Blood results - what's next?: Hey my dearests, I... - Thyroid UK

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Blood results - what's next?

20 Replies

Hey my dearests,

I had my blood results recently and I'm a bit confused.

Tsh less than 0.01, as always

Ft4 = 19.6 (12-22), 76% range

Ft3 = 4.8 (3.1-6.8), 46% range tested 24 hrs after the dose, unable to test after 12 hrs since I take t3 once daily and my lab closes early afternoon...

This is on 125 Levo and 7.5/10 dose of t3. I was unable to raise my dose to 10 mcg only, without going down to 7.5 some days as I was getting palpitations and had trouble falling asleep and was also asking early, full of energy, but becoming anxious, nervous.

Has anyone been in this situation? I also tried to go beyond 10 to 12.5 t3 and was getting even more energy, but more palpitations, more anxiety so had to back down.

My doc has advised to reduce Levo , when this happens, as there is t3 t4 interference and I may not be able to raise my t3 more on 125 Levo.

I am very sensitive to meds. How safely could I reduce Levo and add t3? When I reduce Levo, the 2nd day I start crying and feeling miserable. I have low TSH as standard, have near to zero thyroid output so If reduce anything I get terrible symptoms before the level out build up etc .

On 125/7.5 I still have horrible hypo symptoms (stiffness, fatigue, bloating, water retention, no libido)

Thank you! :)

Cuppa

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20 Replies
Greekchick profile image
Greekchick

Hi cupofcha,

How long are you waiting between changing doses? After two days of lowering levo you will feel really bad. I have read of others on the forum who have the same experience, but they stick it out for awhile and feel better eventually. I have a similar experience with levo - my doctor had given me an anxiolytic (clonazepam) to help with the crying and anxiety until I got used to my dose. I know it’s not an ideal solution but it is not for the long term. A beta blocker will have a similar effect so it might be worth a try for you. I’m getting ready to increase my levo and expecting the anxiety and palpitations, so I am prepared for it now. As you know I am also very sensitive to thyroid meds.

It’s not easy and I know you have struggled a lot. There is no easy solution to your situation - and it may get worse before it gets better. I know that’s not easy to hear, but I am facing a similar situation. I have to increase both my T4 and T3 - and stagger the timing of the increase so I can tell which one is doing what. UGH.

But I am optimistic and I hope you can be as well. Wishing you all the best and hugs! 🤗🤗

in reply toGreekchick

Hey Greekchick! 🤗 Thank you for your reply. Are you having anxiety crying when you go up or when you increase or both? I have been on this dose of Levo for 3 weeks now, previously was on it for 4 weeks when I also added 10 t3, had similar reactions. I have three international flights including one to San Francisco in the next four weeks and need to look after myself! This is a great advice, I will ask my doctor next week about these meds, beta blocker used to be quite good for me, I only have two pills left. It is a bit strange that I have to keep lowering my t4 to accommodate t3, as I thought I would need to have both at a good level! But seems it's the t3 that gives me what I need, mainly. When I lowered Levo recently I felt super tired after a day, but also better in so many ways, like my spaced out feeling went away, then bad after a week, but t3 helped a lot, so my plan is to reduce Levo for a few days and then go up with t3 after 3 days of lowering. Just scared to do it! 🙃

Greekchick profile image
Greekchick in reply to

Hoping you feel better soon. You’ve gotten some good advice from SlowDragon so I don’t have anything else to add. All the best! 🤗

in reply toGreekchick

Same to you Greekchick 🤗

SlowDragon profile image
SlowDragonAdministrator

So your T3 result is not accurate

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Have you tried splitting dose of T3 anyway? For example

3 x 5mcg at 8 hour intervals

When were vitamin D, folate, ferritin and B12 last tested?

What supplements do you currently take

Are you on strictly gluten free diet?

in reply toSlowDragon

Hey SlowDragon, I can't split t3, makes me feel really dizzy and uneven, I need to take all at once, this is when I feel the best. I called another lab and they said they can take my bloods at 2 pm latest so that's what I'll do next time, so 8 hours after t3 dose.

By my symptoms I know they were overdosed, even though ft3 is midrange after 24 hours. Once lowered t3 by 2.5, all gone.

All my vits will be tested again in September, last time tested in June, B12 top range, folate top range, vitamin D went down to 30, so started supplementing higher doses, as normally I have it at 120, iron top range, ferritin nearing low midrange, working on it for months and months.

Gluten free doesn't make any difference, been on it for years, my antibodies never reduced because of it, however, selenium helped me a lot.

Thanks x I just needed an advice how to lower t4 slowly in order to add t3. I can't lower t4 for 6 weeks and wait to add t3, the reason is that my thyroid is completely shut down, so I can become bedbound pretty fast...even with low ft3 ft4 my tsh is still suppressed at 0.1 and never goes higher than this xxx

SlowDragon profile image
SlowDragonAdministrator in reply to

Have you tried splitting Levothyroxine into two doses?

Some of us find this helps.

Personally the only way I could ever reduce dose Levothyroxine was by also taking propranolol. But you can't take propranolol if you have asthma and it's only a "sticking plaster" not a cure.

in reply toSlowDragon

I actually haven't tried that, no, I have read some research that this might be helpful for some. I could give it a try, but u think at the end of it, I need to make more space for t3...

Gotcha, it looks like I really need a new prescription for propranolol then! :) I lowered from 137 to 125 without the need for it, but now might be a bit more difficult...I think the anxiety appears for me because up and down fluctuations in lowering, never really have anxiety when undermed, in fact, I'm so mellow I barely care about anything and of course sleep like a baby 😀

SlowDragon profile image
SlowDragonAdministrator in reply to

I was stuck on propranolol for almost twenty years...more on my profile

Propranolol was transformation, as just on Levothyroxine I couldn't function at all. I assume due to adrenal insufficiency

But getting dose Levothyroxine high enough and vitamins optimal and dealing with food intolerances eventually meant I could manage without propranolol.

Would suggest you might only try tiny dose. Like 1/4 or 1/2 of 10mcg tablet initially

in reply toSlowDragon

Wow, 20 years!!!

Yeah seems that our stories are a bit different, but I'm super happy to hear that you were able to manage it after all this. I can tolerate Levo with no issues, just never have a good enough conversion and then with adding t3 it starts getting tricky to the point that I was drugged up on 137 and 7.5, reduced Levo and it went away, just one is blocking the other...

Do you mean with t3? I am currently on 7.5 as I can't raise to 10 without palps, anxiety and problems falling asleep. Which prompts me to think that I need a slight Levo reduction.

SlowDragon profile image
SlowDragonAdministrator in reply to

Yes everyone is different and it takes loads of experimenting to find what works for you

Do you always get same brand of Levothyroxine and Liothyronine?

in reply toSlowDragon

Totally! I just emailed my doc asking for propranolol, fingers crossed he posts the prescription to me!

Always, I take Letrox t4, produced by Berlin - Chemie, its very clean, and German Thybon for t3. Germany all the way for meds :)

SilverAvocado profile image
SilverAvocado

Cupofcha, you can reduce Levo and increase T3 at the same time. You don't have to wait and stagger them. If you want to be super cautious you can reduce the Levo and then wait a few days for some of it to wash out and then add the matching dose of T3.

T3 is more potent than T4/Levo. Estimates vary and there is no true equivalency, but T3 is about 3-5x more potent. For example 10mcg of T3 is about as strong as 40mcg of T4. You can use these figures to work out a roughly equivalent amount to raise your T3 as you reduce T4.

Taking different doses of T3 on different days is probably a bad idea. Unlike Levo, which has a long half life and can average out over several days, T3 is quick acting and is all used up on the day (or even half day) that you take it. Different doses on different days is a stressful situation for your body.

It's worth trying different ways of splitting the dose to see if you can find one that suits you. Splitting is a more gentle way to take it, although I did find for myself I didn't really need to do so until I was on a higher dose. Eventually I noticed there was a difference in symptoms in the morning after I'd taken my T3 and in the evening. But it can also help with symptoms like palpitations because you aren't ever having just one big spike in your blood levels.

One little thing I found, the first time I ever tried to split I just cut my morning dose in half, took half in the morning and then half later. This left me feeling unwell for several days and eventually I reverted back. Later I tried a slightly different way; on the day I switched I took my morning doses as usual and then an extra half dose later. Then continued with the smaller doses as planned. I think with the first way of trying it, it's experienced as a half day's missed dose , using the latter method it's a half day's extra dose.

Once you're taking some T3, the freeT4 level is less important. Overall freeT3 is the important number, as it's the active hormone and most closely reflects symptoms. I am in a similar situation myself, reducing some T4 to add T3, and it seems like the higher T4 levels might be causing me problems. It's possible this is a common situation to be in when approaching the sweet spot, juggling the positive benefits and the negative symptoms, trying to figure out which dose is ideal.

in reply toSilverAvocado

Thanks SilverAvocado, really appreciate your reply, a lot of insights!

I will indeed swap one with another, trying to calculate how much to go with.

My calculations based on what I know, by reducing by 25 mcg t4 I was able to take just over 7.5 mcg t3, 10 was too much so. I could reduce by 12.5 t4 and go up to 12.5 t3, that makes sense to me.

Best of luck with fine tuning, we will get there!!!

SilverAvocado profile image
SilverAvocado in reply to

You're very welcome :) Good luck!

in reply toSilverAvocado

Thank you :)

carroll998 profile image
carroll998

Look ideal bloods to me but we are each different 😊

in reply tocarroll998

Exactly :) I wish it were that easy!!!

carroll998 profile image
carroll998

My t4 and tsh the same as you but t3 on lower part of normal or sometimes below. I'm not on t3. I have just changed to ndt which as t3 in it. Hope it works 😊 good luck hope you find the answers your looking for

in reply tocarroll998

And fingers crossed for you too 💪 we will get there!!!

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