Levo testing : Hi folks, After a long journey... - Thyroid UK

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Levo testing

weescone profile image
10 Replies

Hi folks,

After a long journey being on T3 / NDT and it not working for me, for the last 2 months I’m back on LEVO ONLY, & am due to have my blood drawn today. Can I query if it is worth them testing FT3 to see how much T3 is acually circulating in my blood?

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weescone profile image
weescone
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cjrsquared profile image
cjrsquared

If you have that option then yes, as it can indicate how well your body is converting t4 to t3.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT4 and FT3 plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

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 and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 hypothyroidism in Uk is due to Hashimoto's

weescone profile image
weescone in reply to SlowDragon

Thank you very much! I do have Hashis, official diagnosis 3 years ago.

SlowDragon profile image
SlowDragonAdministrator in reply to weescone

So 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

Are you on gluten free diet and have you had vitamins tested?

Essential to test vitamin D, folate, ferritin 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 significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

weescone profile image
weescone in reply to SlowDragon

Is there a test for coeliac?

Marz profile image
Marz

Am wondering why the NDT/T3 combo did not work.

Did you have OPTIMAL levels of B12 - Folate - Ferritin - VitD ? As it seems from reading here that nothing works with thyroid hormones if vitamin and mineral supplements are low. Do you have any results with ranges you could share ?

Are you on any other medication that could be affecting the uptake/absorption. Gut issues ?

weescone profile image
weescone

It’s been a journey of about 3 years, T3 & NDT. building myself up as per protocol. But cortisol was always high, adrenals always taxed. Purse always empty, doctors neglectful & unsupportive. So much fantastic advice from the relevant pages, however it was all just too much. After a near fatal head injury recovery of 10 years also not helping. I regularly felt physically & emotionally weak and battered. Without someone to guide me, to what I as an individual really need..

so, I’ve been back on Levo 2months, my GP wanted me on too small a dose (NOTHING like the NDT equivalent). I decided to give myself a little more as I know his dose would have me hospitalised (again). Retest through the NHS tomorrow, and I still feel crap, I really felt like T3 or NDT was the answer, as it can be for many. It just didn’t work out that way for me.

weescone profile image
weescone

My Endo refused to see me while I was on NDT. As well as refusing to accept gut has anything to do with it. This, for starters is what I am / was up against. I’m in Ayrshire & this Endo is well known

SlowDragon profile image
SlowDragonAdministrator

Has head injury causing pituitary damage ?

Has this been fully investigated?

Low sex hormones, adrenal issues etc etc

So sorry you are up against unhelpful endo and GP

weescone profile image
weescone in reply to SlowDragon

I queried pituitary damage but GP said it can’t be. Apparently my TSH would indicate that. Endo refused to see me while I was on NDT & officially signed me off which is scandalous. So, now I’m back on Levo, I’m going to ask my doc to refer me to a different Endo, & hopefully sex hormones etc will also be investigated.Bloods taken today so those results will be interesting

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