Need advice Dr told me to come off T3

Hi I went to see my Dr after routine blood test he said that it showed activity in my brain ...I told him I have been self medicating T3 since Nov and since then felt better lost over a stone ...he told me I've blew my thyroid results he can not comment on them as it was the first time he has saw me and told me to come off T3 for 3 months have another blood test and if needed maybe it's my levo that needs increasing ...fair enough ...BUT now I've put on 4lb in weight in 2 weeks after working so hard to lose it I can cry to see it going all back on ...don't know what to do ..carry on as Dr said or instead of 25 TA just take quarter or half a tablet ...or maybe be really strict on my eating and see what happens. ..so disheartened to see weight go back on feel so low about it now ....any advice would be great .Thank you for reading my post

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  • What were the results that got your doctor so upset? And what dose were you on at the time and what are you taking now? There will be someone here with an understanding of the issue but we need the info to help.

  • He didn't tell me my results said I had blown them using T3 ...I take 100 levo and was taking 25 T3 ...will phone and get my last results

  • Did you allow a 24 hour gap between your last dose of hormones and the test? Did you have the test as early as possible and fasting?

  • In the UK, the law says, they MUST give you your resutls if you requeest them, Go back and ask, it's your legal right to have them (with ranges)

  • Did you make sure to leave at least 12 hours after taking T3 to get your bloods done? T3 causes a spike that scares most (unknowledgeable) doctors. Do you have the results from the test?

    T4 alone doesn't work for a lot of people. At the same time it's important that you don't treat T3 as a weight loss pill, that's not what it is. If you're using T3 you should get to a good FT3 level (top quarter of the range for most) and then most likely the weight won't be rolling off, you'd still have to watch what you ate and lose weight the old fashion way. If the weight was rolling off you it's possible you over-did the T3 (it's possible but I'm just speculating, you might have also been perfectly dosed, it's important to know the results).

  • He didn't tell me my result just that it showed brain activity. ..I'm on 100 levo and took 25 T3 ...tried T3 to see if it made me feel any better plus see if it helped with weight loss ....thought about being strict with diet no sliding off and see if my weight goes up over next few weeks ...will phone for my last results

  • When you obtain the test results, make sure that you have the reference range as well (the numbers in brackets).

  • Sorry I think I confused your post with another post where the individual was just starting to self dose with a T3 tablet of 50mcg. (Which is why I thought you started at 25mcg)

  • In terms of being strict with your diet be careful. If you lower carbs too much that has a negative affect on thyroid hormone production and conversion and can cause leptin resistance. I don't know what your diet is and I don't want to assume, just giving you that warning.

    Of course if you're talking about cutting out snacks and sugars and cheeses then all the best to you! It's not easy, but I find those are the things that cause my weight gain 😓

  • Cheeses? Why should she cut out cheeses?

  • Haha, I don't think it's everyone, but for me it definitely causes weight gain and other problems.

  • Never given me any problems. And I used to eat a lot of cheese.

  • Of course we're all different. Im sure you're able to eat a lot of things that I can't 🙂. I personally have to be so careful what I eat or else I gain weight, I think everyone has their trigger

  • Well, the trigger is probably low T3. :)

  • Last FT3 result was at the very top of the range. Not everyone loses weight from T3. In fact I've gained weight since starting T3, made a post about it

  • If you're taking too much, that can make you put on weight, too. There are so many things that can make a person put on weight. It's just that we have to have optimal T3 - not to much and not too little - to have a chance of losing it.

  • You can check my last results in my posts if you want. I don't think it's too much. The thing is on levo alone I lost 50lbs.

  • I don't doubt you!

    Perhaps you should go back to levo only, then. Why did you add in the T3?

  • Because my FT4 kept going higher and higher even as they lowered my dose. I ended up with FT4 2 points over range I felt like crap, TSH wouldn't go down, the only thing that worked was an addition of 10mcg T3 to my levo. Brought my FT4 down and my FT3 went up, my appetite went up too (probably the culprit haha). I'm going to talk to my Endo about it next month.

  • I was cutting out sugar bread pasta potatoes and sweet things as also I'm type 2 diabetic

  • I found out that going gluten free helped lose weight (as well as lower antibodies) but I haven't cut back on fat all and cheese is one of my favourite foods :-)

  • So it seems like you cut out a lot of carbs. I don't claim to be knowledgable in terms of diets, and I know nothing of diabetes. I've just read that for thyroid you need some carbs so you might want to be careful there. But we're all so different and what works for one doesn't work for another.

    Are you completely of T3 now? So you went from 25mcg to none? I've read somewhere that low FT3 can cause leptin resistance which makes weight loss impossible, and when patients are given T3 it seems to help with the resistance. They mentioned it was common with hypothyroidism and diabetes. Let me see if I can find the article.

  • Article found: restartmed.com/leptin-resis...

    If you haven't had your leptin tested by your doctor maybe this would be a good idea as it could point to the cause.

  • Yes came straight off T3

  • All fruits and vegetables are carbs dropping bread and pasta which are man made aka processed foods isn't an issue if you eat plenty of vegetables and some fruit

  • I agree it's better to get your carbs from vegetables rather than processed wheats. Either way if you lower carbs too much it has a negative effect on thyroid hormone production and conversion. Carbs are your friend :)

  • Only results I have are T4 16.3 ( 9.0 - 26.0

    TSH 0.02 ( 0.27 - 0.20 )

    T3 wasn't tested

  • Ah ok, too bad there isn't FT3 result because that's what really matters when you're on T3 (and even in general). So I think I know what happened, your TSH went really low, which probably freaked your doctor out. TSH is made in the pituitary gland which is part of the brain (just at the base). So here's probably worried that your brain isn't signalling TSH production. It's often the case that TSH goes low when taking T3, mine is under range too but my Endo knows how to read my results and he doesn't freak out about it.

    The thing is without the FT3 result we can't say anything, maybe you needed a small reduction in T3, it's possible, but not a complete reduction.

  • Did think about halving the 25 tablet and not telling him and have blood test done in 3 months and see what it reads

  • I'd do that and get my own tests done through Blue Horizon or Medichecks. Your TSH will stay suppressed and if your GP thinks that's a problem you need to change GP.

  • I understand. If it was me I'd be uncomfortable doing that without some baseline FT3 result to know where I'm starting from. Have you considered getting private blood tests done? I know some other members on this forum do just that since their doctors won't check FT3.

  • So results were useless as you really need FT3 if you are taking T3. Your FT4 is about what one would expect (or slightly higher) for someone taking T3, as is TSH s0 what did the doctor get so riled up about? Yes, TSH is suppressed, but that's usual and pretty meaningless whne on meds. If you'd had thyroid cancer, they'd want your TSH suppressed.

  • I should hope you do have brain activity??? Sorry that comment bewildered me, as does the 'blew the blood results' because you took t3??? Or did he mean he had no idea how to interpret blood results when t3 was used? You really need your blood results with ranges then peeps can give opinions proper.

    Chin up

    Linda x

    Oh and don't starve you will just screw up your metabolism

  • I'm assuming he didn't test FT3 and had no idea how to interpret the results. By brain activity he's referring to TSH (I think?) it's possible that with this dose of T3, TSH has become suppressed or at least below the range and freaked the doctor out.

  • I'll try to get my results

  • He said my blood test is screwed up because I took T3 and not a true reading of my results .......think I'll do the 3 months as he said and then see what happens

  • Of course, you know that's rubbish. Taking T3 doesn't screw anything up. It just means he can't use his precious TSH to dose by. But, the results are still true readings, they are saying what is in your blood - how can a blood test tell you anything else? He's just trying to confuse you, blind you with science, and make it look as if he knows more than he really does.

  • fibrolinda lorrainewilson64 The 'brain activity' comment bewildered me too....my sentiments exactly, I'd be more worried if there wasn't brain activity? Sounds like utter BS!I think he should have justified that comment at least, or was he just trying to scare into submission...Dr knows best, get you off T3, then they won't have to reissue it....under current guidelines?!!!

    What next? Maybe it is the fact that we are self medicating, getting well and getting some sort of brain activity back that he doesn't like!

    And Lorraine, you need FT3 bloods if you are taking T3. Once your medication is sorted you will, likely, find it easier to lose any weight.

  • I don't understand how a standard thyroid blood test can show what's going on in your brain!? It sounds like your GP's mind has been 'blown' by you self medicating and getting yourself well ;-)

  • I think he just didn't like me doing things myself even though I told him how well I'm feeling

  • lorrainewilson64 They don't like self mediators, it shows up their failings!

  • HI

    I was on T3 and T4 but stopped the T3 after having a heart rhythm disorder. In my experience it took a few months for my body to fully adapt. I was okay on just T4 but not at my full peak. I saw a sympathetic endocrinologist privately and have now reintroduced T3. However this usually involves reducing the T4 as T3 is 3-4 times 'stronger' than T4. In my case I reintroduced 10mg of T3 and reduced T4 by about 30mg. The Dr wants a test in one month. My GP asked for a free T3 blood test but the lab did not do it, so I got one done privately through blue horizon.

    Taking too much thyroid hormone/s can harmful so. In my case it is possible I was over dosing and this contributed to my heart problem.

    If possible I would work with your doctor if they show some understanding of T3 as a treatment. It may be that T3 is good for you but you need to reduce the T4. Also I think that introducing 25mg straight away may be too much and you need a lower dose, at least to start.

  • I really don't think your doctor knows what he's talking about. So, in order to give us a clue, you really must get a copy of your results - it's very unlikely your doctor will just tell you. It is your legal right to have a copy under the 1998 Data Protection Act. Post the results on here, and let us have a look at them. But don't forget the ranges! They are most important. :)

    I fail to see how a blood test shows 'brain activity' - but if there were no brain activity, you'd be dead! lol And I very much doubt your doctor does, either. And, in any case, why is that a bad thing?

    The thing with lab results when you're taking T3, is that the TSH is likely to be suppressed - at in any case, very low - and your FT4 very low, also. The only important number is the FT3. And, if he failed to test that, then, yes, your results would look very strange. But, that doesn't mean you've 'blown' them! lol

    But, he is over-reacting a bit - flexing his medical muscles, I suppose - by telling you to come off it for three months and get tested again. For a start, it will all be out of your system in a week! So, three months is exaggerating. (I think he just wants you to suffer a bit, for having been a naughty girl!). And, besides, he could just look at your results before you started taking T3, to see what your results are like without T3.

    If it were me, I would go back and see him with the two propositions I made above, and tell him that he can do what he likes - test your now, or look at your old results - but you intend to go back onto your T3 the next morning, come hell or high water, because you have suffered enough! It's time to stand up to him, and not let him get away with this nonsense! It's not him who has to suffer the consequences of his whims. :)

  • I agree thank you for your advice .Have made another appointment

  • You're welcome. :) Good luck.

  • You and I sing from the same hymn sheet! Well said and great advice xx

  • Thank you. :)

  • Get copies of your results before you see the doctor again and ask for feedback from us. You need to know what you want to say before the appointment, otherwise he's just going to repeat the nonsense again, and probably get annoyed with you for questioning his nonsense.

    Based on what you've reported, your doctor opened his mouth and lots of rubbish fell out. He clearly had no clue what he was talking about. I agree with greygoose . He's punishing you.

  • humanbean lorrainewilson64 I think your Dr should be reported as obviously talking a load of BS. If we keep accepting this sort of rubbish from GP's without acting we will only keep getting more. We need to let them know that we are not standing for it anymore!

    I think I'd be inclined to write/email the GP ask him to justify his comments re brain activity and reasons for not testing T3 when taking it and to justify his reasons for saying stop t3 - would be interesting to see what he is prepared to put in writing? Scary how many 'twits' are out there, disguised as Dr's!!

  • UrsaP

    I don't think it would make any difference, complaining about the doctor, to be honest. They all cover each other's backs, and they all have their nonsense phrases they use for fobbing people off under different circumstances.

    And they have all been taught that TSH is all that is important, and that too low a level is going to make people have heart attacks and osteoporosis, and that T3 is dangerous and addictive. And so if they are regurgitating what they've been taught about TSH, then other doctors will support them too.

    Sorry, I know I'm being defeatist. I see doctors as being obstacles to good health that I have to try and find a way around. And I've achieved more for my own health by doing that than I have by attempting to persuade them I'm right.

  • humanbean I know they have beaten us all down with the rubbish they spout over the years. And it may be that we will never get through to them. I just don't want to go to my grave saying I didn't try. And For my son's sake.

    I've proved to my GP's that T3 works - they just refuse to see... the only one who did see retired...very inconsiderate of him!!

    I just feel that, with the current prescription/T3 situation, a lot of people have been pushed just that bit too far and are now ready to start 'fighting back'. It is an opportunity for us all to be heard...and if we stop just accepting Dr's ridiculous comments and start challenging them, they may realise that they are not dealing with demented imbeciles who can't possibly understand anything about their own health.

    I know many aren't well enough to try but perhaps those of us who are 'getting there' can at least try.

    On another note, having seen your earlier response to 'lorrainewilson64'. I wonder if you might be able to offer an explanation as to why my THS is high, when T4 low (suppressed as on t3 only so understand that) T3 is 4.5 range 3.5 - 6.5. Clutter suggested increasing T3, so will do that. But can't find any 'reason' why TSH would be high - not on any 'grid' I can find. Letter from GP to call him, want to make sure I understand it myself first.

    Your thoughts would be appreciated.

  • Only result I have are T4 16.3 ( 9.0 - 26.0 ) AND TSH 0.02 ( 0.27 - 0.20 ) ........my T3 wasn't tested

  • What thyroid hormones were you taking when you got those results?

  • Levo 100 and T3 25 ......also take Vit D ....B but stopped them 2hrs b4 blood test

  • Mean 24 hrs before

  • Okay, the 100mcg Levo and 25mcg T3 you were taking together are roughly equivalent to a dose of 175mcg Levo alone. T3 is roughly 3 times as potent as levo for the same weight. So you have increased your dose quite substantially.

    Your Free T4 was fine. It was below mid-range, but not by a lot, and when people are taking the active hormone directly they don't need as much T4 as they would on Levo alone.

    Your TSH is irrelevant when taking T3, but I doubt your doctor would agree. It is more than likely to be low because your body knows it doesn't need to produce much (or any) thyroid hormones of its own.

    The big thing of course is whether or not you have a good levels of Free T3, and yours hasn't been measured.

    You could pay for your own Free T3 measurement with a finger-prick test :

    Medichecks :

    medichecks.com/thyroid-func...

    Blue Horizon :

    bluehorizonmedicals.co.uk/e...

    Currently, medichecks is cheaper than Blue Horizon but both companies have regular special offers and so that could change at any time. You should register with both sites to receive emails of what their latest offers are.

    If you do the above test remember that Free T3 should be stopped about 12 hours before the blood draw is done. Levo should be stopped about 24 hours before the blood draw.

    Also, always do testing first thing in the morning, between roughly 7am and 9am (definitely no later). Fast overnight, except for water - you definitely don't want to be dehydrated.

  • Thanks for the advice .will take a look

  • The blood tests were invented for levothyroxine only. Therefore, if we add any other hormones into the mix the results will not be true.

    The blood tests he can do, if he was interested, but have been instructed recently not to prescribe T3 at all, no matter if the patient has been taking it for years.

    I do not understand his "he said that it showed activity in my brain". Can you explain this? After all T3 is the only hormone required in our brain and every single receptor cell in our body. T4 is inactive and has to convert but we may not be able to convert levo adequately especially if dose is too low. I believe the following is the 'perfect' way to help patients recover their health and many on the forum have done so. The doctor was an Adviser to Thyroiduk before his untimely death.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • You don't need an appointment with an abusive doctor for the test results that are your entitlement. Just ask the receptionist for a copy.

    What you have to remember, and your doctor probably does not know, is that T3 tends to suppress TSH. Of course TSH isn't really relevant, and neither is T4 since T3 is the active hormone.

  • Tell Dr to sit on it. What on earth does "activity in my brain" mean? I think that is called "thinking". T3 is good for the brain; it uses more than the rest of the body. I'd ask louise.roberts@thyroiduk.org.uk for the list of doctors and endos with a clue and see if there is one in your area you could see. What were you blood tests results? The doctor is taking it out on you because they are not trained to interpret results when someone is on T3 and you had the gall to self-medicate. I don't think you want to use this doctor.

  • Grey Goose is sooooo right! :-)

  • Personally, if I had a doctor like him, I would feel totally free to ignore him and carry on with what was making you feel well. As many here have experienced before you, today's doctors know very little about the thyroid (in 5 years medical studies, it occupies approximately 1 hour's lecture) and they are not inclined to find out any more about it... and that includes the endocrinologists! On this forum, you have access to many 'experts' who have educated themselves about a condition they have to live with for the rest of their lives and who will help and support you. Blood tests can be done privately so you will never be subject to the ridiculous parameters set by one lab or another (many won't even test FT4 if the TSH is in range, and most won't even bother with FT3 testing because it's too 'expensive') They will do all the tests you ask, and pay for and you will get a true reading of how your treatment is working. Good luck and welcome to the world of self-determination!

  • Thank you for your advice. I agree some doctors know nothing about how to treat us and how we feel .....in the end it's us that have the symptoms we know our bodies and what makes us feel more human and better

  • May I suggest getting a private Thyroid + 12 test done? I was in a similar situation as my FT4 was high 'above range' as was my TSH, low 'in range' FT3, high 'In range' RT3. These tests will give you a more conclusive diagnosis of what's going on and you can work out your T4 to T3 convertion ratio too (there is a lady called Seaside Susie on here who is VERY clued up with test result values) My NHS bloods were ridiculous apparently all in range and there was nothing wrong with me (according to my so called 'specialist endocrinologist) even though I felt like death everyday

    You can submit them to your GP/endo for their evaluation too .. These tests are fully medically accredited, a Dr or endo would be hanging themselves if they were to dismiss the results, they don't have to act on them but they can't dismiss them! You will then be in a much better position (along with a little bit of research of your own, also the Blue Horizons Drs will give you some conclusions as to why things may be as they are) to debate your situation.

    I have been on T3 for around 5 weeks now, still tweaking my dosage but I'm feeling better .. If you were feeling better on T3 (weight loss is a bonus NOT a reason to take T3) I would challenge your Dr as to why he says to come off T3, ask him/her to explain his reasons (Do some research of your own first .. Puts the right willys up them when they can't bump you off with rubbish or layman terms). Print out your test results from him, have them in your hand and challenge him for explanations for his diagnosis of them, then if like most Drs he says 'I'm no specialist but ...' then challenge that too by saying 'Well if your no specialist how do yo know my blood test is blown up and I should come off T3? I DEMAND to be referred to an endo to have your 'Conclusions' explained to me BY A SPECIALIST who can explain the results and also can compare the more in-depth tests done by BH' .. DO NOT take no for an answer. If he doesn't give you your results he is in violation of his duties .. Be strong with them, don't let them bump you off as they do with 1000's of others ... And if you feel better on the T3 just keep on it! Most of the time GP's and Endo's only want you off T3 so that they can ram T4 down your neck to keep the NHS happy with them and Mercury Pharmas pocket lined .. My endo actually stated to me that T3 medication is dangerous and can cause long term problems, they are not interested in how 'You feel' your only making it up if the NHS blood tests are only within ranges by 0.5 from bottom to top!! Get the private test done, stay on the T3 if it makes you feel better ... BUT ALSO follow the advice of the others about what time you have your test done, it is important as the results can spike ... Good luck

  • Thank you for your advice lots of things there for me to think about and has really helped . Am thinking of doing my own blood test and will get more advice once it's done .Have noted down when's and how's best to do one .Thank you again x

  • Quasarlis lorrainewilson64 Response to T3 being really dangerous...ask them how - they will probably say can cause heart problems and osteoporosis. Ask them what medication does not have side effects. Tell them you are well able to look out for the side effects. (I've been on T3 only for over 7 years, no sign of any side effects - unless you call getting a life a side affect)

    Unlike the horrendous side affects I had on T4.

    ....Oh...yes... and the side effects that stress can now cause, because 30 years of undiagnosed/mistreatment not only destroyed my thyroid, but also left my adrenals affected.

    Incompetent GP's......

  • 'Response to T3 being really dangerous...ask them how - they will probably say can cause heart problems and osteoporosis.' Ask them for the proof for those claims... they won't be able to provide any!

  • I know he won't! He's a Lieing 'Specislist' who only cares about his obscene NHS salary and NOT his patients ... Should have knocked him on his butt when I had the chance!!!!

  • Just noticed you experienced horrendous side effects on T4, which I do as well and my doc just looks at me blankly! !!

    Can I ask what side effects you had and was that on Levothyroxine or Armour?

    Have been on Armour now for a month still not good, beginning to wonder if my body hates T4 in every form.

  • janeold25 Hi there, can you clarify who your question is aimed at please?

  • Hi UrsaP, sorry question is for you.

  • janeold25 Hi. Side effects I had, CFS, Fibromyalgia, migraine. Those are the one's that noticeably disappeared within a few days, every time I stopped T4. Kept trying to take it. But was t4 toxic, not converting. Due to long term lack of diagnosis and ineffective treatment - damaged done to thyroid/system.

    I was on Leveothyroxine for about 20yrs. It never did me any good.

  • UrsaP Hi, really interesting, I have been on T4 for 13 years now, initially it worked but I have progressively become worse and worse, nearly house bound now. I get much worse 2 hours after taking T4 (Levo). Feel like I have CFS, dizzy, balance problems, so weak. Have long had suspicions I am reacting badly to T4.

    I am not converting properly!!!

    Do you still take T3? Where are you buying it from (private message appreciated).

    Did you damage your Thyroid by not taking T4 or you think T4 has damaged your Thyroid?

    How long did you stay off T4 before starting T3?

    Sounds like the quality of your life has improved which is positive.

    Thanks for your comments.

  • janeold25 Hi again, I'm actually being prescribed T3 still (keeping fingers well and truly crossed) Have been on T3 only for 7years. Is has made a huge difference.

    As far as damage to thyroid goes, who know'a. I suspect that there was something not right growing up - but wasn't till I was 19 that goitres appeared and was referred to a specialist. Who did bloods on/off over 2 years and then dismissed me - lack of iodine changing from a girl into a woman = apparently! GP at time said specialist couldn't make his mind up! Took another 10 years before bloods showed positive for them to give me T4. I believe there were antibodies at some point, not sure what or which, tho' these seem to disappear by following test. (No idea what was tested for when) Wonder how much damaged was done, in those 10/12years before diagnosis, or in the 20 years following where T4 was doing more harm than good! Anyone's guess.

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