The Great Thyroid Experiment: Im Thyroid-less and... - Thyroid UK

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The Great Thyroid Experiment

Batty1 profile image
16 Replies

Im Thyroid-less and been on 100mcg T4 and 10mcg T3 pretty much since losing my thyroid and although I haven’t felt terrible on these dose Im also not feeling 100% if thats even a possibility for me to achieve now that I’m thyroid-less.

My experiment and why…. My Cholesterol has skyrocketed after my thyroidectomy and I developed Psoriatic Arthritis … it hasn’t been a fun ride for me more like a never ending nightmare and I decided back in March to try and turn my crap existence around to a less crap existence… My Endo is unhelpful and lacks the skill to sympathize and my Functional Medicine Doctor is just a statin pusher which I can not take.

The Experiment:

I have for the past 2 months received and excess amount of T4 and T3 (between pharmacy and Endo) neither of them know whats going on so they keep ordering and sending me thyroid med (idiots)…. So with my recent march/April lottery of thyroid meds I decided to up both my T4 and T3 meds (very tiny additions each day) to see what happens to me/ thyroid levels.

I take 100mcg (T4) and 10mcg (T3) Normal dose everyday.

I added in everyday (1/4 tablet) of EXTRA T4 pill ( 50mcg pill last 4 days)

I add in everyday (1/4 tablet) of EXTRA T3 pill (5mcg pill last 4 days)

I rest (NO Extra pills) for couple of days.

Along with diet changes and the ability to move a little more I have managed to lose 3 pounds and keep it off since April …. I Haven’t been able to lose anymore…I have come to the conclusion that my diet isn’t the huge factor to my thyroidectomy weight gain and that definitely other things are in play…. Still Im happy with this small amount.

Labs: Jan 2023 “BEFORE” adding the extra meds and diet changes.

TSH: 0.363 (L) … Range 4.50 -4.500 (2.1%)

T3: 123 ….Range 71-180 (47.7%)

FT4: 1.32 ….Range 0.82-1.77 (52.6%)

FT3: 2.7 ….Range 2.0 -4.4 (29.2%)

Issues: No energy and psoriatic arthritis activity worse and cholesterol hideously high and off and on palpitations.

Labs: May 2023 (AFTER) additional medication and diet cleanup. SAME LAB REFERENCE as ABOVE at same time of day 9:15am blood test fasting.

TSH: 0.080 (L) ……(9.1%)

T3: 150 …..(72.5%)

FT4: 1.43…..(64.2%)

FT3: 3.7……(70.83%)

Issue/ improvement: Ability to do things longer without fatigue, small weight loss, palpitations gone, and reduction of cholesterol by 12 points (not huge but at least it hasn’t increased) ….. Random issue with increased appetite which is when I usually take a break from the extra pills and it settles down.

I believe I used the correct thyroid calculator for the %.

Help me understanding why is my TSH increasing with the additional T3 I thought it would decrease not increase….. TSH is to remain low due to thyroid cancer.

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Batty1
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16 Replies
greygoose profile image
greygoose

TSH: 0.363 (L) … Range 4.50 -4.500 (2.1%)

TSH: 0.080 (L) ……(9.1%)

Are you sure you did your calculations right, because your TSH has actually don't down - 0.08 is lower than 0.363.

Were both tests don't under exactly the same condidtions: same time of day after fasting over-night?

Whilest it was obviously a good idea to increase your dose yourself, if your doctors wouldn't. It's not a good idea to vary your dose of T3 like that. With levo you can do that, but with T3 you need to take the same dose every single day.

Batty1 profile image
Batty1 in reply to greygoose

I used this calculator thyroid.dopiaza.org

If I wasn’t on T3 prior to my current Endo he wouldn’t even prescribe it and he doesn’t believe in AT either because it comes from a pig .. lol.

Both test under exact conditions and time … Double checked the % and that’s exactly what it says .

greygoose profile image
greygoose in reply to Batty1

Well, Tatty has found the TSH percentage slip up. :)

Lot's of endos are anti T3 because they don't know what it is or what it does. And, even more are against NDT (AT?) for all sorts of weird reasons.

How long was the gap between your last dose of T3 and the blood draw? Because I agree with tattybogle that is a huge jump for even 5 mcg two out of three days.

tattybogle profile image
tattybogle

TSH: 0.08 mU/l (Range 0.45 - 4.5) -9.14% ( 4.50 -4.500 must be a typo in your original post )

that's Minus 9.14% Batty

, not 9.14%

It's a bigger increase in fT3 that you'd expect for such a tiny increase in T3 dose . assuming you do mean you only added an extra 1.25 mcg on the days you took the extra ?

Batty1 profile image
Batty1 in reply to tattybogle

oh ok that makes sense I must not be able to see the -

Batty1 profile image
Batty1 in reply to tattybogle

FT3 will not be 100% accurate I took the test at 11:15am and I did take me pills at 5am ….. The reason is the test had to be done because the lab messed up the original test on 4/21/23 along with other labs….. I definitely will have to redo it and could kick myself for taking the pills anyway …. My FT3 has never moved from 2.7 until this test which was 3.7 so yes its definitely higher because I took the pills without knowing they we’re redoing this test.

Margo profile image
Margo

This was an interesting read for me. I can't help you with any of the questions you ask, but can only speak from my personal esperience. I too have no thyroid since 2003, (cancer), also struggled like you, NEVER feeling 100%. There have been times when I have been ok, and as soon as I got comfortable with the meds' I was taking either the prices went up to a ridiculous level, I had trouble accessing it, the company closed down or they changed the ingredients.

Since the summer I have been taking Thyroid S, I now realise that clearly I am not taking enough. I was taking x 2 TR Mann and then went on to 1 x Thyroid S in the summer. 2 grains just seemed too much. Consequently I have all manner of ailments the worse being that I appear to have lost my hearing. Like you since a week ago I have been adding a bit extra each day in the hope that I can resolve things. I don't feel better yet, but am not giving up as it is just a week, I guess I am less cold which is a slight improvement. I just want my hearing back, and hope I haven't done irreparable damage to my ears....

All I can say to you is what Dr Peatfield used to say to me and his other patients, "go with how you feel", if taking extra is improving your life, it has to be right.

(I personally would not be bothering with thyroid calculators and the like)

Batty1 profile image
Batty1 in reply to Margo

Its a painful and lonely experience living without a thyroid.

Margo profile image
Margo in reply to Batty1

Yes I agree.

Rosebud1955 profile image
Rosebud1955 in reply to Batty1

Agree 100%. Very sad & lonely, even close family members don’t get it.

hypogrand profile image
hypogrand in reply to Batty1

Yes it is....no one understands.

SlowDragon profile image
SlowDragonAdministrator

I added in everyday (1/4 tablet) of EXTRA T4 pill ( 50mcg pill last 4 days)

 I add in everyday (1/4 tablet) of EXTRA T3 pill (5mcg pill last 4 days)

I rest (NO Extra pills) for couple of days.

You can NOT take different dose T3 on different days

It’s ESSENTIAL to take same dose T3 everyday

Batty1 profile image
Batty1 in reply to SlowDragon

believe me I tried to cut the T3 with scapula and pill cutter and they just crumbled to dust and my T4 won’t cut without falling into dust …. I really don’t see why taking a slightly different amount each day (nibbling pieces off the pills) will make a difference at the end of the week Im still only taking and extra 5mg T3 and Ive been doing this for 2 months and haven’t experienced any kind of surge or palpitations one day versus another day … so the way Im doing it is the only way I can figure out how to do it without eating through my medication.

SlowDragon profile image
SlowDragonAdministrator in reply to Batty1

this sort of scalpel cuts 20mcg into 1/4’s easily

scalemodelshop.co.uk/s-s-sc...

Batty1 profile image
Batty1 in reply to SlowDragon

I bought a scapula same as you posted except with green handle.

Smorzando profile image
Smorzando in reply to SlowDragon

I wish it did, SlowDragon.I have 20mcg Teva liothyronine tablets and however careful I am, whichever scalpel, craft knife, or pill cutter I use, they are absolutely impossible to cut into accurate quarters.

Perhaps not all pills are as easy to cut as you think; the Teva are slightly convex and I think that adds to the difficulty.

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