About to start T4/T3 combo. 3 questions - jus... - Thyroid UK

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About to start T4/T3 combo. 3 questions - just needing a bit of reassurance please.

MacG profile image
MacG
22 Replies

GP agreed to T4/T3 combo yesterday (YAHOO!!). Currently on 100mcg levo daily.

GP said to reduce levo to 50mcg and add 10mcg T3. According to equivalence of levothyroxine and liothyronine I think that sounds right. QUES 1: DOES THAT SEEM RIGHT?

I know I need to reduce my T4 for a few days before I start the T3. Planning to start the T3 next week-end when I have a bit of quiet time.

QUES 2: DO I CUT STRAIGHT TO 50MCG LEVO FROM TOMORROW IN PREPARATION?

QUES 3: I know people take T3 at various times during the day. When I start the T4/T3 combo thought I would take them together first thing in the morning. QUES 3: DOES THAT SOUND RIGHT?

For reference: More long term GP has indicated an increase in the T3 (up to one and a half 20mcg tablets 3 times daily). I’ll deal with that once I have got this first step started.

My GP was brilliant yesterday. Previously T3 didn't seem to be an option, but she really listened when I told her I had just got the results back from the DIO2 genetic test showing that I have inherited the faulty gene from both parents, so ability to convert at cellular level significantly impaired. I think this was news to her. She asked me to leave the photocopies of the research articles about this that I had taken in so that she could have a look at them. (Hopefully she will feedback to other members of the practice.)

Maybe I should have got these details sorted in the appointment, but 1) I didn't expect that my GP would offer the T3. Had expected an endo referral. 2) Feeling very dull-headed at the moment and struggle to process information in conversations. Need to come away and think things through. 3) Have a stinking cold - nose throbbing badly throughout appointment!

Some re-assurance would be much appreciated. Want to get off on the right foot with this next step.

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Clutter profile image
Clutter

MacG, T3 is 3 times stronger than T4, not the 5 times your GP is suggesting so T4 should be reduced by 25mcg when 10mcg T3 is added.

eje-online.org/content/161/...

There's no need to taper off T4 for a few days. Just reduce dose to 75mcg or 50mcg, whichever you decide, and add the T3. You could split the 10mcg into 2 doses 4/8 hours apart but one x 10mcg dose is fine for most people.

MacG profile image
MacG in reply toClutter

Many thanks for responding Clutter. I hoped you would see my post! That's given me confidence!

gabkad profile image
gabkad in reply toClutter

Clutter, doesn't it depend on her fT4 and fT3 level at her current dose? If they are not great, she can just add the T3 to the current dose of 100 mcg T4. If fT4 is in the 13 to 17 range on 100 mcg T4 but the fT3 is low, then just add T3.

Definitely not reduce T4 to 50 mcg. That will result in 'failed T3 therapy'. I don't know why doctors keep insisting on reducing T4 by 50 mcg when adding 10 mcg T3. It just doesn't make any sense. The Western Australia hypothyroid association states that T3 is 2.5 not even 3 much less 5..... I tend to think, in my own sorry body that it's closer to 2.5. Even my TSH says so. :)

Even if there is the genetic information, clearly she would not have survived childhood if the problem were truly severe. So T4 is needed as well regardless.

My endo reduced the T4 from 125 to 88 and added 10 mcg T3 and I went hypo. Which is why I'm now taking 100 mcg T4 and 12.5 mcg T3 and results are very good.

Clutter profile image
Clutter in reply togabkad

Gabkad, can only go on info provided but 50mcg T4 is not equivalent to 10mcg T3 which is why I disputed dropping 50mcg T4 for 10mcg T3. As you say, it sets up T3 to fail.

MacG profile image
MacG in reply toClutter

Hi Clutter and gabkad,

Reading your discussion with interest. My last TFTs (beg. Sept) indicated that 100mcg levo was SEEMINGLY adequate. Sorry, I am going to have to be vague here. I can normally access my results online (lucky me!) and then I transfer them into a table, but sods law the website is down…..and when I checked I didn’t fill in the table last time (cross with myself!)

I remember clearly, however, that my TSH was very suppressed: something like 0.01 (0.3-5). It was below range. FT4 was 19.something (11-23) best its ever been, and FT3 was 4.2 (3.9-6.8). I remember this clearly because it was the first time after 18 months on meds that it had actually crept into range.

I say 100mcg was SEEMINGLY adequate because with the faulty DIO2 gene the cellular conversion problem does not show up in serum results.

From Panicker et al.research paper:

"Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels".

Am I right, is this what it is saying? (So dull-headed at the moment.) If so, that has REAL implications for TFTs for those with the DIO2 issue.

Clutter profile image
Clutter in reply toMacG

That's the way I understand impaired DIO2 affects T4/T3 conversion, MacG.

There is also a study linking DIO2 with low bone mineral density.

healthunlocked.com/thyroidu...

MacG profile image
MacG in reply toClutter

VERY INTERESTING! I was diagnosed with osteoporosis about a month before the hypo diagnosis. In fact it was when I insisted on a bone density scan following several fractures and the positive result that the wheels started turning, and I finally started getting answers. My GP at that time (now ex-GP) hadn't been taking me at all seriously.

I have always wondered what caused the osteoporosis. Prior to getting poorly I led an active lifetstyle and had a fantastic diet. I always read that osteoporosis is also a risk factor in post menopausal women. Not me!!

Interestingly my Dad (also fit and active...ran marathons etc..) also has osteoporosis. The genetic link!!

I'll check this link out. Many thanks for drawing my attention to it.

Incidentally, just went to pick up my T3 from the pharmacy. They apologised and said that it wasn't there. (I am signed up to their electronic prescription service.) No problem I said, I'll call back but can I ask whether that was because you have run out or you have had to order it in specially. They said it was the latter, and seemed quite interested that I had been prescribed it. In fact the pharmacist came out and as there was no one in the queue we had a chat about the DIO2 test. He mentioned the fact that T3 is expensive. I was thinking, are there really so few people who get prescribed it round here. This is the pharmacy at a Sainsbury's superstore in a busy urban environment.

Clutter profile image
Clutter in reply toMacG

MacG, My recent Dexa shows mild osteopenia. I'm inclined to think that lifetime low weight, tall thin frame, menopause <42 and severe vitD deficiency picked up last year may be contributing factors. TSH has been suppressed for 2 years but I doubt this is long enough to be a factor.

shaws profile image
shawsAdministrator

That's great news and it's very good your GP has taken an interest in your research re the D102 genetic test.

Clutter's advice is very good.

I wish you well and the addition of T3 made such a difference to me too.

MacG profile image
MacG in reply toshaws

Thanks so much for your good wishes Shaws. I couldn't have reached this point without the support of all you brilliant people at Thyroid UK.

Heloise profile image
Heloise

Reducing your T4 BEFORE starting T3 would seem to be leaving you with reduced hormone before the T3 has time to be affective.

MacG profile image
MacG in reply toHeloise

Many thanks Heloise,

Reading loudly and clearly from all of your posts not to reduce BEFOREHAND. I appreciate that you took the time to point this out as well. (....I wonder where I read that?)

I was the same as you on 100mcgs T4 until my Endo prescribed 10mcgs T3 last March.

He told me to reduce my T4 to 75 to accommodate it.This week I thought I would increase my T4 back up to 100mcgs + the T3 and have to say I don 't feel good so will go down again.

I will be interested to see how you get on with what you decide and wish you well.

MacG profile image
MacG in reply to

Many thanks Marfit for getting in touch. Interesting to see how others are getting on who have taken the next step. The fact that you increased back up to 100mcg suggests that you thought there was still room for further improvement when you were on the 75mcg +T3. Would be interested to know what in particular prompted you to do this.

Also, I hope you don't mind me asking, how soon did you notice any improvement after starting the T3? And what did you notice?

in reply toMacG

Hi there,

I noticed a difference pretty quickly when I started T3.It was as though it was reaching the cells all over the body as it's supposed to do.My body warmed up ,I was much happier in my self,more motivated to do things.the only thing it didn't solve was my joint and muscle pain.

Was still concerned that it was the fillers as it is Mercury Pharma Liothyronine and I had previously come off their Levothyroxine because the more I took the more my muscles ached and the fillers are not much different.( at the moment I take Actavis)

However,I am still trying to find the right solution for me.I wasn't totally happy on 75 Levo/ 10mcgs T3 and did some maths working on the 80%/ 20% theory that is said to be what the normal thyroid produces,so pushed it up to 100 Levo,but my muscles have ached more again so I think that's a No No! My body seems to complain very quickly to bad decisions!

When my GP was new to our surgery 13 yrs ago he tested my blood pressure which went sky high so he put me on blood pressure tablets. Within a month I was telling him I couldn't take them....they made my body ache. Then I purchased my own monitor and when I go to see him I take in my latest readings which are fine!! I think I must have reacted to him when he first arrived (White coat syndrome) He was the same age as my son so took a bit of getting used to !..........back to the T3 I shall persevere a bit longer as I know that some of my joint pain is probably not thyroid based and have a referral later this month to a Physio dept.at our local community hospital.I intend to ask questions about the possible relationship between joint pain and being under medicated over a long time for hypothyroidism.

I have 2 more alternatives....increasing my T3 but don't anticipate getting more on NHS so will have to buy myself or to go to NDT which I have tried and will have to buy too.

Sorry if I'm not much help.....it really seems to be trial and error for our own individual cases but hopefully the T3 is going to help you.

MacG profile image
MacG in reply to

Thanks ever so much for getting back to me Marfit. It is really useful to see what does/does not work for people. With regard to your last para about your 2 more alternatives, have you read "Tired Thyroid" by Barbara Lougheed (only recently published). She does have a website as well - tiredthyroid.com. She has tried a whole range of different combinations/dosages and very carefully documents her symptoms on each. She has combined NDT and T4 with a degree of success.

in reply toMacG

Thanks for that information MacG I shall look at her website to find more out about her.......I wasn't going to buy any more thyroid books as I have quite a few.....however,if this one might be useful I may do.

I record my meds I've taken each day and also how I'm feeling, in a notebook, as I find it useful to look back at when I'm deciding whether to make changes.It really helps me a lot.Sometimes we need something to personally refer to because of the long journey we seem to be on to find answers for our ourselves...... Good luck with your own journey.

MacG profile image
MacG in reply to

Thank you. You too.x

Hi, I just joined this community because I was looking for advice about the problems with changing brand of levothxroxine. I was browsing round and found this thread and wanted to offer my experience of combination therapy. I have had auto immune Hashimoto's for 27 years and was never stable, dose was up and down like a yoyo for years until I asked to be referred to an endocrinologist who recognised the T4/T3 thing and gave me combination therapy. Before long my levels were stabilising and remained stable until the menopause which threw things askew for a while but I have a brilliant endo and supportive GP and think that I am one of the lucky ones.

I wish you all the best with youe T4/T3 therapy and hope you soon feel better.

MacG profile image
MacG in reply to

Hi Jambalaya, thanks so much for posting. I too have Hashi's and it is so re-assuring to hear of cases where things have gone well. Many thanks for your good wishes.

Hi jambalaya.......that is great that you have a good support team behind you.It makes all the difference and I think that the menopause is a good time to have them helping you in recognition of thyroid problems as so many will pass it all off as menopause and nothing else.My Endo too thought the FT3 test was important,so like you I've been fortunate to have T3 prescribed.

I have to admit that I felt at my best ever back in the Summer when I substituted my Levo with Armour so was taking 1grain Armour / 10 mcgs T3 but wasn't confident of what I was doing because of the Armour having T3 too and I wasn't being monitored on that. My next set of blood tests seemed a bit funny but my Endo didn't say anything.

He did say that if I did go on to Armour he would monitor me though he couldn't prescribe it.So as you can see I'm still not settled yet as I conveyed to MacG.

It was good to hear your story too....I think menopause was when the Thyroid symptoms started for me. I hope you stay well x

in reply to

Thank you for your kind comments. Menopause was when I went unstable but my endo did warn me that could happen. Then I was fine until 3 month ago when I could no longer get my Eltroxin and now have to adjust to Mercury Pharma Levothyroxine.

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