I had a partial thyroidectomy 10 plus yrs ago. I was put straight on to Levo. My remaining thyroid was never given a chance to see if it was sufficient. For years I have gradually put on weight and never felt that Levo was working. I've felt consistently fine and the same regardless of dose but my weight has been a problem. A couple of years ago I reduced the Levo dose and supplemented with t3. I was able to lose 2 stone but my husband was very worried about me sourcing my own meds so I stopped and the weight has gone back on. Convinced I have a conversion or rt3 issue I have stopped taking Levo 3 weeks ago. I was on 150mg which I reduced down gradually to nothing 3 weeks ago. I feel no different. I am hoping my own remaining thyroid will kick back in and help me control my weight more effectively than the synthetic hormone. I stress I feel no different either being on 150mcg than I do on nothing for 3 weeks. I have a very demanding full time job and I'm a mother to a 7 year old so I would have thought I would have felt more tired, ratty, absent minded, but nothing. I am going to get my bloods done soon but I think I will give it a little longer. Am I heading for a big crash? Has anyone else come off and done better with their own partial thyroid?
Opinions please. : I had a partial thyroidectomy... - Thyroid UK
Opinions please.
What were your most recent thyroid blood test results? If you really think you have a conversion issue or a problem with RT3 then you need these levels testing which can be done through private labs. If in the UK, Thyroid UK website list reliable labs where these tests can be carried out. You need TSH, FT4, FT3 and if you think you have a problem with RT3 then you can include it although, personally, I don't think this will add any useful information and will be an additional cost.
It takes 6-8 weeks for a change in thyroid medication dose to affect all your cells. It's not advisable to reduce thyroid meds by more than 25mcg every 6 weeks and at the same time you should retest bloods every 6 - 8 weeks and adjust thyroid meds according to the blood test results. It would take months for you to safely reduce your thyroid medication while repeating blood tests to see if your thyroid will take up the slack. As you have a young child and responsibilities, you really do not want to imbalance your thyroid hormone.
Did you reduce your thyroid meds by 25mcg every 6 to 8 weeks and then retest to find out what your TSH was and adjust accordingly until you got off the thyroid meds?
On 150mcg tsh was 0.05, free t4 was 24pmol, t3 was 5.5 (which is the highest it's ever been) thyroid antibodies 30. Still putting on weight week after week. I'm fattest ever been. That was March. I took my dose down to 100, then 75, then 50 every few weeks to now at zero for 3 weeks. I feel no different, haven't put any more weight on but haven't lost either.
I think you did this too fast if you didn't leave 6-8 weeks between each dose reduction. And if you didn't retest every 6 weeks then you run the risk of finding that a hormone deficiency will catch up with you a few weeks on from now. The effects of hormonal changes can show quite a few weeks later on from the biochemical results.
i'm going to have a test done over the next couple of weeks. got up for a run this morning so definitely still not feeling any worse for coming off. I am not 'gung - ho' about this though - I am watching for every potential indication of a problem. I accept I might have come off too quickly but I did leave a few weeks between each reduction. I have consistenly felt 'normal'. my weight hasn't increased since reducing my dose but it hasn't dropped either, despite watching what i eat. I will post my results and how I feel over the next few weeks.
If you post any results can you put the ranges as they are meaningless without as ranges differ from lab to lab as since you have changed medication can you also put what medication matches those results. When taking any for of T3 then the results are read differently.
Your headed for a BIG crash. Don't do this to yourself. It's no joke not medicating... your body and brain will suffer.
Your FT3 (that is what you meant?) is higher than mine on same dose. So I really doubt you have a high RT3. If you did your FT3 wouldnt be that high.
Hi Tile. I'm not sure this is true - is it not the case that I could have free t3 circulating without the receptors picking it up?
I have a partial thyroid which is why i'm trying this approach. I have consistently felt the same whatever my dose and currently taking nothing. I work full time, do regular exercise etc. If I sense that any of this starts to be problematic or my energy levels are dropping I have the levo at the ready.
I am going to have another full panel and keep monitoring. I will post to let you know how things are going.
Doc would only recognise rt3 testing by a london lab which I would have to physically travel to at my own expense as well as paying for the test.
Oh and then still wouldn't prescribe t3 anyway so what would be the point of getting the test?
Judging by the results you've added, your FT3 level was good and it sounds like your antibodies are low although you haven't added a range or stated which thyroid antibodies these are so it's impossible to be sure without the specific information. It appears that your conversion from T4 to T3 is ok, but again you haven't given ranges so hard to tell.
Have you had vitamin D, B12, folate and ferritin tested? If so, what were the results?
Weight gain could be other factors beside thyroid hormone, it might be the way your body is managing insulin for example. Have you had your HbA1c diabetes marker checked? You might find a low carb high (good) fats diet is needed. A little weight is protective against osteoporosis I believe so it's not all bad!
Hi yes I've had all these and diabetes checked. Diabetes was fine. Ferritin, D, B12, folate all low so I am supplementing.
I've been following low carb, high fat for a while. Nada. so I'm starting to cut back on the fat (which only really consists of full fat greek yog to zero fat and losing the nuts). Otherwise healthy diet & exercise.
A little extra weight might be good for osteo but not so much for self esteem in the bikini! 
Fat doesnt make you fat. As you drop your meds your T3 will plunge now that will make you gain weight and running could even make it worse. Complicated. Obese people even without thyroid issues have problems getting T3 into cells that's why if they diet they just lower T3 and slow their metabolism then gain weight back real quick. You could be resetting your metabolism now and slowing it down
.
It will if it puts your energy intake above your energy needs lol
We are always trashing our doctors re telling us to reduce our doses while we should be taking the dose which makes us feel well. I would say that advice applies even more to husbands!
This may be my path to proving to him that I need t3! however, if I can be drug free and able to rely on my remaining gland, that would be preferable. I know he is only worried because he cares. 
You should check out the hyperthyroid sites where they have to stop thyroid meds for tests it usually takes them over 3 weeks to feel the crash and then they can't wait to get back on. Plus you can possibly cause new growths if your TSH increases too much. That's playing with fire. The lower your TSH the less likely you will have regrowths. Thyroid cancer pts need a suppressed TSH to keep cancer from coming back. Think about it.
Seriously though, in answer to your question I believe the answer is No. You are not heading for a big crash, the nature of a thyroid melt down comes on very slowly, first you feel really tired, like very, VERY tired. If you detect this phase then start your T3 again. You are in a unique position with a partial thyroid, I would give it a chance to see if it is still working. It is possible for the missing half to grow back, I do not know how probable this phenomena is or if it is rare - I would give it a try. You can only tell if the thyroid is growing back by having a radioactive iodine scan, BUT listen to your body, at the first sign of great tiredness, go back on your meds.
And, of course, a full thyroid panel would help. Get one ASAP so that you know exactly where you stand. Do it privately because you might get stuck with a TSH and T4 doc and that will tell you very little (unless TSH is > ~4 mIU/L).
LAHs my thyroid has re-grown from having 9/10ths taken away. After an initial 25mcg for 6 weeks immediately after the sub-total thyroidectomy, I was then not given any. At 11 months after the op I had an adrenal crisis and was given one injection of Hydrocortisone. I was then given Valium and still no Levothyroxine. I stopped the Valium a couple of years later and remained very unwell for another 17 years, until I was finally put on Levothyroxine, slowly working up to 75 mcg. Was fairly good on this until changed to generic Levo in 2010. Have not been too good until recently changing to Grossman Cynomel T3 and Merck Euthyrox T4, three months ago. Have just begun to feel a bit better. The way to tell if a gland has re-grown again is to have an Ultrasound Scan. It is not that rare an occurrence evidently.
Regrowth of thyroid is not that rare - but the regrown thyroid might not be able to produce thyroid hormone. (Or, at least, not as much as would be expected from the volume of thyroid tissue present.)
Thank you for confirming that helvella . Needless to say, mine is not producing any hormones again.
Thank you for this. I wasn't aware thyroid could re-generate - I was just hoping what was left of mine would kick in and work effectively without the levo.
I am so sorry that your thyroidectomy after care was so mismanaged, this is a shameful state of affairs. Perhaps if they hadn't screwed up so badly you might now have enough of a working thyroid. Good luck to you, I hope the new growth starts working properly again some time and soon.
It was found to have re-grown at least 10 years ago, so don't think things will change now. I am a bit better place recently with change of makes of T4 and T3.
Thank you for this. The first few replies were a bit worrying. My gut is telling me I should give this a go. At the moment I feel exactly the same as when I was on 50mcg / 100mcg / 125 mcg up to 175mcg. Which is why i'm wondering if i have a receptor / RT3 issue rather than conversion (given my last ft3 result was in the upper quartile). I am monitoring myself closely - still holding down the stressful full time job, still being a Mammy, still getting up at 6.30am for a run and working out 2- 3 times a night through the week. If I find myself unable to do any of that I have the levo at the ready (which I will re-introduce carefully).
I'm about to book in again for another blood panel. I wanted to wait a while to allow my thyroid a chance to kick back in again before being tested. I shall post once I have the results, but no doubt that will be a couple of weeks by the time I get an apt.
It does seem that having a partial thyroid puts me in a bit of a different position - clearly if i had a total thyroidectomy I wouldn't be taking this approach.
Other than weight gain, what other symptoms have you experienced...?
What happens in our cells is poorly understood. Doctors and many of us will stand by the most basic of blood results, but they're only a fuzzy snapshot of what is happening at a certain time and not what's going on in the cells themselves. It's a bit like judging how much traffic there will be on local roads by looking at the state of one section of motorway.
I think your hunch about rt3 is a fair one to make. You may not have a conversion issue, but you may have (due to some genetic issue) a problem 'at the rock face' with thyroid hormone receptors. If you're on NDT or t3 then this pathway has proven (for you) to be a bit freer. You may find that there is inefficiency of the feed of t3 to your cells due to a lack of supportive compounds - this is why it's important to have all your vitamin levels and iron checked. I also recommend taking stomach / gut supporting supplements.
healthunlocked.com/thyroidu...
That is really helpful and re-assuring. I'm convinced I have a receptor problem. It is nothing more than a hunch based on the fact that regardless of the doseage of levo I take, I feel the same and my last T3 results (while on 150mcg) were good -in the upper quartile. Yet I still feel the same having taken a reduced dose since March and none for the past 3 weeks. No more tired (than a usual full time working mum) but my weight is the problem. I haven't taken t3 for over a year, which, whilst it was no miracle cure, seemed to allow me to slowly lose weight. I am monitoring myself daily, and if there is any sign of slowing down I will go back on the levo. But I was up at 6.30 for a run today so i'm obviously not out of energy yet.
I'm going to go and get another blood panel done to see where I am and I will post back.
Can I just also stress! I'm not advocating everyone just wean off levo like I have! As one of my posters (LAHs) pointed out - i'm am perhaps in a slightly different position having only had a partial thyroidectomy. I want to see if my remaining gland can stand alone. Clearly if I had a total thyroidectomy that would not be possible. This feels right for me (and I will happily accept if I am wrong) - my desire is to be healthy, in a way that is right for me and I would never suggest that is right for anyone else. I will let you all know how I get on.
As far as sourcing your own T3 meds goes, my husband was worried when I sourced my own and self medicated. But he stopped worrying when he saw the drastic improvement in my health and how careful I was with it.
How much T3 were you taking?
i can barely remember now as it was a good while ago. I think I built up to split 25mcg tablets into halves to take 12.5mcg x 3 doses spread throughout the day so 37.5mcg per day plus 25mcg levo in order to replace 150mcg levo. as I say, this wasn't a miracle weight loss cure, but it did seem to allow me to lose weight slightly more easily with careful diet and exercise.
I just lost the text reply to you so back again. I doubt your RT3 is too high because it would lower your FT3 somewhat. A SHBG test will show if your FT3 is getting into cells. You would need your estrogen levels for this test too. You could 've done those tests without going off of your thyroid meds. Obviously your remaining thyroid needs some help because you wouldnt need all those increases as your results would've been fine on much lower dose...you may just be running on adrenaline now as that's what people with low thyroid function without meds run on. I know years ago if I stopped my meds for a few days my TSH would increase a few points. But it will be interesting to see your labs. Too bad you didnt do a SHBG instead of lowering because that wouldve shown your cellular levels and if you needed T3 meds. You are stressing your thyroid now and putting on great strain on your body if you are in need of thyroid meds. Some people who took breaks had a hard time when they got back on the same dose. That's up to you. Feeling the same doesnt mean nothing has changed or that you are doing a positive thing.
i wasn't aware that SHBG would show if T3 is being picked up - no one has mentioned this previously. the increases i've had over the years have been at my request because i've struggled to lose weight. throughout i've never felt any change to what i feel right now. doesn't matter what dose i was on. I totally accept i could be running on adrenaline, but i still haven't felt any change whatsoever. i'm sure my tsh will be up, it would have to be to stimulate my own thyroid to work, but the question is how high and whether that is dangerous.
I will post my results when i have them.
Hello, i've just been for bloods this morning to see what effect coming off levo is having. it's coming up 5 weeks now that i've been off the meds - still no changes, still able to work, exercise, no noticeable brain fog etc. i'm fully expecting my tsh to be up, it is just how high. I'll post on Friday with results. It will just be t3/t4 at this stage rather than a full screen, i will no doubt be having a discussion with my doctor as i'm sure there will be a change, at which point I will ask for a full screen.
What were your FT3 FT4 results.(I'm curious)?
Tsh was up to 4. Something (which I would expect as it is having to work after being suppressed for so long). T3 and t4 were mid range. I don't have the figs to hand they are on my desk at work so I'll post tomorrow. Sorry I didn't post earlier. I leave my current job on Friday so v busy. Still feel fine by the way...
My 60 year old neighbor who can be healthier has a TSH of .9. This is what a person without thyroid disease has. Her mother in her 80s has a TSH of.1. So having a TSH of 4 is stressing your body and probably your brain even though you feel okay. It won't go down and right now it is in hypo range. Think about it.
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