New thyroid results - stopping levo or another cause for symptoms?

[Snooperkitty21]

Hello, I’ve just gotten results after being on 100 mcg levo. I do not feel any better. Antibodies not tested but are always negative.

My biggest symptoms are brain fog/ derealization/ depersonalization, complete short term memory loss, light sensitivity and sound sensitivity. I’m not physically tired and don’t take naps. My brain gets tired. It takes me so long mentally to get up and do a task because thinking about doing anything is overwhelming. I’ve felt like this for 4 yrs.

I’m considering stopping levo and continuing to look for another symptom cause. I asked my dr for this levo back in March.

How do I stop levo safely and with minimal effects?

[greygoose]

What were your thyroid levels before you started levo?

Have you had your nutrientst tested: vit D, vit B12, folate, ferritin?

[Snooperkitty21 in reply to greygoose]

Here is my thyroid panel before starting levo:

October 2021;

Ft4 - 12 (9-19)

Ft3 - 3.9 (2.6-5.8)

TA - 13 (<40)

TpA - <9 (<35)

TSH - 1.63

My nutrients are all optimal at this point, although all except for folate were low and I had to supplement to increase them.

[greygoose in reply to Snooperkitty21]

Ft4 - 12 (9-19) 30.00%

Ft3 - 3.9 (2.6-5.8) 40.63%

Your Frees were pretty low, so you probably were hypo, despite your low TSH. Normally, they are around 50% throught the range, in people who have no thyroid problems.

However - and this is just a suggestion, I'm not trying to diagnose you - it could be that you have a pituitary/hypothalamus problem rather than a thyroid problem. For whatever reason, it looks like your pituitary is not producing enough TSH to stimulate the thyroid to make enough thyroid hormone to keep you well. We call this Central Hypo.

This is backed up by the fact that your FT3 was higher in range than the FT4 - which is not usual. But, when the thyroid is struggling, for whatever reason, it often makes more T3 than T4 in order to keep levels optimal. But, it looks like your thyroid was losing that battle. So, starting levo was a good thing to do.

You say you don't feel any better on the levo. Are your symptoms the same as before you started it? Could be that, if you have a pituitary problem, the other pituitary hormones are also low and causing symptoms. Have things like cortisol and HGH been tested, or any other pituitary hormones?

That said, 100 mcg is not a high dose of levo, and you do have room in those results for an increase in dose. So, if I were you, I would try increasing my levo before abandoning it completely, to see if it helps. But, it would be a good idea to ask your GP to test your cortisol, to see if that's low. If it is, then you might broach the idea of Central Hypo with your doctor and ask to be referred to an endo.

[Snooperkitty21 in reply to greygoose]

That is very helpful information! Thank you. I have gotten a bunch of pituitary hormones tested by my request. Here they are:

Cortisol AM - 468 (135 - 537)

ACTH - 9.7 ( <14)

HGH not tested

FSH (day 21) - 2.5 IU (1.5-5.5)

LH (day 21) - 6.2 IU (1-14)

Prolactin - 11.4. ug (5-27)

My symptoms are the same in severity since before starting levo. It’s depersonalization/ derealization 24/7 along with no short term memory and the light and sound sensitivities. Probably more symptoms that I don’t realize are symptoms. This all started in Sept 2018 and I’ve been going to my Dr and naturopaths for years trying to get answers and just asking for various tests and can’t figured out why I feel like this.

I will try for an increase but my Dr doesn’t think I have a thyroid problem so it’s difficult to have the conversation.

[greygoose in reply to Snooperkitty21]

Well, they're not brilliant, are they. But, it could be the hypothalamus at fault. The hypothalamus has to stimulate the pituitary before it will make TSH. Unfortunatley, that is difficult to test for.

In any case, pretty sure you did need to start levo. Could just be that you're one of those people that needs their FT3 right at the top of the range or even slighly over. Have you tried increasing levo? Or, it could be that levo just doesn't suit you - it doesn't suit everyone. Maybe NDT would be better for you, or T3 only. But, if it were me, I certainly wouldn't give up the levo. You could search for other causes whilst still taking it.

[Snooperkitty21 in reply to greygoose]

Thank you. I started at 25 mcg of levo in March and am now on 100 mcg. I’m in Canada and don’t know if we have NDT here but I can ask my doctor. I’m hoping he will increase it but it’s not likely. I just thought I would have seen some sort of improvement at this point if levo was to do anything beneficial and not seeing any change makes me think it’s not working.

[greygoose in reply to Snooperkitty21]

Levo is a hormone - T4 - not a magic potion. If cannot not work. What is important is the way your body reacts to it. And, how much you take. 100 mcg is only a small dose. So, it's not that the levo 'isn't working', it's that you're not taking enough of it, in my opinion. I don't think you can reasonably expect much of an improvement of your symptoms with such low levels.

[Jaydee1507 Administrator]

Light and sound sensitivity are very common in ME/CFS. Also many with ME/CFS have undertreated or undiagnosed thyroid issues.

As Greygoose says, you have room for a dose increase and give it plenty of time to work, like 3 months before giving up on it.

Getting key vitamin levels (ferritin, folate, B12, D3) to optimal levels - upper 1/4 of reference range can make a huge difference to many people for many things. It will also help your body use the thyroid hormone you are taking.

[Snooperkitty21 in reply to Jaydee1507]

Thank you for the reply! I did read up on ME/CFS but didn’t think I could have it because I’m not really tired. Just in a drugged or drunk-like state 24/7 with these symptoms. I’m normally up from 8am until 11pm daily but I don’t work because I can’t focus mentally. It’s a struggle.

All of my key vitamins are good now. My ferritin is 91 (5-272) but was 11 to start and I’m still working on increasing it.

[Jaydee1507 Administrator in reply to Snooperkitty21]

have you tried any dietary changes? Perhaps an elimination diet? Gluten and sugar can be the root of all evil for some.

[Snooperkitty21 in reply to Jaydee1507]

No I haven’t but I really should! Seems like that helps many people. I’ve cut down but not eliminated so that’s my next step.

[Beau55]

hi Snooperkitty21,

Have you had a adrenal saliva test done? Often when thyroid hormones don’t resolve symptoms it can point to an adrenal issue or nutrient deficiencies. Light and noise sensitivities sounds like it could point towards an adrenal issue but would need testing to find out. I think if you have eliminated nutrient deficiencies then it’s worth looking into. If your TSH was low and indicated central hypothyroidism, it could be that the signalling towards the adrenal glands could also be effected.

I hope you find some answers ☺️

[Snooperkitty21 in reply to Beau55]

I haven’t done an adrenal test yet. I’m partially convinced I have Lyme disease due to my symptoms and of course reading online ( reading online can be good and bad!). Just because my dissociation and light/sound sensitivity is so bad. That or adrenal issues. I’ll have to do a saliva test at this point. I’ve heard of it and read of people ordering them easily. Thank you for the reply!