New results - stopping levo question

[Snooperkitty21]

Hello, I’ve gotten new results on 125 mcg of levo. I’m still feeling awful and leaning towards resting for Lyme disease and candida etc I feel like I’ve given thyroid meds a try for 9 months with no symptom improvement, in fact I feel almost worse it seems. I’m seeing my doctor in 2 days to discuss results, but really I’m leading the process here as he let me try levo and doesn’t think I have a thyroid issue. I’m also seeing a functional medicine dr and a naturopath next month for further testing.

Symptoms are brain fog, light and sound sensitivity, fatigue, memory loss, depersonalization, derealization etc

Can someone help me with the process to wean off 125 mcg levo?

[Lalatoot]

I reduced my daily dose by 25mcg every 4 weeks. I then stayed on a daily dose of 25mcg. I didn't stop completely. After 3 months on 25mcg daily I was very ill, my TSH was in the 30s and my ft4 was bottom of range and my ft3 was under range

[Snooperkitty21 in reply to Lalatoot]

Thank you for this reply! That’s helpful. I’m sorry you were so ill and I’m also worried about my tsh going up. It was never over 2.3 previously and generally 1.5. My ft4 and ft3 were low in range which is why I tried thyroid medication out. I feel like my doctor won’t know how to properly stop this medication.

[Sparklingsunshine]

Do you have any balance issues at all, dizziness, vertigo, walking on marshmallows sensation, bobble head sensation, headaches, head or sinus pressure. History of migraines or migraine in the family.

[Snooperkitty21 in reply to Sparklingsunshine]

I actually do have balance issues and sinus pressure. I feel like I’m walking on a ship often. I don’t get headaches. What could this be from?

[SlowDragon Administrator]

Couldn’t see any recent vitamin results on previous posts or your profile

[Snooperkitty21 in reply to SlowDragon]

Thank you SlowDragon, here are some results:

Ferritin, - 91 (was 11 two years ago)

Iron - 15 (11-34) 

TIBC - 60 (50-100)

B12 - on injections and it’s 534 pmol now but was low 175 pmol (138-652 pmol)

Vitamin D - 156 pmol (was 63 pmol) (75-250 pmol)

Vitamin B6 - 6.6ng (2.1-21.7)

Vitamin A - 1.7 (1.2-3.5 umol/L)

Folate - 32.7 ( >8.7 nmol) no supplements

[Jogger24]

Hi Snooperkitty! Just popping by for an update as I'm following your journey with our similar issues.

I'm sorry to hear you're still feeling poorly and not seeing any improvement. From my side, I have come off my Venlafaxine/Concerta completley with the help of a single pump of Oestrogel every day! (I'm also taking 'baby HRT' in the form of Qlaira contraception.

My brain fog is massively improved and the fatigue is completely gone. I'm getting out of the bed each morning at 7am feeling rested (!!).

Have you tried any hormone replacement yet?

[Snooperkitty21 in reply to Jogger24]

Thank you for posting! I’m so glad your brain fog lifted. That’s the worst symptom for me. I have not tried it but I do have a few bottles of progesterone that I could try. I am hesitant because according to my labs, my progesterone and estradiol are balance and good. I even posted in a hormone group. They say balanced is 10:100 for progesterone:estradiol and mine is 31.9:361 pmol. So I’m not sure what to do with that. I wish it was hormones but it just feels like so much more because it came on so suddenly in Sept 2018.