Just got off the phone to endo regarding my blood test results. (I don’t have them in detail... it was like getting blood out a stone) basically I ran out of Liothyronine last week, which is ridiculous as my 6 wk blood test wasn’t due till Thursday 🙄 but he didn’t prescribe enough! So did the test Tuesday (after 4 days of no T3) managed to get out of him that my T4 is 11.1 and T3 3.2 (can’t tell you any more than that) all he had to say is “if you’re not feeling any better I think we should discontinue” I was like wooooah hold on! My trials only half way through! When I said I’d lost a lot of hair and thought I was taking too much he said not to adjust it, just continue taking it as it is 🤷🏼♀️ what he doesn’t know is he thinks I’m only on 50mcg of levo as he prescribed, I’m actually taking 100 (reduced from 125)
Bottom line how I feel... I don’t think I can do this!! I don’t feel equipped to balance the doses myself and not end up bald... and I don’t trust him! He just doesn’t care. It’s confirmed in my head now that he never did. He just gave me the trial to shut me up, mess me up, so he could move on and strike me off his list.
Gutted.
Written by
HollieBerry
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Oh god... ! Hang on a mo. You can do this, but you’re not thinking straight because the endo has completely ****ed up your starting dose and you’re feeling too rubbish to think it through properly. Can you phone a secretary at the dept to actually get the ranges for the tests?
Again, it’s like getting blood out a stone, I asked the secretary for my results from the tests before these and she said she couldn’t give them me... ask my docs.. then when I ask the docs they make out like you’re requesting classified information and they need to ask for ‘permission to release it’
SlowDragon it’s all too much 😭I’m trying. My iron was low in September, they gave me a 3mth supply of ferrous sulphate... I mentioned this to the endo on the phone today.. I said why haven’t you checked my iron? It was low previous to this and you haven’t checked since? No real response, he didn’t think it was relevant. I’ve been taking vit D and K2, iron and vit C, b complex, magnesium glycinate... this is a big thing for me, I’ve never concentrated this much on my vitamin and food intake in my life. I’m the most Un-regimented person ever 🤦🏼♀️Just to take these supplements, plus thyroid meds, and at the right times has been a challenge. I’m not strictly gluten free but I make gluten free choices as much as possible.
I feel the test was a waste of time too, he said my t3 level was low, I said ‘isn’t that because I haven’t had any t3 for 4 days?’... He didn’t even acknowledge I said that let alone explain or answer it.
And you said my T4 looks too low, he said it was better from my last results... I said ‘what was it then?’ He said it was 16.2 back in December and now it’s 11.1 so now it’s better??? My minds blown it really is.
So, you started on 20 mcg T3? Yeah, either he's very ignorant, or he set you up to fail. I think he probably set you up to fail because otherwise, why would he tell you not to reduce the dose, just to abandon the trial. He didn't want you to feel better, he wanted justification for not prescribing T3!
So, what are you going to do now? The obvious thing would be to continue on a lower dose. Did you get a new prescription?
Yes started on 20mcg (2 x 10mcg) a day. I said I’d like another prescription, he’s posting it to me. He said continue same dose. I told him that many people on here said I’m on too high dose.. he said ‘don’t listen to people on the internet’ I said it’s not just ‘internet’ these are real people with real experience of taking T3.
So anyway, I don’t trust him, when I get the next script I will take half the dose he has prescribed. But in all honesty I feel a bit defeated with it all.
No, don't let it get to you. It's never easy, but he's made it more difficult for you by starting you on too high a dose.
If I were you, when you go back on T3 - as you've been off it for a few days - I would start on 5 mcg. Take that for a couple of weeks, and then increase by 5. And, continue like that until you either feel over-medicated or you get up to the prescribed 20.
Doctors tend not to like you reading on internet and discussing thyroid on forums. Several times I've been told 'you can't believe everything you read on internet. Well, no. I'd have to have a multi-personality disorder to do that, because there are so many different opinions! So, I use my common sense and experince to sort the wheat for the chaff! Most of it is chaff, anyway! lol
Ok. Thank you, I will take your recommendation there. And when I say I’ll take your recommendation/advice on dosage, I don’t put any responsibility on you, I know you aren’t medically trained, but I trust your experience. I don’t trust that endo, not one bit. In fact, his disregard of my health and well-being has really scared me.
Hi HollieBerry, just agreeing with the others especially Greygoose, about starting on a lower dose of T3 and very gradually increasing, and, lean on us, we will be here to encourage you, we know how tough it is doing this as if on your own.
You are entitled to a print out of any thyroid blood test, by law. My Endocrinologist's secretary is equally unhelpful when I ring for my results. But I found out that your GP secretary can log into something called the 'Dash' system where they can view blood tests taken at the hospital. Of course it's a battle trying to get them to do it. It annoys me no end, but they should at least read them out to you over the phone and give you the reference ranges. About hair loss, I know it's horrible but you have to remember it can happen if you are hypothyroid or hyperthyroid. But from my experience hair loss is more to do with your iron levels. Remember that thyroid hormone T4 uses iron in the conversation process. Also being anaemic alone mimicks hypothyroidism. I am not saying that you are not hypothyroid, it's just very common for the two problems to present together. If you are hypothyroid and anaemic you will not be able to put one foot in front of the other. I have been in this position. If you can stand to eat liver and bacon once a week it would be better than a supplement, if you hate it try organic beetroot juice, equally disgusting to me but if you are a vegetarian it's the best source of iron. Regarding your trial of T3 you need to insist on getting your free T3 higher in the range. Mine is 44% through the range and I am 20 micrograms 3 times a day, but they are refusing to increase my dose and I remain hypothyroid. They are now trying to make me take T4 again even though I have the faulty DI02 gene which means I can hardly convert T4. It might be worth paying for a private gene test. If you test positive they cannot take away your NHS prescription for T3.
Thank you for the advice lulu. I did have low iron but have since been taking ferrous sulphate, I’m going to test my levels myself soon as they endo doesn’t seem to think it’s important.
Last night I was thinking, and I came to the sad conclusion that it’s my own fault for the hair loss 😞 when I started the trial, the endo prescribed... 2 x 10mcg a day... and many people on here said to ignore that, it’s too much, take half that amount to begin. But I was greedy I suppose, if felt so poorly I wanted the stuff to work faster, So kept with the endo recommendation. HOWEVER, he also told me to reduce levo to 50 (from 125) but people on here said I’d feel lousy with that drop so I chose to listen to that and kept on 125, reduced to 100 after 4wks.
So because I only took Half the advice on here, by keeping on same level of T4 yet adding high dose of T3 it’s probably my own fault my hair’s now falling out. I feel so stupid 🤦🏼♀️
don't feel stupid. Humans usually have to make mistakes in order to learn anything. (eg, Penicillin discovery was an accident)Those of us that make 'mistakes', (otherwise known as using our brain and trying a different idea) and then learn something interesting from it, even if it's an undesirable result, are much less 'stupid' than people who never consider that they might be wrong.
It is possible to improve your own levels of iron and ferritin without involving doctors.
The iron supplements that doctors prescribe are available from pharmacies in the UK without prescription - you just need to get the pharmacist's permission. If you get refused (it's only happened to me once) just go to another pharmacy.
Ferrous sulfate is not a particularly popular iron supplement - few people tolerate it well. But there are others available that doctors could prescribe if they wanted to...
Ferrous sulfate 200mg - each tablet contains 65mg pure iron. (FS200)
Ferrous fumarate 210mg - each tablets contains 69mg of pure iron. (FF210)
Ferrous gluconate 300mg - each tablet contains 35mg of pure iron. (FG300)
The therapeutic dose of FS200 is one tablet, two - three times a day.
The therapeutic dose of FF210 is one tablet two - three times a day.
The therapeutic dose of FG300 is four - six tablets a day in divided doses.
It isn't always necessary to take the maximum dose - taking fewer may work just as well - but you won't know the effect on yourself until you try them and then test.
Sources for the above - all taken from the BNF - the British National Formulary :
If you want to read the patient information leaflet for a prescribed drug before getting a prescription, see the emc - the electronic medicines compendium :
Drug manufacturers aren't obliged to keep their Patient Information Leaflets on that site. They may keep them on their own manufacturer websites. But the vast majority of PILs (as far as I'm aware) can be found on the emc.
Please be aware that too much iron and/or ferritin is poisonous. Regular testing of levels is essential to keep yourself safe and as healthy as possible.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Humans usually have to make mistakes in order to learn anything. (eg, Penicillin discovery was an accident)Those of us that make 'mistakes', (otherwise known as using our brain and trying a different idea) and then learn something interesting from it, even if it's an undesirable result, are much less 'stupid' than people who never consider that they might be wrong.
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