Starting to think my body doesn’t like Levo 🤷‍♀️

[jamjar67]

My last consult with my Endo it was decided to raise my Levo from 75mcg to 100mcg. I am also taking 20mcg T3 which he left the same.

Because my journey has been so long I decided to creep up my Levo (as I felt much improved on 75 Levo & 20 T3 v when on 125/100mcg Levo only where I was very tired but wired, cortisol all over the place etc…)

I decided to take 75 / 100 alternate days, pretty much straight away I felt worse, I persevered and after 6 weeks my results were as below.

I then increased to 100mcg Levo (still taking the T3) but again felt worse still, I asked the pharmacist to change my Levo brand and for a short while I felt the best I’d felt in ages, but as the weeks have progressed I feel awful, tired but wired (the Levo seems to wreak havoc with my cortisol and sugar as I get a very sweet taste in my mouth , bad sleep, waking in the night hot and sweats (although my body temp is better in the day) tinnitus really bad, developing eczema, prickly sensation in my skin, bad memory - it’s like increasing my Levo has made my T3 ineffective - I still have 2 more weeks before I’m due my next blood test, but I just feel like I don’t want to put Levo in my body!!!!

I take my B vits, odd iron tablet, 3000 vit D daily, magnesium.

My T4 levels are still low in the results below taking 100/75 Levo & 20 T3 but even if they’ve increased when I do my new blood test it’s making me feel worse not better.

Should I ask for my Levo dropping to 50 at my next consultation- I’m really at a loss now as I feel like I’m trying everything and nothing is working?

[Jazzw]

Did you mean to add a photo of your results jamjar67 ? You can either edit your original post to add the photo or add it to a reply to your own post.

[jamjar67 in reply to Jazzw]

Thanks, I’ve added it 👍

[greygoose]

If it were me, I wouldn't ask the endo to drop my dose, I'd just try a lower dose on my own for a while to see if it helps. If you get the endo to give you a lower prescription, you might have difficulty getting him to raise it again if you find a lower dose of levo doesn't help after all.

[jamjar67 in reply to greygoose]

I have to go for my bloods doing in 2 weeks, he told me to come back in 6 weeks and it will be more like 13/14 weeks - If I get my bloods done I can then ask for a reduction to 100/75, then I can play around with it.

When I was on 75 Levo & 20 T3, the other Endo wanted to reduce my Levo to 50 but didn’t offer to up my T3 - I was worried that I might become hypo without the option to add more T3 - so I went with the other Endos suggestion of upping my Levo, I hoped it would work as it would be easier for me to have mostly Levo and a small bit of T3 - but now I’m wondering if the 1st Endo was right 🤔

Like you say if have 100’s and 75’s I can tweak myself.

[greygoose in reply to jamjar67]

I very much doubt if the first endo was right. They rarely are.

[Jazzw]

I feel for you. I’m in the process of adding levothyroxine to my NDT dosage and so far it’s also making me feel worse not better. And like you, I know I probably need to hang in there a bit longer cos it hasn’t been long enough for the full effect to have taken place.

It’s interesting that you did feel better for a short while. I wonder whether somewhere between 75mcg and 100mcg of levothyroxine was your “sweet spot”? 100mcg sounds like it’s too much. 75mcg not enough. I wouldn’t drop to 50mcg—that’s much too big a drop in one go.

How about going back to alternating 75mcg/100mcg a day again? And using the brand of Levo that helped rather than the one that didn’t?

[jamjar67 in reply to Jazzw]

It’s interesting that you did feel better for a short while.

It’s odd - when I first went down to 75 and added T3 in I felt good for a while then after a while some symptoms started creeping in, but I was so much better.

Then when I swapped brands for a few weeks I was actually saying to people how I felt the closest to normal that I remember normal to feel - and now I feel awful, the worst I’ve felt in ages!

I am overdue my blood test at the hospital so I may aswell persevere for another 2 weeks and get the test done then ask the Endo to reduce my to 100/75 then I guess I can tweak it as I see fit 🤞

I feel the Endo will be getting sick of me!!

[greygoose]

It’s odd - when I first went down to 75 and added T3 in I felt good for a while then after a while some symptoms started creeping in, but I was so much better.

That's not odd at all. It's normal and just means you're ready for your next increase in T3. Your FT3 is only just over mid-range, and most hypos need it higher than that.

[SlowDragon Administrator]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 8-12 hours before test

The sweet taste could be more linked to the T3

Your results suggest you are under medicated and in perhaps need of dose increase in levothyroxine

Obviously you need to regularly retest vitamin D, folate, ferritin and B12

Are you on strictly gluten free diet

Which brand of levothyroxine initially helped

[jamjar67 in reply to SlowDragon]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Yes, did test at 8am, last Levo 8am prev morning, took Levo after test

Last 5mcg dose T3 8-12 hours before test

Yes - 5mcg 8pm

The sweet taste could be more linked to the T3

I really don’t think is, this happened before I ever took T3 as I raised my Levo. The higher Levo seems to mess up my cortisol and I think it does something to my sugar, hence I get this sweet taste in my mouth, it basically makes me feel rubbish. This is why T3 was added and Levo reduced. I did feel better than I do now but as I’m increasing the Levo again to make my numbers look better it’s messing up my cortisol and sugar again.

Your results suggest you are under medicated and in perhaps need of dose increase in levothyroxine

I know by the numbers I look under medicated but the thought of adding more Levo worries me, feel like I’m going backwards - it will be interesting to see how my next test reads.

Obviously you need to regularly retest vitamin D, folate, ferritin and B12

I will do this on my next private test, I self inject the B12 and the others were ok on my last test so I feel they should be ok.

Are you on strictly gluten free diet

I did strict gf for 2yrs but at Xmas I started eating it again, I’ve felt no difference.

Which brand of levothyroxine initially helped

I have pretty much always had Mercury Pharma, but my last prescription I asked for a different brand and it’s a German brand Aristo