I’ve just had a letter through from the endo I’ve been seeing to confirm the test showed a heterogeneous variant genotype and he has written to my GP to say I would benefit from dual thyroxine and liothyronine replacement so I assume I will get this paid for on the NHS...? I am due to have a call with the endo in 3 weeks to discuss this with him
I’m already actually taking t3 as I was prescribed it a while ago by a private GP but never took it at the time
So I’m 3 weeks in on t3 and I feel definitely better than I did but still feel I could increase it more if I’m honest, I definitely don’t feel over medicated on it
I was taking 175 levo
I’m now taking 100 levo and 20 t3
I feel the t3 could go up slightly and may drop the t4 down
How long does it take to feel the full benefit and for the reduction of levo?
I had posted previously about NDT but i want to give this a try first to see if this works especially if they are prepared to fund it
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Fox78
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So I’m 3 weeks in on t3 and I feel definitely better than I did but still feel I could increase it more if I’m honest, I definitely don’t feel over medicated on it
I was taking 175 levo
I’m now taking 100 levo and 20 t3
Woah! Please slow down.
You were previously advised that you need all nutrient levels to be optimal before adding T3. That means:
*B12 at the top of the range
*Vit D 100-150nmol/L
*Folate at least half way through range
*Ferritin half way through range
You previously said that your results on 175mcg Levo were:
Tsh 0.02 (0.27-4.2)
T4 24.9 (9-26)
T3 4.7 (2.8-7.1)
You were right to reduce Levo but 25mcg would have been enough, that would bring your FT4 down. Then you'd wait a week or two for some of the T4 to be flushed out of your body and start adding T3.
We start with 1/4 of a tablet of T3, so 5mcg or 6.25mcg depending on which T3 we have. We take that for a couple of weeks then if everything is OK (no adverse reaction) we increase to 2 x 5mcg daily then see how we feel. We might then stay on that dose for 6 weeks and retest to see how our levels have changed.
You have reduced Levo by too much and you have gone far too quickly with adding T3.
Taking T3 will lower FT4 so please don't reduce your Levo any more and don't add any more T3 until you've had further testing. Take this slowly and gradually, that's the only way to do it when adding T3 and tweaking doses of both hormones. We never change dose of both at the same time, this is because we wont know which hormone has made whatever difference we feel or find in our results.
How long does it take to feel the full benefit and for the reduction of levo?
I started adding T3 to my Levo in October 2015, tweaked doses on and off and became fairly stable mid-2019 and seemed to find my ideal dose October 2019. I also had to work on nutrient levels and adrenals which, if I hadn't, I may have found my idea dose sooner.
I agree I am impatient!!! However I am fed up of not feeling well and since the beginning of the year I have felt even worse I feel the more t4 I take the worse I am and to be fair in my defence when I spoke to a private GP last year she recommended I reduce the levo down by 50 and add 20 t3 so it’s not something I’ve completely done off my own self medicating back!!!
I am also taking vitamins to support my nutrients but I will ask for these to be tested again
Obviously some people just take t3 only so how does this work if they want to come off t4 completely?
Fox you are lucky. You have made big changes too quickly and seem to have got away with it. Don't compound things by making other changes too quickly. We usually stay on a dose 8 weeks before testing and altering.
Endos tell patients the combo dose they recommend but they rarely tell them how to get onto it. Normally it would be done gradually taking at least 8 weeks to reduce levo by 50mcg and adding 20mcg lio.
I agree I am impatient!!! However I am fed up of not feeling well and since the beginning of the year I have felt even worse I feel the more t4 I take the worse I am
I understand that, as I'm sure many members here do, if not most. But trust me, rushing it is not the way to go. You have to take it step by step, change one thing a bit, see what happens, go onto the next change, see what happens, then the next, etc. If you don't give it time you can make things worse and be back at square one and have to start all over again.
and to be fair in my defence when I spoke to a private GP last year she recommended I reduce the levo down by 50 and add 20 t3 so it’s not something I’ve completely done off my own self medicating back!!!
Yes, well unfortunately even private doctors have little to no understanding where combination therapy is concerned. There are no good, old fashioned doctors any more like Dr P and Dr S. All we have are conventionally trained doctors whose knowledge of treating hypothyroidism is minimal. Unless they are hypothyroid themselves they can't understand how a hypothyroid patient feels. They play with T3 but really don't know how to medicate with it, if they did your private doctor would never, ever, have suggested reducing your Levo down to 50 (from 175mcg?) and adding a whole 20mcg T3 in one fell swoop.
Obviously some people just take t3 only so how does this work if they want to come off t4 completely?
As always, this is an individual thing.
Some people are fine on just T4 (Levo).
Some people people need a small amount of T3 added to T4.
Some people need a larger amount of T3 added to T4.
Some people do well with the ratio of T4:T3 in NDT and do well on that.
Some people need a different ratio than NDT offers so need Levo plus T3.
Some people do well with FT4 low in range when on combination therapy.
Some people need FT4 higher in range when on combination therapy.
Some people do well on just T3 only and they only find that out by gradually reducing T4 and finding they do better without it.
There is no one size fits all, we have to see what suits us as an individual.
To explain this paper briefly, the DIO2 gene activates triiodothyronine (T3) and the researchers found that a tiny change in this gene could mean that although the body gets enough T3, the brain doesn’t.
Very interesting that your endocrinologist recommended getting Dio2 gene test.
DIO2 gene does NOT mean we can’t use levothyroxine. But it does mean we frequently need a SMALL DOSE of T3 alongside levothyroxine
As SeasideSusie explained it’s important to only start slowly
Stay on this for minimum of 6-8 weeks and get testing
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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 third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Yes he seems very switched on he suggested it as he felt looking at my t3 results I wasn’t converting Over the past year despite him putting my t4 up
I had to pay for the year myself but I’m hoping as he has now written to my gp explaining he recommends dual treatment and the fact he is speaking to me in three weeks they will prescribe on the nhs
to qualify for NHS prescription for T3 the protocol is that endocrinologist must be NHS, initial 3-6 month trial is prescribed via endocrinologist and hospital pharmacy. Assuming trial goes ok endo writes to GP to formally request they take over ongoing cost and monitoring. With annual review back with endo
Post code lottery as some CCG areas will fight it
You may need endo to do individual funding request on your behalf
Ok that’s helpful to know I will ask the question how it works after he has discharged me back to the GP
I’m not prepared to be discharged until I’m confident I feel better and I’m also under the same department but different consultant for PCOS too which I strongly believe the two are related so that needs to be sorted also before I think I can properly begin to feel better
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12
These all need to be optimal....especially on T3
What vitamin supplements are you currently taking and what were most recent vitamin results and ranges
Are you on strictly gluten free diet?
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I am due to have them all tested again so will see if these have gone up since taking the supplements
I have been tested for ceoliac twice but was negative but yes I have been following a gluten free diet
I actually have Ords thyroiditis I think you mentioned this previously As to the name., endo didn’t give it a name but said it wasn’t hashimotos as I don’t have any swelling it was scanned, the report said it was on the small side of normal
That's Interesting SlowDragon, My (presumed!) diagnosis of Ord's also definitely showed an early hyperthyroid phase lasting several months. I didn't have any Bloods done at the time though so no idea of numbers, which is a shame.
Actually at the time every body thought i'd got 'a touch of postpartum psychosis' and wasn't eating enough dinner! but i got so thin it was ridiculous, and i was definitely eating 2 pudding's and 3 Mars bars even if i wasn't eating enough dinner.
It's no wonder it's rare (ly diagnosed!) .
My medical notes from this time incorrectly show 'postnatal depression' , and just to confuse matters further, it has now been dated wrongly when transcribed from paper to digital records.........to show me having post natal depression 9 months BEFORE giving birth.....
I've never been considered interesting enough to have a scan , so i have no idea what it looked like ,( or what it's doing nowadays)
Yes I wasn’t diagnosed until a further four years later
Became extremely thin after first child was born. Looked anorexic. I just thought it was because I was breastfeeding and running around after a toddler
Gained an enormous amount of weight when pregnant with second child. Never lost it after
Finally diagnosed 4 years later, by then I was wearing at least 4-6 layers of clothing at all times, heavy duvet and electric blanket even in summer heatwave etc
I was lucky my GP tested antibodies as TSH was only 8. Both TPO and TG sky high .....highest results endocrinologist had ever seen
Then the fun began.....was left too long on ludicrously small dose levothyroxine ....more on my profile
mine was only 5.7 then 6.8, so got patronised for a while till TPOab was done ............
it came back as 2499[0.50] then>3000.
Got Levo the next day. Fortunately i got a decent dose and put it up to 150 over next 6 mths. You have my sympathy for not even getting enough when you finally were offered it.
It also took 5 yrs for me to slowly get really hypo after the 'anorexic' phase.
I wouldn't be surprised if this post now contains more 'research data ' on Ord's than exist's anywhere else in the known Endocrinology Universe.
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