4 months ago Endo said I had to lower my meds TSH-0.5, T4 -8, T3-4. So I did even though I told him I was tired. Had allsorts of stomach swelling, indigestion, gastro problems which I thought were perimenopause.just got bloods back after complaining to my GP TSH-32, T4-5 they didn’t do T3 on this occasion and yes I am in perimenopause. I have upped medication back to previous amount I feel fine when my TSH is around 0.5 but over the past few years I can’t seem to get my T4 and T3 up in the higher ranges. I’m fuming with the Endo as I’ve felt crap for weeks and will still feel crap for a few more weeks till meds start working again, I’m so tired and exhausted
(My ranges are (TSH-0.5-6. T4-12-22. T3-3-6.7)
Im self medicating with Thiroyd
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Joanneconnor
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Thanks I edited it sorry, my original Endo wouldn’t do my bloods if I went on natural thyroid, he passed me on to an Endo that would just monitor my bloods, but he keeps making the wrong decision for me, he told me to lower it about a year ago and I didn’t when I went back again he was a bit snotty saying I told you to lower meds why haven’t you and I said I was tired, he repeated again you need to lower meds???
If this new endo is monitoring you why isn't he doing FT3 every time which is the most important test when on NDT?
Or does this new endo not really understand what results are like when on NDT. Your FT4 was below range and FT3 very low in range and he said to lower your dose?!
Why not do your own private tests with Medichecks or Blue Horizon and do away with the endo, he's obviously not helping you to be well.
He isn't much of an 'expert' if he doesn't recognise that results should be read differently if taking any form of T3 plus itsessenrial that T3 levels are tested.
It's looking as though you aren't taking enough medication-what dose are you on?
When taking any form of T3 then if optimal then TSH should be suppressed, FT4 can be lower in its range but FT3 should be high in its range. You aren't ticking any of those boxes.
You have to add more medication and check your vitamin levels. Do you know Your ranges for those tests? The numbers look low but we can’t know for sure if you don’t included ranges 🤗
Doh! My bad 🤗 Yep your FT3 has loads of room for improvement! Take more meds, I don’t know about NDT amounts 🤷♀️ But you do need an increase. Stop going to that Endo! He’s just making you doubt yourself when you need to listen to your own body and educate yourself 🤗
Yes I normally ignore him but he shouted at me this time so I thought I better listen, and I’ve been awful, I will get my own bloods done I think, is there any harm with being suppressed past 0 as I don’t feel any ill effects from it?
I feel like a fraud giving you advice because it’s not mine. It’s what I’ve learned through this forum. People posts links and I read them, in fact I have spent hours and hours each day reading about thyriod function so I’m not sure why I feel fraudulent (suffering the same self doubt as yourself perhaps? We’ve grown up in a society where certain members are to be respected and we’re not to challenge then? That’s maybe a little too deep and off topic but it springs to mind time and again on this forum😬)
There is no harm in a suppressed TSH, it’s a small part of the puzzle and some would say it has not helpful at all once you start to add your own hormones. What you need to keep and eye on is your T4 and T3 combined with your symptoms. If your Vitamin levels are optimal they will help with conversion, otherwise you are just relying on the amount of T3 that’s in your NDT and your t4 may not be doing much.
You should only change dose by 1/4 grain (pr possibly 1/2 a grain) at once. Dropping or raising by a whole grain is way too much (not that you needed to reduce dose anyway). If endo is not prescribing, you don't need him
If your GP ordered your blood test then it is possible that the lab he/she sent it to for testing don't test for T3. The local hospital where I live no longer test for T3 on the advises of the CCG and so, even if my GP requests T3 it doesn't get done when it is sent there. I had this farce last Autumn when my endo contacted my GP to do the blood tests and the hospital lab only did TSH and T4. I ended up having to travel on public transport (I can't drive) for 2 hours each way to get to the hospital where my endo is just to have the bloods done. It costs me a fortune on trains and buses and takes all day, then I'm knackered for a couple of days afterwards. Perhaps you should get another endo or order your own private blood tests because your endo isn't doing much to help you.
Yes the doctor said there was no t3 option when requesting thyroid bloods but my Endo always does it, yes I might start getting my own, still doesn’t solve the problem how to higher my t3
You could tell your endo that your GP cannot request T3 blood tests and get him/her to do it at the hospital when you see him/her. Your endo might be wanting your GP to do it to keep his own patient list budget down because the fee that GP's get for their patients every year is supposed to pay for blood tests.
My Endo told me to lower it, then said see you in 6 months, it was me that went to the GP as I had put weight on and had no energy and Gastroparesis problems, Gp suggested thyroid test as I thought it was perimenopause symptoms
Oh dear! You could ring your endo and ask for an earlier appointment, after all you are on his patient list and he has a duty of care to you. It's worth a try and if he does the blood tests it will save you money too.
You could just self medicate and then go to him for the blood tests and results so that you know how you are managing your own condition. Patronise him and say you'll do has he asks and then do what you think is the best for you. Sometimes they like to keep us in limbo so they can play 'god' with us and feel superior!
Well I kind of was using him for that, but he was a bit snotty so that’s why I did what he said, but I thought all my problems were menopause but clearly they weren’t, yes I will be doing my own amounts from now on
I take it these were the results which prompted your endo to say reduce your dose
TSH-0.5 (0.5-6)
T4 -8 (12-22)
T3-4 (3-6.7)
and these are your new results after the reduction
TSH-32,
T4-5
Are the reference ranges the same for the second test?
First of all, did the endo say why you should reduce your dose? Was it because of the bottom of the range TSH at 0.5? If so, then did he not notice that your FT4 was below range and your FT3 barely scraped into range? Those results suggested an increase was necessary, not a reduction.
How long after the reduction of dose was it before the second test? The results after the reduction show that you are very hypothyroid and I'm wondering how long it took for your TSH to rise that much.
I'm not medically trained but it's possible that NDT isn't right for you if you were still tired on the dose that you were taking at the time of the first test. The ratio of T4:T3 is fixed at approx 4:1 and it's possible you might need a different ratio which only synthetic Levo plus T3 will give you.
Yes I normally ignore him but he shouted at me this time so I thought I better listen
And are you happy to be treated in this way? Is it right that a doctor should be shouting at you?
It's been said in many replies that this endo doesn't know what he's doing. You are wasting your time seeing him and he will only keep you ill. Ditch him. Do your own private tests and the collective knowledge from the experienced members of this forum can help you far more than this endo.
So your options seem to be get a new Endo from the Thyroid UK list who understands t3 or go alone. This Endo of yours who thinks you can lower meds then wait 6 months to see him is rubbish. Good luck.
Oh ok is the list still for NHS Endo? Yes apparently he’s a ‘good’ Endo when I spoke to a different Endo for private tests few years ago that’s the only reason I’m still with him 😕
Your TSH doesn't make you feel anything so if you feel well when your TSH is 0.5, you actually feel well when your free T4 and free T3 are wherever they are when your TSH is 0.5. Or do you mean you used to feel well when your TSH was 0.5 and now you don't?
So where does the 0.5 come into it? You need to know where your free T3 and free t4 were when your TSH was suppressed/you felt good and aim for those levels.
Yes I want my Tsh to be 0.5 all the time as it makes me feel better but also want T3 and T4 higher as I feel so much better when they’re in the top of the range
Your TSH doesn't make you feel anything. you wouldn't feel any different if it was 0 or 2 if your thyroid hormones were the same. You can't dose by TSH, it just doesn't work. TSH can vary by up to 75% just in the course of a day. So find the free t3 and free t4 levels when you felt best and forget the TSH. You cannot tell your pituitary gland what to do - it rarely listens.
Yes, yes the ranges are the same he didn’t like my TSH bring that suppressed, I didn’t lower it straight away but then thought I best lower it before I go back to him because he will know, it took 6 weeks for me to be in the bad state I’m in now, constantly yawning, no motivation at all, I just thought it was menopause.
I like thiroyd but think I will take more T3 for a while to get my levels in the top of the range.
I’m gonna get rid of him and get my own bloods done, I can’t go through this again
Yes, yes the r3anges are the same he didn’t like my TSH bring that suppressed
Your TSH was not suppressed at 0.5 (0.5-6) - it is at the lowest level of the range but still in range. Suppressed is <0.1. This endo really doesn't have a clue.
I like thiroyd but think I will take more T3 for a while to get my levels in the top of the range
That will only raise your FT3. You may be fine with a below range FT4, we are all different as to where we need our levels, it's trial and error.
I’m gonna get rid of him and get my own bloods done, I can’t go through this again
Yes when my T3 and T4 where at the top of the ranges and TSH was suppressed I felt great but since I went on NDT my T3 and T4 levels have steadily dropped and are now out of range completely
I felt good on levo as my levels were high then but I changed to NDT because I was getting a lot of other symptoms off Levo like a lot of joint pains, not as many symptoms of NDT just want my levels near the top again as had more energy
If you felt good on Levo but experienced other symptoms, I wonder if they were due to sub-optimal nutrient levels. Joint pains can indicate low Vit D, some deficiencies can cause symptoms similar to hypothyroidism. Did you ever test
Vit D
B12
Folate
Ferritin
It might be worth testing them and if they're not optimal then supplement to bring the levels up, you may then find that you could do well on Levo again.
NDT isn't right for everyone, it certainly never did anything for me and after eventually discoveringthat I had severe Vit D deficiency and other low levels, then addressing those, also discovering that my T4 to T3 conversion could be better, I am now optimally medicated on Levo plus a small amount of T3.
He kept saying I was over medicated, does the TSH go into minus figures or dies it not go past zero, if it doesn’t how could he say I was over medicated if my other levels were low?
He is an idiot. Face it. TSH goes down to zero so you have a long way to go. Thypd cancer patients are often told to keep TSH suppressed or 0. 0.5 is NOT suppressed, it's normal. 0.05 would be suppressed. Perhaps his eyesight is poor.
Depending on whether the test is done by my GP, Medichecks or Blue Horizon, my results come back as
<0.02
<0.005
or occasionally 0.007
<0.01
So I've never seen a minus figure just a < figure so the equipment obviously can't measure past that point.
if it doesn’t how could he say I was over medicated if my other levels were low?
Because he's going by the fact that the TSH is low and ignoring the actual hormone levels (FT4/FT3), this is the big problem that we all face, TSH is not an indicator of thyroid health, it's useful for diagnosis but after that, when we're on replacement hormone, it has no real purpose unless it goes high again, it's the FT4/FT3 that tell us what we need to know, unfortunately this important information tends to bypass the majority of doctors.
I have had low vitamin D once before, and now have low folate, I did get put on levo and T3 for a while but my T3 was still low, then I got put on T3 only then started going all clammy, feeling faint and sicky it went really high, so I decided to give NDT a go. How do you know if your conversion is good or not?
You can only tell if your conversion is good or bad by having free t3 and free T4 tests done at the same time when TSH is around 1 or less, and you are not taking any T3 or NDT, so you need to look at your last full bloods when on levo only
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