How to proceed?

[jrbarnes]

Around 2017 the debilitating hypo symptoms started up. LDL cholesterol was flagged high and my morning blood fasting glucose started to rise by ten points (still within range), while terribly hyper/hypoglycemic all day. Before 2017 I recall living and functioning normally but looking back now I remember feeling cold, blood sugar issues, hoarse voice, vertigo, and some memory issues. It would seem that dosing over the range on T4 just kept me paddling above water with my T3 levels. Even dosing over the reference range I can't get my T3 to the top and the result was an increased ALT from 10 to 26 (ref: 0-32.) It can't be good to have increased liver enzymes despite still being within range. My GP kept me very unwell for three years and told me that my T4 levels were too high and to reduce from 88mcg to 75mcg, while ignoring the T3 levels. I didn't allow that but the symptoms persisted and I was only able to work intermittently.

This year I tried NDT but the ratios were difficult for me to sort out and I developed facial swelling and extreme fluid leading to carpal tunnel and inflammation on 105mg, yet overdosed on 120mg so I switched back to 88mcg of Levo and all of that went away but here I am again with low T3 levels. I'm not sure how high I should push my T4 levels before supplementing with T3. It would seem anything below T4 levels of 1.9 and I'm barely functional of Levo. I have a bottle of T3 but haven't had much success with it. I've been back on 88mcg of Levo an estimated 4 weeks with a brand change 2 weeks ago. Previously, I was on generics for 10 years which were slightly more potent, placing my T4 levels at 1.7 and brands placing my T4 levels at 1.6. It's a small difference but enough to keep me bedridden currently. I like this new brand however I'd have to estimate it might be pushing me even lower around 1.5-1.6. Two weeks ago I got my labs done before doing the brand switch and T4 levels were 1.6 and T3 at 3.0 but I had been fiddling with taking small amounts of T3 throughout the week so this doesn't reflect how the old brand was working on its own.

To wrap up this long explanation I'm currently on new brand of 88mcg Levo for 2 weeks, fatigued, not functional, not sleeping well, terrible acne, no appetite, blood sugar issues, poor memory, and more. It has become very clear by looking at past and current labs that I can't get away with taking Levo only. I've thought about taking 1 grain of NDT and 50 mcg of Levo, which would be 88mcg of T4 and 9.5 mcg of T3. I have a bottle of Sigmapharm T3 but unsure of how much to add. The effects of T3 in NDT are so different from the synthetic T3. I tried to add 10mcg of synthetic T3 , split 12 hours apart and the next day I had terrible neck pain and fatigue. Any advice on how to proceed? My T3 levels need to come up from the mid 2 range to over 4 on the reference range. I can only imagine that will require a lot of additional T3.

As most hypo people my B12/folate was poor and I supplement, which has brought both levels up. I"m focusing on eating more iron like liver once a week. I'm currently supplementing with Vit D/k since the cold season has arrived. My D levels are bottom normal in winter and nearly triple in the summer due to my love of gardening. I've had nearly every hormone, crp, IGA, ANA, TPO, TGA, coeliac, transglutaminase, lupus, rheumatoid, iron, cortisol test out there. The low thyroid has my cortisol levels a tad high in the evening and high normal before bed resulting in mid range levels in the morning. That was corrected when on NDT but has now returned.

I've posted some recent tests. Tests taken early morning fasting no meds. I do not take biotin. Partial thyroidectomy due to hurthle cell adenoma in 2007. Symptoms of fatigue for ten years prior. Oddly I felt better without meds and even after my partial thyroidectomy I felt better with only half a thyroid and no meds despite an increased TSH of 5 and some fatigue, however I didn't want to end up with another growth so I got on Levo. Thanks for an help.

2016 Oct

TSH 1.32 (.45-4.5)

T4 1.84 (.82-1.77)

T3 3.4 (1.2-4.9)

2017 Mar

TSH 1.54 (.45-4.5)

T4 1.94 (.82-1.77)

T3 3.8 (1.2-4.9)

2017 Sep

TSH 1.88 (.45-4.5)

T4 1.8 (.82-1.77)

T3 2.7 (1.2-4.9)

2018 Oct

TSH 1.43 (.45-4.5)

T4 1.69 (.82-1.77)

T3 2.6 (1.2-4.9)

2019 Dec

TSH 1.5 (.45-4.5)

T4 1.7 (.82-1.77)

T3 2.6 (1.2-4.9)

Vit D 85 (30-100) ng/ml

Folate 17 (3.1-20.5) ng/ml

B12 754 (187-883) pg/ml

Hgb A1c 5.0 (0-5.6%)

CRP <1 (0-10) mg/L

rheumatoid factor <14 (<14) IU/ml

coeliac disease panel negative

dna tests show no coeliac variants

TPO 1 (<9 ) IU/ml

TGA 4 H (< or = 1 )IU/ml

Iron, total 133 (40-190 ) mcg/dl

iron binding capacity 276 ( 250-450 ) mcg/dl

% saturation 48 H (16-45 %)

Ferritin 47 (16-154) ng/ml

transferrin 200 (188-341) mg/dl

[JAmanda]

Do you have recent blood results? I persevered adding in T3 by tiny amounts across the day and not reducing t4 too much - eventually I decided the head and neck pain was the f3 being too little not too much so I stopped the faffing with tiny amounts and take it all in one go first thing in the morning. So whilst when I began I found it hard to take 2.5mcg T3 I now take 20mcg with no ill effects at all. Not sure I can explain that! I do start yawning like crazy around 5pm every day so I might now switch to 2 x 10.

What I can say is that the T3 has made me feel a lot better but I did have to add a significant amount. When I replaced 50 Levo with 10 lio both my t4 and T3 went down rapidly (despite my t4 being well over range before). It's all an experiment!

Hope you feel better soon.

[jrbarnes in reply to JAmanda]

The last results are from a few weeks ago when I did a brand change but I hadn't been back on Levo for more than 2 or 3 weeks when they were done. T4 was at 1.6 (.82-1.77) and T3 was at 3.1 (1.2-4.9) however I'd been fiddling around with some small amounts of T3 during the week so it doesn't exactly reflect the T4/T3 conversion but the T4 levels are accurate based on how terrible I still feel. Previous to that I was trying natural desiccated and those results were all over the place.

It is difficult to describe T3 and its effects when I take it but what you describe makes perfect sense. If you're not taking the right amount you need it feels like the symptoms are worse. Were your T4 levels at the top of the range when you added T3 or did you reduce by 12.5 mcg first?

[JAmanda in reply to jrbarnes]

On 125 mcg I was over range on t4 so went down to 75 when adding in 10 lio. The result after 20 weeks was my T3 and t4 were much lower than when on just Levo. I feared I'd reduced Levo too much so went up to 100. But after 6 weeks my hip pains were really unimproved - that's my main symptom now - so I flipped to 50/20 and I do feel quite a bit better. It just amazed me that it took me months to add in the 10 of lio the first time a year ago, then weeks of faffing and cutting up pills when I introduced the 10 this time round ... but I just switched from 10 to 20 overnight and it didn't bother me at all.