Where to start?: A brief introduction. Diagnosed... - Thyroid UK

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Where to start?

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A brief introduction. Diagnosed papillary carcinoma 2008 thyroid and a good number of lymph nodes removed. Three sessions of radioactive Iodine. 250 mcg Levothyroxine reduced to 225 mcg because of palpitations and other issues.

Can't sleep very well, aches pains, loss of strength, shakey hands, always cold etc. all of which could be down to getting older. Endocrinologist not concerned so I made some enquiries on my own.

High Cortisol

Low Vitamin D

Low Iron

B12 (lower part of range)

FT4 18.1 <11.5 -22.7> pmol/L

FT3 4.5 <2.8 - 6.5> Pmol/L

So...

I posted these results on another forum and they suggest I have rT3 issues and to resolve this I need to drop my T4 dose to 50mcg and then slowly add T3 so I can get to an optimal level whilst working on my other problems.

Dropping to 50mcg T4 is a bit scary. My TSH is fully supressed and needs to remain so (my main concern) T4's long half life means I'll be OK for a few days at least which gives me time to raise my T3. From what I have read I should start on 5mcg T3 dosing three times a day (25mcg tablets) and build up to slowly to 15mcg three times a day. So that would be 6.25mcg to 12.5mcg dependent on how accurate my cutting is.

Has anybody else been through this process and can give me some guidance? Will just short of 20mcg/day be enough? Do I need to raise my T4 beyond 50mcg and if so when?

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15 Replies
greygoose profile image
greygoose

Hi dingdingdong, welcome to the forum.

On what did these people on another forum base their 'diagnosis' of rT3? Seems to me rather drastic to go haring off down that road without the slightest proof.

You seem to me to be converting ok. However, considering you're taking 225 mcg T4, not much of it is making it into your blood, is it. Your FT4 is not much over mid-range - I would have expected it to be higher - and your FT3 only just under mid-range. And, given you have low nutrients, if it were me, I would be looking at my gut and stomach acid/absorption before I went off into the unknown, lowering my T4 and taking undefined quantities of T3.

Have you been tested for Coeliac? Have you tried gluten-free? Could you have leaky gut? Is your stomach acid too low?

What are you doing to raise your low nutrients? It is extremely important that they are optimal. And your palpitations on 250 mcg levo could very well have been due to those low nutrients.

So, if I were you, I would first of all address my nutritional deficiencies, and investigate my gut, before doing anything else, because nothing else is going to 'work', unless they are sorted out. :)

in reply togreygoose

It's not really a diagnosis. They based their conclusion on the fact that "FT4 is not much over mid-range - I would have expected it to be higher - and your FT3 only just under mid-range" and that FT4 that is climbing faster than FT3.

I've had long term use of a PPI which has probably caused the vitamin deficiencies and I'm already working on that. I've stopped the PPI and am using Betaine HCl & Pepsin to raise my stomach acid. I'm supplementing with B12 Vitamin D3/K2 and after I've done an iron test on Tuesday I will also supplement with Iron if I can. I'm addressing my high Cortisol.

I have been tested for Coeliac I had an endoscopy some months ago and they confirmed that I am not coeliac.

I think there is some 'proof' there

greygoose profile image
greygoose in reply to

I know it's not really a diagnosis, that's why I put 'diagnosis' in inverted commas.

I would have expected your FT4 to be higher, but that's not proof of rT3. And, to be honest, your FT3 isn't that low, considering your FT4, but I don't know how fast either of them are climbing, because you only gave one set of results.

But, if you want to do the rT3 clearing protocol, if I were you, i would take the T3 all in one go. You need to saturate the receptors, which you won't do dosing three times a day. And, if you find that scary, at one point, I was taking 225 all in one go, with no undesirable effects.

greygoose profile image
greygoose in reply togreygoose

Oh, and just because you're not converting perfectly, doesn't mean that you're automatically converting to rT3. You need to have a lot of unconverted T4 in your system to convert to excess rT3 - a small amount is normal, everybody has it - because it's the body's way of getting rid of excess unconverted T4. The rT3 is then converted to T2, so nothing is wasted. You do not have a lot of unconverted T4 in your system, so I would not suspect excess rT3.

SlowDragon profile image
SlowDragonAdministrator in reply to

You don't have to be coeliac to still find enormous benefits from going gluten free.

Your antibodies are raised indicating underlying issue. Most commonly gluten

Leaky gut (as result of low stomach acid) makes holes on gut lining - gluten crosses into blood

A good probiotic will help increase gut bacteria to help repair gut lining

Vitamin B complex also helps gut bacteria

in reply toSlowDragon

Antibodies are raised? I already take Vitamin B complex and make my own milk kefir

SlowDragon profile image
SlowDragonAdministrator in reply to

Ignore antibodies bit

I thought I'd read on your test results slightly high antibodies- but must have been dreaming!!

in reply toSlowDragon

That's OK. My blood test did check my antibodies. I also ferment vegetables so I should be getting all the right bugs in my gut. I have a wood fired pizza oven in my back garden and the thought of a coeliac diet isn't something I would want to do.

As you will know the half life of T4 is much longer than T3 in fact T3 only lasts for a few hours so there is evidence to suggest that taking T3 three or perhaps four times a day is a better option. Time to ding ding dong

greygoose profile image
greygoose in reply to

T3 only stays in the blood for a few hours. It stays in the cells for a few days. That's why you want to saturate the receptors and fill the cells. It doesn't matter what's in the blood, it's what's in the cells that counts.

Clutter profile image
Clutter

DingDingDong,

You're going to feel like hell if you reduce dose because someone is guessing you may have high rT3. Why not test rT3 first. thyroiduk.org.uk/tuk/testin...

Mid-range FT4 and FT3 which is less than halfway through range doesn't necessarily mean that rT3 is high. It may be beneficial to add some T3 to your current dose to raise FT3.

Raventhorpe profile image
Raventhorpe

Hi dingdindong would it not be better to have a test for rt3 first before going down the route of changing your meds

in reply toRaventhorpe

Yes Raventhorpe I thought I'd asked for the rT3 to be done but alas no. I've requested a test. I'm pretty sure my assumptions are right.

So back to the original question. Has anybody been through this process?

greygoose profile image
greygoose in reply to

Yes.

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