Can one predict treatment success?

[Dea11]

Hi there,

I'd love to know if there's a chance thyroid meds might help me, and which ones, based on my info below? I have a feeling there's no way to predict this and it will have to be trial and error, but it would be great to hear your thoughts nonetheless.

I'm 33 years old and was diagnosed with central hypothyroidism December 2022 after my symptoms gradually worsened for 5+ years. I'm now mostly housebound, haven't been able to work in since November 2022 & told I have chronic fatigue syndrome. The constant suffering is causing my life to fall apart, despite being on Levothyroxine and now trialling the addition of T3.

My bloods at diagnosis:

TSH 0.94

FT4 14.5 (10-28) 20% through the range

FT3 4 (4.3-8.1) 7% below the range

I was then started on 50mcg Levothyroxine. This helped slightly for a week but then symptoms returned and even worsened possibly.

Bloods after 6 months of 50mcg Levothyroxine:

TSH 0.24 and endocrinologist not phased by this

FT4 20.2 (12-22) 82% through the range

FT3 4.3 (3.1-6.8) 32% through the range. Endocrinologist agrees I probably have trouble converting T4 to T3.

Endocrinologist then added 10mcg Liothyronine (taken in one dose in the morning ) a month ago (so I'm now on 50mcg Levo and 10mcg Lio), and I am feeling the same, if not worse- I'm hoping this doesn't mean that experimenting with T3 is out of the question for me.

Will do bloods again in 2 weeks before seeing endocrinologist.

Thanks!

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

50mcgs is really just a started dose of Levo. What time of day was your blood test and when was the last time you took levo before the blood draw? if you took it not long before the blood draw then you are really measuring what you have just taken as opposed to the stable blood level of T4.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

[Dea11 in reply to GlowCoach]

Thank you! And thanks for the info. Since reading posts on here today I realised that I actually took that blood test on the 50mcg Levo at the wrong time - a few hours after taking the meds. I've thought about asking the endocrinologist if I can go back on just the Levo for a while and retest with the correct protocol, because the result could have been falsely high.

[GlowCoach Administrator in reply to Dea11]

Many people have to fight to get T3 so for now I would hang on to the T3 and when you restest be sure to follow the guidelines I mentioned above. You will see quite different results. Many doctors are not aware of this, it is a patient to patient tip.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

[Dea11 in reply to GlowCoach]

Thanks so much! I'll do that.I have had those vitamins checked, yes.

I inject myself with vitamin B12 so that level is more than fine.

Ferritin is fine at 150 (13-150).

Even though the GP said my folate is normal at 4.8 (3.89-26.8) I thought that its too close to the bottom of that range so have been taking supplements for about 2 months now.

D3 was low last year, even though GP told me it wasn't, so I've been taking supplements since then and its now optimal

[GlowCoach Administrator in reply to Dea11]

That's great and will really help your thyroid hormone to work at its best.

Be sure to take vit K2 with your D3 to help it go to your bones. D3 is best taken with an oily meal or as a supplement in oil. The Better You mouth sprays really help absorption.

The active or methyl form of folate is recommended here, in fact an active B complex is better which contains folate anyway and helps keep all the B's in balance. Any one of these would be a good choice.

amazon.co.uk/Liposomal-Soft...

amazon.co.uk/Yipmai-Liposom...

hempoutlet.co.uk/vitablosso...

[arTistapple]

I agree with Jaydee1507. Hold on to your T3 and pay heed to her other advice too. There definitely seem to be a couple of things there that can be sorted out. You are doing well and have a better understanding than I did at this stage, even if you do not quite believe it. Best wishes.