possible change from combo back to T4 only - Thyroid UK

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possible change from combo back to T4 only

130396 profile image
40 Replies

QUESTION :

For those of you that have been on combo t4/t3 but have changed to t4 only again ( either by choice or forced to due to restrictions) have you successfully settled back on T4 only

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130396
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40 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Years ago I was on NDT but actually never got to an optimal treatment level. Switched back to Levo alone where I stayed for many years, more recently being housebound and unable to work for the past 9 years.

So I'm here getting my vitamin levels right and adding some T3 and slowly but surely things are picking up.

Can I ask my you want to drop added T3?

130396 profile image
130396 in reply to Jaydee1507

I was asking how people found it going back to Levo only from either combo or T3 only

130396 profile image
130396 in reply to Jaydee1507

I’m thinking of going back to Levo only as I did extremely well for over 28 hrs. Then new Drs messed about with my dosing for 2 yrs. I then went onto combo but I’m never happy with my results. I don’t know if I’m on too much or too little of t4 and T3

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

For what reason did the doctor mess with your dose?

I see you've been having issues since starting HRT. Changing thyroid doses now might just complicate things further? Is it possible to change HRT or adjust the dose of what you're currently on? The least things we change the better and definitely only one thing at a time.

130396 profile image
130396 in reply to Jaydee1507

I’ve had problems for longer than since I stated hrt!! Where in my post did I mention I was on hrt?

I’m not feeling confident on the combo & I did extremely well on t4 only

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

I looked back on your previous posts and found the info on HRT. It's just helpful to know a bit of background.

Most people who end up on a T4/T3 combo didn't do well on just Levo, like myself. If you were doing fine on just Levo then of course you should head back to where you felt your best, but you should probably make sure you can get back the dose that made you feel well too.

130396 profile image
130396 in reply to Jaydee1507

I felt extremely well on 125mcgs Levo. But with all the changes that were made years ago by stupid new Drs then I was messed around a lot with dosing. I’m now on 150 t4 plus 15 t3

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

It looks like your levo requirements have changed over time so it would be hard to know what your optimal dose would be without trying it out and giving it a lot of time, new bloods and dose adjustment.

Why don't you have confidence in your current treatment?

130396 profile image
130396 in reply to Jaydee1507

Because my results don’t seem right. I’m very breathless. Constipated. Swollen ankles . Weight gain and a knitted anxious feeling in my tummy

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

Have you got your results optimal though on your current treatment? If not, then sit tight and get some dose increases sorted and those issues should resolve in time.

130396 profile image
130396 in reply to Jaydee1507

shall I post my results here . Before my dose increase and after???

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

Can do. We can always tag someone for an opinion.

130396 profile image
130396 in reply to Jaydee1507

ok these are my results.

The first ones are before my Gp increased my t4 . The second ones are after the dose increase :

24/06/22 125mcgs Levo plus 15mcgs T3 test 8.25am last dose 24hrs Tsh <0.03(0.35-4.94)Ft4 12.5(9-19)35%Ft3 3.7(2.6-5.7)35.48%

5/9/22 150 Levo plus 15mcgs T3 last dose 8.20 previous day TSH <0.03 (0.35-4.94)Ft4 14.1 (9-19) 51%Ft3 4.3(2.6-5.7) 54.94%

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

I've just read the respose you got from SlowDragon which said she needs both FT4 & FT3 to be at least 70% of the range. Is the latest result you give here the same as that or more recent?

There's also the issue of possible false low FT3 result with a 24hr gap beween last dose and blood test.

In my opinion you are undermedicated and no wonder you have swollen ankles and weight gain etc Raising your dose will fix those issues but will just take time. If you switched back to Levo not knowing which dose is best for you then you would have the identical issues probably.

130396 profile image
130396 in reply to Jaydee1507

Sorry I don’t quite understand what you mean about the 70% and is mine the latest result?

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

You posted some results 2 months ago. Are these more recent tests, if so when? Are they the same results that you posted 2 months ago?

Your FT3 is at 55% and FT4 at 51%. SlowDragon was saying her percentages need to be nearer 70% for both results for her to feel well, so yours are around 20% less than where they need to be. You need an increase.

130396 profile image
130396 in reply to Jaydee1507

yes these are the same results. As you know I just dose once a day in the morning as I don’t feel the T3 “runs out” . So would I still need an increase ?

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

Yes you need an increase for sure with the symptoms that you have. As both are around the same level and you were OK on Levo then probably raise your Levo but I'd prefer SlowDragon to check that.

130396 profile image
130396 in reply to Jaydee1507

thank you. Yes I did very well on Levo only although I’ve no idea what my free t’s were when I was on it as they only tested tsh. But I was 2 1/2 stone lighter and didn’t have any of these symptoms. I was very active and didn’t have this awful breathlessness

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

Breathlesness can be related to low ferritin. Have you had your vitamins checked lately, if so, what was your ferritin?

130396 profile image
130396 in reply to Jaydee1507

I’ve had everything tested. Ferritin is 112. Vit D is 135. B12 is top of range. Folate is 16

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

What was the range for that ferritin though? It can make a difference.

130396 profile image
130396 in reply to Jaydee1507

15-200 is the range

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

So your result is 52% of the range which is not bad, but adding in some iron rich fods wouldn't hurt at all. Could improve the breathlessness along with a thyroid dose increase.

130396 profile image
130396 in reply to Jaydee1507

I still had the breathlessness when it was 168 a few months ago.

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

...along with a thyroid dose increase.

130396 profile image
130396 in reply to Jaydee1507

But which one would I increase??? I don’t want to get RT3

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

From what I've read here, noone worries about RT3 anymore as it can have many different causes. You have previously been happy on Levo alone so it shouldn't be an issue.

If it were me, I would raise the Levo as you don't have conversion issues and your FT4 as well as FT3 need to be raised.

130396 profile image
130396 in reply to Jaydee1507

do you think slow dragon will think the same as you?

Jaydee1507 profile image
Jaydee1507Administrator in reply to 130396

I wouldn't like to presume to know her thoughts but when you last posted those results she said to retest in 6-8 weeks.

130396 profile image
130396 in reply to Jaydee1507

Hopefully she’ll see where you’ve managed to tag her and see what she says

SlowDragon profile image
SlowDragonAdministrator in reply to 130396

Last dose levothyroxine should be 24 hours before test

But day before test ALWAYS split T3 into two or three smaller doses spread through the day and last dose approx 8-12 hours before test

If last dose T3 was 24 hours before test that’s a false low Ft3 result

Do you normally take your T3 as single dose

Many people find it better to take as 3 x 5mcg doses

liz1952 profile image
liz1952

Unfortunately no. T3 changed my life, I was almost the old me, emotionally and physically. I was then taken off it - cost of course. I now feel pretty awful again...round face, puffy hands, tired (thyroid tired - you'll all know what I mean), weight back on.....so bad how they have so much control over us...

SlowDragon profile image
SlowDragonAdministrator

Do you know if your hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s usually diagnosed by high thyroid antibodies

Are you on strictly gluten free diet or dairy free diet

What’s your most recent vitamin D result

Range on folate result?

Exactly what vitamin supplements are you currently taking

130396 profile image
130396 in reply to SlowDragon

I do not have autoimmune hypothyroid. I am not gluten free. Vit D135. Range folate 3.5-20. I take magnesium Vit D .

I’ve been hypo for over 38 years and did extremely well on levothyroxine only for well over 28 years

SlowDragon profile image
SlowDragonAdministrator in reply to 130396

yes, but things change over time

Extremely common for conversion of Ft4 to Ft3 to get significantly worse after menopause

Other medications interactions with levothyroxine too

Lower stomach acid as we get older

Have you had ultrasound scan of thyroid…..is there any gland left ….probably not after all these years

Swollen ankles…..try dairy free diet for 6 months ……you might be astonished

130396 profile image
130396 in reply to SlowDragon

thank you SD.

So basically everything seems ok with my results ?

SlowDragon profile image
SlowDragonAdministrator in reply to 130396

can’t tell…because you left too long between last dose T3 and test

Do you normally split your T3 as 5mcg doses spread through the day

Even if you normally take a single dose….always split T3 dose into 3 smaller doses at roughly equal 8 hour intervals day before test….last dose T3 approx 8-12 hours before test

Approx how much do you weigh in kilo

You might find splitting levothyroxine as two doses works better as well…half dose waking and half dose at bedtime

However only make one change at a time and then wait 6-8 weeks….otherwise you can’t tell what’s working and what isn’t

130396 profile image
130396 in reply to SlowDragon

I used to split doses but found that taking it once a day was the best for me.

I was actually wanting to know about going back to t4 only as to me T3 is not the magic pill that most people think it is.

Here’s some results of when I was splitting dose BUT I was taking 25mcgs t3 then NOT 15mcgs like now

TSH 0.03(0.35-4.94)Ft4 9.9(9.0-19.0)Ft3 4.6(2.6-5.7)

So not hardly any difference

130396 profile image
130396 in reply to SlowDragon

tried taking Levo at bedtime and had very restless sleep and vivid dreams.

I now weigh 75kg so more than I used to

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