I can't cope anymore - at 33 my life is over

Three weeks ago I said to everyone that their was hope, I found a new doctor that was going to be supportive and would do everything he could to help me, I saw him today and his attitute was different - he was not interested at all, I am not sure if it is to do with what was on my notes because they had not come through the first time I saw him.

He made all those empty promises - I really thought I was going to get the treatment that I needed - My hope has been shattered. I just don't feel their is help in sight and I feel I just want to die - I have suffered enough. There is no light at the end of the tunnel for me.

72 Replies

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  • Hi, you need to make another appointment and take along the most assertive, supportive and educated person, so you can ask your questions in a way that get heard by more than just him, you also need to call in a friend or relative or both who you can rely on, to support you through this phase. I am sure some of the ADMINS on here will instruct you which articles to take along with you to try and positively re frame your medical care! Your life is not over, you have just hit another hiccup which needs to be smoothed out, Please look after yourself, many on here have been through similar. Mary F x

  • i agree with mary totally, so many of us have been on deaths door and i have been on one myself, i literally thought i was slowy passing away i, it lasted 3 years and also 2 years before the last 3years episode, and altho i am far from being right yet, i got out my armour and guns and fought like merry hell, even thou i was exhausted and so dreadfully ill, i had no medical help, had horrid things written on my records, but after searching and saerching while allwhile being so ill and talking to others on here, you can make progress, its not easy but life isnt easy , you are stronger than you think. you must never give in. good to see you back too mary F.

  • Good for you x MaryF x

  • pettals, thank you for writing your email. I have been experiencing exactly what you've described and because I've been through cancer and have other probs. now I thought the constant illness and exhaustion was part of a decline towards death. What a terrible drug Levothyroxine is! I had massive side effects from drugs to treat cancer which wrecked my health but at no time did they create suicidal thoughts in the way this has.

    Knowing these feelings are an illusion caused by Levothyroxine makes such a difference because it means it is possible to dismiss it.

    I had got to the point in the past couple of days when I looked up the Samaritans' numbers.

    Thanks so much.

  • dionmalco, i had an adrenal crisis, i know i did eventhoi was told i was a nutter-- i had alll the symptoms and i saeche devrysymptoms iwas experiencing and believe me i found out some very valuable information, i was so ill i cannot tell you but i was determined to find out what was hapening, if it wasnt adrenal crisis i would like to know what i t was but no one took these symptoms seriously becos there were TOO MANY! ALL AT ONCE. but if yu look at adrenal crash symptoms i could tick each one off. i bought dr james wilsons book and i read dr lams site and dr rind, dr lowe, dr mercola, onibasu site, dr ed lichen site on cortisol and what low cortisol does. my friends say i should write all my info down but i dont have the energy, if i could find someone to write iit for me i would, it is too valuable to die with me. i wish you well dionmalco xxxxx

  • Pettals I hope you find some medics that will listen, believe and act in your interests soon. What you've endured makes depression even worse. The drug, instead of just treating thyroid complaints, must also create some kind of chemical imbalance. This causes mental problems from short term memory loss to suicidal inclination. From my reading on this site this 'imbalance' affects people in a host of different ways; in common is none of them are good.

    i saw the diabetic nurse at my GP's practice about a month ago and mentioned this website and how helpful it is and, given suicidal intentions are a feature of this disease also, expected her to be aware of it. Not for this particularly but helping those who may have a conflict between, or competing drugs. Instead she gazed at me with 'no sale' in her eyes plus 'no interest'. If this is replicated in the medical profession throughout UK it's no wonder people are literally at their wits end.

    It's terrible that Kittten-whispers has been treated with such indifference and we're all forced to look for doctors who understand it needs holistic treatment and care because Thyroxine affects everything.

    I hope you'll find a way to break through the chronic fatigue soon - if I do I'll shout it from the rooftops. Thanks again for all the info. you've given; it's made a huge difference for the better in my life; best wishes & hugs {{{Diomalco}}}

  • hi diio-- how has this made a difference for better ? i hope you also get some treatment...the only close adittance for adrenal/insuff, i got was from a neuro in the p.o.t.s. clinic who listened to me and first suspected addisons...then added but you are still alive--- however he did write that adrenal insuff would certainly explain my symptoms.... on that basis he orderd a load of testsincluding syn test but but but--- the two test days came and my syn test was left off and it was squashd in next day at bloody lunch time---- no no no it should be done at 8am!!!!!!!!!!! howver i have produce dvarious symptoms of an autonomic dysfunction flavor written on my test paper, so-- i go back for my follow up and i do not see my lovely swytched on doc , i see a nurse specialist-- in what i ask? apparently the test paper has been ignored and i dont have any auto dysfuunction at all! even tho the tests reveal i do! so what doe sone do when one gets conflicting crap like this? one then has to start all over again and write a lng letter explainimg symptoms and dates and what happened and send it off to th eproper doc and hope and pray he listens even tho i am discharged by the nures who told me to look up a particular nerve website as this web offers a ' sympathetic anwers to SOMATIC SYMPTOMS! i rest my case what a bloody cheek!

  • The reason your email has helped so much is because I had no idea before reading it what I’m experiencing is yet another manifestation of Levothyroxine side effects. Knowing this makes all the difference because I really thought, given the physical effects too, I couldn’t recover. I can see now years of ill-health which has been exacerbated by taking this drug has caused depression and that is exaggerated by the drug too. Not sure I can do much about the physical side effects but kicking suicidal tendencies into touch which are artificially manufactured, an illusion, created by Levothyroxine I can do.

    I’ve come to the conclusion it’s pure luck if you have a GP who’ll take Levothyroxine complaints seriously and I think a lot comes from sheer ignorance, not necessarily their fault, because there’s no reliable research available on any of the long term effects. Essentially everyone taking the drug is a guinea pig. I had exactly the same problem with cancer drugs both of which, taken consecutively, were the only drug on the market to combat the disease. The view seemed to be as there was no alternative; it didn’t really matter if there were non-fatal side effects. As more than one nurse/doctor remarked to me when I pointed out a year’s treatment for the side effects had been useless, “You’re still alive aren’t you.”

    Life, regardless of the quality of that life, is the only yardstick they measure by. The concept of the curative drug being worse than the disease is not a consideration and they think you’re mad to think differently; but I’ve never met a doctor or nurse who had to deal themselves with the same situation.

    There’s some consolation in that I was told, initially, I would have to take the cancer drugs for the rest of my life; after about 3 years of doing so it was reduced to 10 years. A couple of years later it was 7 years and then one day I went for the annual check-up and was told I was ‘cured’ and could toss the leftovers in the dustbin forever. This occurred because by then research had proved life-long use was unnecessary.

    Perhaps the same will happen with Levothyroxine eventually or researchers will come up with a drug that targets the Thyroid gland alone without attacking other parts of the body and mind. Meanwhile I don’t have much hope my local GP practice can help much. I’ve learned more from healthunlocked’ in 3 months than in the entire 7 years since I was diagnosed.

    The doctor you saw who was supposed to organize your tests sounds really inefficient and shifting you to a nurse rather indicates he knew that himself. If you write to the doctor you trust he really cannot put your letter aside because it might contain valuable information and he’ll probably realize you were ‘brushed off’ by the doctor and nurse you did see. As for accurately diagnosing yourself through a website, as suggested by the nurse; if you are capable of doing that you wouldn’t have needed either a doctor or nurse. Fact she suggested it at all is rather revealing.

    I do hope you are able to get the treatment you need soon from people who care. Best wishes - Dio

  • well i am not sure that he palmed me off to the nurse i wil l have t wait and see when the reply comes back wish you well too. xx

  • Don't give up, hang on in there. I know it's difficult I'm the same age as you and in a similar situation to you by the sounds of it. Set back after set back, you think there's light at the end of the tunnel and then the next minute your hopes are dashed. I'm a stubborn so and so and am determined to not give up and prove the doctors that they're wrong.

    What did your doctor say exactly?

  • He went from promising all this help to being just the same as the others, I do wonder what was in my medical notes, for him to change so much. It's not just that my dad (who I live with) is giving me a hard time over all of this, I am so miserable and stressed out. I just don't see the point anymore x

  • This may or may not be relevant but there may not have been anything in your notes at all to deter him. I wonder if he meant what he said about treating you but wasn't explicit about his boundaries, which it turns out are conventional. My experience was similar. My doctor said promising things about keeping the tsh low, treating symptoms, getting me better etc, and what he meant was he would raise my t4 until my numbers were good and then when I was still unwell we would just wait and wait some more and when I still didn't feel well he said we could look at cfs. He wanted me to feel well but didn't intend to step outside the conventional treatments to get me there because I believe he thinks t4 is the solution.

    I say this only so you don't feel like he necessarily has a personal issue with treating you in particular because of something in your notes; there may be a much more banal explanation.

  • You may well be right, their may not be anything in my notes, He said when I saw him the first time that I obviously had an Adrenal Issue ( I gave him a copy of the ASI test done through Dr Peatfield) he said that when I came back to see him he would do other tests, he also agreed that the Synthan Test only shows up Addisons Diease - I went in yesterday and he just said "you don't have an adrenal problem" His attitude towards me was completely different, from showing concern and willingness to help to being cold, careless and basically saying that my illnesses are not to do with the Thyroid but something else. He is now not back in the surgery til Mid Feb. Something has happened - wether it is something in my notes or wether he done some research on Dr Peatfield and didn't like what he said - The Truth i do not know

  • HI Kitten-whiskers.

    It does sound like something changed. I had made that comment because I know I can become paranoid about what the doc knows that I don't and that can give me dark thoughts so I just wanted to offer the possibility that it may have been a completely unrelated thing. Weird that he said you had adrenal problems and then that you didn't. No wonder we're all so suspicious here!

    You could always ask him why he changed his mind about adrenals, maybe act like you think it might be helpful to know why his opinion changed - ? But if he had that attitude I would understand if you just never wanted to see him again...

  • Hello, I have requested a copy of my medical notes and if that doesn't show up anything, I will ask him why the complete change in his attitude towards me. It is a good point though - I do hate the docs and its fair to say I could be thinking along the wrong lines - but on this I think my thoughts are justified.

  • yes that is a good point.

  • Go to an Integrative Physician and you will see a major difference in treatment as well as attitude to your illness. I have done this, and yes you do have to pay for it but what price can you put on sanity and health? I went round the boards from the NHS doctors and Endos and for 17 years I suffered, so please do not waste your time on these robotic NHS badly trained doctors, they ALL say the same rubbish because that is what they were trained to say! Go to a holistic/integrative physician, and you will not only see a world of difference but your health will finally get better and you will no longer be ignored, made to feel crazy and given more toxic pills to make you more ill! Please know I did and it made all the difference! Best of luck to you.

  • I agree with you, I have given up on the docs and endros, they are all very similliar. I did go privately and he did help but still very ill. I spent all the money I had on that so it isn't really possible at the minute.

  • Have you tried elimating sugar, wheat, gluton and milk from your diet? These are really bad for many thyroid patients and no endo will tell you this. Have you seen Mary Solomon's page on thyroid on about.com/thyroid or read the book, "Stop The Thyroid Madness"? Google them if you need to find them but you can see there is much more then we are told about real health care in thyroid issues. I also subscribe to Gena Noland's site on Facebook, called, "Thyroid Sexy" and she and Mary just wrote a book together. There is also "ThyroidMom" a blog which gives lots of help as well as good advice for many different issues and all these sites are FREE. You are too young to give up...many have made it through using these sites and references. It is possible when you get the right info and the right diet and practitioners. Maybe you got am Integrative Physician that was not as astute in thyroid issues but I know mine is. Money...well, who has money these days?? No one I know! But if you ask you may be able to get some discount..you never know and you might...keep going..the darkest hour is usually before the dawn! :-)

  • I did elimate Sugar but not the other ones. I will try that.. I thought of doing a detox. I do need to be more positive and believe I will get better. Thank you for your help - great Info here

  • try this from Facebook and do a search for anything to do with thyroid on facebook, there are so many advocates on there and lots of good help and support, like this one: facebook.com/photo.php?fbid...

  • Thank you so much, all this wonderfal advice hs given me some hope. I am so glad you are well to, I know it takes time to get the correct medication and at the right time - It can be hard and alot of trial and error but with everyones knowledge and support here - their could be light at the end of the tunnel - thank you x

  • I am not "well" yet Kitten-whiskers but am slowly working on it. The first thing which my Doc is working on with me is my adrenal exhaustion and then we shall conquer the thyroid because as he rightly said, we must repair this first before we tackle the thyroid. No other doctor would even do the test for this but him. It clearly showed I was suffering from adrenal exhaustion. This then led to the understanding as to why I was so anxious, tired and could not sleep...all symptoms of adrenal fatigue. It is a process...but slowly working with the right people is half the battle, the other half is of course down to us. The thought that you "take a pill" and all will be well again is a joke! No pill can redeem your health, but many things working together, including your diet. It is obvious but finding the right people and advice is essential with the right tests. I also think this woman is amazing...in fact there are two so here they are: thyroidchange.org/ and another is: facebook.com/ThyroidDietCoa...

  • Sorry I jumped the gun. I am amazed you got a doctor to help with Adrenal Exhaustion, Can I ask what test he done? Everytime I mention the Adrenals they clamp up and get me out the door asap. I did the ASI through a private Dr which showed I had Adrenal Exhaustion but they are not interest. I don't know if you have seen the new Paul Robinson Book - this focuses on the Adrenal side of it - looks fantastic. His last book was impressive. I have ordered a copy. He has some U tube clips - It may be helpful to you - I think he is brilliant

  • I did an adrenal spit test, which was sent away to a lab and then got the results at his office..clear evidence I was way below par on the level of adrenal function. Thanks for the book and you tube link. I hope now you are well armed and ready to go to battle again. Wishing you all the best. :-)

  • Hi Kitten whiskers,

    I had the same kind of thing and wasn't happy with the way my surgery or Dr were treating me,enough was enough and i had nothing to lose so i put in a written complaint and made an appointment to see my doctor. At the appointment i was polite but firm and i voiced how i feel i am made to feel guilty when i come to see a Dr,you say i am not fit for work yet am am made to feel guilty asking for a sick note so i asked what was what,am i ill or not? Of course you are was the reply,my reply was then start treating me as though i am and so on.It cleared the air,i received a call from the manager of my surgery,messages have been added to my notes and i am getting very good treatment now,be firm and tell your Dr you are not happy,i asked mine why is it you can't talk to your Dr these days and why are you so cold and uncaring? If you are not being treated the way you want then you have nothing to lose and perhaps everything to gain by talking to them and if that doesn't work then at least you tried and you can move on to another surgery.I wish you all the best,please try it as it worked for me.

  • I was thinking along the lines of making a complaint, I will be requesting my notes to see what has been said about me, but I need some treatment now, my doc is not back in til mid Feb. I can't go on like this

  • Omg I have been there more than once and I can tell you that you will feel stronger once you've recovered from the shock of having your doctor pull the rug out from under you. Just give yourself a little time to take it in and process it and come here to talk about it when you're ready. When you get your breath back you'll be able to use your totally understandable anger and sense of righteous indignation and you will get to the next level. It will happen. Just give yourself a little time to feel bad about this because you're RIGHT, it is a super disappointing and horrible thing to happen to you and there's no need for it. You deserve better. You will get there.

  • Thank you thats very sweet

  • When your hopes get built up that, finally, someone is going to help you recover your health, considering that they have been studying their subject for years, it is more than a disappointment, it shakes your faith in the profession altogether and makes you wary of seeing another in case you get the same reaction.

    This is a link to what Dr Lowe thought of the Endocrinology profession in the USA and cursor down to the date December 18, 2003 to read the whole answer.

    Extract:

    If you insist on being treated by an endocrinologist, I wish you luck; you’ll need it. I believe that a few—precious few—are cordial human beings and excellent clinicians who work collaboratively with their patients. In my experience, however, most are arrogant, rude, and dictatorial. Worse, I’m convinced that most are thoroughly ignorant of how to help hypothyroid patients overcome their symptoms and recover their health. You may eventually find one who’ll interact well with you and treat you properly. But to find that one, you may have to sort through many who’ll sustain your symptoms and insult you in the process.

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

  • shaws of only we had doctors like dr lowe, he so speaks the truth.

  • Many doctors are very good, it appears to be when treating thyroid gland problems it all goes down the drain. Definitely, the guidelines laid down inhibit most of them.

    Humane Geniuses are few and far between, and I think Dr Lowe (RIP) was definitely one.

  • Hello Shaws,

    Dr Lowe was spot on, their is so much evidence saying the docs are wrong but yet the treatment offered never changes. I really am feeling like I can't cope, I do my best to hold down my job, trying to finish my coursework, reading all these thyroid books along with all the general tasks, and I am exhausted but just can't sleep. Something has to change

  • So sorry Kitten whiskers - I have been encouraged and discouraged so many times too, it's hard - are you seeing Dr P again soon? (I looked back a bit to see if I could help somehow and seeing Dr P is such a positive step on this long rocky road). as one person said to me you don't go into a GP visit depressed but you sure will be when you come out!

    I apologise I cannot help in practical terms except give a little support by responding as a fellow sufferer.

    You must turn this around, read up, learn and be an expert on yourself (you already are!). Did this Doc anger you? (mine did) use it to your advantage, don't let it go inwards, it's not you, it's so many of us being let down.

    As Mary says there are articles to take to your GP - we should all bombard them with knowledge - they need it! (ask him if he missed the Thyroid lecture?) Have you got Dr Toft's book? available from Chemists for £5 - 'Understanding Thyroid disorders' it's not perfect but a start - you could take that and even leave it with him to learn! (he was the Queen's doc - if that's not good enough I don't know what is!) Hang in there sweetie, we are here to listen Jane :D xx

  • Bless you, Your all a right, I know it's not just me but the doctor did anger me - he said that all that was wrong with me was a slightly underactive thyroid and that I should be able to just take a quarter of a tablet of T4 a week and be well, when I mentioned all my terrible symptoms he said it's proberly caused by something else. I know that is not true. Doctor Peatfield is a wonderfal man and in my eyes a real hero for standing up like he does but my problem is the Thyroid medication - I always have a reaction to it - whatever form it comes in, Doctor Peatfield proved their was an Adrenal issue but They keep saying my adrenals are fine, I asked if he would test my Aldosterone levels - his reply was I won't do that unless your kidneys are failing, I know you can not get Aldosterstone without prescription. I go without My thyroid medication almost completely because I can't bare what happens when I do

  • A low dose of levothyroxine can make things much worse - GP's again seem to be unaware of this. Extract from Dr Lowe from question dated April 22, 2007:-

    There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms. I’ve written about this before on drlowe.com.

  • Hello Shaws,

    Yes I remember that, If I take half a tablet of T3 - I get Hyper like symptons - suggesting the medication isn't reaching the cells properly. I can not take larger doses, this is the problem for me. My Doc said I should have quarter of a tablet of T3 - do that for three weeks then try to increase it.

  • I am sorry T3 isn't working, yet, as you hoped. It is disappointing. Naturethroid is hypo-allergenic which might suit you.

    I wonder if you may be sensitive to something in the T3, i.e. this is from Dr Lowe regarding levo:-

    Dr. Lowe: Your wife may be having an allergic reaction to some constituent of the thyroxine tablets she is taking. It is extremely unlikely that thyroxine molecules themselves are causing the reaction. Thyroxine is what we call an "orthomolecular" substance. This means that thyroxine is natural to the human body and necessary for health. Allergic reactions to orthomolecular substances are incompatible with health and extremely rare.

    Your wife can test whether she's having an allergic reaction by taking an antihistamine, such as 50 mg of diphenhydramine HCL. She should take the antihistamine an hour or so before taking her next dose of thyroxine. If after taking the antihistamine, the thyroxine preparation doesn't cause the reaction, it’s safe to conclude that she’s having an allergic reaction to some constituent other than thyroxine in the tablets. In this case, her doctor should switch her to another brand of thyroid hormone.

  • Hello Shaws

    This is brillant, a test to find out - I will have to try that. Can you get Naturethroid on prescription - I did look at the price privately and its a bit arm and a leg. Thanks shaws - this is a great bit of info

  • Yes, Naturethroid can be had on a 'named Patient basis' from Boots etc:-

    thyroiduk.org.uk/tuk/treatm...

    or if you have to go private:-

    thyroiduk.org.uk/tuk/treatm...

  • Fantastic - Thank you

  • Im not going to add anymore but echo everything everyone is saying. I will add, when you have rubbed yourself down and straightened those shoulders, hold your head up high, grit your teeth and go in there and make that appointment...and while there take along your request in writing for a copy of your medical notes so you can see exactly what is in them that would have made this Doctor change his attitude. That way you will be prepared when you do go back to challenge what is in there. If its wrong you have a right to make a complaint.

    Remember, when you are there, you have all of us with you sitting on your shoulder, whispering in your ear, willing you on and shining torches in your face to lighten your tunnel.......you are not alone! :-D

  • Thank you very much, it really helps xx

  • Shoot an Endo and save a thyroid patient!

    Kitten-whiskers, would you consider asking for a psych referral. A good shrink will do a physical work up to eliminate physical illnesses mis or undiagnosed, particularly hypothyroidism which can masquerade as mental illness and full blown psychosis.

    If you are ill with depression you might, irony of ironies, be prescribed T3 which has improved the efficacy of sertraline in particular.

    Your life isn't over at 33 but your struggle may continue for a while. If you have sufficient money you might consider private blood testing and treatment an investment. Check out ThyroidUK main site for labs and contact Louise Warville for doctor recommendations.

  • Yes but it might take a while to get the T3, my psychiatrist told me she had to go through all the antidepressants before prescribing T3. After 7 different antidepressants I did my own research and found NDT and T3.

    Perhaps pretending to take all those pills and then get your T3 would be a good idea... What a sick world we live in. x Kat

  • I am taking T3 (which I buy privately) and when my body excepts the medication (tiny amounts) - my symptons do ease. I do still think I have an Adrenal Issue as Dr P said, but I don't think their is more to it than that. I am very down in the dumps now because I can't get the medication in and am full of pain with no medical help, even my dad is giving me a hard time - I am really doing the best I can, but it's never good enough - so I think that I would be allowed alittle depression. The docs would really go to to town on me if I said I was depressed - that would be in Anti drepression tablets and all parts of my Illnesses being put down to that. I don't want to give them that x

  • Yes, I think you could well be 'down in the dumps' when things are going against you but keep your chin up, you can get well but it is a big effort. They are willing to give any other diagnosis and medication rather than treating the thyroid gland..

  • Thoughts with you. Things will get better I know it x

  • Thank you - I wish I could believe that x

  • Hey Kitten Hope your feeling a bit better this morning and are buoyed by all the support.

    dig deep - It's very hard doing this on your own,try to get a friend relative to support you.

    You always have everyone on here to listen to you and advise. Thank god for this site. Keep on posting if it helps a bit to write it down.

    Cx

  • It really does help - your all wonderfal. Thank you so much x

  • I got to the end of my tether (after 5 years) and told my brother that it looked like I would be like this for the rest of my life. He rebuked me and challenged me to research it more and use the internet. I did and discovered Paul Robinson's work. I took it forward and over the following year regained my health. Problem was that my body can't change T4 to T3 but nobody knew that, nobody tested for it and nobody understood it (neither doctor nor endo). I am now on T3 only and well. Don't give up; the illness makes you feel like that. Listen to everyone above and know that there is a way out - you just need to find the right solution for you.

  • It's great to hear someone is actually well.I have Paul Robinsons book and it is fantastic but I still can't take the medication. I have just ordered his new book on adenals. I do know that if I can get the T3 in, I will be well but I haven't as yet been able to. I was hoping the doc would check for other things to see if anything was affecting the receptor uptake - like the acid level in my stomach which plays havoc with the production of red and white blood cells but he couldn't give a monkies x

  • I am also in my 30s and have spent the last three years suffering due to incompetence of doctors. The reality is that doctors know little, if anything, about this illness. The result is poor and often wrong advice. You need to educate yourself and use this information to find a competent doctor and get correct treatment. I have now found a private GP who seems to know what he is doing. My advice: Don't waste time on doctors that have already shown that they are not up to the job. This is what I did and I regret it. Find a good doctor now - I found one through the Thyroid UK list. Good luck and don't give up hope...

  • Thank you - you are completely right.

  • If its any consolation you're not alone in how you feel. I was so excited when I saw the consultants registrar in July as he looked at my notes and said he didn't think my body was converting the thyroxine right but as my TSH was 79 he immediately doubled my dose from 100-200mg a day to be reviewed last week. I have persevered with the dose even though as soon as I take thyroxine I feel horrendous, Tired all the time, brain fog, severe depression. When I went back last week I saw the actual consultant who said my TSH had dropped to less than 0.01 so I was on too high a dose of tablets and he dropped it down to 125 apologising for putting me on too high a dose. He is adamant my depression is down to just depression and offered anti-depressants which I don't want as I only feel this way when on the thyroxine. Its so bad I can't socialise and am really really struggling to hold my business together as I literally just burst into tears and feel so down. The consultant I'm seeing specialises in diabates rather than thyroid so I'm at my wits end now and absolutely dreading xmas and new year with how I'm feeling. So rest assured you're not alone.

  • Hello Lowlou,

    I am so sorry your going through it to, It sounds like either you have the conversion problem or adrenal Issues, have you gone to see Dr Peatfield? I felt horrendous on T4, well all of it to be honest. Yes when I saw my doc he said my stomach probs were "proberly down to Chrones Diease (amazing when he hadn't examined or barely even listened to me and that I have fibromyalgia - I said of course I have fibromyalgia - you are not treating my Thyroid problem - of course I got no answer, and all the other symptoms are down to other things - sheer ignorance. So I know how you feel. Would recommend seeing Dr P though - he is great and he has helped me, in all honesty I don't think I would still be ticking if I hadn't seen him x

  • Oh the old Fibro Cherry! Funny that the diagnosis is always that when they don't have time to even examine you! Complaint No1 on your list……...

  • Will do, I have requested a copy of my notes. Then its time to go to town

  • Hi, sorry you are feeling so low. I was only diagnosed with hypothyroid this year but I was made disabled aged 30 following a car accident on top of joint hypermobility syndrome leaving me with severe mobility problems and a condition caused basilar artery syndrome which causes fits,mini strokes and a number of othrr symptoms. I felt like you, that my life was over but then I started going to riding for the disabled and did that put my problems in perspective, what I was dealing with was peanuts compared to some other riders there.

    Sorry, I hope you don't think I am being unsympathetic, far from it, but I am now 49 and have learnt to come to terms with physical limitations and in time I am sure you will feel much better about life.

    Hugs.

  • bless you scatterbrain.

  • Bless you - I am so glad you have turned your life around and off course you are right their are people much worse of, but I am afraid I see it differently. I do not want to spend the rest of my life this way - It's a miserable existance, I live with my dad and he can be a nasty piece of work, I have always been a loving and supportive daughter - and I put his treatment towards me down to his axiety condition, then I have my mother try to stab me - that leaves emotional scares, My health is falling - whats the point

  • Oh Kitten-whiskers, (it sounds like a very difficult situation) may I suggest if you can, get away for a while, you really need your own space to concentrate on yourself and your own health first, sometimes we just have to be 'selfish' (wrong word really but that's how we feel). It's your life sweetie, sometimes you must put yourself first.

    Easy for me to say, I know, but sometimes, we can only help others from a distance (hugs) Jane xx

  • Thank you Jane - I have taken everything on board and it is all much appreciated. I realise I must start thinking of me first as my health is bad enough already x

  • Dear Kitten -whiskers

    I am so sorry you feel like this, you will get better but it may take you some time, please don’t give up.

    I am not going to duplicate the good advice you have already been given but I would add that you may wish to consider if your home circumstances are adding to your health issues, stress can play havoc with your thyroid - I know from experience as my father was the same as yours. Demanding and unreasonable despite everything I did for him. In the end I had to cut him out of my life due to my own poor health, he and the rest of the family didn’t like it as it meant they had to deal with him and look after him. Allow yourself to be number one and this will help you on the path of improving your health.

    Hugs xxxx

  • Hello

    I have often wished I had the strength to get away but in all honesty I don't. I know I am a fool to myself and my health is so bad and he certainly does add to the stress. I thought he would come good with me being so Ill but he hasn't. He is cold, selfish, lazy and a drain on me finanically but I would worry If I left - I couldn't continue to support him and rent a place on my own. None of his family have anything to do with him (that was his decision) and he has no friends so he would be alone. I admire you for being so strong

  • Hi - I wasnt strong - it was one of the hardest things I had to do. Is there no one you can talk to about your situation? I went to counselling - only a few sessions but it made me realise that I had to take control of my life and other people had to take their share of the responsiblity.

    Please send me a personal message if you would prefer

    xx

  • Hello,

    I am sorry I don't know how to send a personal message, I will have to look into that. I completely agree with you and that I must do something but I just can't. Even after what my mum did, I still see her - not very often and never alone - I guess its because it's family. I need to toughen up x

  • Kitten, have you taken nutri-adrenal & the thyroid support version? Just wondering whether they may support your thyroid in addition to the small thyroid replacement you can tolerate.

    I second eshopper about taking responsibility for your life and make your father take responsibility for his. Being surrounded by negativity and nastiness will not enable you to recover your health.

  • Hello Clutter,

    I have had Nutri Adrenal & Nutri Thyroid - no good for me either. The T3 has been the best for me as I do get benefit along with the nasty effects. I have just ordered Paul Robinsons new book - I am looking forward to that - it focuses more on the Adrenals - fingers crossed thats all thats wrong

  • You will survive, You will be surprised how much you can take.

    In terms of doctors...That's how it is with the doctors, they change, especially if you become too 'needy'= too costly, we cannot demand anymore, NHS system is abysmal here, money counts not the patient. My only advice: try not to give up. Try to educate yourself as much as you can about your conditions and do not rely too much on doctors, you will get disappointed. Sad and brutal but true. I am 38 and I was going through a hell my entire life, it has been much worse since I have been suffering from hypothyroidism... I am still living in a hell, but I am still alive :)!! I hope that I will continue to be and I wish you the same. Take care Xxx.

  • Thank you Edysia, I hope things improve for you. I have got the new Paul Robinson book on the way - I am sure that is going to make a big difference. I am giving up on the doctors. I am going to make myself better and proberly move to another new surgery - so I have no memory of the rotton treatment I got. Take care x

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