How much T3 after a thyroidectomy: I had my... - Thyroid UK

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How much T3 after a thyroidectomy

Margo profile image
15 Replies

I had my thyroid removed 10 years ago due to cancer. I am now reasonably steady on 40 mcg T3. I have noticed that a lot of people appear to take a lot more than I do and they have a thyroid. I suspect I may be under medicated as I still have symptoms. I am 5' 4" weighing 9st 8lbs/61 kilos., is 40 mcg of T3 sufficient medication?

Thank you

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Margo profile image
Margo
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15 Replies
shaws profile image
shawsAdministrator

Everyone differs so much we cannot predict what dose someone can have. The only way to tell is to increase slightly if you feel undermedicated and see if that makes a difference. Give it a chance and don't switch doses too often. Obviously if you feel overmedicated, you drop down.

Margo profile image
Margo in reply toshaws

Thxs Shaws, I have tried on several occassions to up my meds, but always end up feeling rough. Have decided I would rather be under medicated and be able to get by.

Clutter profile image
Clutter

Post thyroidectomy and pre RAI I was prescribed 3 x 20mcg T3 daily and weight was 48kg. I suspect you are undermedicated.

Margo profile image
Margo in reply toClutter

Thxs Clutter, did you go straight on T3 after your op' and straight on to 60mcg? How do you feel?

Clutter profile image
Clutter in reply toMargo

Margo,

I had hemilobectomy in Dec 2011. Histology was Hurthle cell carcinoma. No meds, remaining lobe was supposed to pick up. I don't think it did.

Completion March 2012 and 3 x 20 mcg T3 day after. I don't recall any adverse reactions. I wasn't feeling well, however, I'd ignored symptoms of spiralling Hashi's for over a year and was very low, mainly extreme fatigue, palpitations and shortness of breath.

RAI was end of May 2012 and I was feeling a lot better.

Then I was put on 200mcg T4. 18 months to reduce it to 100mcg by which time I felt poisoned, suffered palpitations, racing heart, tremors, had fibro, COPD and a host of other problems. Stopping T4 and all meds in Nov acted as a detoxand ALL the above symptoms cleared. I was able to resume 100mcg T4 with 25mcg T3 in Dec without feeling poisoned. Now taking 75mcg T4 + 20mcg T3 prescribed by endo. Onwards and upwards hopefully.

Margo profile image
Margo in reply toClutter

Thank you Clutter, very helpful reply.

Rose2408 profile image
Rose2408 in reply toClutter

Hi clutter! I found another post...easy to find you now, I just look for dosage questions lol....I'm just wondering as I don't see my new endo till April if you could help me with meds...I've increased my dosage now to 100mcg T4 & 40mcg T3 (for last 3wks) but I'm having palpitations insomnia etc, I do take 50mg minax, beta blocker per day for heart. I'm having bloods tmrw & I think ideally my TSH needs to be 0.9 is it (? forgotten now?) to stop my Tg rising any higher. Can I go higher & ignore the symptoms if my TSH is still high? Can I continue on this dosage & ignore symptoms? Ill ask GP tmrw if Minax dose is high enough but I think ill get the blank face! Anyway hope ur doing ok cx

Clutter profile image
Clutter in reply toRose2408

Rose,

Taking T3 will suppress your TSH. It does sound as if you may be a bit over replaced if you're having insomnia and experiencing palpitations whilst you are also taking beta blockers.

I would reduce the T3 by 10mcg for a couple of days and by another 10mcg if that doesn't resolve.

I don't believe taking higher meds will reduce your rising thyroglobulin. My understanding is that it has risen because thyroid cancer cells have been detected in your lymph nodes and increased meds will not prevent spread, only surgery, RAI or external beam radiation will kill off the cells.

I must stress I am not a medical professional and Ithink you need guidance on your meds from a professional. Is your endo available by telephone or email to advise you prior to your April?

Rose2408 profile image
Rose2408 in reply toClutter

Hi Jackie! I know you're not a GP darling & I would never put that on you! But you do know enough to help me talk to GP today :)...I'm also on the ThyCa forums & the increase in T3/4 is used as "suppression therapy" to stop the cancer spreading, it works exactly as you said however it stops the body producing any protein/hormone from existing thyroid cells/cancer therefore stopping any spread. The TSH must be suppressed to maximum capacity for it to work. I know others take 400-500 mcg T's but I'm struggling to get it past 260-300 total T's. Grrr it is hard. :) thank you xx

Clutter profile image
Clutter in reply toRose2408

Rose,

I thought the point of suppression was to prevent recurrence. I didn't realise it would stop spread of recurrence.

I'm a member of ThyCa too, but haven't looked in in a while. I'll look out for you.

What is the health system in Oz? Private like USA or free at the point of use in UK?

Good luck tomorrow x

Rose2408 profile image
Rose2408 in reply toClutter

Hey ! Yes I have no doubt about it stopping the spread. I have even read as long as your immune system is strong enough (I take 18 "Transfer Factor" tabs from NZ to up my immune system up to 400%) it can even kill off the cancer if suppression is great enough. I'm trying to get my to 0.01 TSH but it is very hard!!! I'm up down up down, taken me ages to get to this amount...can't wait to see what my TSH is now!!! Very excited to know:) . Yes we have similar to you guys, better I believe. We have a lot more freedom to choose treatments specialists etc just need to know what to ask for!! I do have a lot of out of pocket expenses as I see so many specialists & not that I chose private but where I live the public isn't good, that's why I was so happy to land that Prof I mentioned!!! It's the best & free :) & every surgery costs me $450 & i only live on a invalid super payment with a child!! But things are looking up!! Love Donna-Rose xx

Clutter profile image
Clutter in reply toRose2408

Donna-Rose,

I couldn't hack undetectable TSH at 200mcg T4. The cure was worse than the perceived risk and I spent 18 months begging for reduction but think a toxic dose had built up.

QoL was very poor until I detoxed and on 75mcg T4 + 25mcg T3 I'm not quite suppressed.

Would IV T3 be an option? They give it to myxoedema coma patients. I imagine it is pure T3, without fillers that synthetic T3 has. Maybe worth discussing with your GP?

Jackie x

Rose2408 profile image
Rose2408 in reply toClutter

Hi again! You're up late!!ol - I could try it. I also couldn't handle the T4 that's when I started looking into T3s. And in comparison I'm doing really well - I think ill drop t4 down to 50 & up t3 to 60 & increase from there...my body is reacting to IVs & causes bad abscess as rejecting foreign body, so that's out but thank you xx

Orangelady1 profile image
Orangelady1

I was told that 100 Levo was the lowest anyone who has had a TT due to cancer would be on????

Margo profile image
Margo

Thanks Orangelady1, that is what I was started on, and my friend who had the same op' is on 100 and doing fine. So your reply sounds about right. Thank you.

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