Lab results worse and help needed to get off the Seesaw!

[Koola]

Dear Th. - UK Friends and Advisors,

TSH: -- 4.84 ( 0.20 – 5.00 )- previous test: 1.43

FT3:– 3.46 (1.8 – 4.5) previous test: 3.24

FT4:– 9.90 (7.0 – 20.0 ) – previous test: 11.3

I’ve been advised for the past 6 months to raise T4 intake. I have, cautiously. From 75 to 88 Levo, then alternating on different days, taking more, then only 88, difficult, but every time I try 100 I feel worse.

The “Seesaw” is that every time I try something new, like splitting doses, or switching from Tirosint to generic brand, then one third of one brand and 2 of the other and so on, I always feel good the first day, sometimes even the 2nd. And then, Bam goes the seesaw again with me at the bottom! Anybody out there have a similar experience?

I tried adding T3 last year, same thing, better for a few days only, so I stopped. I didn’t know about vitamin levels. I started testing 6 mo. ago, supplementing and they’re still too low. In despair and feeling terrible, I recently tried one eighth T3 for 3 days. Felt really good on first day and then – the infernal Seesaw again! So I took less T4 for a week, tested and no wonder my TSH was high again.

This would all be funny if it was a cartoon and not my life… All suggestions very appreciated! Thanks for your patience with this long post.

PS. It’s taken me three days to muster the energy to write it

[greygoose]

What sort of a time-scale are we talking about here, with all these changes? The body doesn't like you to keep changing dose and brands/types, etc.

What dose of T3 did you try when you tried it last year? Did you not try increasing it if you felt well at first and then didn't?

Have you had your nutrients tested now: vit d, vit B12, folate, ferritin? They are pretty important.

[Koola in reply to greygoose]

thank you for quick reply, greygoose. will answer tomorrow.

[Koola in reply to greygoose]

Hello Greygoose, This will be long but I also hope that it might console other fellow sufferers, who are trying to get it right.

For the larger time span: I have results from 2016 till now. Until I discovered this forum 2 y. ago, I was testing every 3 months. My TSH was very low for the longest time in 2016 & 2017 : 0.05 (0.30 – 4.50) / 0.27 / 0,08 / 1.19 and once in a while it would go way up, like 8.47 . But that’s before I knew to have blood taken early, with only water. I used to go to lab at different times. Coffee before. Probably had taken sometimes a pill that morning etc. The price of ignorance!

Unfortunately, back then I was only testing T4 and T3 (following an ex- ex- ex endocrinologist ’ advice…) not FT3 & FT4. The former were also low. Aside from gaining weight and moments of tiredness I was still functional. February 2018 joint and back pain started and more weight gain. I was basically on 100 Levo, and was switched to 88 because of lower TSH. Then back to 100 when TSH changed again 3 months later. By 2019, tremendous tiredness but I could sleep for an hour or two, morning and afternoons. Now I’m almost always exhausted, but I can’t sleep in the day.

Brands: I was told to switch from generic Greek brand to Elthyrox by Merck. Took it for about 8 months. Then I found out about the changes they made (which became a scandal in France) and stopped. Another endo switched me to Tirosint which I took for 10 months, going from 100 to 88. Then to 75 alternating with 88. Since I wasn’t feeling any better, I switched to generic Greek brand. Slight improvement but not for long. I’ve since tried 75 Tirosint and 12 Greek brand, TSH got lower but no improvement. FT3 & FT4 still too low. Now I’m doing only Greek brand, 3 hours apart.

As mentioned previously, every time I try to up the dose to 100 I feel hyper, like when I was hyper before RAI and before I was given the right dosage of Carbimazol, which I felt fine on for 16 years. I don’t think I’ve recently introduced too many changes, aside from trying to take it at night rather than in the morning for a while. Meanwhile I’m on 88 and working on getting my vitamin and iron levels right (all low, except for Folacin; no wonder, I eat more greens daily than a horse!) I suggested takingT3 a year ago (6,5 a day) to my now ex endo, and 5 weeks later he said FT3 had improved (though still low in range) and to take it 3 times a week – until I found out on this forum that it made no sense. So now I have no endo. Maybe a good thing but I’m not feeling any better. Now I hope that when vit. & iron are better, things will improve. Plus lights off by 23:00 at latest, seems to help.

Thank you for bearing with me.

[greygoose in reply to Koola]

. I was basically on 100 Levo, and was switched to 88 because of lower TSH. Then back to 100 when TSH changed again 3 months later.

This is one of the reasons that it's a mistake to dose by the TSH. It's the FT3 the most important number. And, the only way to get off the seesaw is to stop dosing by the TSH and dose by the FT3.

And, it would appear, that since 2016, there have been too many changes up and down - that's the kind of changes the body doesn't like.

So, what are you taking now?

[Koola in reply to greygoose]

88 Levo. Of course, you’re right about FT3 but I only discovered this forum two years ago. (As mentioned, before, I’d just been told to test T3 & T4 with TSH.) But until summer 2018, I was only testing every three months. And usually stayed on same, 88, bear the 100 once in a while. Which I could manage, but I only got worse with time.

So I don’t think there's been too many changes and now I’m confused: I was told twice here to raise by 25mcg and test again in 6 weeks; and to titrate; to see how I felt on higher dose etc. Now I’m on 88 again , as I was for years when I only got worse. Since FT3 & FT4 are still low, I was told again to try 100, but when I do, I’m even more incapacitated on top of feeling hyper and not being able to relax or sleep.

I’m now trying to raise Vit. & iron levels, which apparently need to be optimal until I can try T3 again. I don’t know what else to do. All suggestions welcome!

[greygoose in reply to Koola]

It is very, very important ot optimise nutrient levels. The body cannot use thyroid hormone correctly if they are sub-optimal. And, it might be an idea if you can get your cortisol tested, because that's important, too.

But, are you sure you're feeling hyper? So many symptoms can be both hyper and hypo, that's it's difficult to know.

[Koola in reply to greygoose]

I had cortisol tested on 30 June and it was okay.

Yes, it’s difficult to know. When I took T3 I had the feeling I was jumping out of my skin, typical hyper symptom. Now I don’t have the relief of sleeping or even dosing when I’m exhausted. I can’t concentrate on paper work, which is becoming a real problem, often can’t even answer one of your posts (!) I lie down, can’t relax, get up after an hour and an hour or two later, lie down again. And so on.

Only in the evening do I have some energy. Wonder if others have the same day/ evening symptoms.

[greygoose in reply to Koola]

When you say your cortisol was 'ok', what exactly does that mean? Do you have the actual numbers? Cortisol blood tests are unreliable, and only tell you one chapter of the story. You really need a 24 hour saliva cortisol test to know the whole story. and being being sleepy in the morning and only having energy in the evening, is a classic Adrenal Fatigue symptom.

[Koola in reply to greygoose]

Cortisol was 17.1 (6.0 – 25.0). If not adequate, hope they do 24 hour saliva tests here. And if Adrenal Fatigue symptom is linked with stress, then I’m an “ideal candidate”! From end of 2015 till now (bear a few months respite in 2017) it’s been very tough going.

[Koola in reply to greygoose]

P.S. Just checked last 4 tests again: TSH is too high (lowest was: 1,80 (0.20 -5.00): FT3 is always in upper third: Ft4 is always too low, one third.

[greygoose in reply to Koola]

Well, even with the FT3 in the upper third, you could still be under-medicated.

[Koola in reply to greygoose]

Thank you.

[Koola in reply to greygoose]

Should I do a saliva test for cortisol, if possible? or is the result, as above - Cortisol was 17.1 (6.0 – 25.0) - reliable?

[greygoose in reply to Koola]

Cortisol blood tests are said to be unreliable. Plus, it only tells you the first chapter of the story. Cortisol is supposed to be highest early morning, to get you out of bed, and it then drops throughout the day, until it's at its lowest when you need to go to bed. You need to know if it's actually following that pattern. And, just testing once in the morning won't tell you that. So, a 24 hour saliva test will give you a better idea of what is going on.

[Koola in reply to greygoose]

Sorry to be taking so much of your time but -- they don’t do 24 hour saliva tests here on the island. I’d have to take a boat to Athens very early in the morning, and with the 2nd lockdown, first get a Doctor’s permission then an official document etc. At this point I can’t even make it into town, 3 minutes away, even with a friend willing to drive me, like today, and I had to cancel an ophthalmologist appointment. So I have to abandon that course of action for now.

Meanwhile, since I’m on 88 Levo, which I did for years with no improvement, maybe I could again try taking 100, only on weekends. What do you think? And add selenium to my vitamins & iron ?

[greygoose in reply to Koola]

You could try increasing your levo again, if you think your nutrient levels have improved. But, not sure selenium is necessary. You appear to be converting very well, and people usually take selenium for poor conversion. Just try increasing the levo, and see what happens.

[Koola in reply to greygoose]

Okay. Thanks again, greygoose! Hope you won't hear from me until I can triumphantly announce that I'm half way functional! (We keep our expectations low after a while )

[greygoose in reply to Koola]

You're welcome. And good luck.

[Lalatoot]

Koola You are making too many changes. Our bodies don't like change and just as your body is slowly adapting to a change you whammy it with another change.

I always feel bad weeks 3 and 4 particularly when I change levo doses but need to stick with it for 8 weeks to let things stabilise and do bloods to see what the outcome of the change was. some folks know that they need to wait 12 weeks as it takes time for things to even out.

With T3. I started taking it a year ago and it has taken me all this time of slow and low adjustments to feel I am nearing my best combo dose.

Things need to be done slowly otherwise you end up on a seesaw of your own making.

[Koola in reply to Lalatoot]

Thank you, Lalaltoot. Okay re changes. Will reply tomorrow.

[Koola in reply to Lalatoot]

Hi Lalatoot: Please read my answer to Greygoose. Sorry it’s taken a bit longer to answer.

[Koola in reply to Lalatoot]

Here's my last reply to Greygoose: Of course, you’re right about FT3 but I only discovered this forum two years ago. (As mentioned, before, I’d just been told to test T3 & T4 with TSH.) But until summer 2018, I was only testing every three months. And usually stayed on same, bear the 100 once in a while. Which I could manage, but I only got worse with time.

So I don’t think there’s been too many changes and now I’m confused: I was told twice here to raise by 25mcg and test again in 6 weeks; and to titrate; to see how I felt on higher dose etc. Now I’m on 88 again , as I was for years when I only got worse. Since FT3 & FT4 are still low, I was told again to try 100, but when I do I’m even more incapacitated on top of feeling hyper and not being able to relax or sleep.

I’m now trying to raise Vit. & iron levels, which apparently need to be optimal until I can try T3 again. I don’t know what else to do. All suggestions welcome!