I finally got an Endo appt in Sept who agreed to trial T4/T3. I’ve been on NDT years ago but recently just on T4.
I am now on T4/T3 combo of 50 Thyroxin and 20 T3. I take thyroxin and 10 of t3 at 7 am and then the extra 10 of T3 around 1 pm. I have the gene that says unlikely to convert t4 to T3. I’ve been on this combo since late Sept, I was previously on 75/100 thyroxin on alternate days. My latest blood tests are
TSH 0.08 (0.3 to 4.2)
T3 3.9 (3.1 to 6.😎
T4 12.4 (12.4 to 22.0)
I am waiting for a follow up Endo appt to discuss these. Meanwhile I feel under medicated, slow pulse, low energy and increasing weight.
I feel that the T3 is a very low dose. Should I be requesting a higher dose so that T3 is on the top quarter of the range? Does T4 level matter if T3 is optimal?
Any guidance gratefully received. Is it possible to ask my GP to request a raise as it’s taking forever to get the follow up appointment and I am not feeling great?
Vitamin and ferritin levels are all optimal
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judburke
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Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.
Last 5mcg T3 dose roughly 8-12 hours before test?
Frequently endocrinologist reduces levothyroxine too much....and your results suggest your levothyroxine dose needs increasing by 25mcg
Bloods should be retested 6-) weeks after each dose increase
Only change levothyroxine or T3. Never both. At moment, Ft4 is too low.
You should see Ft3 rise as well as Ft4 with increase in levothyroxine
Many people on levothyroxine plus T3 need BOTH Ft4 and Ft3 at least 60% through range
You may be better splitting 2nd 10mcg dose into 2 x 5mcg and taking 5mcg at 3pm and 5mcg at 11pm
That spreads T3 dose at 3 doses at equal 8 hour gap
When were vitamin D, folate, ferritin and B12 last tested
The test was done first thing in the morning no food/drink and no Thyroxin. Last t3 probably mid aft the day before.
I am not sure she will raise Thyroxin as she’s focussed on TSH when I was on NDT .
I tried splitting second T3 but then I run out of what little energy I have in the afternoon. From what I’ve been reading she’s started me on very low doses
If she is focused on TSH then she will never get you optimal and feeling well no matter what you take. Id change endocrinologists. Look at Thyroid Uks thyroid friendly doctors. Ask admin for the list.
That’s my worry. I thought I had done well finding an NHS Endo that was happy to trial the combo. I am not sure if I am allowed to request a different NHS Endo unless I go private. It’s so frustrating that there’s no sign of the follow up appt.
She may be persuaded to increase by the clear signs that you are low in range - right at the bottom for free T4 and little more than 1/4 through the free T3 range. As SlowDragon so rightly says, most of us need both to be at least 2/3 through range to feel properly well x
Fingers crossed! I will certainly be requesting a rise in T3 and it sounds like Thyroxin needs to go up too. I know I can feel better once I get the dose right
That was her discussion with me a couple of years ago when I was on NDT she dropped the dose because of low TSH even though I didn’t feel optimal. So I am expecting a similar discussion now even though T4 and T3 readings are very low
Thanks I wasn’t sure if it was the T4 that changed the TSH levels. I don’t have access/copy to the last vitamin levels due to a problem with the labs/Endo but all my levels are consistently optimal. I am 100% strictly gluten free as I am Coeliac for 5 years. Drs are happy that the Coeliac is controlled - no CD antibodies on annual tests.
Sadly that’s part of the test results that I can’t get hold of which is frustrating. My GP doesn’t have them and no one at the hospital will give me them.
Well done, by listening to your body you have worked out that you are still not properly medicated!
Initially I suggest you need to trial more Levo.....usual increase is 25mcg.
Test again after 6/8 weeks and see how numbers change....only then can you really judge your next step. It may very well be that you need more T3 but in your shoes I would want to try more levo first. That will raise your FT4 and help show how poor/ good your conversion is. High FT4 with low FT3 indicates poor conversion....and a posible need for more T3
Only ever change one hormone dose at a time, never both together ....that confuses the body
I'm surprised your TSH is suppressed on that dose.
I tested Dio2/homozygous positive and also have a type of thyroid hormone resistance.
I now need a large dose of T3- only taken in a single dose at bedtime. A split dose didn't work for me. All this after much research and trial and error.....and amazing support from experienced members here. I would be inclined to take T3 in a single dose, that helps to flood the receptors and cells with hormone...can be more effective than a trickle!
I sympathise with your plight, my GPs made a poor job of treating me, I became very unwell but thankfully I found TUK and after decades of poor health now know both why, and how to medicate.
Frustrating as it is you need to be very patient, trying to rush ahead is detrimental....been there! We are all different with different needs and unfortunately trial and error is often the only way forward.
Medic's knowledge of thyroid disease is, sadly, frequently lacking....that's why well over 100,000 patients have arrived here desperately seeking help.
There is no quick cure ( think paracetamol/ headache) but there is a cure if you stick with it and don't be persuaded by a GP that ( for example) your low TSH is a bar to that.
I suggest therefore, that you start by asking for an increased levo dose....suggest a trial first, that often goes down better than just asking straight out. Not such a dent to their ego!
I'm not a medic just another member who has had to find my own long, bumpy journey to recovery.
Thanks DD! I too started my health journey on here about 6 years ago. Advice from here helped discover undiagnosed Coeliac and an understanding of optimal test results. The Endo didn’t say how to take the T3 she just prescribed 20 and I get it on 10s. Hopefully she’ll be prepared to trial different doses. It’s just a shame that it’s now 4 months since I’ve seen her. I might have to consider going private as it’s taking far too long. It took 10 months to get the first nhs appt with her. I am tired of feeling “middle aged” when I know I could feel better.
After 6 years and still struggling ....not good when there is so much valuable direction on offer here. To be frank I doubt you will find better, experienced guidance anywhere than from patients here who have travelled the long, hard, dark bumpy road to recovery.
It took me nearly 50 years to understand why I was very slowly grinding to a halt....my body was slowly shutting down. After several weeks here I slowly began to realise that I had a serious problem and if I took control I had a chance to improve things. Not conceit....just desperation. I was no longer willing to be treated by people who made me feel worse. You may find my profile helpful.
Medics were useless, the one and only endo I saw was clueless (diabetes specialist)
My current GP is not happy that I medicate with a large dose of T3- only ( I have now managed to reduce my dose to 100mcg) but she has finally seen the results and accepts patient autonomy. She no longer thinks I'm going to kill myself!!
As I said above I suspect you will need more T3 or as a last resort T3-only.
You will be very hard pushed to find a medic that is willing to prescribe it and certainly not in the dose some of us take. You had tried T4/T3 and NDT with little apparent success.
As a starting point you may find this article interesting, don't be put off by the reference to FM and CFS ....like many of us I was given both diagnoses over the years!!
You could spend the rest of your life looking for a needle in a haystack, ie the medic to cure you. The reason being that modern medics are taught to treat thyroid disease by numbers and tick boxes, when instead they should be using good old fashioned clinical evaluation. Do your medics ever look you in the eye and ask, "How do you feel?"
Dear DD I am so happy you’ve found good health! I feel your pain getting there - I spent many years telling my Dr that something was wrong. She wanted to discuss depression when in fact it was long undiagnosed Coeliac. Thanks to this wonderful site I now take control and push for my own health. The people on here are life savers. I did find one Dr years ago that dosed per symptoms but sadly she stopped doing private consults . I won’t be giving up!
I remember when first diagnosed how very, very unwell I felt. Yet a woman I saw in the A&E said to me 'once you're on a proper dose of levothyroxine you'll be fine'. Her response gave me confidence but the more my dose was increased the worse I felt and was awake most of the night due to severe palpitations. I don't know how many times I went to the A&E dept. It was a nightmare - and husband had to get a glass of ice-cold water for me to sip and wet towel from freezer to wrap around neck as that was the only way I could reduce palps.
Once I stopped T4 so did the unpleasant symptoms. I also tried NDTs that suited many people but the NHS have withdrawn this despite it being safely tolerated from 1892 (without the need for blood tests - only symptoms) up until Big Pharma wanted to increase their profits and invented levothyroxine (T4 alone).
On of TUK's Advisers (now deceased) stated that doctors in USA were paid to prescribe levo instead of NDTs.
I was fortunate that T3 worked for me, although they then stopped prescribing this as well.
I think, that the majority of 'experts' in the UK certainly are unaware of how best to treat patients, as we are all different, and can respond well to options. Unfortunately they've also withdrawn options too - well seen they're not suffering with a dysfunctional thyroid gland as they only seem to work on 'theories'
Our old-fashioned doctors were better trained in diagnosing through patients' clinical symptoms and also many prescribed NDTs (natural dessicated thyroid hormones) if patient wasn't improving on levo.
Unfortunately, our old-fashioned doctors were then pursued relentlessly for doing as they were trained as students. Our last two of these doctors, Dr Skinner and Dr Peatfield have died. Re Dr Skinner - since his death his staff have collated all of their scientific evidence and were hoping to publish. They needed a certain amount of monies to do so and I don't know how far they've got.
shaws I tried NDT for a while as we were living in USA and I got on well with it. I was trying to get all my care under NHS and of course they won’t prescribe NDT any more sadly. I’ll keep trying as I know I can feel better than this!
When I told her about the gene test she looked confused at me. I did it privately. . I’ll raise it again with her. Am just trying to chase up my next appointment with her
I really feel for you. Its good that you already know you did well on ndt.
To get it on the nhs your endo will have to recommend the ndt. The endocrinologist is also required by the NHS to show that they have established the other option of Levothyroxine are not suitbale. Their next go to is adding the T3 in and the last option is NDT. Your endocrinologiist even if they are ndt friendly has to demonstrate that the other options do not work and this maybe the reason you are on this route. However with your endocrinologists focus on your TSH level it seems unlikely to me that they are indeed a specialist in hypothyroidism as its already been clinically proven that treating by the TSH leads to under prescribing.
You do have the right to a second opinion on the NHS. I have done this once before with another specialsim. Either your current specialist can refer you or you can ask your GP to refer you for a second opinion. Pick carefully as you cant have a third opinion! In my case my GP referred me to the second specialist. The first specialist was outraged by this as in his opinion the GP had broken protocol! Probably a bit of bluff re hurt ego and it did make my first appointment with the second specialist a little tense (small world they all know each other!) Nevertheless it was the second specialist who treated me & I am very happy with the outcome.
Once you have a NHS Endocrinologists backing its down to whether your GP will under right it on a 'named patient' basis. This is an indivdial thing and your GP can say no to doing this even if a NHS Endocrinologist has recommended it. In all honestly you are on a long road to achieve this. I do have my ndt on the NHS on a named patient basis. I had to move GP Practise to achieve this. It took me three years to achieve this and in the meantime I self funded the ndt as I was so ill on the alternative. My GP during that time was fully aware that I was on ndt throughout and remarked that it definately was the best medication for me even though the practise wouldnt prescribe on the nhs!!! I wish you luck but be prepared for the long haul and be prepared to self fund whilst you battle on as you shouldnt really have to pay for essential treatment.
Waveylines thank you so much for all this information it’s very helpful. I do feel better on the combo than just on thyroxin- but I know I can feel a bit better than this. Hopefully she will do some amending to the dose but if not I’ll consider going private again. I am getting frustrated as to how long it’s taking. I waited 10 months for the Endo appt and now I’ve been on this low dose for nearly 5 months and no sign of the follow up appt even though bloods were done late Nov.
Oh poor you. I was just like you -felt better on the combo but was best on ndt. NDT makes me feel like I did pre hypothyroidism. The combo no matter how I tried it I used to get spikes and dips during the day where I either felt a little over cooked or the other way. It didnt feel even. Dont give up though.......thats what the system wants you to do!!
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