Can anyone help with my latest results please?

[Jojozo]

Hi everyone, I got my latest results a couple of weeks ago and I'm after some advice please. I have Hashimoto's and I'm on 100mg Levothyroxine and 6.25mg of Cytomel daily. My doctor is very keen for me to stop taking T3.

I've always resisted in case I feel worse but my serum TSH has been suppressed for over 5 years now (the reading is always either 0.01 or 0.02), which is coincidentally when a private doctor prescribed T3 to me. I feel totally exhausted and out of sorts at the moment and a bit confused as to what to do next.

I did get referred to an NHS endocrinologist but I cancelled my last appointment because I had been going every six months for two and a half years, during which time I saw several different doctors and got given very conflicting advice. Over the past year I've dropped the Levo from 150mg to 125mg and now 100mg on my doctor's say so, and I'm wondering whether it needs increasing again or if my readings are okay.

Thanks in advance for any help.

[SlowDragon Administrator]

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw.

If also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

How long since vitamin D, folate, B12 and ferritin were tested?

Add results and ranges if you have them

Are you now on strictly gluten free diet?

Your FT3 looks too low. Have you tried adding a second 6.25mcg dose 8-12 hours after first dose?

You might Even need 3 doses of T3 per day, 8 hours apart.

[Jojozo in reply to SlowDragon]

Hi SlowDragon, thanks for coming back to me. I made sure not to take any medication for 24 hours before the test but I had eaten that day because the test was in the afternoon.

My vitamin levels were done quite recently via a private doctor so I've been on some supplements. I also got tested for food intolerances at the same time and was told I'm not gluten intolerant, but I am predominantly gluten free anyway.

I've been told by several doctors that the reason my FT3 is low (apologies, it's 0.01 or 0.02, not 0. as I've stated) is either because I'm taking too much Levo, or because I'm taking the T3, which is suppressing it. I'm so confused!

[greygoose in reply to Jojozo]

If you left 24 hours between your last dose of T3 and your blood draw, you have a false low FT3. You should only leave 8 to 12 hours - 24 hours is for levo.

Your TSH would have been higher at 8 am than it would be in the afternoon - so would your FT3, but only slightly. So, these labs aren't much good, really.

But, if taking the T3 that has suppressed your TSH, and for a good reason: you don't need it. TSH is a pituitary hormone. When the pituitary senses that theirs not enough thyroid hormone in the blood, it increases its out-put of TSH to stimulate the thyroid to make more hormone. When the pituitary senses that there is enough circulating hormone in the blood, it reduces, or stops, it's production of TSH because the thyroid no-longer needs to be stimulated. Of course, the pituitary doesn't know if the hormone it senses is exogenous or endogenous, if there's enough of it, it reduces the TSH. Doctors just do not seem to understand that. Low TSH does not always mean you're taking too much, it can also mean you're taking just enough - or somewhere between the two.

[Jojozo in reply to greygoose]

Thanks so much for your reply Greygoose. I might try cutting out the T3 for now and see if my levels go up.

[greygoose in reply to Jojozo]

Why would you do that? You'll make yourself very ill.

[Jojozo in reply to greygoose]

Because my levels only went down when I started taking it, so I'm assuming that's a bad thing? I'm only taking a tiny amount. My levels used to be within range before I started taking T3, even though the private doctor I saw described my levels as 'disastrous'. That's why I feel so confused about it!

[greygoose in reply to Jojozo]

But, I explained to you, above, why it didn't matter if your TSH level went down. And, your FT4 level will go down, also, when you start taking T3, but that's not a bad thing, either. That's natural.

Why in god's name did your stupid endo describe your levels as 'disastrous'? They are more or less what I would expect of someone taking 6.25 mcg T3. What you actually need, is an increase in T3, not to stop taking it. That would be silly.

[Jojozo in reply to greygoose]

Apologies, I find it all very confusing. It was a private doctor who described my levels as disastrous five years ago and put me on the T3. I hadn't taken it before then.

My levels were much higher back then (I don't have them to hand but I think they were around 4), and now they are consistently 0.01 or 0.02. It's my GP who is now trying to get me to stop the T3, as have all the NHS endos I've seen.

I was going to stop my T3 and up my T4 by 25mg, but I'm guessing that is the wrong thing to do? Thanks for your help.

[greygoose in reply to Jojozo]

You mean your TSH level was 4? When we say 'levels' in the plural, it includes FT4 and FT3. But, it really doesn't matter if your TSH is 0.01, it's irrelevant when you're taking T3. Did you not understand my explanation of what the TSH does?

The reason doctors are trying to stop people taking T3 is because it's expensive, not because it's bad for them. They honestly do not care about the welfare of the patient, they only care about money. It really has nothing to do with your low TSH, and everything to do with their bank-balance.

Presumably your old endo put you on T3 because you don't convert T4 to T3 very well, and that's why your results were disastrous. That won't have changed. If you stop taking the T3, you will go back to the way you were before you started it. T3 is the active hormone needed by every single cell in your body - T4 (levo) is the storage hormone that needs to be converted to T3 to make you well, and keep you well. Increasing the levo by 25 mcg is unlikely to improve your FT3 level enough to make you well.

[greygoose in reply to Jojozo]

Read what diogenes has to say about a suppressed TSH on this thread:

healthunlocked.com/thyroidu...

Diogenes is a researcher into all things thyroid, and really know what he's talking about.

[Jojozo in reply to greygoose]

Brilliant, thank you. That does make sense. Even though I've been on medication for over 20 years now I still can't get my head around how the levels work (I'm a writer so I like to say I'm creative rather than analytical to make myself feel better!).

[greygoose in reply to Jojozo]

Not sure what you mean by 'how the levels work', but if you have any questions about it, please do ask.

[Jojozo in reply to greygoose]

Sorry, I'm referring to my results as my levels. One quick question if you don't mind - if my results are as they are I should carry on with the T3 and not stop it?

[greygoose in reply to Jojozo]

As I said before, you really need to increase it, not stop it. Despite the low TSH - which is a very bad indicator of thyroid status - you are under-medicated on your present dose. Your FT3 isn't even mid-range. Most hypos need it up nearer 5.5, or even closer to the top of the range, to feel well. I've said several times, do not stop the T3, stopping it will make you ill.

[Jojozo in reply to greygoose]

Thank you! I promise I've got it this time!

[greygoose in reply to Jojozo]

You're welcome.