I have low thyroid where I am not converting enough T4 Levothyroxine into T3 and am waiting to go to my local hospital to see an Endo but am not feeling confident regarding the willingness to even acknowledge T4 to T3 conversion by NHS Endos and of course what medication they will give me and what knowledge they will have. I have heard that T4 together with T3 is the best option or NDT which I am sure they wont give me. Does anyone know if I will get any help at all with my issues under NHS Endo? I also have Sjogrens Syndrome and another Autoimmune disease but they dont know what it is. I have 1:640 titre ANA autoimmune antibodies which is how they know I have another autoimmune disease but like I say they have no idea what it is and wont investigate as they say i dont have symptoms so not to worry etc.,
Am really feeling it on my conversion rate from T4 to T3 being low. Am fed up of feeling tired and all the many many many symptoms of my whole body not getting the T3 that it needs... puffy face, constipation worse, cant concentrate, feel like a 90 year old some days. What to do... do I go private or stay with NHS? I dont want to feel like this any more and thought I would be ok on just Levo but like my sister when she was alive... it looks like my conversion rate just isnt good enough and is getting worse.
Many thanks
I also get breathless due to low ferritin etc.
Here are some blood results I have managed to have done recently:
TPO ANTIBODY
THYROID PEROXIDASE ANTIBODY 3.1 iu/mL [0.0 - 9.0]
Serum ferritin level 17 ng/mL [11.0 - 306.8]
TRANSFERRIN SATURATION 35 %
<20% suggestive of Iron Deficiency
>50% suggestive of Iron Overload
TRANSFERRIN
Serum iron level 18.2 umol/L [10.7 - 32.2]
TRANSFERRIN 2.15 g/L [2.0 - 3.6]
Serum ferritin level g/mL [117 n1.0 - 3060.8]
Feb 2021
Serum TSH level
Serum TSH level 3.66 miu/L [0.34 - 5.6]
Thyroid function test For pregnancy related reference ranges please see
I'm shocked your GP thinks that below-range free T3 results are ok!
As to your questions:
* it's VERY unlikely that the endo will prescribe NDT but there is a chance that s/he will prescribe some lio along with your levo - mine does, but I accept I'm lucky and not all endos will. If, when it comes to it, yours won't, it would be worth getting the list of T3-friendly endos from DIonne at Thyroid UK - tukadmin@thyroiduk.org - and seeing if there's anyone convenient for you there
* Will it work? Probably. Hopefully, but not necessarily. I've found it brilliant, but it doesn't suit everyone. If you DO get it prescribed, please introduce it "low and slow", with 1/4 tablet only for the first couple of weeks, increasing to 2 x 1/4 tablet doses a day for the next couple of weeks etc until you're on a whole tablet, split into 1, 2 or 3 doses a day. If you go in too quickly, it is less likely to work - but a startling number of endos seem to try and set us up to fail
* Will they deal with other auto-immune conditions - hope so - but bear in mind the vast majority of endos are really diabetes specialists and don't know (or seem to know) much outside this ...
Finally, you might be encouraged to reduce your levo if they give you lio too. Don't do this at the same time as starting lio - better to do one thing at a time - and don't reduce it much, on the basis of these blood results - I wouldn't want to reduce by more than 25 mcg a day myself. Good luck x
Hi Fuchia-pink and thank you for your reply. Do you know if there is an equivalent T3 replacement in terms of how it compares to levo? I know I sound mad for asking but if I could be OK on 100 or 125 levo but am not but am still converting a bit but not totally I kind of wonder what an equivalent of T3 is to T4.
So if you could be Ok on 100 Levo but cant convert fully then how much T3 would be equivalent kind of... really roughly? I have never taken T3 but did take NDT with T4 which was a majority of what I was taking a while back which was fine but mega expensive so I decided to go on all T4 only, thinking I would probably be OK converting but nervous coz in the end my sister couldnt convert at all and hey presto... I found out I cant fully convert so am trying to work out what to expect if they do offer me T3. I think it is better from what I have read to have a mixture of T4 and T3 if I can do some converting as I kind of worry about maybe speeding up the non converting process if that is actually what happens and some say a mixture is a good idea anyway.
Sorry if I sound confusing. I am trying to work it all out. I dont want to go into an NHS endo appt and be fobbed off and not even know they are doing it. Thank you
I don't think it works like that - because we all convert at different rates - even if it's pretty rubbish! So you will see lots of people who takes ages - years - to get their dosing optimal for them - even though a tiny bit of lio may make a huge difference on their journey. Having said that, many people on combination of levo and lio who post here seem to be happy with one 20 or 25 mcg tablet of lio - or at most 2; but people on lio-only need more.
Some people are really really sensitive to lio and get jittery on only the tiniest doses. Others - less so. Lots of us like both free T3 and T4 to be nice and high - in the top third of the lab range - hence my suggestion that you don't over-reduce levo if you can get a trial of lio - I've seen people post here whose free T4 was pretty low to start with, who then get their levo reduced too much and it goes very low. A good number of people seem to find that free T4 drops when they start taking lio anyway. And TSH always drops like a stone - which freaks far too many GPs who should know better.
So basically what I'm saying (rambling - sorry) is that it's all about YOU and how you react to your meds, and little baby steps changing the combination (only one thing at a time and slowly as it takes a while for your body to adjust to hormone changes) until you find what suits YOU.
Yes going by TSH only for thyroid levels is useless even with T4 levels as mine look OK until you see the T3 level is under range.
I see it could be quite a lot of trial and possibly error to start with if I am given T3 and maybe some Endos either cant be bothered to try for patients or take the NHS line that no one needs it simply coz the NHS is no good at broking good deals with pharma companies so are paying too much for T3 which = just tell patients they dont need it as it is too expensive... or am I being cynical. I wonder sometimes if I am better off on NDT but it is so expensive and I would rather be in the NHS system of treatment if possible rather than having to do my own thing and being disapproved of by NHS Drs on all levels for doing this.
Your GP is useless...but that is most likely because his thyroid education was useless.
Modern medics are trained to dose by TSH which research shows is totally inadequate.
A few thoughts...
Your TSH has dropped following the levo increase but that is not the whole story as your GP probably thinks is the case.
The important reading is FT3....T3 being the active thyroid hormone required by every cell in the body in an adequate and constant supply
04/21 your FT3 was -24% through ref range. It is appalling that your GP considered this to be OK!
Considering your dose of 125mcg levo your FT4 level is just 67.6% through the ref range, some people need closer to 75%, maybe slightly more.
Do you ensure that you take your levo at least an hour away from food and drink, other than water, to aid absorption?
Have you tested Vit D, vit B12 and folate... as well as ferritin which is very low.
Optimal nutrients are vital for good thyroid function, low ferritin is likely to impair conversion.
I have inherited the Dio2 polymorphism from both parents which has an added impact on conversion. The endo I saw was not helpful so I test privately, self monitor and self medicate....my GP knows this.
I suggest you first improve your nutrients and increase your levo to 150mcg...you have room to do this, then retest after 6 weeks. If that doesn't help then consider adding T3 (...and I say this as someone on high dose T3- only)
Assuming that T3 is the panacea of all ills isn't always wise, but medics may take your need for T3 more seriously if you can show that you have tried ( or wish to try) an alternative option first i.e optimise nutrients and raise levo, before asking to trial T3. You need to present a good case to an endo who may or may not be amenable.
I'm not surprised that you feel rubbish (been there, I could barely function) but I'm afraid there is no quick fix, it takes time ....and patience. My case was extreme but it took me about 3 years to resolve my problem.
I'm not a medic just a fellow traveller along the challenging thyroid road we are all travelling so my comments are based on personal experience, my own research and much support from knowledgeable members
How do i increase ferritin though coz iron ( ferrous sulphate ) only increases iron but not ferritin for me and I already eat a lot of iron rich foods like red meat and liver etc? I just cant get my ferritin up from super low.
I am low in Vit D and so are both of my children so I take Vit D daily. My Urogyne and holistic practitioner told me to increase my Vit D which I have done and will re test after a while of my new higher dosing.
I agree with Dippy Dame.Great advice. Personally I would get the list now and start checking them out. Find out if any are on the list for the hospital you have been referred to. 125mcg of levothyroxine is not that high a dose. So I would work on getting that increased at appropriate intervals.......& vitally, get your vitamins and minerals optimal. You heed these to be good to maximise the effectiveness of any thyroid medications. What is your B12 level? B12 is important in uptake and conversion of thyroid hormobes and is commonly low in hypothyroidism .
My B12 has been ok in the past but my folate wasnt I think. The one that helps to carry or store B12 was under range. I will re check this result from a while back and re test.
My Endo is going to be at MK hospital but he isnt on the list I believe and someone on another forum wasnt impressed with them there so I am not hopeful. I dont know if I can get another appt with another NHS Endo now that I have this appt in August though
All Tests shown are from NHS Milton Keynes and recent.
I am currently on high dose Vit D and need re testing for this.My folate ( just found my results from 2018 ) was under range even though my B12 was in range.
How do I get my ferritin to increase when taking ferrous sulphate only increases my iron but not my ferritin levels? I eat large amounts of iron rich foods but it doesnt help. I am breathless all the time and in the morning my BP is especially low but this could be down to low adrenals as well which has been the case for me in the past. I had to take steroids for a while but am off them now.
Now that I am on thyroid meds my uptake of my own cortisol is better but I still have low BP, just not as low as the 80/60 I was before thyroid meds. I am now 90/61 ish and I eat lots of salt all day so it can get to 98/65 but isnt great. I just dont want to take steroids all the time if can help it. What I was pregnant I went to 57/47 at one point and couldnt get up. I know this seems ridiculous but I think what made it worse was my throwing up all the time due to being pregnant. It crept up a bit as I went further into pregnancy and had more weight on me and stopped being sick all the time.
I dont eat gluten at all now but dont react to it. Its my holistic practitioner that has me on no gluten diet which is easy to accomplish.
I do all blood tests on empty stomach and no meds for 24 hours.
I had increased from 100mg Levo to 125 Levo only 5 weeks before the test you have referenced. We are to re test in a few weeks to see how things are going, through NHS and hope to get a T3 with a TSH and T4 for that test as well.
Already had coeliac blood test done a while back and was negative.
I cant always get the same Levo. I tried to do this but no pharmacy I have gone to could do this. I dont get on with Teva, as it seems to give me headaches etc not sure about the other brands.
In 2018 my B12 was 736 but my folate was 8.6, mega low. They didnt give me the ranges for them in London hospital where I see my Rheumatologist.
While i totally agree with the advice that improving vit's and increasing Levo before adding T3 is very sensible , i will just make the following point..... about 'evidence'
It will still depend very much on the attitude of the Endo you see....but, at the moment your latest blood results after 5 weeks on 125 present a very good case for (even !) the NHS to add some T3.
It's good that GP has managed to get NHS to test fT3 andfT4 repeatedly... 'evidence from their own lab, that T3 is below range, can't be fobbed off as unreliable testing'
Your GP has gone by the book as far as their levo guidelines are concerned ,and yet your fT3 is still clearly under range.... 'evidence that Levo alone is not enough'
by this i mean he has increased levo until TSH is low in range , but importantly still just within it's ref range. (...'important' as far as NHS thinking is concerned !)....'evidence that increasing levo further will contravene their own guidelines for treatment'
If you increase you dose now, then it's likely your TSH will fall below range, it's also possible your fT3 will just manage to crawl into the ref range .. enough for them to say 'it's in range' , but probably not enough to feel well, given how crap your conversion is.....
If this happens , then you just give the Endo the opportunity to say .. 'you feel bad because your TSH is too low, reduce your dose first and then we'll see. blah blah' or 'your T3 is in range so that's OK' .... it's not that i think they believe this will really improve things, but i guess they are always looking for an easy opportunity to say 'no' , or 'not yet' where T3 is concerned.
So while it is fairly obvious to us that an increase in Levo is worth a try to see if you feel better on that , and it probably wouldn't take your fT4 over range... unfortunately , doing it may destroy your current extremely clear evidence that you need T3 added... and if you suspect you've been referred to an unsympathetic endo you will need the clearest evidence possible, and not want to give them any excuses to deny trail of T3.
(surely even a really deliberately difficult endo can't explain his way out of your current 'below range T3 with TSH right at bottom of range' results as anything other than what they are which is not enough T3 being made from Levo)
IF they do refuse a trial then the only other option they have with your current results is to instruct GP to increase Levo and therefore allow TSH to be below range.... so you'd still get to try a increase in Levo dose , but it would come with the 'permission ' of the 'Endo God' , so GP's in future would have that instruction to refer back to , and this may save you a lot of bother in the future with GP's wanting to reduce dose whenever TSH is below range if you ultimately decide to try being on higher dose of Levo , or add T3.
so if it was me, and money was an issue .. i'd wait for the appointment on the dose you're on.. it's horrible i know ,, but it might pay dividends in the long run.... if you can get NHS to prescribe T3 without giving them the impression that you are 'just insisting on taking too much Levo' then you may have better evidence on record that will help you hang on to the T3 prescription when they inevitably try and remove it as some point in the future....They probably will try... it's happening a lot.
If money wasn't an issue i'd sack em off completely and just buy your own using a private prescription (or find other source), pay for your own bloods and follow advice from others who've done it on here about how to introduce dosing and do testing (seem s even a lot of private Endo's who do prescribe T3 are still rubbish at introducing T3 , they often tell people to reduce T4 too much at the same time as introducing too much T3 at once)..... but once you've done it privately, if you then can't afford to keep it up in the future, it's likely the NHS will always see you as ' overmedicating yourself ' and insist you go right back to where you are now before they consider adding any T3 at all.
Sorry to be so cynical and depressing .. but it's how i see the situation from reading posts on here for a year.
Thank you for your interesting, practical and frank comments. Just for the record it was the nurse at my GP practice that has helped me with thyroid testing and getting a T3 done as they are also low thyroid. My GPs have just filed the results regardless of how under range my T3 is.
Do you have any experience of NDT and do you feel this is possibly a better option than messing about with T4 and T3 together or T3 on its own if I was offered that? I have taken NDT before without Levo to begin ( a long time ago ) and then with Levo reducing Levo with NDT and now just on Levo which I have been doing for a while now which is when I have realised that I just cant convert fully and I suspect this will get worse as it did for my sister who got no help at all from the NHS and just took NDT in the end.
I hoped I would be ok on just Levo and that way I could reduce costs but if the whole issue of not only getting an Endo who will give me T3 with or without T4 and then trying to balance it and then have the worry of maybe having T3 taken off me.... how sick will I be then? I am too old and have too much to lose by walking on broken glass with the NHS to get the right treatment. I am now beginning to worry and wonder if it is worth the whole worrying journey and with no guarantee of help in the short and long term from the NHS at the end of it.
Can people be ok on NDT if they have no conversion of T3 which is probably where i am headed? As this could be an additional issue if I went private and just took NDT or combo of Levo and NDT in the short term and then had issues with no conversion of T3 down the line.
Others who take it ,( i don't ) will be able to answer better than me about NDT , But i think NDT would be just as good as Levo +T3. even if you had 'no' conversion ..( i'm pretty sure everyone has 'some conversion' even if it's really rubbish)
And theoretically , even if it was possible to have absolutely no conversion happening in your own cells, NDT (as long as it's the proper stuff) has T3 in it .. i forget the numbers ,.. might be something like 36mcg T4 / 9mcg T3 .. you'd have to ask someone with a better memory ! ...
but i think its a higher proportion T3 to T4 than the often quoted 20%T3 to 80%T4 that the thyroid gland produces (actually natural production is much more varied then that )
in fact ,this is one of the (phoney) reasons NHS guideline say we can't have it .. because 'the proportion of T3 to T4 is higher than we would naturally get' .. some people deal with that by adding some Levo to NDT to get the proportion s back to more normal human production.. some don't need to.
There are plenty of people on here with no thyroids who prefer NDT to T3+levo.
There are a few who really didn't like NDT, but if you've already been OK on it in the past . hopefully it should still be OK for you in the future .
The one fly in the ointment is supply of NDT. it does seem to be a bit problematic. But if you perhaps post a new question asking for clarification about how people with really poor conversion fare on NDT , and ask for those who use it to PM you how they get it , it will be seen sooner by those with more knowledge than i.
But i do unfortunately see frequent posts from people using NDT who are worried about where their next bottle is coming from ., there seemed to be a lot of issues last year with supply of the NDT from Thailand., production was stopped . swine flu epidemic i think , but i think it is slowly starting to be available again now....so in that sense it might not be any less stressful than playing the NHS T3 game.. I'm afraid the whole situation regarding ability to simply access what you need to feel well, just stinks, and is grossly unfair to people struggling with hypothyroidism who don't need something else to worry about.
But many people on here do mange to source NDT and use it very successfully.
I thought Armourthyroid came from USA but there will be other makes. There is one from Canada but i didnt feel it was as affective.
You make important points about the mix of T4 and T3 naturally and I kind of feel that this is best for me a I do have some conversion. My sisters conversion was so bad that she was ensign on T3 level so it was so low they couldnt measure it but yes I suppose she could have had some conversion left but we will never know how much.
I feel mine is going to get lower but would be happy to be on both T4 and T3 and maybe NDT is an option and I should look at all the different types and places it comes from as well. I had no idea it was available from different places to USA and Canada. It is very expensive though which was one of my reasons for trying to take just T4. Looks like that isnt an option for me now though as I feel rubbish on T4 only and my T3 is to low etc.,
If some people have no thyroids and are on T4 and T3 and it works for them then this is of interest to me as I think this is the best option for me whatever I am taking.. natural or Levo and T3.
You should ask for information about 'Thyroid S' i think that's what people use , and yes ,i believe Armour is prohibitively expensive . i think ThyroidS may be much more affordable , assuming you can get it .Be careful researching though , ask here if not sure of something .. there seem to be am awful lot of 'not NDT''s about , that don't seem to have any/enough T4/3 in them .
Thanks i will post another question about NDT and do a search i think. I know someone who takes hyperalergenics thyroid something or other and they are find on it. It might be an Allergy REsearch Group product. I am sure it is NDT. Will try to find out more
Trying to get a doc to prescribe t3 is like pulling teeth, so I completely empathize with you. For years I begged for it and thank God eventually found one that prescribed it.
I didn't read through everyone's response but I would like to suggest adding liver to your diet if you're not vegan or vegetarian to increase your ferratin. It literally saved me because that was the only sure thing that worked for me. When my ferratin increased, my free t3 that went below the range increased and returned to the normal range albeit it still was on the lower end of the range. Our ferratin lab ranges are 12-109 and if I'm sitting anything below 70, my tsh/free t3/ free t4 get effected.
I have been eating much more liver and beef just recently ( luckily I like it ) as I have been woken up by all that is written here along with my holistic practitioner as to how important it is to have my vits and iron/ferritin at the right levels. My holistic practitioner didnt tell me about it being important for thyroid levels. They werent convinced it was an issue until they saw my results for low ferritin. I havent found even iron pills any good to improve ferritin levels though although my iron was ok in range.
I will re test even if privately for ferritin level after a while of eating everything i can to increase it. I cant eat pulses due to fodmap issues as I cant digest pulses due to the shell/outer layer creating big issues for me so lentils are out but eat cabbage and spinach etc etc as well as liver and beef so hopefully it will make a difference. I take vit C as well etc.,
Am happy to do all I can to increase vits and will re test as well for T3 T4 and TSH hopefully late June early July to see how things are going then before my Endo appt.
I still wonder if it is worth relying on NHS Endos and would like to have an open mind but have already been told that our local hospital doesnt have a good reputation regarding low T3 non conversion issues so feel like I could be wasting my time trying and dealing with feeling rubbish for much longer than maybe I need to if I go for private Endo help.
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Any views on my results please?
Beginners post: Thyroid antibody test results in plain English please 
Medication for subclinical hypothyroidism 
Will B12, Ferritin, Folate levels rise on higher dose Levo?
I've finally had a 'full thyroid test' ~ What do the results mean please? Thanks in advance.
