worst day of my life.. to be told i am normal!

i hope you dont mind me letting off some steam... i am devastated at my endos conversation with me today over the phone.. the day i dreaded has arrived.. i feel sick to the core...

Yes , you are normal now so you must go back to your doctor, i am discharging you.. it must be something else!

So i asked why ALL my original symptoms were still with me.. hair loss.. weight gain. fatigue.. sore eyes, etc and he talked over the top of me and said well, the figures say your in range and fine now... so like i say.. go back to your doctor for other tests!!

omg i feel i have had the lid nailed onto my coffin... cant explain the feeling of desperation and loneliness... i am now alone!!!

The only ray of light he gave me, was the name of a female endo that prescribes ndt, so i have to go to my doc for a referal.. hmmm.. me n my doc dont hit it off these days.. but needs must.

thanks for listening... i know i am not alone... but i feel scared now for the first time on this journey!!

42 Replies

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  • Oh dear that's terribly disappointing for you, grumpyoldbean. :( All I can say is, at least you have another direction in which to go, I hope it will bear fruit! What is the matter with the medical profession??

  • Jadzhia well, i think they need to stop relying on the 2 basic tests... and also to look up from their computer screens.. i am not a figure, or a number... and i know my own body!!!!

    i am 44, and as a kid, our doctors didnt have computers.. they would look at you, talk to you, and examine you.. now they do bloods and the results are gospel!!! i am so upset... i asked about testing RT3 and its like i never spoke.. didnt even acknowledge my question!

    onwards and upwards.. thanks for your reply xx

  • They do indeed need to stop looking at just the numbers. I saw my GP yesterday and she was quite fixated with them. Worse still, even though I said I felt awful and she believed that, she had nothing to say to help any of it. Was more like I have to wait till the numbers go over-range. Sheesh. So I really hope my next blood test will do exactly that. I sort of hope karma catches up with those doctors then they'll really know how bad it is for the rest of us.

  • Jadzhia yesss i know wot you mean..they are heartless.. i find they are bringing out the worst in me.. i hope u dont go over .. i did and i was so ill i had to stop all meds.. i didnt get hyper symptoms.. still got hypo.. mayb too much RT3 frm too much T4.. which i know can interfere with the uptake of T3..my hair is falling like crazy now... and i am getting stressed, whereas i was always a calm person.. i am so frustrated..x

  • I think I'm in a flare-up right now. I am so hot! From the inside, not the outside if you know what I mean. And cannot sleep, even when tired, heart pounds, etc. Doc didn't want to start me on Levo as she said she didn't want to push me further hyper, I guess she has a point, but then I am wary also of the 'let's wait and see' whilst meanwhile one is feeling unwell. I really think they either don't know, can't be bothered to investigate, or err on the side of caution because they don't want to be accused of getting it wrong.

    grumpyoldbean - you know you're unwell, any doctor telling you otherwise has no idea. By saying it 'must be something else' just shows them up as being incompetent. All those years to study medicine and that's the best they can do??

  • Jadzhia aww me too.. horrid isnt it/? i wake up about 4.. so hot on the inside... heart pounding... heavy breathing.. desperate for sleep.. bit like a sweaty hangover lol.. i am stressed so prob having a flare too... erm.. have they not put u on medication?? its disgraceful...

    soo wrong to treat a fellow human being so cruelly.. i feel almost bullied and abused.. i cant put into words how sad i feel.. my family doctor is impatient with me now.. and the receptionists are so obstructive and rude.. i will guarantee i have hypochondriac written on my notes..

    we dont go to the docs for a day out..like u say, we know when we are ill... i have better things to do than bang my head against a brick wall all day x

  • Nope not yet. My numbers are just below the top of the range, so my doc won't do it till then. I do that as well, wake in the wee small hours, heart thumping. I end up getting up simply because it doesn't feel quite as bad when sitting/moving about.

    You can get hold of your medical notes but perhaps not a good idea as that might make you even more angry!

  • Jadzhia well i get my bloods printed out, he doesnt even ask now if i want them.. he just does it lol... and i dont think you get a full copy of ur history .. receptionist said its not that simple..never is

    so your doctor ignores you too?? why dont they bypass us patients and just run off into the sunset with their lab results and computers? lol x

  • She's been good re my chronic back pain, and she did take the fact my mother had Grave's seriously, so she said yes I am definitely at risk and because I have antibodies raised that I will develop thyroid disease (erm I think I have it already thank you!). She wanted another blood test as that lot I got is now 6 weeks' old, so pinning my hopes on that!

    LOL I can imagine them eloping with their ranges and computers, where no-one challenges them and they can continue to feel superior!

  • I don't suppose he has the slightest idea what rT3 is! And he wouldn't want to admit that, would he! So, that's why he ignored your question.

  • Oh how frustrating for you :( In range as I am sure you know, doesn't mean optimal. Good luck with the other referral.

  • Musicmonkey its almost like i am being called a liar or a hypochondriac... i have all the classic symptoms, which have never gone away from day 1 of being diagnosed.. i am waiting to have endoscope both ways .. my iron is low but they havent given any indication of why ... so frustrating.. x

  • I know the feeling grumpyoldbean My Endo had told me I was over-medicated and that I should never have been diagnosed in the first place - despite at that time having a T4 below the range!

  • Musicmonkey unbelievable arent they? their training must be extremely basic.. i know if i was an endo i would make sure i mastered my art.. do they ENJOY being made to look stooooooopid??

  • Heh well my iron is also low, doc said I 'need to eat more leafy green veg' which to me sounds like a drop in the ocean. I've no objection to doing that, but once you are low in iron you need to give more than a trickle via leafy greens. You need a supplement! I hope you find out what's causing it.

  • Jadzhia apparently some dark green veg are not good for thyroid.. look it up.. and i have ordered some iron off the internet, recommended frm ppl on here... 210mg ff twice a day.. my figures are on the floor... figures i DO take notice of... low ferritin is a factor in hair loss. mine is 47 in a range of (10-290) i am having my stomach looked at.. mayb something wrong that i am not absorbing.. but i did my own research with great advice off here.. my doctors said all is normal.. they dont havea clue xx

  • Yes I looked up the ones the doc mentioned: spinach (I got some reluctantly and I still hate it!), kale (looks a bit nicer but that one could be problematic apparently - contains a goitrogen?), cabbage (I do love that) and broccoli (like it best if the tenderstem type). More on it here actually:

    chriskresser.com/do-raw-veg...

  • Jadzhia its a minefield isnt it?? i am exhausted just reading about it all... xx

  • Me too, and right now my brain refuses to memorise most of it, so I have to keep going back to articles or copy/paste important bits! :D

  • Jadzhia me tooooo.. so annoying xx

  • Steam away as much as you like grumpyoldbean . Thanks to a useless medical system we end up blowing more steam than kettles !!! I did find it interesting that this endo, after basically rubbishing everything you said, actually recommended a female endo who prescribes ndt. Does that possibly mean the endo you saw knows he is useless ! Sorry.....I don't mean to be flippant.

    I think it probably best to tell your unsympathetic GP that you want a referral to this female endo. In the meantime try to keep positive. Good luck. 🐇🐇🐇🐇

  • bernie51 spot on bernie!! yeh, i saw him in person,then i spoke with him on the phone.. he was like a broken record... normal normal... tests normal .. .blah blah ... he was an understudy... just kept staring at that effin' screeen... wanted to put my fist through it lol ... oops temper temper xx

  • I hate the term "normal"! For starters with bloods the normal range is taken from a percentage of samples run at that particular lab, generally labs don't do bloods on well people so that gives a skewed result straight off. Secondly until there is screening for individuals when they are well and healthy we will never know what said individuals "normal" range is. Thirdly all health professionals are supposed to consider the full clinical picture ie. symptoms alongside tests and treat in respect of symptoms where they differ from blood results. Most seem to have missed this memo!

    Good luck with your next referral.

  • Grumpyoldbean When you said you "have had the lid nailed onto your coffin" I totally feel this way every time I see a doctor. Dismissive all the time and just plain don't listen at all, too busy looking at screen on pc to even notice Im in the room and thats hard coz Im no skinny minnie! . They have reluctantly agreed to refer me to an endo no less than 4 times this year and I still have not seen one. I don't know if its the endo refusing to see me because "COMPUTER SAYS NO" or that they just didn't refer me and just told me they would to get rid of me. Its a good point bernie51 makes about the endo knowing he is useless so giving you the name of another endo. I saw a GP like that. I waited 4 weeks for an appointment only to be told by the GP that she couldn't help me and I had to make another appointment with another gp. I was so ill at the time that I just cried, didn't have any fight in me and she knew it. Things just seem to be getting worse.

    Good luck. Joolz.x

  • hebden hi, it upsets me to read people like me, you and others feeling so let down.. i know its hard to cope.. even some of my family are getting peed off with me.. dont blame em.. but no WAY am i giving up.. i go home sometimes.. cry my heart out.. give up, then pick myself back up... i am sick of being told to stay off google and groups like here... if it wasnt for people on here , iwould stil be in the dark, accepting that i wasnt ever going to get better.

    it is our human right to get fair treatment.. and if the doc we see cant do it, he has to pass us on to someone who can!

    keep fighting, knowledge is power... ur not alone... xxxxxx

  • Yes I got the 'large public forums' spiel from my doc but seriously, what do they expect us to do? You do have to be a discerning reader of information, but at least it's information rather than nothing! I even bought an older Endocrinology book for 1p on Amazon second hand, just to have the facts about the system. :D People banding together is our strength, we have to use it! United we stand, divided we fall?

  • Jadzhia hi, I couldn't agree more! I didn't know anything before I found this forum. I didn't know about low iron, low Vit d etc. I didn't know about testing for everything and not just TSH level. I didn't know about NDT. Basically I didn't know how to fix myself, my GP certainly didn't/couldn't/wouldn't!! It's thanks to people on here who are all kind enough to listen, have the understanding what it's like and offering advice that we can all take on board. Thanks to them I'm about to do my bloods, privately, about to do cortisol test, privately and I'm on NDT purchased privately. Compared to my GP who is salaried my "friends" on here are worth their weight in gold (and for some of us thanks to our GPs' lack of knowledge that's quite a lot of weight 😂)

  • Here here KarBon! Agree totally. I think if I left it to doctors there would be no hope at all. the people on here are a wealth of knowledge and very generous with it too and I cannot thank them enough. bless you all. Joolz.x

  • Thank you grumpyoldbean. Bless you. I wonder if my family actually believe me sometimes. Tears may flow (frequently) but all the time there are groups like this there is hope of feeling "normal" again. No point in thinking doctors are going to help after all they only get paid well to do so don't they? I can honestly say that in the last 20 years I have only seen 2 doctors who seemed to have a genuine interest in getting me well again and they were locus who sadly I never saw again.

  • hebden its so unfair isnt it? i have cried all weekend.. i am such a strong person, all my life for everyone else i have been there... i cant accept this death sentence .. i am so angry yet upset at the same time.. i feel this is sheer cruelty to do this to a fellow human being.. not only to be ill, but not be believed.. and not be able to get decent treatment because i have no money.. how strange.. just listenin to the radio.. nhs in crisis and at breaking point!!! ha.. dont need to tell us? we know!! i dread phoning my doctor.. but i have to , to arrange to see a different endo.. i wish they could see how this affects us... its a crime... to have the tools to help us and not use them! i am educating myself the best i can , but its exhausting !

  • I know what you mean grumpyoldbean. I was always the one looking after everyone else and now I feel useless. I struggle to do anything. I dread seeing any GP as I always come out of there crying mainly through the frustration of another wasted opportunity to get well. I wonder if these doctors are aware of what they are doing? I thought their motto was "first do no harm". Its strange because I may be wrong but it seems to be worldwide. Where there is sickness there is brass.

    You are so right its exhausting trying to educate ourselves in something doctors have had years to learn but haven't bothered with.

    My last reply was supposed to say "locum" not locus. damn predictive type I can't seem to be able to turn it off. brain fog.

  • 1. Trying to find an endo who prescribes NDT is like finding a needle in a thousand haystacks. You have not only been told where there is one it has actually been suggested the GP refers you to this person.

    2. If you see this person they are more likely to do more thorough tests to determine that you should indeed be prescribed NDT.

    This might be the best thing your endo has ever done for a patient. Take advantage of it. I initially saw a private doctor who prescribed T3 and after a couple of years improving on T3 I have been self medicating with NDT for something like 12 years now and if left to the endo's I have seen, I would not be alive now to tell you about it.

  • Lilian15 ahh thankyou for such lovely advice.. yes i am suppose i have to thank my endo for at least recommending someone else.. i just hope my doc will refer me! he is gettin so sick of me... i think he probably will, just to get rid of me...its more time wasted ..am glad ur ok now... and yes , i never thought about the fact that she may obviously do more tests.. i have done alot of research.. i do believe my adrenals are rubbish at the mo.. my doc wont even entertain the fact i could have a problem, but i was undiagnosed for years, stressed for years.. and now not being optimally treated so of course i am gonna have problems.. even superwoman like me can need help sometimes.. thankyou xx

  • i have been dismissed by my endo as well. She says that i must have fibromyalgia and chronic fatigue syndrome, even tho all my symptoms started when my thyroid went low and my pituitary became damaged. She even says my cortisol is normal when it is not and refuses further growth hormone testing.

  • What do these endos actually do? Having never actually got to see one I was beginning to think they were a mythical creature! From what Ive heard about them I don't think I will bother to push to see one as I know I will end up angry and disappointed. May sound cynical but are they keeping us all ill to keep themselves employed?

  • Yes, some do keep people ill for profit..many doctors do.. i have not seen a good one yet, who knew how to see the diseases signs and treat, rather only going by labs, which with hormonal type illness, do not show a clear picture at all. You cannot tell by a thyroid lab, how the cells of each organ are responding. They do not know this.

  • faith63 i actually asked my endo this question... 'how do u know how much T3 is actually gettin into my cells with these simple tests? ' he said... because ur tests are normal! fml... thats just guessing! i said y dont we do the RT3 test and the ratios.. or test the adrenals? he said... because ur tests are normal!!! went round n round in circles with the same conversation...

  • ,ine said the same thing too. Thats why i chose to self treat, by symptom relief, with t3 only you don't have to worry about the t4 not converting. no more labs, no more needles and no more doctors. Truthfully, mentally, i cannot take the abuse any longer.

  • hebden in answer to your question 'what do these endos actually do?'..in my experience of seeing 2, one the top consultant and the other his understudy.. they do bugger all except read off a computer screen .. they take basic blood tests, dont look further than the end of their sports cars and totally ignore our actually real symptoms, in favour of a number in a column... i was begging ,no please dont sign me off.. i am no better, in fact am worse than the day i was diagnosed! funny how when those figures are normal.. they start saying 'oh its summat else'... they dont have a clue!

  • faith63 hi, horrid isnt it? cf and fibromyalgia are a bit of a cop out to me.. i know these conditions do exist.. but when they tried to pin those labels on me without proper testing and not even bothering to talk with me about my symptoms, i told them no way! i was actually overdosed on my levo by 2 doses... when i was told to lower them, my tingling and aches went away!!

  • wow..i was not properly evaluated either..i don't believe it, but if it helps me get disability, by having more medical conditions, then so be it. But, meanwhile i live in Hell.

  • When I was diagnosed with fibromyalgia march 2014 the rheumy did a scan on my hands and kept quiet but looked really sadly at me. I asked did I have fibromyalgia as my GP had suggested and the rheumy said "thats the least of your worries you have inflammatory disease" and I was prescribed strong drugs for this. These just gave me really bad side effects and made me worse health wise. two and half years later I have now been told that I don't have inflammatory disease and all my symptoms are down to fibromyalgia, osteoarthritis and obesity (my weight increased dramatically with these unnecessary drugs). By the way I haven't been taking these drugs since the side effects as I refused to take them because of how they made me feel which doctors didn't like very much. Every time I said I am sure I feel how I do because of hormones I have been ignored or they've said I must be depressed. Doctors love to use fibromyalgia as diagnosis because then they don't have to help you. You are right grumpyoldbean its a cop out.

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