apparently I'm going to die of heart problems

yes thats according to a doctor who 'specialises' in hormones....she told me that i will be racing towards fatal heart issues if i up my dosage and what annoyed me more than anything was despite giving her the hormone levels to read, she has told me i have to be re tested 4 hours after taking the medicine...??? she said that Thyroid needs to be measured this way too...

i cannot tell you how much I've jumped through hoops, thrown my toys out of the pram, begged sobbed and tried to get a grip on this whole issue....

my last lot of tests are posted in another thread, I've been advised by people here to do lots to good things which i have and still my tests are not right so I've been advised to up dosage or go t3 alone.....will my doctor agree? will i be at his mercy should i try and get t3 only medication from him? will he prescribe it? can i take it with NDT or should i just stick to NDT?....im at a loss now I'm seriously at a loss as to what to do ..doesnt help when doctors patronise you and tell you you are playing with fire....i dont trust them so what do i do now?

16 Replies

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  • Ooh, I am burning up on your behalf. Maybe doc could provide documents to support the theory that a four hour interval is appropriate between dosing and testing - ?? Yk, just to clarify.

    I have always been told by doctors 'it doesn't matter' when you take your levo (t3 is a different matter) relative to when your blood is drawn.

  • healthunlocked.com/thyroidu...

    here are my latest test results...

    yes i take it way from other stuff, yes i take vitamin c test i take ACV yes i am gluten free, yes my vitamin D and B12 is up and although dropping my iron is mid range now yes I've had issues with absorption been through all the testing at hospitals I'm not a celiac. they cant do any more for me...how do i absorb stuff better I'm stringent with my gluten free diet for over a year now!! i take a good probiotic too....WHAT ELSE CAN I DO???

    I've got a telephone appointment with my doctor in a while....should i ask for T3 only medication?

    PLEASE HELP!!!

  • I'm ****ed, in that case!

    I self-medicate, so I'm not at the mercy of a doctor's prescriptions. My last endo's response following blood tests proved how little he knows about NDT & T3, in relation to my condition, or otherwise.

    I added T3 to my NDT with no negative side effects, last year, then took T3 alone. I've found it harder adding NDT to T3, but feel ok with just T3, & find that easier to adjust.

    It seems very much the case for me, that the fabulous admins & knowledgeable folks on here are decidedly more helpful than any of the doctors & endocrinologists I've seen, having gone undiagnosed for 40 years!

  • Bioluminence,

    Pity you didn't ask her what evidence there is for that statement. The Rotterdam Study finds no association between TSH and atrial fibrillation press.endocrine.org/doi/abs...

    Your FT4 is low (normal on NDT) and FT3 less than halfway through range so you are nowhere near over medicated.

    T3 in NDT can peak in the serum for up to six hours. She should be measuring the normal circulating levels not the peak. I would leave 12 hours between last dose and blood draw.

    Most GPs won't alter an endo's treatment plan without the endo's approval. I would try increasing NDT dose to raise FT3.

  • Change your doctor.

  • 'PLEASE HELP!!!'

    The only thing I can suggest is PLEASE HELP YOURSELF!!! :)

    Your doctor clearly isn't helping. Reading through many posts here, your doctor is not alone in being unable to help. You have to take the leap and take your health into your own hands and whilst I have no doubt that the medical profession will feel pleased with your reticence to go against them,you have a legion of people here who will happily help you all you wish. But saying you're waiting for the doctor, should you ask for T3...ever decreasing circles spring to mind.

    In shoes similar to your own, I did my own research, here there and everywhere. I tried NDT and T3, now on a combo and relative to how I felt on what for me was sh*tty levo, which made me feel 10 x worse, I'm much improved and at least not getting worse - just 4 stones heavier waiting for the levo to work and ignoring my body and my own self.

    Don't waste time waiting for others to make you well - reading the forum stories of others should lead you to the belief that this is a time to strap your boots on and get your groove on, Bio.

    Sometimes you just have to say to yourself - 'bring it' And mean it. Good luck ;)

  • i AM helping myself...i do have to keep the GP on board tho right?? i am self medicating and i get lots of suggestions....i did up my dose to 5 grains but felt a bit hyper...heart racing etc...so have knocked it back to 4 grains now..give it a bit longer and test again in a few weeks....i seriously do not have an iotas worth of trust in the bloody GPs...even the private ones...bunch of guessers and scaremongers...ive had suggestions like taking t3 only etc...but i cant do that without a prescription and the only medication i can get myself is the NDT from thailand...so I'm going with that...i still dont quite get the results thing and I've been taking advice from people here so far....so when i get other suggestions like taking t3 only or a combination I'm not sure what they mean...and I'm not sure how to go about it...

    my doctor has agreed to the hormone blood tests so that i can keep getting my bioidentiacal HRT which is great as that has helped A LOT!

    if only i could shift this terrible low mood....its like a deep dark pit most days...but i will not take anti depressants ever again....they parked me up on them for years and it took me nearly 2 years to get off them so I'm not going back there...i know that initially the increase in vitamin D and iron made a MASSIVE difference to mood!!!...but now I'm fairly ok with all f that I'm at a loss.....

    i guess i just have to put up with it eh :-)

    thanks again for listening...

  • You only have to keep the GP on board if you rely on the GP for thyroid hormones and/or testing.

    I told my GP in 2013 after a disastrous few months on levo that I would treat my own thyroid in future and pay for my own testing. She has no clue what I treat myself with - she is happy to remain in ignorance - and my thyroid is never mentioned.

    From my point of view it is great. It reduces my stress enormously. The only fly in the ointment for me is that I don't get free prescriptions.

  • i think to be honest they are good for the old blood tests...especailly if i have a private consultation....plus the free prescriptions...but i dont get any lolol...occasionally i will need something for a minor ailment....and although i get my thyroid tests done privately i can get my menopause screens and other screens done there...so thats why i guess I'm trying to keep them on board....hes asked for a F2F appt the week after my blood tests but nothing has been booked...;-)

  • Oh - another point. GPs can't make you do anything unless you have been sectioned. They can't give you blood tests for example, unless you agree. They can't examine you or touch you unless you agree.

    If you don't follow their instructions regarding treatment they can refuse to treat you. But if you are willing to self-medicate your thyroid then it shouldn't be an issue.

    If you then went on to break your leg they couldn't refuse to treat you for that just because you are treating your own thyroid. (This is my understanding anyway.)

  • You mentioned that your D and B12 are up but are they at optimal levels? I aske because doctors often tell you that results are fine but often it is only in range which can be misleading also advisable to get folate and ferritin checked as well. My folate was actually under range and even on standard medication it had only just scraped over the lower level. Took me nearly a year of medication to get it where it was optimal.

  • yes I've checked my vitamin D is around the 80 mark, my b12 is 928 ish ( well over) but I'm taking a lot of that and injecting! i have just got some folate so although that was mid range I'm supplementing again and i went gluten free to aid with absorption issues....ive had a complete overhaul since last year when i started to realise that nobody but me was going to help me....( along with some great people here)

  • B12 looking good. I got my Vit D up to 80 but then read that 100-125 best for thyroid so keep slipping in a bit extra when I can

  • This is the sorry state of affairs for so many people and I suspect that the majority of them actually believe their doctors and obey every word they say. It seems to me that those who do this would not have the courage to take matters into their own hands and seek out forums run by the people who can actually help them to recover.

    It took me 8 years to find the truth and realise that my doctor could not help me simply because he was not allowed to. As soon as I realised that I started attacking (not physically!) those who were giving him his orders, in this case the local CCG was to blame who had received their orders to blacklist NDT from the local APC. I also involved my MP.

    At this my doctor no longer offers any advice and has taken to avoid me by getting his nurse to organise the required annual blood test. I doubt this has anything to do with the fact that I am bigger than he is!

    Advice I can give therefore is to be strong and demand to know the reason for him believing what he does. What trials have taken place, what were the results. Why does he think that taking medicine that deliberately excludes many of the products that a normal thyroid gland produces can be as good as NDT which DOES include them, etc

  • So to clarify then....should i stay on 4 grains and just see how it goes over time?

    :-)

  • Just re read the thread again and reminded that you have been up to five and could tell you were hyper so if you have no hyper symptoms now I would be tempted to leave it till your next bloods or if you still unsure then just drop down a little, maybe quarter. To be honest I've found that last little bit the most difficult as symptoms for me a little under and a little over have seemed the same and in those situations I've always tried dropping down first as that way if you feel worse you should either stay the same or try a small increase but if you go up first and still feel bad you haven't proved anything.

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