OMG Virtually had a row with endo on the phone!!!!

I'm shaking!! Finally after over 3 weeks and emails my endo has called me to discuss my questions or basically lecture me and ignore everything I'm saying!

All he could go on about was my TSH, I'm afraid I'm not going to get anywhere with this man :(

After pretty much shouting down the phone, trying to make him understand, I have got him to agree to leave me on my 20mcgs of T3 instead of 10(along with my 50mcg T4) for 6 weeks until I have another blood test.

I think he agreed just to get me off the phone but basically he says everything rests on the TSH and if under normal values it is dangerous and I am taking big risks. He says if the T3 I'm on isn't doing the job then there is probably another underlying cause to my symptoms which will just be masked by increasing my metabolism with T3.

He also couldn't tell m e why my TSH had gone from 0.14 on 10mcg on my first test to 1.46 on 10mcg on my second test but was just happy about this as it meant my TSH was in range!!! Despite the fact that my symptoms had also started to return on this dose, HELLOOOOO, doesn't that mean anything??

So, it looks like I have 6 weeks to try and work out what the hell I'm going to do. The thing is, although I'm much better on 20mcg than 10mcg, I'm still not well enough. There's no way he'd give me more if I've got to fight to keep what I've got and he's obviously not read any of the information I left for him at my last appointment with his registrar.

What to do next, I'm getting so tired of fighting but when I'm so close I can't give up.

27 Replies

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  • I'm so sorry DeniseR :(

    I was treated privately by Dr S and reached a point where I was quite well on T3, I 'always' had a suppressed TSH from very early days like you. When I went to my GP to ask for the T3 on NHS the GP did not want to know, however they referred me to an endo.

    I chose the endo to go to, I chose on recommendation someone who does prescribe T3.

    When I went to this endo I told him I was 'cured' of my Hypo 100% and that this had happened on 175mcg of T3 daily.

    The T3 I was taking was Cynomel from Grossman. He run some blood tests and then wrote to my GP asking her to prescribe 150mcg of NHS T3 (the Mercury Pharma one).

    I then started a bit of a battle to have my T3 increased as I went to him on 175mcg and I was reduced by a whole 25mcg. Just like you I was told of the dangers of a suppressed TSH, however I told him I started feeling unwell on the reduced dosage and I was perfectly 'fine' before I went to him.

    He started saying just like your endo that we had to look at 'other causes' of me feeling unwell, so they ran a load of tests for autoimmune diseases/vit D/b12/iron/glucose, I told him: WHY do you think I was well on 175 and now that you reduced my dose by 25mcg all of a sudden I am 'supposed' to have developed some strange auto-immune disease???

    he said that sometimes we get a 'euphoric state' under T3 which makes us feel well but then once you are 'settled' in the regime if there is any other problem it 'creeps up'.

    I could not believe the rubbish I was hearing LOL

    I told him that Dr Antony Toft (former president of the British Thyroid Association) in his book 'Understanding Thyroid Disorders' says that 'some people' ONLY feel well if they have a suppressed TSH.

    So how come a former president of the BTA says it's ok for some people and that is what they need yet he (who is a member of the BTA) tells me the opposite??

    I received a letter 2 to 4 weeks later (a copy of a letter sent to my GP) saying that my T3 should be increased by 10mcg to a total of 160mcg daily HAHAHAHAHAHAHA

    Now will try to get back up to 175 slowly ;)

    xx

  • Hi Nobody's driving

    Thanks so much for your reply! It does give me some hope that I might be able to convince him. I haven't even seen him in ages, as my last appointment he wasn't even there. I had to see his registrar who was next to useless and who I left information with, including what Dr Toft says.

    My GP won't do anything without the endo. He's talking about increasing my T4 instead but I already tried this and it made me worse, this is when he said he thought I had a reverse T3 issue. Surely upping my T4 in this case won't work??? He really wasn't having any of it but I won't give up just yet.

    I haven't got another appointment until June but may have to fight to get an earlier one if he won't at least let me stay on 20mcg. Otherwise I could always try bombarding his secretary with emails regarding Dr Toft Haha!

    Good luck with getting back to the dose that made you 100% well, at least you're almost there X x x

  • Hi Denise. I didn't know that endocrinologists recognise the existence of reverse t 3 ? I thought its an alternative medicine only that talks about reverse t3?

    E xx

  • Hi Edysia

    Well as far as I know, some do know a little about it but most don't. I think it depends on the endo, their own opinions and maybe any info they've come across. That's why it's probably a good idea to get a recommendation for an endo from someone on here if possible. I think there may be more private endo's that think out of the box but not 100% on that.

    However, he doesn't go all the way with the info we all know and actually told me 'there isn't a test for reverse T3, well not one available to the public anyway', basically meaning there's not one on the NHS!

    X x

  • Did you get well quite quickly on T3 nobodysdriving ? I am on Erfa 1 grain Plus all the vitami s and supllements Anyone can possibly imagine. Three weeks gradual build up. I am not getting any better , I have impression that I am getting worse. I am giving up my hopes. I am stuck in bed and I have constant throat infection, pelvic pain. Needed to give up my study. I am too depressed to fight. If this ilness is permanent and not many people are lucky enough to get better then life has no point at all. I am in despair. Still trying but today I thing I finally give up.

    E xx

  • Don't give up Edsia, it does take time although I know how hard it is to wait, I'm very impatient!

    Lots of people get better, maybe not always 100% but I am much better than I was before, sleeping nearly all day and in constant pain. That comes from me fighting for my life, research and support and information from people here. You can do just the same as anyone else!!!

    D Xx x

  • But I hit the wall. I don't have any energy to fight any more. I have other conditions and I can't seem to get any other advice from a dr I see apart from getting erfa prescription. I am tired of experimenting with my own body and getting more sick. I fought so many years for different things. I am 37 now and my life came to an end.

    I believe that maybe some people can get better but that's not me.

    E xx

  • Oh Edysia, I can so relate, I feel the best thing sometimes is to just lay down and give up and hope my body just stops breathing! I feel like this far too often and hate these feelings, but have been hypo, I think, since the age of 7-8! I was brought up in an abusive house, lost my education through my health and being bullied at home and school. Things went from bad to worse when I met my husband, had 2 kids, had pre-eclampsia with both, post natal with both, well, ,more like a psychosis and ended up in a psych ward many times and had loads of electric shock treatment and had our house repossessed at the same time.

    Things have never been good, never. Apart from sooo much crap in so many years, about 4 1/2 years ago my husband was monumentally turned over by his boss and we lost everything again, everything. Also, our daughter,whos 20, has hypo, PCOS, B12, Iron and Vit D3 issues and may have a gene issue with her B12 and iron.

    Our son,whos 23, has hypo, adrenal issues, low B12 and iron and a Vit D3 defficiency and has just been diagnosed with raynauds and rhumatoid arthritis and needs tests to see if anything else is wrong.

    My husband,well, I knew there was a problem so I took him to the doctors and yep, he has hypo, his antibodies were at 1,000 and he also has haemachromatosis! Last February, on the 25th, he had multiple heart attacks and cardiac arrests and is beyond amazingly still alive! It would seem that he may have a blood clooting disorder, which his stupid haematologist should have checked for, so this idiot caused this and now he has a damaged heart and he should have had a liver biopsy, so may have a damaged liver too!

    My dad died of bowel cancer, I think it was hypo related, in fact I'm sure and my mum has just had her bladder removed due to stage 3 bladder cancer!

    I wont bore you with my extensive issues, but I DO know how you feel and I know hypo plays a part in these negative thoughts. Of course having so many issues and no doctor knowledgable enough to help is a big added burden.

    Do my problems ease yours? No, of course they dont. I hated the way my dad was, he was a mental torturer and a physical beater, but 1 thing he did say that I agree with is that, thinking about others problems doesnt ease your own, it just makes you realise you are not the only one with problems.

    I find it so hard to cope from day to day and cant think long term, especially with the worry that my husband could die all of a sudden. Some days I am more positive and think right, I'm gonna keep going and wont let these b******s get the better of me and have written letters, along with loads of literature to about 4 endo's so far, in the hope that they may read and learn! Between myself, husband and 2 kids, we have seen about 10 endo's so far, the last, which my son saw at Kings College Hospital, was by far the worst! And let me tell you, if I can keep my hands from roung his scrawny neck and stop him breathing, anything is possible!Lol!!! Keep going, keep going, keep going, you are so much stronger than you think;))

    best wishes sharon

  • Forgot to say, I'm 47 next month, so thats a long time to be ill.

  • Edysia, have you been checked to see if you have a pelvic infection too? Have you been given antibiotics? It sounds like your body is having to fight a lot more than just being hypo at the moment.

    Hang in there. Hopefully things will start to get better soon. 1 grain is quite a low dose. Hopefully as you increase your dose you will start to feel better.

    (((Hugs)))

    Carolyn x

  • They tested me for pelvic infection a while ago. It was negative. It hurt in on place only. I don't have energy and money to fight. I would be better off dead. I don't have any hopes.

    Thank you Carolyn

    E xx

  • Please don't give up. I felt like you did once and I am so glad I did keep fighting because everything has got so much better.

    Please get help and support to help you fight if you no longer have the energy to do so on your own. I wish I could do more.

    xxxx

  • Thank you Carolyn. Tony helps as much as he can but he started to feel helpless too plus doctors don't want talk to him just because he is my friend and they keep telling me about data protection act. I keep writing letters with my authorisation to discuss things with Tony but they still deny access. So if I feel too weak to go to surgery or to speak to them over the phone then I get no help.

    Exxon

  • I think we've all felt like you Edysia. I'm 39 now and have been struggling with this at least since I was 27, if not before but got really bad just over 3 years ago. I've had loads of tests and different symptoms and diagnosis including CFS and Fibromyalgia. I also had a lot of pelvic pain at certain times and had the camera both ends lol amongst other things. Nobody could tell me what the problem is and it comes and goes on it's own and has made pass out with the pain in the past. I think sometimes it can be your body trying to cope with the disruption of your thyroid not working properly and effecting all your hormones, therefore your whole body.

    You have to keep trying, never give up until the end, you've got nothing to lose if you're already feeling that bad surely???

    I really hope you have someone to support you, I did not and it makes it much harder but everyone here will help.

    Keep questioning your treatment and researching and demanding new tests and treatment - try everything you possibly can!!!!!!

    D x x

  • Edysia, T3 was the 'answer' for me.

    I never was a 'complicated case' however on NDT I got better first then 'hit a wall'.

    you are only on 1 grain if I were you I'd try longer on NDT before you look into T3.

    at low dosages (both of thyroxine and NDT) people can feel worse before they feel better.

    Many many people on here took years to get better and they also saw VERY frightening times like you before they got better.

  • ((((hugs)))) Denise xx

    Do we have the same endo?? sounds like we do!! They also dont like being told or given information, as they have been to medical school and we havent, Mine even said about this site and said that it needed shutting down as it was giving out wrong information!!!

    The one I saw just went off TSH and didnt even take the others into account, and told me that he would not treat me till my TSH was nearer 10!! I said well by that time you wont, as I would be dead. He was not impressed. Made out that I was depressed, and that was part of the problem, and that in his opinion it was CFS.

    Go back to your GP, and ask him to send you to a different endo. He can and will. I got mine to send me to a different gynaecologist, the one I saw refused to carry on with treatment they started me on. New one is amazing, and he was disgusted at the way I was treated and sees me everytime I go for injections just to make sure I am ok, and sees me in a small clinic and not a hospital as I have white coat syndrome. He even takes the coat off!! lol

    BUT because my bloods are 'within normal limit' which are outdated and not used by some other health authorities, my GP wont send me to another endo for a second opinion.

    Hope you get treated better at your next appointment, and the treatment settles and makes you feel better xx

    Good luck babe

    Ann xxx

  • Aaaw thanks Anne

    Haha, we probably do, although I'm starting to think they're all(well most of them) much the same anyway - useless lol

    I don't even mention this site or anything that's not been written by another doctor. I got a lecture on my second vist about Erfra without me even mentioning it!

    I have already been diagnosed with CFS and Fibromyalgia but I know it's my thyroid. The endo did try to discharge me until I upped my T4 and it made my symptoms worse, that's when he decided I had a reverse T3 issue!

    I have thought about another endo but I'm worried I'd lose my T3 altogether(which is the only thing to make me better in years). I'll wait for my next lot of blood tests and go from there I think but if he's not compliant or open new suggestions then, i'll defo start searching for a better endo.

    It's nice to hear there are some concerned docs out there(your gyno), at least you got one who actually cares and wants to do his job properly. I hope you can find another at some point who will help you with thyroid issues, I really do.

    It's hard enough fighting your way through life and each day it brings without adding all this to it!

    Good luck you too :)

    Denise X x x

  • Hi Denise

    If you wish to reply to a particular comment, you have to press the blue Reply to this and another box will open otherwise the person is not notified and you may wonder why if a return reply was required.

    All of us have done the same thing initially.

  • Hi Shaws

    Yeah sorry, I do know this but sometimes press the wrong thing and don't always notice lol

    Thanks for letting me know :)

  • Nobodysdriving has some good advice there. I would really recommend gettin Dr Toft's book so you can show your endo in print what he has said.

    Keep fighting!

    Carolyn x

  • Hi Carolyn

    I do have the book and took it with me to my last appointment but my endo wasn't there. I had to talk to the registrar who said he would pass on the info. I also left a print out of the most relevant parts but either he hasn't even seen it or doesn't care. I'll defo take the book again on my next appointment though, think it's my best 'back up' .

    And thank you, I will try but it's hard without losing my temper or the plot! lol

    D x x x

  • There are also other reasons for suppressed TSH. Both low B12 or incorrect cortisol levels can reduce TSH significantly.

    There has also been research to show that TSH is only useful in hyperthyroid and euthyroid patients and the hypothyroidism is a different entity in which TSH does not respond in the usual way to thyroid hormone levels. I'm afraid I can't find the paper but if he is an endocrinologist and he is keeping up to date like he should be, he should know all about this paper. If I find it I will let you know so you can print it out for him :D

    Carolyn x

  • Thanks Carolyn, I haven't had my B12 tested for a while but last time it was at the lower end. I was waiting to sort out this T3 issue and have the blood tests before I start it but I think I will get some asap.

    That would be great if you could find it, I have to go armed with as much info as possible I think, still it's a while before I'll see him.

    I did try and say that my FT3 on the last test still wasn't near the top, showing that I'm not hyper but then he started going on about clinical and non-clinical and that this meant nothing :(

    Thanks again, you've been really helpful X x

  • Unfortunately the entire paper is not available without paying, however the important bits are here ncbi.nlm.nih.gov/pubmed/234...

    It basically states that the response of TSH to levels of thyroid hormones is different depending on whether the patient is hyperthyroid, euthyroid or hypothyroid. The TSH response doctors go by with the standard TSH test works for euthyroid patients and, to some extent, hyperthyroid patients but the TSH/thyroid hormone relationship is different in hypothyroid patients. Without being able to read the whole paper it is difficult to tell for sure but I think it is implying that this is due to the fact that the feedback loop no longer works as it should.

    I hope that helps a little

    Carolyn x

  • Aaaaw, thanks Carolyn! x

  • Ahhhh, I'm so sorry to read this. It makes me so very cross. Just keep at him. Write to him again, before your next appointment. You never know - he might prescribe just to get some peace, lol! I often wish my GP and Endo could be made to feel what it's like for just one day. They'd soon prescribe! I think I'm known as my GP's 'heartsink' patient but I simply don't care any more. But I do think it's an idea to try D3, B12, calcium et al - I began to feel a bit better after starting them. But make sure the B12 is methylocobalamin - GP prescribed B12 - 25mcg Cyanocobalamin twice a day but it upset my tummy. I read nobodysdriving's experience and I started to take 5mg methylocobalamin daily and feel better for it. (Body grts rid of what it doesn't need) Keep your chin up! Kxx

  • Hi

    I know, it's so infuriating and I've never been the most patient person but when you feel so awful, I really don't have any, especially not with closed minds! I wish they could all feel as we do, about a month should convince them lol

    Yeah, I don't care what they think of me anymore but still need to keep them onside to get what I need, I'd love so say what I really think.

    I'm already taking some D3(prescribed), although think it's quite a low dose but will get my vit D re-tested on next bloods to see where it's at. I also need to get my calcium tested as that hasn't been done since I started the D3. Thanks for the advice about the B12, there's so much to choose from so that's really helpful.

    I'll try lol X x x

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