T3 prescription at last!!: After 17 yrs of having... - Thyroid UK

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T3 prescription at last!!

fedup profile image
16 Replies

After 17 yrs of having hypothyroidism, and 17 years of struggling on T4 only, and after what could be approximately 15 years of trying to convince many GP's and Endocrinology consultants - I have finally found a GP who's agreed to supervise me on a trial of T3, with T4!

However, after all these years, I now have so many symptoms of hypo and hyper, that I'm scared that the long awaited treatment may not work for me.

My question is this : I used to be on 125 mcg levothyroxine, (taken at bedtime). The GP has reduced this to 25 mcg, and a 20 mcg tablet of Liothyronine which I have to cut in half, for a daily 10mcg dose. (Taken together an hour before breakfast)

Could anyone tell me if he has worked out the dose so its equivalent to the original T4 dose, or if he's possibly under medicated?

Many thanks in anticipation!

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16 Replies
MaisieGray profile image
MaisieGray

There's no absolute equivalent, but if you estimate that 10 mcg T3 roughly equates to say, 40 mcg T4, your new total dose is only c65 mcg T4, a not inconsiderable reduction from 125 mcg T4. There is no reason to take your meds in the morning, and given that you are reducing your T4, adding T3, reducing your total dose, I'd suggest that initially at least, you keep at least one constant and continue taking your meds at night, especially if that suited you. (I took a T4/T3 combo of 125mcg / 20mcg at night for 9 years without a problem). Regarding your dosing, what were your latest blood test results on mono-T4? That will give you an indication whether you need to reduce your T4 at all, and if so, by how much.

LAHs profile image
LAHs in reply to MaisieGray

Yes, agreed, there is no direct equivalence of Levo to NDT dose. My Levo dose which worked was a minimum of 137mcg Levo, when I switched to Armour NDT I was put on 1.5 grains. A popular scale says that this is equivalent to 90 mcg Levo. At first I was horrified and disappointed that my dose had been reduced drastically but it was correct. I felt just as good on 1.5 grains NDT than I did on 137 mcg Levo.

Oh, and while we are on this equivalence topic, 1 grain of one NDT is not the same as 1 grain of any other NDT. It's a mess out there!

thyr01d profile image
thyr01d

Hi fedup, first of all congratulations, you must be pleased.

I have a similar history to you and my endo started me on a dose like you have been started on. I have read (one of the specialists work) that for those of us who have been on the wrong meds or too low dose, we have to start carefully and very gradually build up. It's what my consultant did with me and it's worked well, I have far more energy now, so, have faith - you can always ask for an increase.

Also, it's not often mentioned, but there are nasty side effects from too high a dose. My brother's first girlfriend had a funny voice and 'popping out' eyes as a consequence of being given too high a dose, non-reversible effects.

Although you didn't ask about timing, having read MaisieGrey's advice I'd like to put forward, respectfully, a counter argument. T3 'peaks' around one hour after taking it, and, for some people keeps them awake. Some people on here do take it at bedtime and some during the night, their whole dose, and then sleep well and do very well (Dr Toft's recommendation to saturate the cells). Personally I am very active and I have to adjust my dose according to my activity level so taking it at night would not work well. I teach Yoga so when teaching through the day and in the evening I take T3 early morning, late morning and then around 6.00 - 8.00 pm. When having a less active evening I take it earlier, 4.00 - 6.00 so that I can sleep.

I would recommend that you follow your endocrinologist's advice on timing then, if finding it's not working for you, seek his advice. My consultant/s are very open minded, helpful and willing to let me experiment - they listen, I hope and expect yours is the same.

Hyburn profile image
Hyburn in reply to thyr01d

Am very interested to hear more about Dr Toft's advice on 'saturating the cells' with one dose of T3 during the night so I can discuss it at my next appointment with him.

thyr01d profile image
thyr01d in reply to Hyburn

Sorry Hyburn, I made a mistake, meant Dr Lowe but if you start a new post one of the administrator will give you loads of helpful advice and links.

Hay2016 profile image
Hay2016

I too was on 125, dropped to 100 and added up to 5 t3 over 2 weeks. Held and tested, tsh had risen for me t4 lower and t3 still not fab. Raised t4 to 100/125, held, tested. T4 high in range so then increased t3 to 10 over a week. Long process but at a point where feel much better. May need slight increase in t3 to 12.5.

If gp has dropped t4 to 25 I think he’s dropped too low. Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Hay2016

I have ended up (after much experimenting) on 20mcg daily (testing positive for heterozygous DIO2)

T3 - 10mcg waking, 5mcg at 3pm and 5mcg at bedtime

Plus 112.5mcg levothyroxine at bedtime

Always same brand of T3 - Morningside Healthcare

Levo always Mercury Pharma

Regular vitamin supplements to keep optimal, strictly gluten free diet and soy free. Low carb

Initially my levothyroxine was reduced to 100mcg from 125mcg. FT4 dropped right to bottom of range, felt very rough. More on my profile

shaws profile image
shawsAdministrator

I am not medically qualified but your new 'combined dose' is equal to around 85mcg of thyroid hormones.

I think your doctor is erring in caution as several Research Depts have stated that a T4/T3 combination of 3:1 or 4:1 combination is best.

SlowDragon profile image
SlowDragonAdministrator

That dose reduction of Levothyroxine is likely far, far too much

Dose of Levothyroxine is usually only reduced BY 25mcg, not down to 25mcg

Before starting on T3 vitamin levels need to be optimal

Have these been retested recently?

T3 has to be started very very slowly. 5mcg in morning for first week or so. Assuming that goes ok a second 5mcg dose in afternoon. Hold at that dose for 6-8 weeks and retest thyroid and vitamins

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test even if this means changing time of last dose

Is this how you do your tests?

Couldn't see any vitamin D test in previous posts

Folate was low

I started a T3 trial in late December. The endocrinologist reduced me from 129mcg levo to 75mcg levo plus 20 mcg T3 taken in a split dose. I worked up to the full 20mcg T3 with great advice from this forum and also followed the diet and adrenal advice from others on the forum. I’m glad I took it slow because T3 can cause peaks of feeling high until your body adjusts. I knew I needed to go to the full 20mcg of T3 when massive fatigue kicked in as the reduced T4 dose began to be evident after about five weeks. So I wonder if the T4 drop your gp suggests is too steep and if you might go slower on introducing T3.

Just to add I’m am feeling so much better but still having peaks of feeling high 4 hours after a t3 dose, so probably need to fine tune after my next bloods.

Good luck

Michael

Lucky14 profile image
Lucky14

I too was finally prescibed T3 last summer. I was on 200 levo originally, there was confusion on the Endos letter regarding my new dose. So i was taking 200 levo in the morning followed by 10mcg twice daily. Took that for a couple of months and felt a lot better in a lot of ways. Then was back at Endo and they confirmed dose was incorrect. So they changed me to 100 levo and the same dose T3. After a couple of weeks, a lot of old symtoms returned and my BP (which im on meds for) shot up even higher. I wrote to my Endo who agreed to up my Levo to 150 and still take the T3 10mcg twice daily. I have felt much better, however as my T3 tablets come in 20mcg form i have started taking it whole at lunch time and this works better for me.

Wishing you luck.

Hashihouseman profile image
Hashihouseman

I really wonder what the basis of the GPs reasoning is to drop by such a significant amount, initially at least? T3 has a much more profound and short-term affect and a physiological dose would be between five and 10 µg which would incur a reduction of T4 of 25 to 35 µg. I would not be at all surprised if you had some adverse affects from such a significant reduction in T4 and such a large T3 dose to start with. Even if it seems in the long term that you would need that kind of ratio, to begin like that seems incautious. Unless your body is not capable of converting any T4 then you are depriving the intra cellular compartments of the substrate they need to create T3 in situ.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashihouseman

GP recommending such dramatic dose change probably illustrates why T3 should only be instigated by a knowledgeable endocrinologist

jgelliss profile image
jgelliss in reply to SlowDragon

WOW !!!! What a large dose reduction at once . Does your Dr understand thyroid dosing ? This can be a shock for the body . Slow and Steady win the race .

That's huge reduction in overall dose - from 125mcg to 55mcg (equivalent). The GP might be setting you up to fail. You only need to reduce the levo if your free T4 was near the top of the range, and then only by 25mcg (to 100mcg). The usual/correct procedure is to introduce T3 gradually - 5-6.25mcg a day and retest in a month and so on. I think you will feel worse on this regime.

Hashi-hacker profile image
Hashi-hacker

Great to hear of someone actually being prescribed T3! Normally it's the reverse. There is hope! x

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