Suicidal!! ..............update on last post

Just ti make things a lot worse i spoke with my gp this morning who received a letter from my endo. When i had my nuclear medicine scan u was told it was clear but it has showed up a small pericardial effusion (liquid around the heart). Obviously i read up on it and it seems quite common and apparently not serious although i have been referred to yet another specialist, to which i have heard nothing! That news has upped my anxiety levels now with something else to worry about.

My gp said my endo did the letter on the 21st april but only received it today!!!! Have asked my gp for a copy of that letter so i can blast my endo for the delay.

Gp also said he was writing to my endo direct about the t3 as he doesnt know enough.

This news this morning is just another blow to me which is sending me over the edge now.

The days of my continual suffering have led into weeks and months and i can take no more. It could still take weeks and months and i am now out of any strength to go on. It has to end for me because i know with this hashis i am just not going to get better :(

Last edited by

59 Replies

  • Jefner,

    It generally takes around 3 weeks for me to receive a copy of the clinic review letter my endo sends to my GP.

    As your GP won't prescribe T3 at the moment, have you ordered online or do you need sources?  It will take weeks/months for symptoms to resolve but you will feel improvement along the way.

    I hope your therapy session this afternoon will be helpful.

  • Its the fact my gp said lettet was done on 21st april and only posted yesterday!!!!!

    I dont have the strength to do any of this tbh hon. I ordered some t3 but my endo said t3 wasnt relevant cus my high stress levels will lower it anyway. Am so confused at what i am being told right now :(

  • Jefner,

    The endo probably dictated it 21st but it's been waiting for the secretarial service to type it up and send it out.

    Your endo has expressed an opinion about why your FT3 is low.  Trying T3 for yourself will tell whether or not it is relevant or helpful.

  • His secretary is awful, unfriendly and unhelpful, i expected better service going private

  • Some people employed in certain positions shouldn't be in them if they cannot be civil to sick people who are desperate for a diagnosis and a solution.

    Dealing with the public particularly those who are unwell, the first priority should be that they have empathy and confidence  towards the patient.

  • I certainly havent received that from her or my endo. He just says he cant do anymore for me and referred me to psychiatrist as i am now suicidal. Have had all doors closed in my face with no answers to anything. Thats why i now want to end it because i have no where else to go

  • Jefner - as they say 'if one door closes another opens' and I can understand how you feel - as if there are no answers for you.

    Like many people on this forum, neglected and tossed aside due to the blood tests alone, have resorted to self-medicating and many have felt the best they have in years. 

    I think you may have to consider this. There is no danger taking thyroid hormones on a trial basis (sometimes you've to try a few to find one that suits you most).

    One Doctor, Dr Skinner, died of a stroke but not before he began the World Thyroid Register and many of us think his early demise was due to the following - trying to move a Mountain against the Endocrinology background of 'hear nothing, see nothing, unwilling to advance their knowledge and thousands remaining undiagnosed/under-dosed -appearing ignorant in fact of the working of the thyroid gland:-


    Throughout his work with this group of patients Dr Skinner tried very hard to engage with the rest of the medical profession and address this difference of medical opinion which results in lack of proper medical care in this particular cohort. As far back at 1999 he organised a conference and invited Endocrinologists, General Practitioners and representatives of the Royal Colleges and Department of Health and other medical bodies to engage and discuss their difference of opinion and formulate a way forward for the diagnosis and treatment of these patients. No representative from any organisation except an epidemiologist from the Department of Health attended. The same pattern followed all efforts including further conferences, meetings and letters by Dr Skinner to have a public discussion with medical colleagues to address this shortfall in the care of this particular group of patients.


    The Royal Society of Medicine’s reply to Dr Skinner’s repeated request for a conference to address this problem was to organise a conference on thyroid disease and refuse Dr Skinner’s request to speak on his experience in diagnosis and treatment of hypothyroidism. The only Royal College which sent a representative to speak at the World Thyroid Forum organised by Dr Skinner in 2012 was from the Royal College of Obstetrics and Gynaecology to speak on fertility problems in hypothyroid patients.   

    Dr Skinner vigorously opposed certain aspects of the UK Guidelines at the time they were being formulated and lodged his ‘Document of Record concerning UK Guidelines for thyroid function tests’ in 2005 with all the Royal Colleges, National and Local Health Organisations, the British Medical Association and tried with the Society for Endocrinology who rejected it. He also wrote to Dr G H Beastall, Secretary, Guidelines Development Group, British Thyroid Foundation in 2005 to comment on the pitfalls in the proposed guidelines.

    So, why let them win - show your mettle and you will get support from the forum. It's not easy and it is trial and error but in the end you can get there.

    We are fortunate at present that another doctor (Scottish like Dr Skinner who was stubborn but who clearly saw the pitfalls  (I'm Scottish too) when faced with the unsurmountable at times. is on our side - but truth will out'.


  • Thank u hun, i have ordered some t3 (given up on my endo prescribing). With help and guidance here i will try it

  • I look forward to your diary of improvement. :)

  • So do i

  • :)

  • I've gone private as I couldn't stand the NHS nightmare anymore and they were pushing me into a financial disaster as I couldn't work. I'm now seeing a physician with a special interest in thyroid disorders including cancer. He's cheaper than an endocrinologist and deals only with thyroid disorders and not diabetes. I would advise you to find a similar physician. Most Spire hospitals have one.

  • If you didn't get his name from I would pass on his name for her list. We need good, sympathetic doctors.

  • No. I found him by checking the various hospitals in my area. But I don't know if this doctor would like to be mentioned in the list. Should I ask his authorisation first?

  • Yes, that would be wise to check with him first.

  • Could u pm me details please xx

  • I have noticed something that contradicts your GP: when I'm stressed out, my T3 are high, when I'm relaxed, my T3 are low. Stress increases both T4 and T3. To get a proper results, I always do one hour of hypnosis before a blood test.

  • That's good to know Nathalie70. Thanks for info.

  • I had a first bout of hyper in 2012, was on Carbi for a year and relapsed last summer. When I left the NHS, I gathered all my results from 2012 to 2016 including the ones when I was on remission and I noticed this pattern between stress, T4 and T3.

  • I checked what me endo said and he is correct

  • Jefner I am assuming you are in the UK, if so does your local hospital have a Patient Advice and Liason Service (PALS)?  Go to them and discuss the problems you are having in all areas, the awful secretary, the long time it took for your GP to get a letter and what health issues you have, hopefully they will be very helpful and get something organised for you.  They are not employed by the NHS.

    Wishing you good health

  • I have a major complaint to make against the mental health team who have messed me about for months in cancelling every appt the made

  • Jefner, at least they are trying on the fluid issue. The high anxiety you are suffering from is merely a symptom, try to remember that, there is hope.

  • Jennifer are you saying you are going to kill yourself? Ultimately that is your decision and of course if you feel you can't go on it is understandable to be driven to thinking about suicide. Can you tell me who would miss you if you weren't here? 

  • Only my elderly parents, no one else, but its me suffering not them!

  • I only asked because when I was self harming and feeling suicidal the thing that stopped me was thinking how upset my mother would be. It's hard for me to empathise with you now because I don't feel that way anymore, despite having been bed bound through m.e for the past five years and lost a third of my child's life. I am glad you've seen a therapist and they are contacting the local team, it is more appropriate to get such support face to face, they will do a better job.

  • so sorry to hear of your illness hon, it's very difficult to see anything positive when the suicidal thoughts are present, there is no light at the end of the tunnel when you are in the depths of depression and it doesn't help living alone either, I am on my own most of every day and thoughts run away with you.  But the symptoms are debilitating.  If a doc said to me "I can make all your symptoms go away forever BUT I would have to remove a leg".....I wouldn't hesitate, not in the slightest, I would do it because mental torture is the worst.  I lost many years to agoraphobia and anxiety, felt very bitter about it for a long time in the things I missed out on but I had to get passed those feelings because they started to destroy me

  • Yes I'd give my arm or leg to have my life back, I'd be less disabled with one leg ironically.  I do know how those thoughts take over, the night or early hours were always the worst and before my hysterectomy it was my periods that were the real danger days every month. It is very difficult to hang on when like that and so alone, which is why if you can find something outside of yourself and write it on a big bit of paper to read when it's really tough, something to connect you to the outside or other people or how you know you can feel when times are better, or something you want to do with your life. For a long time I've had a sign at the foot of my bed saying ' do not long to feel better than you do now, tomorrow you may feel even worse, appreciate how it is now even if it's grim'. 

    If you are hypo balancing things can take a year or so, getting the right combination whether that's cortisol and NDT or t4t3 or stuff to lower high cortisol. I have started the wahls paleo diet, check out Terry wahls ted ed talk, and for the first time since I hit the m.e wall I am losing weight, not getting hot flushes and beginning to improve in tiny shifts, but I know it will be another year or so before all the changes that may happen will happen. I know the small changes are a signifier of my hormones balancing and my body getting ready to fight what is attacking me a bit better. Hormones have so much to do with depression and a diet like that is a real reset diet, but it's hard and tajes patience. I want to be better tomorrow, but I know after five years it just doesn't work like that and I've found meditation etc has helped strengthen me. 

    For me what got rid of my fifteen years or so of depression was acupuncture. There are lots of things to try, it's just a case of working to hang on for as long as possible. I gave up on doctors, most of them don't even believe in m.e so you have to find your own path.

    Good luck with it, I really hope you can start to see chinks of light soon.

  • Great advice sulamaye , and I love your quote what you keep. I am going to write that down myself and keep it somewhere :)

  • Thanks pastille. 🙂

  • I am going to start to write down little positives I achieve throughout the day and see if I can add to them each day :)

  • Aw great idea Jefner , think I'll do the same. I'm so glad you are starting to feel more positive :) 

  • always feel better later in the evening.  From the moment I wake up until that time, it's a living hell with the symptoms and I don't know how I get through it each day

  • But you do get through and things will get better. I have always been a night hawk. When are you going to start your T3 then? 

  • yeah I do somehow but I have no idea how because the anxiety/panic/nausea/terrifying fear/depression and suicidal thoughts are so bad.  I just keep popping the tablets to help ease it.  I wouldn't mind it I could sleep through it but not possible.  I must admit I have always been a night owl too, don't normally go to bed until around 2am.  I like the night time because it's quiet and I enjoy pottering around the garden during the night with a torch to see what wildlife is about. 

    The weekend just gone for me was an absolute nightmare, it was frightening and my symptoms were much worse.  The sun was out which meant everyone was out, drills, lawnmowers, screaming kids, you name it and I can't tolerate much noise these days, just makes me feel worse so I had to stay indoors all weekend with doors and windows closed.  Today was better because it rained :)

  • Yes I can only stand so much of the sunshine and business it brings with it. You make me laugh pottering about the garden in the night! You're braver than I am, you wouldn't catch me out there and if I seen something move I wouldn't be checking it out I'd be running :)

  • will tell you a funny story about that.  Around 2am one night a couple of years ago I was out with a rather bright torch I have collecting all the slugs and snails that were eating all my plants.  The police helicopter was above nearby obviously looking for someone.  They must have caught sight of my torch moving around because the next thing I knew, the helicopter was hovering over my house.  I quickly ran into the house and turned the lights on so they could see I wasn't  a burglar.

  • Ha ha funny you should say that because after I wrote the last reply I was thinking actually I would be more scared if I seen someone in another garden with a torch :) Funny how we run from police when we're not guilty :) 

  • hehehe.  See I am feeling much better now which is why I don't want to go to bed.  I spend so many hours a day feeling so ill, I want to savour the moments I feel well.  Come the morning it will be another day of mental and physical torture but I do try and remember that I will feel better later in the day; it's just willing those bad hours away quickly and of course they drag

  • Don't blame you, it's like having a rest isn't it really. I have not been moving around much until my last levo increase 5 weeks ago and I think that is starting to kick in now. I have moved around a lot more in the past couple of days and it feels so much easier than not doing so. strange this illness. Do you read? Or is your concentration not good?

  • such a relief to me to feel normal for a few hours although during the day with all my symptoms, it's difficult to remember how I feel in the evenings.  It is best to keep moving around hon.  I hardly moved at all in months and now I have Reynauds.  It's actually important to move to keep the circulation going, if only going into another room and back.  You must keep moving at least once every half an hour.  I feel worse if I don't try and move about.  It also gets the seratonin and endorphines going as well which are mood enhances.  Am always telling my  elderly mum off for not moving much.

    Read?  Blimey, have no concentration for that, have tried but end up reading the same paragraph over and over again because it hasn't sunk in.  Not a great reader anyway but I do try the crosswords.  My neighbour lets me have his papers every day as he doesn't do the crosswords.  Can't even get the simple ones half the time and have to cheat and google the answers lol

  • Thanks for that. I will remember that. When I am under medicated I don't move every half hour, no way do I. And I need to remember the endorphin relation too. The past two days I have done both gardens and painted my bedroom lol, only a quick emulsion job but still more than I have done in 2 months. I love reading but my concentration gets bad too. Hey jefner just a thought but would you not be able to start a support group in your area at evening times when you feel brighter? Or are you not up to that?  

  • funny you should say that, I was thinking of setting up a group in my area although Sue isn't that far from me and sets up meets in Norton Lindsey which isn't that far from me.  There are several places in my town with easy access off main routes to set up a group.  If, or should I say when I am well enough I was thinking of doing that. 

    Sounds like all the gardening and painting you have overdone it.  I wouldn't do too much whilst you are not well as it may set you back.  I now listen to my body and even after hoovering one room I sit and rest a bit especially as I am weak to not yet eating properly throughout the day

  • You're right, I will probably be worn out tomorrow, I did have a lot of breaks though but I am still learning and need to drum this into my head. It's just that things mount up don't they and when I get a bit of energy I think right get it done now. But going from past experience as well what you are saying is spot on. It's hard to take it easy when you feel like the sudden energy is a gift! I am not sleeping as well either for past couple of nights. I suppose I just have to adapt to this dose of levo now, I was starting to sleep well for a while. My esophagus is hurting now as well as it does at this time. I am going to try to get some shut eye, thanks for your company, I hope you sleep well, make sure you listen out for helicopters before you venture out into that garden :)  I think running a group would be really good for you and you have a lot of knowledge to share. Goodnight xxx

  • yes Salu, it's very very difficult and virtually impossible to control any thoughts when I am in the fear and flight mode for so many hours of the day.  I have tried many things as a distraction and to be honest I have run out of ideas.  What I do find relaxing is sitting in my car on the drive when it's raining.  The pattering of the rain on the roof is like music to my ears and I feel all comfy, warm, safe and secure.  It rained all day today and I was looking forward to it but unfortunately the pattering on the roof was completely ruined by the damn starlings that are nesting above my bedroom window.  I haven't slept in my own bed for over a month now because of it as they scrat about during the early hours.  Once they have fledged I am going to have to get someone round to block the hole because they normally have a second brood. 

    Hormones are a girl's worst friend.  I believe since being post meno my WHOLE body has changed, not just bits of it

  • I was like that for the first two years of my illness, adrenalin at every tiny sound, jerking awake to the sound of my own heart, having to constantly ask my five year old to stop, stop stop what ever tiny noise she was making. That was when my cortisol was high in the morning and then low. It all got much better and then I had another saliva test and discovered the reason was my cortisol had now flatlined. So it was making loads of adrenalin originally producing the hideous fight or flight stuff, but once the poor old adrenals had given up the ghost it all gave up, but I couldn't cope with anything going wrong as I had nothing to draw on stress wise. That's when I started self medicating with hydrocortisone. It was a big scary decision but I'm glad I did. Been on it 14 months now, enabled me to get my t3 up, and I'm starting to reduce now to have another saliva test to see what is going on.

  • Hello Sulamaye

    would you mind pointing me in the direction of the recipes for Dr Wahls paleo diets ?

    many thanks

    JLT Sirius

  • Well it's not quite like there are Special recipes, more that you need to read her book to know what to eat and not. There are three levels of her approach and some recipes in her book, but I make it up from what I'm allowed.

  • Just got back from seeing a private therapist. She is a very matter of fact person and comes across very confident and sure if herself. She wants me off the fluoxetine, which i have only had 3 doses of and wants me to double my dose of seroxat which worked really well for me for yrs in ridding my anxiety symptoms. She says i havent had the right treatment to get better as i was never offered any therapy yrs ago when my problems first started. Appt was basic assessment so i had no chance of asking any questions. She is contacting the crisis team to help me more and my gp has also got onto the mental health team again to see me as an urgent case as they have been messing with since last oct cancelling every appt ever made (5) in total.

    I asked her it can be predominently depression causing most of my symptoms due to high cortisol levels, with my symptoms easing off most evenings. From past experience my anxiety symptoms were present 24/7 and NEVER  eased off at certain times of each  day, so she amazed me when she told me that and said that she sees it all the time!

    I am now wondering if, after all this time in concentrating on my adrenals, that in fact the anxiety etc has kicked the cortisol off, rather than the other way around as the scans revealed no tumors on the adrenals plus being post menopause with all the hormone changes, I suppose my whole body has now changed and I have to change with it

  • I would say it's more likely to be the hypo causing your high cortisol, and the high cortisol causing the anxiety. It's possible that you have been hypo for years and years and years, without knowing it. But, your adrenals know.

    Being hypo in itself can cause anxiety. But I Don't quite understand, what did she say that amazed you? I think you missed that bit out. lol

    However, I'll repeat what I said yesterday, it's your low T3 causing most of your symptoms, if not all. Just wait and see how you feel when you start taking the T3! :) 

  • Amazed at how she sees so many people whose symptoms improve in the evenings like mine

  • Ah, I see, I didn't understand that. Sorry! Well, it doesn't surprise me. There are lots of people with fatigued adrenals, and they have no idea what is wrong with them. And their doctors have no idea, either! That's the worst part! 

  • I actually consider myself lucky on that front because at least my adrenals are doing what they should be doing and pumping cortisol out, even though it is high.  It's when the adrenals don't pump out enough when you are really in big trouble which means your adrenals are completely shot

  • Well, adrenals can recover given a little rest and someTLC. Or were you talking about Addisonn's disease?

  • Hey Jefner

    It's really good to see your mood has lightened a little over the course of the thread. You intrigue me writing of symptoms improving of an evening because certainly that's the only time some days I feel truly human ! What did she say was the reason for that - have I missed that bit of the conversation ?

  • So it happens with you as well then?  She didn't unfortunately, it was all a bit of a rush with her asking me lots of questions but she did say it is very common and she sees it a lot

  • apparently it happens in about 50% of cases. 

    Amongst other things, some of the relief is probably down to what you were saying earlier about getting the serotonin and endorphin levels going as the day goes on.  Some of it may be down to fluctuations in cortisol levels.  The trouble is you feel so much better that it makes you reluctant to go to sleep BUT your body needs you to be asleep at the right time and for a long enough duration for your hormones to do their repair jobs.  In the end you enter a vicious circle that perpetuates itself.

  • Please keep on going. I was suicidal last year with what this condition was doing to me, but I'm getting better and I am actually a lot better now. You have to keep on pushing for answers, but know that you are a warrior, a thyroid warrior, and you can do this. 

    It makes us stronger in more ways than one, but we have to fight for the change and the right to feel well again. We shouldn't have to, and I know it seems unfair at times, but we have to stick together and keep on at it. 

    You've been so strong so far.

    Thank you for posting your message here so you could receive such support from the rest of us in this community, knowing what you're going through. 

    I wish you all the best. 

    I have been blogging about my experiences, here - invisiblehypothyroidism.wor...

    It may help you to see that you can get through this. 

  • Feeling so poorly again today, sleepy, weak and very very depressed, hardly eating in the day which makes things worse. Nausea bad, sat here alone suffering....cant take anymore, it has to stop :(

You may also like...