Hi every one just after a little advice in the hope that my Endocrine nurse will call me after my last results last Friday. I had a partial thyroidectomy in 1995 But since 2017 had symptoms of Hypothyroidism which my GP ignored until I was admitted to hospital unable to function at all. I eventually saw an Endocrinologist who told me I had been undermedicated for years. It was decided that I was potentially not converting well with a T3 of 2.9. I was started on a 6 month trial of T3 last December. Im currently taking 75mcg Thyroxine & 10mcg T3 x 2 daily. My T3 has been slowly improving however my T4 is getting worse. My results on Friday show T4 at only 27.27% through range. Any help gratefully received as I am feeling really exhausted yet again & particularly cognitive issues are much worse.
It looks like they forgot the TSH although it may come tomorrow.
T3 5.2 (3.1-6.8)
T4 14 (11-22)
Thanks
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Otto11
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For your folate inparticular you will be needing the B complex daily. You haven;t given the range but 8.8 for folate is low and we usually aim for minimum 20.
Ferritin isnt terrible but aiming for 100 is better so keep going with the pate.
Hi my Folate range just says above 3.9 ? I hate the B complex tablets I currently have but persevering as they were expensive. I didnt realise when I got them they had folic Acid in & not Methylfolate.
Thanks so much for your help. I had a call from my endocrine Nurse as I thought I would who said my results are perfect! She said definitely no to increase of either T3 or T4.. She said if i raise my T4 then my TSH will be undetectable & that would be dangerous. I told her i'm feeling exhausted again & she said go to see your GP as god knows what the problem is but its not your thyroid. she then suggested I may have the holiday blues!!!
The awful thing is you really only have the choice of taking things into your own hands by finding a private Endo who isnt fixated on TSH, perhaps somewhere like Roseway pharmacy prescribing service which would be cheaper, or self medicating. I'm sorry its like this.
When T3 is introduced both TSH and FT4 fall naturally....that's just how the body works!
They were rediculously slow to identify poor conversion
It can be trial and error to establish the balance of T4 and T3 that your body needs....but FT3 is the most important result, not TSH Aim for FT3 approaching 75% through the ref range
Currently -
FT3: 5.2 pmol/l (Range 3.1 - 6.8) 56.76%
It's improving but still a tad low according to symptoms
Make sure they consider symptoms not just numbers!
It looks as if you need more T3 but if they're not clued up you may need to push them a bit. No need initially to lower levo when increasing the T3 dose
Have you optimised vit D, vit B12, folate and ferritin to support medication?
Thanks. I thought maybe I needed more Thyroxine. I'm hoping I get to speak to my Endocrine Nurse but I suspect they will think results are ok & leave it at that. My 6 month review was due & I had an appointment with the Consultant for the first time tomorrow ( saw registrar who started T3) but it has been cancelled till October as they have not enough consultants currently. I'm trying to optimise my Vitamins (liver pate twice this week) no idea why Ferritin has reduced as used to be around 100. GP's are keeping a tight reign on my T3 meds allowing only 1 month at a time so can't stockpile at all unfortunately.
The whole T3 saga is madness...you'd think they were dealing with heroin!
It's a bioidentical replacement hormone not a dangerous drug per se.
I doubt an endocrine nurse has the level of training to dig deep into T3 function.
Few really understand it...it's no more dangerous ( less often so) than any other medication providing it's used correctly....and there lies the crux of the matter. If it's undermedicated it will do nothing, if they even suspect it's overmedicated they panic.....you just drop the dose again!
The science is out there to prove this but they cling to outdated but established beliefs instead. They need to be brave and risk losing face to change this!
T3 is one of the most important hormones in the body ....if it is too low we really suffer....been there!
( I'm on high dose T3-only so have travelled the road)
If your conversion is poor adding levo is not going to raise FT3 by much and the T3 you are taking will lower the FT4 in any case.......but it may be your only option.
Metabolism depends on T3 and if that is low then metabolism runs slow and energy levels slump....seems you are experiencing just that.
I hope your consultant is thyroid hormone savy....not all of them are.
Maybe I'm outspoken but as I say I've listened to all the NHS proposals....they failed for me....so I now self medicate....agreed, not possible for everyone but it's keeping me alive after levo nearly didn't!! After some discussion my medics now understand and leave me in charge of my T3 medication.
Nutrients are essential but so is the correct replacement dose of T3...my advice is push for an increase you are only on 20mcg daily right now!
Bless you, rant no problem. I need to rant too, plenty! I did try about 2 months ago to add in a little extra Thyroxine but got very shaky hands. Now i'm feeling like i'm heading the same way as before I added T3. I wish my appointment wasn't so far away. I will call my Endocrine Nurse & just hope I get the nicer one of the 2. I do take on board what you are saying but not sure how taking more T3 will raise my T4. I thought if I added Thyroxine it would help raise my T3. Have i got it the wrong way round. sorry my brain just wont work at all today.
It won't.... but it's FT3 you need to raise....with T3!
Yes if your T4 to T3 conversion is robust then adding levo will raise FT3, but your conversion is poor, so adding levo is unlikely to raise FT3 by much....so to raise FT3 we add T3 instead
(I'm on high dose T3-only and haven't had any levo for about 8 years. Some of us cannot tolerate T4.)
You say you reactedbadly to an increase of levo.
Adequate T3 will lower cholesterol... it likely come down after you added T3!
Oh thank you. I see what you mean I think. . I’m finding this so complicated as my brain is mush! I’ve been on Thyroxine for 29 years so it’s difficult to comprehend. No one ever tested my T3 or T4 as far as I know till 2022. . That’s just madness. But don’t I need to raise T4 too?
Personally I would concentrate on FT3 level but if that concerns you then increase T4/levo if you prefer....but consider you say below that adding extra T4/levo caused hand tremors!
If one converts well then raising the T4/levo dose will increase FT3.... but if conversion is poor, as yours is, then just adding more T4/levo is not going to provide adequate FT3....and the bottom line is that T3 becomes the active thyroid hormone which, for good health, every cell in the body needs in abundance
So...if somebody says adding more T4 helped they are most likely good converters.
You say you were taking 118.5mcg T4/levo before you started T3, but T4/levo was then reduced to 75mcg ( not a good decision).
On adding T3 your FT4 level would have naturally been lowered... so converted T3 from that remaining FT4 would be less.....so symptoms of undermedication caused by the now lower FT3 started again
You're right, it's not easy and I understand that only too well. We can all offer our experiences and tell you what worked for us but in the end I'm afraid you have to weigh up the information offered and then make an informed decision as to how you proceed.
And you are correct again...it is madness. The medics I saw had no idea how to treat me, the endo couldn't understand my diagnostic test results and a GP told me to take " this little white pill for life and I would be well" After 20 years it nearly killed me.
I'm afraid in the end, and out of desparation, I told a patronising woman GP that if she didn't have the answer I would find it myself....and eventually after struggling to study through brain fog, pain and exhaustion I did find the answer. (Not a sob story....just fact!) An answer that only very few medics accept/ understand...and it involves a supraphysiological dose of T3-only. Again, madness!
I'm no expert, so it's not rocket science, yet they are supposed to be the experts and couldn't help.
You can't agree with every suggestion we offer because each is personal to the writer so you have to work out what you think is best for you because you know your body better than anyone else.
I'm sorry if I sound a tad blunt...but if medics were clued up none of these discussions would be necessary.
I agree with jgelliss keeping a journal/ diary/ spreadsheet with results, dose changes, symptoms etc is very worthwhile
Good luck and I hope I haven't complicated things further for you
Thank you. Im sorry you have had such a difficult journey. Im just pleased that I feel so much better than I have for at least 6 years when I thought I was dying & they were missing something. anyway, one of the endocrine Nurses ( the one I'm not too keen on) called me yesterday as I thought she might to say my results were perfect! I asked her why I was starting to feel exhausted again she said go to see your GP as it's definitly not your thyroid. she said god knows what is your problem then suggested as I had just recently returned from holiday that maybe I had the holiday blues!! 😡 I asked about adding T3 which was definite NO. so i asked about a bit more T4 but she said that would make my TSH undetectable which would be dangerous. I give up as we just go round in circles 🤷♀️
Thanks. She definitely isn't helping. She really upset me tbh. There is another one who seems much better & nice too. The results are on this post at the beginning apart from the TSH which isn't on my app for some reason but she told me it was 0.02. ( 0.27-4.2) T3 5.2 (3.1-6.8) & T4 14 (11-22).
Adding T3 in my case raised my T4 since less T4 was converting to T3 with the direct T3 dose.Sometimes it's advisable to lower a bit the T4 dose when adding T3.
Thanks. I was taking 118.5mcg when I started T3 so it was reduced to 75mcg. I realise im starting to feel like I did before T3 was added but it’s come on really quickly over the past 4 weeks. So I’m thinking you’re right. Thanks 🙏🏻
Personally for me since I had complete Thyroids removed I feel it sets me up for sensitivities to high or low thyroid meds. If my T4 is low for my T3 for me personally I also have all sorts of symptoms. It feels like my brain is not getting enough T4 . My set point prior to my TT must have been higher T4 with lower T3. I do fine with FT3 at 2.9-3.On the other hand I feel that FT4 at 1.4-1.5 works well for me .
Journaling symptoms with different doses and lab results help one find their right dose.
Many times hypo or hyper symptoms can be very similar.
I would like to emphasize that vitamins are very important components to help our thyroid meds to work fully. I experienced palpitations on T4 sole. Adding Iron (it was low) and adding low dose T3 since I don't convert my T4 to T3 well. Was a Great game changer for me.
Thanks. It really is complicated as we all seem to be different. What annoys me is that the NHS wont allow me to try different dose's to see if I can feel better. I'm just told your results are good. The Endocrine nurse called me yesterday as I thought she might saying that my results were perfect & that if I still didnt feel good then I should see my GP as I may have a virus. she said god knows what is the problem but its definitely not my thyroid. She even said that maybe I have the holiday blues as I've just come back from holidays! for goodness sake. How condescending.. I will definitely keep a record of my symptoms as best I can. I have several other conditions & a lot of medication too so its difficult to pull it all apart.
Thanks I have added them to Jayde's post above. Not been tested since November 2023. I did try to add a bit extra thyroxine a few months ago but got really shaky hands which I've never had before (struggled to even write a card neatly). I will try again though & see what happens. My GP wants to re test my Cholesterol which has already come down (from a finger prick test) as she dosnt think a finger prick test is reliable. I will ask her if I can have my Vitamins checked again. Thanks for your help.
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