Some help please with latest thyroid results.

[Katherine1234]

Hi everyone, hope everyone is having a nice day. A snippet of my story. I am a bad converter T4 to T3. Endo put me on T3 as my T4 was showing over range and my T3 just scrapping in at the bottom. he told me to half T4 from 100 to 50 and take 10 of T3. I was not good on this dose my hypothyroid symptoms got worse. I upped T3 to 20 and T4 to 75. Endo was ok with this on seeing my blood test and gave me a prescription for the higher dose. I tried to get the lab results from the Endo nurses, but they never answer the phone.

Meanwhile for 25 years I have been diagnosed with ME/CFS. My doctor left me on .25mcg of levo for 10 years. Also did not tell me that my B12 was not great and had high MCV's, MCHC's, MCH's, enlarged red blood cells. I now self inject B12 and take high dose folate. I use to be bed or chair bound, I am up on my feet now around the house. Still have quite bad brain fog and ataxia. been taking copper and my numb feet and toes appears to be improving fast.

I got private results done by NHS Monitor my Health, because I don't see the endo until September now. Could someone help me with the results and I freaked a little with the supressed TSH. I still don't feel great, do I have room for improvement i.e. going up on T4 or T3?

TSH - 0.01 - (lab range 0.27 - 4.2 mU/L)

T4 - 15.4 - (lab range 12 - 22 pmol/L)

T3 - 5.4 - (lab range 3.1 - 6.8 pmol/L)

Thank you Xx

[SlowDragon Administrator]

TSH is almost always suppressed or extremely low taking any dose of T3 , ignore it. Most important results are Ft4 and Ft3

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

is this how you did your test

Do you normally split your T3 as 2 or 3 smaller doses spread through the day?

ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually

Exactly what vitamin supplements are you taking

What were most recent vitamin results

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

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)

Have you had thyroid antibodies tested?

[SlowDragon Administrator]

Free T4 (fT4) 15.4 pmol/L (12 - 22) 34.0%

Free T3 (fT3) 5.4 pmol/L (3.1 - 6.8) 62.2%

Assuming you tested as recommended, with last dose Levo 24 hours before test

Yes you have room to increase Levo

Approx how much do you weigh in kilo?

Which brand of levothyroxine are you currently taking?

Increase initially to 87.5mcg per day (75mcg and 100mcg on alternate days)

Retest in 6-8 weeks

Also

Ataxia

coeliac.org.uk/glossary/glu....

If not already on gluten free diet, get coeliac blood test before considering trial on strictly gluten free diet

[Katherine1234 in reply to SlowDragon]

Thank you so much SlowDragon, I did freak a bit. Yes, did not take my T4 - 24 hours before test. Test was 8.30am in the morning. Then I took my T3. I normally take T4 before bed and T3 about 9.30am. leave an hour then eat.

I will slowly up my T4 a little bit. Is my T3 ok to you?

I am virtually gluten free SlowDragon as I don't eating processed foods, foods with seed oils, and fortified foods. So it is difficult, all gluten free breads are full of seed oils and other additives. I will have to learn to make my own. I am pants in the kitchen. All the bread in the shops are so full of crap I did a gluten test and that came up ok, although I have had long standing high IGA's. I have since read they are notoriously unreliable. I think I might start eating gluten and get another test.

Ataxia is pretty bad

[SlowDragon Administrator in reply to Katherine1234]

So in reality last dose Levothyroxine was 36 hours before test?

So Ft4 falsely low

If had been 24 hours it would have been higher

How much higher difficult to say

At least 17…..possibly higher

so you may not need dose increase in Levothyroxine

Or only a small increase of 12.5mcg

Then retest as you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Katherine1234 in reply to SlowDragon]

That is interesting about the gluten ataxia SlowDragon. I have awful digestion and bloat like crazy by the evening.

I weigh 8 stone 4 lbs.