What's going on ?!: I'm desperate, scared... - Thyroid UK

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What's going on ?!

Margimet profile image
7 Replies

I'm desperate, scared, hopeless. I'm even more hypothyroid. I really don't know what to do anymore, I'm thinking of giving up on everything!

I will show my blood tests on the image.

My recent blood tests are:

August 26th

Taking compounded 100 mcg (T4) + compounded 10/10/10 mcg (T3)

Free T3: 2.04 pg / mL (range: 1.71 - 3.71)

Free T4: 0.98 ng / dL (range: 0.70 - 1.48)

TSH: 0.07 µIU / mL (range: 0.35 - 4.94)

Reverse T3: 0.10 ng / mL (range: 0.06 - 0.76)

Then on Tuesday I changed to 75 mcg (T4) + 15/10/10 mcg (T3) but I think that's not enough.

I'm completely lost, I can't get my free T3 up! What should I do? 😭 Should I change my doses of T4 and T3? Should I take ONLY T3?

Note: I'm type 1 diabetic too

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Margimet profile image
Margimet
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7 Replies
greygoose profile image
greygoose

Compounded T3? Is that slow release?

Why did you reduce your levo?

How do you take your hormone? Do you always take it on an empty stomach - both T4 and T3 - and leave at least an hour before eating? Do you take any other medication at the same time?

Margimet profile image
Margimet in reply togreygoose

Compounded T3 because I live in Brazil. There are no T3 in drugstores here. Not slow release.

In the image, I show that when I increase my T4 med my Free T3 goes down

- in November: 70 (T4) + 10/10/10 (T3). Free T3 = 2.89

- in January: 80 (T4) + 10/10/10 (T3). Free T3 = 2.63

- in April: 80 (T4) + 10/10/10/10 (T3) (huge mistake take 4x a day!). Free T3 = 2.14

- in June: 80 (T4) + 10/10/10 (T3). Free T3 = 2.30

- in August: 100 (T4) + 10/10/10 (T3). Free T3 = 2.04

(one doctor said I had to increase T4 because it had to be equivalent to T3 dose)

Best I got was FT3 = 2.89 taking 70 (T4) + 10/10/10 (T3)

Even when ReverseT3 is not high, T4 meds can still block the effectiveness of T3. I'm thinking that T3-only treatment is my solution. I don't really know.

I almost always take T4 and T3 on an empty stomach. Just not when I have hypoglycemia and I'm really hungry.

I do not take any other med at the same time as T4 and T3.

greygoose profile image
greygoose in reply toMargimet

(one doctor said I had to increase T4 because it had to be equivalent to T3 dose)

What rubbish!

Even when ReverseT3 is not high, T4 meds can still block the effectiveness of T3.

Who told you that? And how on earth would they do it? Even rT3 does not block the effectiveness of T3, that is a myth.

Have you ever tried taking your T3 all in one go? It might be more effective for you.

When you have a blood test, how long do you leave between your last dose of T3 and the blood test?

MaisieGray profile image
MaisieGray

My first thought is, how confident are you in the compounding abilities of your pharmacy, and do you know what excipients are being used? Are you in the US by the way? When I was in a couple of LDN FB groups, US members would describe the weirdest of inactive ingredients that were being added to their LDN, and more specifically, I know that Paul Robinson advises not to use compounded T3.

Margimet profile image
Margimet in reply toMaisieGray

I talked to the pharmacist. I asked not to have gluten, lactose, soy, corn, no allergens.

I'm Brazilian and I live in Brazil, I can't go to the United States :(

Compounded T3 is my only option. In Brazil there are no Armour, Cytomel, Liothyronine, NP Thyroid, Naturethroid, none of them.

MaisieGray profile image
MaisieGray in reply toMargimet

That's okay, I wasn't suggesting you need to go the the US :-) I referenced the US only because compounding retail pharmacies are very common in the US (virtually none in the UK) so it tends to be more of an American "thing" to have T3 compounded. It's not unknown that conflicting excipients have been utilised when making up meds, especially when, as in your case, patients are listing quite a number of things that must be excluded, which must make the compounder's task somewhat difficult - and it's perhaps unsurprising that the make of UK T3 that is lactose-free, is one that can cause considerable problems for people. But in any case, as I mentioned, Paul Robinson for instance, recommends compounded not be used because it is difficult to manage. So whether that may or may not be part of your problem, can only be guessed at, without knowing what inactive ingredients are being used in both meds.

ffranny profile image
ffranny in reply toMargimet

can you get these from Mexico? I am in the UK and once got these from Mexico

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