So confused and still not feeling well - Thyroid UK

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So confused and still not feeling well

Loriputnam11 profile image

I have tried to be patient in letting the meds work as much as I wanted to not believe I needed them:( Here are this weeks results. I take 50mg of Tironsint and 15 mg of T3.(10 in the am with Tironsint and 5 mg around 2 in the afternoon. Forehead still numb and gets worse with the anxiety that I have never had before last year when this started. Hair still falling out, dry skin, brittle nails, insomnia and some brain fog that comes and goes. Cortisol levels have been on the high side and now way low although I took a steroid 8 hours before blood test at the dr instruction. I did take my meds 2 hours before as instructed. One endo tells me to take them the other says dont take them and fast. Ugh......Im just not seeing an end to this and it is daunting.

TSH. .375 (.450-4.50)

T4. 1.01. ( .82-1.77)

T3. 4.7. (2.0-4.4)

Cortisol 4.4 (6.2-19.4) blood at 8:30 am after steroid pill at 11 pm

Ferritin. 126 ( 15-150) it was 20.4 a year ago and told me it was normal but because of this support group I learned

It should be much higher and started taking supplements It was 86 in August. I have an endo appt this Thursday and could use some help in what to ask or just accept what they say:( Thank you for any thoughts, Lori

3 Replies

Three things stand out-as you are taking T3 then the testing should be 12 hours after.

When taking any form of T3 then results are read differently and FT3 should be high in its range but never over. Yours is probably two high because you didn't test at the right time.

Other things are important to test-B12, folate and vitamin D also help your thyroid to work better but getting levels optimal can take some time if readings are low.

You haven't much time to sort things out before your appointment so I would suggest you look at the sight of thyroid uk who run this forum. They have loads of info to help you so it might be beneficial to take into to your appointment. Include what you aren't doing but would be beneficial, what you are going but think isn't quite right and tests you would like to help sort your supplements. If anything you don't understand on the Thyroid uk page then shout out and let's hope we can explain before your appointment. A good expert should be able to sort things for you but you need to know what you should be doing and what you shouldn't be doing as notvpoint in adding in things if you are still doing things that aren't helpful and making things worse.

Hope the appointment goes well.

You have not had the blood test early, fasting. You should have left off T3 10/12 hours prior to the test and Levo for 24 hours before the test. Others on here could help with the supplements you had taken. Why the steriod? Biotin can effect the test too.

SlowDragon profile image

Looked through your previous posts

There nothing on your profile

Do you have Hashimoto's have you ever had TPO and TG antibodies tested ?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose exactly 12 hours prior to test


If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

Multivitamins are not usually recommended on here as they contain iodine, not recommended with Hashimoto's

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