Hello kind community. I’m sorry I am here again after every blood test. My recent bloods were taken 6 weeks after the last, and you kind people suggested I tweak my meds as my T4 was 14% in range and my T3 at 40%. I have the DIO2 homozygous gene so have issues converting. I therefore upped my T3 from 25mcg daily to 30, and left my Thyroxine at 75mcg.
I got my results of that titration today and they are awful, apart from my T4 which is now 40% in range. I am well over the range for T3 (over 200%!) folate and B12 are also over the range. I had private bloods from Medichecks and my transferrin saturation is well over the 40% range which is too high. Apparently I can’t get rid of iron. It was suggested I start to donate blood.
My serum thyroxide peroxidase antibody concentration was <28 iu/mL [ 0-60]
Anti-tissue transglutaminase level (XalNX)
TTG ABS ( IGA) <1.9 CU [0-20]
I don’t understand what is happening to me but all I know is that in spite of being careful, titrating super slowly, having a healthy diet and supplementing carefully I’m still not getting it right. I’m trying to keep positive because I know I’m in a privileged position that after fighting for over 2yrs I’ve been given T3 and I am extremely grateful for that. But the fear of it being taken away prevents me from saying a peep to my doctor who simply wrote ‘satisfactory’ on my bloods!
I don’t feel hyper given I’m over range with T3, in fact I’m still tired, constipated and slightly foggy. My mood is quite low too and I just don’t want to go back to last year when I felt suicidal.
Please help me- I just don’t know what to say/ do, specially when my GP clearly doesn’t know how to read bloods, and if I get sent back to an NHS endo they will take the T3 away from me because their stipulation was that I needed to keep my TSH between 1-2! I’ve been taking my temperature and pulse religiously and still low ( around high 50s pulse and 36 degrees temp.) I’ve not had any flutters/ anything that I should be alarmed about. Please help. Where do I go from here? 😭🥰
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Piggyoink
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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).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Assuming yes
Your results suggest you might need to up Levothyroxine a little (perhaps 75/100 alternate days) and reduce the T3 by 5mcg
Many of us need good FT4 as well as good FT3
Do you normally split your T3? Or take as single dose?
Thanks so much for taking the time to help as always. I’ve followed your recommendations to the letter with regards to testing and vitamins so not sure these would be an issue. My Vit D was tested last time and was in range ( I bought it back down after too much supplementing.) Yes to strictly gluten free and I take my dose all in the morning- empty stomach, nothing to eat or drink for over an hour and no dairy. I’m going to reduce my T3 by 5mcg, test in 6 weeks and then if I need to readjust I’ll do that with thyroxine... thanks so much xx
f I get sent back to an NHS endo they will take the T3 away from me because their stipulation was that I needed to keep my TSH between 1-2
Well, they set you up to fail, didn't they! I can't believe they didn't know that that was impossible if you were prescribed 25 mcg T3. T3 suppresses TSH. That's what it does. Unless you take something like 5 mcg, and what good would that do? Pretty sure this was just a ruse so that they could eventually take the T3 off you again at some point.
Thank you so much greygoose i believe that too. It’s just a cruel game to pay lip service to insistent patients, the try and prove them wrong so they can keep us sick and on more meds than we actually need. Really evil! 🤬😭
That is a very weird requirement. I can't see how can you take T3 without TSH dropping? On T3 my endo was perfectly happy for my TSH to sit well below 0.5.
Thanks Hidden well A’s Grey Goose has flagged up, I can’t really win with them hence why I need to keep schtum and rely on all you lovely people to help me before anyone notices anything and start to reduce my prescription! X
The last Endo I had who helped me get stable on NDT told me I should be aiming if properly medicated to get the following - TSH should be suppressed 0.01, FT4 can fall in its range but FT3 should be high in its range, top quarter, but never over. Too many ‘experts’ insist having a much higher TSH but to me it is logical. If your T3 is in the right place then the pituitary has not need to ask for more so TSH becomes suppressed as you are correctly monitored. The only down side I can see with taking T3 is that we cannot tell if we are converting well and I knew I wasn’t before changing over so tested Vit D, B12, folate and Ferritin and two were low so I addressed that. Depending how low and how many can take time to address but I retested after 5 months to find I had reversed that so then started on NDT and found that as I had worked to succeed I had no issues changing over and not issues since. I don’t have antibodies so may be that helped as well but I took on board things work slowly with our thyroid so stuck at it and succeeded. I just keep an eye on my vitamins etc.
Thank you for your insights silverfox7 around a year ago I was self medicating on Metavive and actually didn’t have these wildly fluctuating issues. I was contemplating going back to it but after the huge fight I had to get T3 prescribed ( including involving my MP and official complaints about my GP/ surgery,) I darent say i want to change. Notwithstanding the fact I don’t want them to use me as an excuse not to give T3 to others. I need to be more patient I guess... it’s just so difficult when everything has been such a struggle. Thanks again for your time x
Thank you so much Murphysmum yoyr kind words ( and those of this amazing community,) are the things that have kept me going during dark times. So appreciated and I hope I do the same for others x
To me it looks like you’re on too much T3. How do you spin it out throughout the day. Do you leave approx 8 hours between each dose. I think they’ve put you up too high. If my dose goes too high I don’t go hyper I go very low just the same as not enough T3. Too much makes me weak, constipated, skin flares up, low mood. I take 5mcg three times at day. 7.30, 15.00 and 22.00hrs. I also take 75mcg Levothyroxine. I too have the DIO2 gene from one parent. I still don’t know why I’m on Levothyroxine as it has been proven I can hardly convert on T4 alone. It’s never been above 3.9(range 3.7-6.0). I’m going to ask why I need Levothyroxine on my next appointment. Also my NHS Endo warned me that if I go out of range he will stop prescribing T3. Bastard I thought!! He’s supposed to help get it right and keep you healthy not worry you to death. Luckily I also have a private Endocrinologist who I completely trust who has helped me to keep well and within range. My latest results are.
T3 4.8(3.7-6.0). T4 10.8 (7.46-14.4) TSH 1.22 (0.35-5.56). Ive just increased from twice to three times a day 5mcg T3. So these bloods should get slightly better in the coming weeks.
5mcg T3 does really help me. It’s enough for my system to feel good. I was unable to walk properly for 15 months before T3 was prescribed. I joined a gym 2 weeks ago on it. I’ve not felt so good in years. I was on T4 only for 11 years. I needed T3 all along ref DIO2 gene. So 5mcg can turn a person from housebound to joining a gym, I’m proof.
I’d suggest you need to lower your T3 and spread it evenly across the day. I take 5mcg going to bed.
Thank you for sharing your comments McPammy they are always useful to know. I’m going to reduce my T3 by 5mcg and retest in 6 weeks, see how that goes. For me I take t3 and thyroxine first thing in the morning as that works better for me. And like you, it has been a revelation in terms of making me much, much better. But I’m not quite there yet it seems. Sending appreciation for your input x
I understand. We all need to take things at our own pace and see what works for us.
Just a point that my private Endocrinologist stated to me last week. Is that, if you take T3 in one hit you get a spike and it’ll need replenishing after 8hrs also. It does have a short half life. If you get the dose right that doesn’t spike over the range then that’s the best outcome and repeat throughout the day. Your body doesn’t make T3 naturally in one dump. It makes it throughout the day as you require it, depending on how much energy you are using. My Endo is the most senior in the UK. Levo is different when taking. It sits in a store waiting to be converted. So yes Levothyroxine once daily but T3 should be 8hr intervals if you don’t want a big spike then go too low until the next big spike.
I don't agree with the Endo's explanation of T3. Another researcher/doctor/scientist (now deceased) who was also an expert in the use of T3, stated that we had to have a sufficient dose which will then saturate all of the T3 receptor cells, then it sends out 'waves' which last between one to three days.
I've experimented and I allowed three days gap between T3 dose and I was fine. I do take T3 when I get up and wait an hour before eating.
If I took 15mcg of T3 once a day in stead of 3x 5mcg a day I know it would make me very unwell. I wouldn’t be able to walk due to the spike going way over the range.
We are all different in the ways our endocrine systems work.
I only need small doses of T3 or T4 to reach the highest point of their ranges. Some need more, some need less to function normally. Some are ok taking once a day. Some need to spread their doses throughout the day.
I do trust my private Endocrinologist whole heartedly. He is the only Dr in the many I’ve seen that has actually made me well again.
The Professor I’m now seeing is based in Oxford. I was recommended to see him by Slowdragon when I was in a real bad way. I think he may be on the TUK list of sympathetic Endocrinologists
Thanks for this McPammy , I think this is where I am. I get worse on increasing doses of levo (proved this to myself over the last 4 weeks!) but I’d never heard anyone say the same about T3. Makes sense I guess - does it convert to RT3 also?
I’m now beginning to reduce my T3 and we’ll see. As piggyoink says, it just takes so damn long!
I do believe that reducing T3 to feel better and be close within range can happen quite quickly as T3 has a very short half life, unlike Levothyroxine which has a long life. If I’ve reduced or increased my T3, it shows in my blood results within 2/3 days.
I’d hope you wouldn’t need to wait any longer than a week.
I’m not versed on rT3 really. I’ve read that too much T4 can end up with rT3. I don’t fully understand how it all works.
No, T3 doesn't convert to RT3 . T4 - being inactive, has to convert to RT3 and into T3 the active hormone required in all of our T3 receptor cells. I also have to state I'm not medically qualified..
I think taking a little T3 on its own first thing is a good start as that’s what you body is needing most. Then start to think about the best time to take your next dose and juggle with that one as to timing and amount. I’ve no experience doing this but logic tells me if you don’t take all the rest of yourcT3 for your second dose if could be then easier to experiment when your body needs this second dose and then start to look at varying the amount to eventually get you through the rest of the day. Be aware though you body will need time to adjust with each change plus to start off we know you were overmedicated so you are bound to notice the change but not be judgmental till you are used to the change.
Have you tried natural desiccated thyroid (NDT) hormone? I have been on all sorts of synthetic replacements, none of which have worked for any length of time. Then I went private and started NDT and boy has it helped after years and years of feeling poorly. Some people just don’t process the synthetic hormone replacement and need a more natural kind. Have you tried NDT?
HashiFedUp thanks for the advice. The only ‘natural’ treatment I’ve had was a couple of months on Metavive which was better than t3 but I don’t think I was on it for long enough to be optimal before I finally for T3. So I think I just need to continue to titrate, suck it up and see where I get to. It’s only been 6 months so I’m going to have to give it a year With small tweaks before I can feasibly look at NDT... bummer waiting.... but I guess needs must xx :’(
Considering that NDT was the first thyroid hormone replacement and saved millions from an awful death, the fact that the 'association' made False Statements about it in order to withdraw it from being prescribed in the UK.
Despite one of Thyroiduk's advisers sending them a Rebuttal, they never did respond even though he wrote to them every year for three years before he died due to an accident.
The organisation seem to have lost their 'compassion' somewhere or other so that patients can only get T4 alone now.
They (NHS) haven’t done the research on long term effects of NDT so they won’t prescribe it. That’s the only reason. No money in it for the pharmaceutical industry perhaps so no money for research. Call me cynical but I’ve been through the system...! 🙈
Just wanted to say i feel your frustration, hang on in there......remember our childhood game 'snakes and ladders' ? thats how i discribe our disease......and it is possible to win, dont forget that....take care,
Blood tests were introduced along with levothyroxine - T4 alone.
Therefore if we take or add in other thyroid hormones, blood tests do not correlate. We go by 'how we feel' rather than the TSH which is variable throughout the day. The doctors are too fixated upon the TSH which is from the pituitary gland and rises to try to flag our gland to issue more.
If I was having a blood test and T3 was included in my dose, I'd miss it on the morning of the test and take it afterwards as I would T4.
Go half-way down the page to "Dear Thyroid Patients"and you will see the statement this Specialist makes about the TSH. No wonder he cannot take on any more patients (he is in the USA as well )
I have the Dio2 snp/homozygous and now know that I have Resistant to Thyroid Hormapone. (RTH)
How do I know?
After many and various titrations and eventually building my single daily dose of T3 to 125mcg I am now beginning to recover. I am due to increase again by another 6.25mcg....and to continue monitoring symptoms temp, heart rate and BP until I reach my therapeutic window.
My TSH is through the roof but with RTH that isn't the problem, it just means there is a lot of T3 sloshing around in the blood where it isn't doing anything and will eventually be expelled via kidneys and bowel.
T3 only gets to work once it has entered the cells....sadly as far as I'm aware there is no test to measure cellular T3.
We have to rely on symptoms and careful monitoring.
The RTH reduces the amount of T3 that enters the cells so to counteract this a supraphysiological dose of T3 acts as a battering ram to force large amounts of T3 towards the cells....that extra force enables some of that T3 to be pushed into the cells and to (eventually) overcome the low T3. What is left over sloshes around in the blood until it is excreted.
Clearly that's a very, very basic description,
Having RTH means that we can tolerate a huge dose of T3 that would otherwise cause many symptoms of overmedication....and be dangerous!
Low cellular T3 may very well be your problem
There are trillions of cells in the body and they all need an adequate and constant supply of T3 so that the body can function properly.
Unlike you I self medicate so have been free to trial possible solutions without restrictions imposed by medics who frankly often haven't a clue.
My advice came from amazing people here and from personal research.....as someone else said recently, "The TUK school of medicine".
It has taken about 2 years to leave behind a state where I could barely function
Recovery is a long slow turbulent and often lonely journey but there is light at the end of the tunnel.....which I would never have caught sight off had I stuck with NHS protocol. It sets us up against the clout of political will and the power of vast finances.
Sorry this is a bit of a rant . It makes me so angry that we have to fight our own battle against the drivel spouted by many medics because they (and politicians) won't open their eyes and ears and look and listen to what is staring them in the face.
In the end it's our own determination to learn about our condition and to fight to recover, that counts.
Thank you so very ku h for your thoughtful and informed comments. I am always keeping an open mind and trying not to be too impatient however the desperation to be well is just too much sometimes. How do you know/ test for RTH? As of there is a test available I’d like to do it just to eliminate ( hopefully) what is happening... or is that a really dumb question? Thank you again DippyDame i really appreciate your time and kindness.
I'm afraid RTH is a very complicated issue which can have genetic origins ( which I do not appear to have) or can, as I understand it, be acquired. I only know what I have experienced in my own situation it involved a lot of trial and error which would probably make most medics freak out!
However there are a few of us on the forum who self medicate with a larger than "normal" dose.
I found the work of the late Dr John Lowe very helpful (shaws - above - has already referred to his work) Amongst other sources you might find this
ebook interesting it is available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton.
I'm not a medic, just another struggling patient, but from what you say I would suggest that you need T3-only.....in which case we usually have to take control and self medicate. Once you've done some homework it's not so terrifying as it sounds!
Before you jump to any conclusions/decisions I suggest you first read Hugh's book to learn more about RTH.
Stay strong....and post any questions/concerns on the forum and advice will appear!
I could not have made this journey without the support and advice of TUK members.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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T3 
Disappointed in my Endo- any advice please.
Was feeling better, now feel awful advice on where to go from here.
Can someone cast an eye over latest results please
