stone and like I say a VERY VERY distended. My ovaries were checked I'm on a waiting list for a colonoscopy... and now I also have raised blood pressure I'm being fitted on Thursday with a monitor the same day the bloods are taken. I really appreciate you taking the time to respond but you know when you get to the stage of being tired of telling everyone your tired and no one is hearing.

[greygoose in reply to Culnacille]

It's not an abbreviation, it's the name of the man that discovered the disease: Mr Ord. But it's rarely called that nowadays. It's usually either called Hashi's or Autoimmune Thyroid Disease.

Heat intolerance can also be a symptom of under-medication. It's a mistake to divide symptoms into two rigid groups: this one is under and that one is over. Most symptoms can be caused by both.

Yes, I know, no-one understands that devastating fatigue caused by hypo, unless they have it. And you usually get remarks like 'well, everyone gets tired'. But not like this they don't!

[Culnacille in reply to greygoose]

Thanks for the information. Yes no one knows unless they go through it..... my problem is if it comes back still showing T4 increase how do I get my Dr to put me back on t3 and the 120 Eltroxin I was on previously. I can't change my Dr I'm lucky to have one its that bad in Ireland and to see an endocrinologist its like a two year wait, but, thanks for listening and giving some useful information x

[greygoose in reply to Culnacille]

Yes, I know the doctor problem first-hand. I haven't had a doctor for years since mine retired and nobody replaced him. There just are no doctors here where I live, in France. I self-treat.

If your doctor gives you T3, she wouldn't need to increase your Eltroxin back to 120. It's T3 you need, not more T4. She doesn't have to do both. Can you not explain to her that your FT4 is high because it's not converting to enough T3?

[Culnacille in reply to greygoose]

That's exactly what I will tell her and I'll let you know the out come it maybe a few weeks because of the wait time but I won't forget.

[greygoose in reply to Culnacille]

Good! Fingers crossed for you!