Oh dear... I am so puzzled and almost don't dare to share it here... But need some insight... So...
I started back in March with 25 levo ( TSH was 3.65, low T4 and T3), then upped to 50, all went up a bit, but still low ( see my earlier posts) then on advice of this forum went for 75 levo, but developed knee ache ( no, it was not Teva) ... So decided to go for NDT. Read "Stop the thyroid madness" website, got good idea what to do... So dropped levo and started with NDT one grain, going by how I feel and increasing 0.5 a grain every two weeks ( as the site recommended)... Got up to 3 grains and holding there, waiting for the magic to happen... Measuring my body temperature and pulse. Temperature went up to 36.4 and I am not cold anymore, resting pulse 75-80... no more of these sinking episodes, when I felt I would not make to the end of the day...But still depressed, unmotivated... May be I am just used to being low and "lasy", I thought...
So I did a Medichecks... To my horror, that's what came out, ! Test done 12hours after taking 3 grains of NDT, fasting, but at 1pm ( not early morning, as there was not appointment earlier). Here are my results...
TSH less then 0.005
FT3 17.2 ( 3.1-6.8)
FT4 28.5 ( 12-22 )
RT3 20 ( 10-24)
TPO less then 9 ( under 34)
TGA 525 ( under 115)
other factors ( have not taken any supplements for a couple of weeks before test)
Folate 15.84 ( 3.89-19.45 )
B12 150 ( 37.5-187.5 )
Vit D 79.3 ( 50-75 )
Ferritin 58.5 ( 13-150 )
CRP 0.37 ( 0-5 )
Also did a female hormone test and
Sex Hormone Binding Globuline SHBG showed as over 200 ( 27-128 )
I guess it is related to a high T3/T4... right?
Now, I suppose I have to go down... Strange thing is that I do not feel any anxiety or over stimulation... I get itchy at night, which is a new thing... That's all... And really low mood... How did I miss the sweet spot? I guess I am so used to feeling crap, I do not remember what feel good feels like, so going by how I was feeling was a bit misleading...
Now, do I decrease half a grain every two weeks or so?
I feel a bit of an idiot, but any help/advice would be appreciated...
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Windsinger
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It definitely serves a purpose—finding that website led to me discovering that there was more to life than Levo. But some of the claims made there don’t always stand up, some of the advice is a little dubious etc.
Don’t beat yourself up though. It looks like you missed the bit (it definitely says it on STTM in a yellow highlighted box) about sticking at 2 grains for a while (once you got there raising half a grain each fortnight). Because it takes weeks for thyroid hormones to build up in your system (not just 2 weeks). You may well feel fine now but there’s a chance you won’t soon. But again, don’t panic. You’ve done the right thing by testing and finding out what’s going on.
Take yourself back down to 2 grains and stick there for a few weeks. At least 6. Then test again and see where you’re at. You can’t rush this, I’m afraid—it’ll backfire.
I might be wrong but I get the impression you’ve raised to 3 grains over a period of less than 3 months? (you were asking about suppliers of T3 3m ago). That was a bit fast!
Thank you for the reassurance... That's right...about 3 months... half a grain up every two weeks... So should I just go down to two or go down in increments of half a grain?
Agree with all the others, but on the other hand, you do have Hashi's, and this could just be a Hashi's 'hyper' swing, and nothing to do with your NDT.
If you were going to start medication this week I would have suggested that you start with Levo as it’s easier to understand and know what your body is doing. Plus it’s the only way to know for sure that you are converting properly as you will get a FT4 reading and a FT3 reading you can compare. When on any form of T3 then the T3 is the only accurate reading as FT4 May fall so you lose the comparison.
NDT works very well but not as easy to get it up and running but keep testing and posting your reading and help is here.
It is very easy to overmedicate but good advice always offered above. I went over medicated as I followed STTM and increses up to 2 grains in 0.5 intervals. I then increased in quarters but wasn’t feeling any better so decided I must have gone too high but I had planned my change around an upcoming Endo vidit incase things didn’t go right knowing they would test. I was right and the Endo dropped me back to 1.75 which I thought was too far but he was spot on. So I hadn’t recognised I had reached my sweet spot but I did realise I had gone passed it! It’s a learning curve but you will get there if you keep testing as you progress.
I did start with 25 levo, then 50, then 75... My T4 was over 50%, but T3 was 45% through the range, besides i developed knee ache ... so I decided to try NDT... Knee ache better, not gone, energy better, mood still low... And now this test... Going to try and lower the dose.. Will report. Thank you for all support and consideration.
I was originally started on NDT but I was stopped because of a strike in Canada where my medication comes from so I asked to switch to Levo and I was good on that as well. I think a lot depends of how with it your doctor is. I then got a doctor who hadn’t a clue so I went back to NDT myself as was more stable. I wish rough I had found this group much earlier as many doctors, mine included at that time, hadn’t a clue about dosing or even reading results accepting anything in range was giving wellness but it’s where in the range that is often so important.
Just to say I'm with Graves post RAI ablation and self medicating with NDT.
On my first and only blood test, after 10 hours after dosage my T3 came in over range, though I had no symptoms of over medication and " thought " I was doing very well with it all.
I'm only on a tiny dose, compared to yourself but the routine, and checking of symptoms is the same. I seem to be stable on only 1 + 1/2 grains/tablets, which surprised me, but through trial and error, this is right for me.
I wasn't so far over range, so am confidant if I had to have a blood test to appease a NHS doctor I'd fall into range, by waiting 24 hours, and then tick the NHS thyroid box system.
I'm on Thyroid S and understand the "S " is for slow release, and I then read that you leave 24 hours before testing much like you would do for levothyroxine.
I also think unless you have a doctor monitoring you does it matter ?
The guidelines were introduced, alongside the blood tests, to be used in conjunction with Levothyroxine, the new thyroid hormone replacement of the 1950's.
The guidelines were not intended to be used for patients on NDT - the " old fashioned " treatment that had been used successfully for over 100 years, before blood tests and guidelines, when the doctor listened to his patients, believed what they said, and tried to resolve the symptoms described to him.
That's what so confusing, some say go by how you feel, on the other hand it can't be right when blood is so out of wack... Anyway, thank you for sharing. Much appreciated...
I think my feelings are even stronger than others, that STTM protocol sounds like an absolutely break neck speed of increasing! I am perhaps super cautious, but I started out increasing by a quarter grain every 6 weeks! And it really often did take 6 weeks to feel even the tiniest bit settled on the new dose, so I felt I needed all that time.
My advice to you would be not to panic. You've done the right thing by holding on one dose and getting a blood test, and being temporarily over-medicated is part of the process of adjusting your dose and finding your own sweet spot.
I agree with others to go down to 2 grain, and see how you get on there. Probably hold for another 6 weeks and get a blood test, maybe longer than 6 weeks to give your body a rest and figure out what your symptoms are like. I think if I were you I wouldn't reduce all in one go, but would go at the same speed you've been so far, reduce by half a grain then wait two weeks again. This is the fastest I'd ever want to adjust, just to reduce the stress on your body as much as you can.
I'd also agree with Greygoose there's a possibility that a Hashis swing is going on, too. That is a whopping high freeT3 you've got, I'm taking more than 2.5x your dose and my freeT3 is not that high.
Thank you so much for taking time to explain and reassure... I have lowered down to 2.5 grains for the last three days... Now I am feeling symptoms of overmedicated... Spaced out, anxious, hot, cold, overwhelmed... So strange... Patience is not my strongest quality I have learnt my lesson now and will go slowly...
Unfortunately we need a lot of patience and it can be difficult.
I'm not too surprised it has caught up with you in a delayed way, and you may have to go through a few weeks of discomfort to get past it. I've also had the experience in the past of feeling overmedication symptoms at their worst once I reduce the dose! Overall I find almost anything can happen in the first 4 weeks or so on a new dose, it can feel overmedicated, undermedicated, strange new symptoms, etc, etc. Just hang in there and do whatever you need to do to cope while the bad symptoms are coming, and particularly rest a lot. It's a good time to snuggle under the duvet with the TV on
I took 2 grains of Armour Thyroid for a year before I had issues and my TSH always bottomed out which isn't unusual for t4/t3 meds but never did I have high FT4/FT3. Interesting.
May I ask, Batty1, what kind of issues have you had after a year on T4/T3 meds? I did not have nay issues so far, but now, I have lowered down to 2.5 grains for the last three days I feel really low... I guess it takes time for the body to go down... Scary though...
IMO, it is best to start out lower and increase every few weeks. Retest all the TH levels (FT4, FT3) at 3 to 4 weeks. Not everyone has to do it as is stated in STTM. I do not have a thyroid. I would not need that much DTE. My body uses 1.625 grains that I get from 2 strengths of DTE - 1 1/2 grains (split AM/PM) and 1/8 grain (AM) that I get by cutting a 1/2 grain into quarters to get 1/8 grain.
Wow. how do you cut it in 8? I struggle to cut it in two... With pill cutter... But a grain is a little round pill, not flat, so it wiggles under the cutter and halves come out uneven... I am using TR man NDT...Iteresting that without any thyroid you only need less then 2... Does it have something to do with how the body uptakes it? May be some are more efficient at doing it then others ?
Keep an eye on your blood pressure as well as everything else. The T3 in NDT can send your BP up which can contribute to some symptoms - also a pulse of 70 - 80 is pretty fast and can cause tiredness and exhaustion (bit like revving your car engine up for too long). Some of us are very sensitive to T3 and it's very easy to overshoot the sweet spot. I increased mine (Armour NDT) once by a tiny 1/4 grain - and boy did it send my BP sky high. I dropped back to my previous dose immediately. btw T3 has a very short half life of around 8 hours so don't panic, just take it easy till about 5:00pm and any bad reaction will have passed.
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