At the end of my tether :-(

I hope someone may be able to give me some new information as the specialist has not sorted it out in over 5yrs.

My daughter (27), has uncontrolled hypothyroidism, yep, over 5 yrs now it has been out of control. Her last bloods were TSH 244, T4 7.9 and T3 1.6. That is the best TSH we have seen in years but obviously that is very much out of control. She takes 1,000 mcg levo per day (at night) and a small dose of T3. Her specialist only ever does blood tests and once in the last 5 yrs she spent most of the day in hospital having lots and lots of bloods taken at regular intervals.

Now, I have read about malabsorption of levo, it's rare but it does happen and in those cases the patient is given IV thyroxine either into a vein or into the muscle. Now, has this or similar to this happened to anyone else here? If so, have they managed to get you under control? What tests did they do to help sort out your problem? Her organs are starting to fail, she fears she is going to die soon and as a mother it is tearing me apart to hear such things and to see her body giving up on her. She has put on between 15 and 20 stone in weight in the last 5 yrs and that is seriously adding to her deterioration. If you can help in any way possible please let me know.

Many thanks,


71 Replies

  • I have absolutely no idea but I certainly hope you find an answer quickly~

  • Thank you for your kind thoughts Penny xxx

  • Dee, I know this is my second post, but I forgot to mention that this seems to be directly related to her childbirth. Has she ever had a hormone panel done?

  • I do not know, maybe her endo will pull his finger out after a kicking from her GP and actually do some tests.

  • deelicious, the reason for the lack of absorption needs to be determined. Is it Coeliac disease? Is it Helicobacterpylori infection? Some other infection or parasite? Is there pernicious anemia? We need a good GI specialist here.

    Yes there are people, who for whatever reason do not aborb the thyroid meds. First you need to find out why. If there is no why, then she needs to have her dose titrated up to gigantic levels in order for enough of it to be absorbed so she's healthy.

    Levothyroxine is cheap. Some people do better with a once a week bolus dose. Flood the gut with a huge dose and this may maximize absorption under adverse conditions.

  • Kim is at the stage where she just doesn't want to talk about it anymore. It really gets her down and although I have tried to get her to listen to me so she would talk to her endocrinologist she just blanks me or tells me to stop as she can't take it anymore. I can see both her side and mine. I am now considering sending a letter to her specialist letting him know what she has told me (truth or lies I honestly do not know) and ask that they look into malabsorption no matter what is causing it. The test for it is just so damn simple that I cannot believe they wouldn't have done it before now. The problem with such high dosages is that should it be caused due to intestinal problems and they change her antibiotics to a different one (or two) and it clears a problem that caused the malabsorption it could kill her, the normal (I hate that word) dose of levo is between 50 mcg and 200 mcg. Kim is on 5 x that amount and should her body suddenly start absorbing it an overdose of that amount could be catastrophic to her organs. But, yes, I agree that they do need to do something to find out why such a high dose of levo is hardly touching her levels. xxx

  • Welcome to the forum, Deelicious1.

    It appears your daughter is extremely resistant to thyroid hormone. Is she being treated by a thyroid specialist or a general endocrinolgist?

  • She is under the head of endocrinology at Torbay Hospital, Devon. Never met the man personally but I have suggested she get a referral to another endocrinologist up at Exeter.

  • Dee, email for a list of member recommended endos.

  • done, and thank you for suggesting it :-)

  • Dee,

    Are you in the UK? Your daughter should have been referred onto a gastroenterologist or tertiary thyroid care long ago.

    What is strange is she appears to be not absorbing the levothyroxine yet has put on so much weight. Most malabsorption causes malnutrition. Are you sure she is taking the levothyroxine? Sorry to ask the question but it would be the most obvious answer. With these extreme blood test results she must be in a poor state and have considerable difficulty remembering things.

    Where does she get the levothyroxine from? Which brand and have they tried other brands? If she is remembering to take the levothyroxine they should give her a trial of liquid thyroxine. If that doesn't help it is reasonable to put her on liothyronine (L-T3) only, at least until they resolve the levothyroxine issue.

    What has the specialist said about the failure to normalise her blood levels of thyroid hormone?

  • Even my doctor cannot believe that they have not found the cause yet and I am in Rugby, Warwickshire and she is in south Devon. I am going to have to google tertiary thyroid care. There are cases where the malabsorption is thyroxine specific, it is rare (and a fascinating read) but easy to find out and test for it - just takes one week, that's it, one (insert swear word) week. If confirmed then they can find out if there is a cause for it but they could start her on IV thyroxin and teach her to self inject. They have her on T3 and it made a tiny difference, so tiny they stopped it. Obviously they thought she was not taking the tablets so they made her go into her local surgery to take the tablets, they did bloods before and after and no change and she was on 1mg thyroxine at the time. Liquid thyroxine? is that taken orally or injected? Before she was pregnant everything was fine, she was overweight but after having Amber everything went downhill for her levels.

  • Her weight, is from Myxedema, skin thickening and fluid, i have no doubt.

  • I think the same, she is so puffed up it sometimes means that she cannot walk as her feet won't allow it as she cannot bend at the ankle as the tops of her feet are stretched so tight it feels as if its going to rip open. Tried talking to her again last night but she blanked me. sigh xxx

  • You can give her all of the information in the world, yet, in her mental state, she may not listen.. truly, she is being terribly mistreated by doctors. They will wait until she is in a crisis before they do anything much. As you may know, t4 needs to be converted by the body into the active t3. In her condition, i believe t3 would be a huge benefit, but her stomach needs to be bypassed. I can't say i understand her attitude. I never stop researching and trying.

    I am sorry that you are in this situation.

  • Her doctors need to be reported to some authority.

  • Hi I'm same situation my body is not absorbing T4 or converting it my doc just kept waking my levo up and up to the point it just poisoning me the doctor has misread or not taken any notice of my bloods . Managed to get to see a endo for first time in 13 yrs I think. But he said it has only stopped working for me since 2011 . I have mydexma or something. He took 1 look at me and said you really are not well .I was gobsmacked tbh. Not well was a understatement lol. He took my levo straight off me and put me straight on T3. Liothyronine. I'm very lucky and he also said they don't give this medication out lightly. It's been 2 weeks and I am feeling better but think my body is still in shock with this hormone it's been lacking for 4 yrs. I hope she gets sorted babe. I know this is a long recovery I got but time will tell I guess xxx

  • Razzar so sorry you have gone through this too :-( What broke me was the day Kim phoned me in tears saying she was dying. A GP at her local surgery could not believe that Kim was standing let alone not in a coma with her TSH levels (which were even higher than they are now). I suggested to Kim to ask for T3 at least 2 years before they tried her on it as an addition to the levo. I really wish you all the very best and a speedy return to good health. xxxx

  • Prob is alot of endo are reluctunt to prescribe it. And docs have become so ignorant. But thank you. Hope she recovers soon x

  • I agree with jimh111.

    It would be unlikely that she could not absorb ANY Levo but could absorb all other nutrients , foods, drugs?, etc.

    Is she suffering any other MAJOR MAJOR deficiencies?

    If not ...then maybe..... she is absorbing but TOTALLY unable to use ANY of this possible..?? After almost where is all this Thyroxine going..?? RT3..?.. All of it..?.

    I would be seeking a gastroenterologist as I would suspect some sort of gut issue...even if it's as gabkad suggests....some intercellular bacterial infections coupled with a massive immune response TOTALLY blocking ALL thyroid hormone receptors.

    There must be so many clues for the specialist who knows where to look.


  • When it comes to the human body we should not be surprised by anything but we always are. I know she is anemic but cannot take iron as it messes with the absorption of levo (oh the irony - pun intended). As for other deficiencies I am unsure at this time. She looks at a lettuce leaf and will put on weight, she can hardly move, walking around shops is a no go unless absolutely necessary, the docs want to give her a gastric band when the levels are fine but that will not be necessary as she has tiny portions of food (kid size) and its healthy food but still the weight goes on and on and on. Her kidneys are shutting down, constant infections, its all tearing me apart. This is the link to the case of an Indian woman who really has levo malabsorption.

  • Iron can be taken away from her thyroxine and with vitamin C to aid absorption. If she's low in iron it may not be helping her.


  • catch 22, iron tablets reduce the absorption of thyroxine so they won't give her iron tablets as its more important for her to have what little benefit from the levo that she does get.

  • Only when you take the two medications together. You need sufficient iron in you to absorb thyroxine.

  • She is gaining weight from Myxedema and a build up of fluids. Not from what she is eating.

    She needs to go be given, in my opinion, large doses of t3, maybe by an IV of it and needs to have the reason for non absorption looked at, at the same time. It must be terrible for you, as her mother, to watch this happening and not be able to get through to her. She probably is not in her right mind at this point. The brain swells with fluid also and can actually cause a kind of maddness.."myxedema maddness".

  • I would just like her endo to listen to the GP (who seems to have listened to me). Not just treat the thyroid with levo and T3 but look at another method to get it into her and find out why the tablets are not working.

  • i agree..they need to find out why . She must not be absorbing nutrients either. Medial care is terrible these days..everywhere. I am so sorry for you.

  • Dear Dee, I am horrified to read this and so sorry for you, for you and your daughter. This suggestion may seem 'off the wall' but I'll explain why I'm making it. My son at 17 was diagnosed, through biopsy so without doubt, with a kidney disease for which there was no cure or treatment and he could not have transplants. Like your daughter facing an early death. I took him to a homeopath who gave him a remedy. He was very thin by this time, after the remedy he gained weight to normal weight and now, 15 years later, as if by miracle he is alive and well and there is no sign of the disease.

    I know there are questions around whether homeopathy works or not, but it costs little and might be worth trying.

    Whatever you do, I send you both love and hope that something happens to help you both soon.


  • I am desperate to try anything but at the end of the day I can only do so much, the rest is up to Kim. I am so happy for you and your son and I wish you both good health xxx

  • Hi again, I've been away in France at my son's wedding, so keep your hopes up but I know exactly what you mean about there being only so much you can do. I can imagine you treading a very fine line, always doing the best you can for Kim but having to find ultra sensitive and tactful ways to approach anything. It's tough and lonely but there are others of us who do know what you are going through and our hearts are with you.

    Wish I could help xxx

  • There could be an adrenal problem as well. So many things to think about when something like this happens. jimh111 is right, she may well need T3 only. Can you change specialists.

  • I want her to change specialists and she was going to do that when Dr Dyer told her she was to see one of his associates who has done nothing new (headbang).

  • I came across this paper (you can click on 'pdf' under 'Formats' to get a nice printout). I don't understand all of it but it is clearly a similar case. I wasn't aware of malasorption cases with weight gain.

    So there are a number of options to try:

    1. Liquid levothyroxine.

    2. Liothyronine (L-T3 is much better absorbed than L-T4).

    3. Levothyroxine by injection.

    Given the severity of her hypothyroidism and the amount of time they have messed around (not the term I want to use) I think they should consider the injection route immediately. The only problem is I'm not sure if injectible levothyroxine is available in the UK, in which case they should try options 1 and 2.

    I believe there are also kidney disorders than can affect levothyroxine absorption.

    I think you should kick up a fuss and insist they take urgent action and perhaps refer her onto a more senior specialist. It is not acceptable that her life is being wasted like this. Even if injection levothyroxine is not available in the UK she has the right to have it imported if it is proven she needs it.

    Try a polite firm request to get her condition resolved quickly. If this does not work submit a formal complaint and maybe enlist the help of your MP.

  • I am not aware of any injectable levothyroxine (T4) products in the UK.

    Injectable liothyronine (T3) is available and licensed.

    I completely agree with jimh111 that it doesn't matter where they have to get it from, it is essential that injectable products are tried.

    There are some incredible stories of people taking 3000 micrograms and more of levothyroxine every day - and showing absolutely NO signs of being overdosed. Why have they stopped at an arbitrary 1000 micrograms?

  • Hi helvella, I have no idea why they have stopped at 1,000 mcg, maybe they follow the math and think that if 1,00mcg lowers the TSH by 50 that it would take in the region of 4,000 mcg per day to lower her TSH down to near normal levels. 40 tiny tablets each day, somehow I do not think many people would stick to that especially as she struggles to pop the little beggars from the pack and that's just 10 a day. xxx

  • Although that looks sensible, it simply doesn't work like that.

    High TSH levels are usually a combination of severity and how long the person has been hypothyroid.

  • I contacted the health visitor and doctor about her lack of height and the fact she was overweight when she was 7, but Kim refused to give blood so it was age 9 when they diagnosed her as they told her they were taking it even if she said no. At that time she was only awake for maybe 3 hrs at a time and spent half the school day asleep in the corner of the class. With meds she got better and although she didn't lose all the weight she had put on and didn't grow to expected height (I am 5ft 8in and her father 6ft 1in) stopping at 5ft 4in isn't all bad. Her mental abilities improved and she past her exams at 16 with flying colours. She did go through a stage of not taking her meds and that came with the expected consequences, moody, tired, hair loss, weight gain etc. She got passed that stage and although she remained overweight (1 - 2 stone max) we got back the real Kim. I am guessing that this set of problems occurred when she fell pregnant. She had the implant and was told to expect light to no periods and that's what happened, but at a docs appointment she was told she was 7 months pregnant, of course, not knowing meant she didn't get her bloods checked and meds increased as most women do when pregnant and hypo. Absolutely nothing wrong with Amber, in fact, she is bright as a button but Kims body has not recovered thyroid wise. Her tests have been giving out stupidly high readings and its taken over 5 yrs to get to where she is today. But she won't talk to me about it. She says it stresses her out too much and to stop going on about it all. Yet a few months ago (over 6 months ago), she was happy to look for another endo. Her change of mind is probably down the the thyroid problems but she just does not see it and that too is part of uncontrolled thyroidism. sigh. So, to actually give you the information you almost asked for - at least 5 yrs (this time around). xxxx

  • Jim I could hug you right now. I spent a week with her (only just come home) and she really doesn't want to talk about it but I will not give up. The way I see it, if they can do levo through a drip they should be able to give by injection, its just a case of mixing the powder with a liquid and shake until clear. I would imagine saline but guessing is naughty so maybe I shouldn't go there ;-) I have now read the paper you gave me the link for and almost cried with joy that there was another paper detailing a case of malabsorption. Would take little effort to try her on injection to see how she reacts and if positive then spend the money on the tests. The longer she waits the worse she gets :-( Thank you so very much for finding that :-) xxx

  • Dee,

    I'm not sure they can just dissolve the levothyroxine tablets as levothyroxine is a lipophillic substance. i.e. it is fat based and so not soluble. The appropriate way is to get the levothyroxine developed for injection which I belive comes in the form of a special powder. As an interim measure they could give her more liothyronine, I don't think it will cure the problem but might improve her condition in the short term. She will be very tired and apathetic, this is a consequence of severe hypothyroidism.

    Where do you live? Someone here might know a good specialist they can recommend. The NHS should be sorting this out.

  • Sorry Jim, not dissolve the tablets but the thyroxine they us for IV is in powder form (I read it just a day or two ago) although nothing I had read up until today has been "in" the UK, one was india and your info was USA. xxx I am midlands UK and Kim is south Devon UK. I have just sent off an email to get a list of member recommended endo's but I am also going to ask my doc to get me a list of the best endos within the UK. I just want to sit and cry, both with sadness over the situation and with joy and the support I have found here. xxxx

  • deelicious1

    just google subcutaneous + levothyroxine

    There is a load of info out there.


  • he he he, got 16 tabs already open a few more won't hurt :-) many thanks xxxx

  • Hello Dee, I am so sorry to hear of your daughter's plight. I have undiagnosed autoimmune disease caused by thyroid but my TSH is nowhere near as high as your daughters. I don't pretend to have the answers but can you take her to a private doctor who can prescribe alternative thyoid supplement, she may do better with armour or another type? Also her diet is paramount, have you tried juicing to rebalance body. Look up Jason Vale Juicemaster on google and watch a documentary he made called Superjuice Me. He has turned around many people's illnesses with his programs. If you cut out wheat and dairy your daughter's health should improve. Reducing meat to a minimum is also very important to bring the body more into an alkaline than acidic state. Do you eat organic food, if not meat and dairy particularly are swamped in injected hormones to fatten up the meat thereby causing weight gain and unbalance hormones. In your daughter's case I would cut out all meat for at least six months. Vegetables that are not organic are covered with herbicides and pesticides that are toxic to humans and wildlife that the body also cannot break down. Cleaning up the diet and getting good, nutritious organic juices into your daughter I think may do a lot to start the tide turning in the right direction. Good luck. X

  • Hi Elfmaid, personally I would give almost anything a go but this is down to my daughter, she may be my baby but she is an adult so at the end of the day I can advise her, beg her and shout at her in frustration (its coming to that point) but it will be her choice. xxxxx

  • I would urge you not to lose you rag with your daughter. I've written below about my experience of being so weak, but I lost a lot of friends and family because people disagreed with how I handled my illness, wanted me to try their suggestion, or were impatient for me to get better and thought it was my own fault.

    People really don't understand what it means to be so immobile. It took about 120% of what I was capable of to prepare and eat 3 meals a day, drink water, and get myself to the toilet and back. Anything else was a luxury, including thinking and raising my eyes to the TV. I just lay in bed and listened to it -usually didn't even understand. I also battled intense low self esteem and suicidal thoughts, which are both symptoms of low thyroxine

    A cruelty of this condition is that the symptoms prevent you from being able to research getting better.

  • Her temper is a lot worse than mine and its Kim who is more likely to loss it and put the phone down than me do that to her. She has a 5 yr old daughter and works part-time, how I really do not know. Over the last few months she has been regularly sick (possible hiatus hernia) and had a lot of kidney infections. We think she is going from stage II to stage III kidney disease. She is aware that she is not always rational when it comes to her thyroid but as she says, she can't help it and she is right, until its sorted she will always have bad symptoms to deal with. xxx

  • Wow, or sounds like she is achieving an awful lot at the moment! I don't know how she manages it. I am still not working because i am mostly house bound. It must be taking a lot out of her to work so hard. Is giving up the job an option? That would make a huge difference, as this kind of fatigue gets 'payback' for being active.

    It can also really play havoc with your temper, etc. I am sure she isn't rational. I know I'm not ;)

  • She loves her job and she is a very very proud person, she just got off the phone to the county council as she asked to apply for a Blue Badge and yes, she cried down the phone to them and then to me. She feels a failure already, giving in to her body and giving up work would destroy her mentally. She is stubborn and proud but due to her levels she is irrational (in my opinion). Her job is great for her, she is an activities co-ordinator at a care home, not a lot of walking is required as she is more admin based while her colleague is more hands on. They work great as a team.

  • I had abdominal bloating which at one time was thought to be possible hiatus hernia. It resolved fully when I took levothyroxine. Kidney disease can cause loss of thyroid hormones, I assume this would have been checked when they had her in for a day.

    One point I forgot to make. Hypothyroidism makes one incredibly tired but it's not like th tiredness from a long day out, working hard or playing football for a few hours. In these situations you are tired but mentally fit. With hypothyroidism the tiredness comes from the brain, it is incredibly hard to motivate, the emotional side of motivation is shot. I only survived because I studied maths at university and the logical side of my brain managed to override the rest of it.

    It is incredibly hard for her. I wouldn't try to attempt lots of medications. The thought of stuffing 10 levothyroxine tablets every day is horrible, I doubt that a healthy person could absorb that much. I would focus on one single task, getting her levothyroxine by injection. Then after a month or two the situation can be reviewed. She will probably feel much better and up to planning the next stage. It will also show whether the problem is absorption or excess excretion of hormone via the kidneys.

  • As I too am hypo (diagnosed 8 yrs ago - after an operation I put on 4 stone in 6 months), and I suffer Fibromyalgia I am aware of the fog it can cause. Unfortunately even though Kim is aware of it I cannot get through to her the importance of talking about her health. I have written to her doctor and told her what Kim has told me and mentioned that it may be she has a problem with malabsorption and that maybe they could try giving her injections on thyroxin and see if that does make a difference. Obviously without Kims permission they can tell me nothing but at least the doc read the letter and she asked that I encourage Kim to go see her - which is strange as Kim told me she has an apt with her Dr next Tuesday. Either a lie or the Dr didn't check to see when Kim was due in again. I checked and there is no prescription in the UK for thyroxine by injection but I hope there is some way around that should that be what she needs. They must have the powder here as it is how they make it up to give via IV. Just got to take a deep breath and try to have it out with her. Just straight answers to questions and then we can move on. xxxxx

  • That sounds good. Maybe they keep a small amount of iv levothyroxine for emergency use and testing so it shouldn't be too difficult for them to get more. Fingers crossed for Tuesday, take it one step at a time. I can appreciate she doesn't want to be pushed I'd be the same if my curiosity hadn't got the better of me.

  • I know Dee, I have an adult daughter with weight and health issues so I know how you feel but do try to turn her on to Jason Vale, he is a sweetheart and so positive about bringing people's health back, worth a try if she can watch a video or two of his and then Superjuice Me doc. She might get her enthusiasm back. Lots of love x

  • Is there any way you'd can stay with your daughter to supervise her trying some of these things, or maybe to see one of the recommended private doctors. If her NHS endocrinologist is anything like mine they know NOTHING.

    The reason I say she needs help is that I have experienced having a TSH over 200 (I have no thyroid and have had to come off my meds for scans), and my brain fog was far too great to learn about my illness, or comprehend different paths to treatment. All I could think about was what was right in front of my nose, and even that for only 3 or 4 hours a day I was awake. Talking was a physical and emotional strain and people asking difficult questions was the worst of all! I dreaded the phone ringing.

    It's only since I've taken several big steps up in my health that I've been able to do any research, but the main thing I do is read this site. I'm still too weak and lacking in concentration to read the books and websites people on here recommend. I buy some of the books and line them up on my mantlepiece, waiting for the day when I am well enough to read a book!

    One of the biggest things anyone has done to help me was my father who sent off for the ThyroidUK list, researched the doctors and said he'd pay for my first appointment. It's the thing I'd wanted all through my illness - someone to do the reading and learning that I knew was the only thing that could get me better. But I'd already found ThyroidUK myself, and realised the only way to get better was to find out how myself. It's harder with someone who still trusts their doctor and sees no other way. I have had a two year battle with a good friend, who just used to shut down, but is finally getting some testing and learning about his own health.

  • I have just come back from hers (10 days) and she is happy to talk about anything except her thyroid. I won't give up trying to help her, its what I want to do as well as need to do. In the end I suppose all anyone can do is try. xxxx

  • This hasn't happened to me. But I would suspect a GI problem. Do you have access to someone who knows how to test for leaky gut/enteropathy?

  • I have written to her GP but due to confidentiality I will not get a reply with medical information in it. All I can do is suggest things. xxx

  • Is she at risk of becoming incompetent to direct her own care?

  • Not sure I want to contemplate going down that road, if she is incompetent then surely she cannot look after her daughter and that is untrue, she is a great mum, I honestly do not know how she manages but she does a fantastic job - better mum than I was :-(

  • One point I forgot to make is that although many of us patients in these forums have complex thyroid problems, cases such as your daughters usually resolve quite successfully once they have appropriate hormone levels. This is good news. It's the patients who present with signs and symptoms with minor hormone inbalances (or in my case normal levels) that are more problematic. I think she might do very well once her TSH is brought down to 1 or 2 and her fT3 and fT4 back to more typical levels. It will however, take about a year for her to recover, the body takes time to respond.

  • I think it will take her much longer than that but I do hope it is as quick as you suggest. She is now 22 stone overweight through no fault of her own (unless she has not been taking her meds but they have done tests to prove that she had been taking them). We do expect weight loss to come but the amount of excess skin is going to be horrendous and the NHS do not remove it for free. Add to that the fact that her boobs are so big and heavy she has to sleep sat up or they weigh too much for her to breathe. I have even gone so far to suggest she ask for liposuction to take a couple of stone in weight from her, even that would be of benefit to her but she won't even ask and no sign they would consider a breast reduction either. I wish we had the money to go private :-( xxx

  • This is really random, but I've seen people have excess skin removal and breast reductions 'for free' by going on the TV show Embarrassing Bodies (I think that's a terrible name for a a TV programme though!). In fact, if your daughter gets nowhere with her thyroid with the NHS then that show might even help her as they seemingly love unusual cases.

    However, I understand that she has to want to pursue any treatment possibilities herself and that it might be even impossible to suggest such a thing to her... It is very difficult to stand back and watch someone suffer when there could be helped :-(

    I know that for me autoimmune thyroid disease brought with it intense apathy as well as mass weight gain and all the other stuff - it was only because I knew that I could feel better from those things that I actively pursued treatment even when the NHS had given up on me. I wonder if your daughter's lack of interest is because she doesn't feel or believe there is a solution because so far the doctors have failed her. I know from my own experiences of other health problems that when they can't help and they give up on you, it makes you either give up on yourself or fight. If the issue is hypothyroidism with the associated apathy, depression and/or low self esteem, the tendency is to just give up or go into a state of denial. In the end one may believe it is possible to be helped and may even also have zero trust in the medical profession.

    I think your daughter deserves a second opinion at another hospital such as the endocrinology department at a teaching hospital. I'm not sure how you could get her this unless she is willing to allow you to advocate for her (and you are able to do this with the distance) - e.g. going to the GP with her. Perhaps you could come from the angle of what would she do if her daughter were grown up and in this state... and that as her mother you want to and are willing to fight for her right to life/treatment. My mum had to advocate for me in the past and has also acted as my carer (for other non-thyroid problems). I didn't really want her to but I was incapable of acting for myself. I guess there came a point where I cared so little and felt so awful that I was actually happy for someone else to sort it out for me! Perhaps your daughter might get to that point or could be persuaded if she felt that she didn't have to fight for herself.

  • I doubt you'd find an anaesthetist in the country who would allow any operation to go ahead. We have seen several posts here from people who have had slightly high TSH and been refused. This is for good reason - it is much more dangerous to be anaesthetised when hypothyroid.

  • Well I agree it would be dangerous but so is the constant weight gain. I have to guess at 20 stone in 5 yrs and they could see it as she has the same doctors and specialist throughout that time. Its killing her, slowly but surely and it hurts like hell to see it. I live in fear for her and for Amber. No child should lose their parent at such a young age but that is both mine and Kim's fear yet she refuses to listen to me.

  • I have no doubt that the excess weight is a major issue. But the anaesthetist has to look at the hours and days aroudn the operation.

  • I was just rereading your post- the first time I was trying to catch up on everybody's replies to me. After rereading this, I do have a question. Has she been with the same specialist all of this recent time? If so, is there a teaching university near you where they often have various teams trying to determine a problem? Often times a doc can get so enmeshed in a problem that they just draw blanks, because they are either no longer interested, ashamed they have no answer, or any other variety of reasons.

    This ( my question, not you) is exactly why I spoke of being one's own advocate. I am speaking from what I understand you to say in your post, and if I have misunderstood it, please forgive me, but if this was my daughter, I would most likely be knocking down the doors of every specialist I could find. I know nothing of your medical system there, or how insurance operates, or if you have a socialized system. It seems things are different in the states. But if you can, that is what I would recommend. As I have said in other posts, often times a diagnosis is wrong, or there is something else entirely confounding the diagnosis and it may take different eye, specialties to unlock the mystery. So, not knowing the situation and based on my understanding of what you have posted, that is my best guess for you Dee. I hope this gives you some encouragement. Years ago my daughter, across the country from me was struck ill and as she was taking her last breaths (seemingly) she called me. I was so terrified, felt so helpless that I couldn't get to her in time, all I could do is reassure her and pray for her. I think I would feel even worse if I was with her and still couldn't help-how terrifying that must be. So yes, that is what I would do Dee. By the way, my daughter had a gut bleed and she had nearly no iron or life -they began emergency transfusions and she is fine but has to get regular infusions now~*~

  • Hi Penny,

    My daughter phoned me and said she was dying so unfortunately I know just how that feels. Things seem to be changing for the better. I wrote to Kim's GP asking for her help with Kim. Well, Kim saw her GP today and things are on the up. Her specialist (been with this endo for 10yrs now) is being told by her GP to not look just at her thyroid but to look at Kim as a whole. GP also told her she has Myxoedema Coma which in any country means you need immediate emergency care with levothyroxine by IV. In UK we have free healthcare via the NHS, it is wonderful when it works but sometimes things don't go to plan. I doubt Dr Dyer ever wanted to have a case such as Kim's but if he couldn't deal with it he should have had the testicles to man up and refer her. If we could afford private treatment then we would have gone down that route years ago. I am so pleased that they are on top of your daughters problems.


  • Oh Dee, I am so happy for you both! Looks like you were a little ahead of me. I think personal arrogance and a license to practice medicine precludes some medical practitioners to just table the problem and when the death certificate is issued to just dust off their hands and go to the next unwitting patient. When a medical case proceeds as this one after a time the best way to proceed is to get a second opinion. While I realize there is a culprit called thyroid which I am not dismissing by any means, I would certainly like to know if they find where it originates from, if not directly from the thyroid, or the terminology would be if the thyroid is secondary to another source i.e. cancer or CA or another source. Just for my own education and professional growth, and of course the most important thing knowing you have peace of mind! May you be richly blessed in the recovery of her health Dee~*~

  • Third post, I got you confused ( last post ) with somebody else. Please ignore my last input but not the first one urging you to transfer her care or at least a second opinion at a different facility. Were she to refuse you may be able to force her to based upon the fact that she is not qualified secondary to the severity of her illness, and her inability to make sound decisions, i.e., depression, hopelessness etc. I do not know how they do this stuff there but here,, this is legal action here in the states~*~

  • UPDATE: 8th Sep, 2015.

    Kim went to see her GP today and phoned me to tell me what happened. She was given her prescription of 1,000 mcg thyroxine and 60 mcg T3 and was sat there while her GP dictated a letter to her Endo in which the GP stated that Kim is suffering from Myxoedema Coma and needed urgent treatment and suggested that her Endo look not only at her thyroid but at Kim as a whole. The standard treatment for myxoedema coma is thyroxine via IV but we have to wait and see what happens when her Endo gets the letter. Love her to bits, this is what she has written on FB "Myxoedema coma.. and i thought i had myxomatosis.. not sure which is worse.." she does make me laugh, even during such terrible times. Her GP also said it was time to give up work and concentrate on herself. She is now at the stage where she is falling asleep more often than being awake.

    Please cross your fingers that things start moving quickly and that they do manage to sort out her levels.

    Much love to you all for your support.



  • Dee, fingers crossed Kim will get the help she needs soonest.

  • Just wanted to update you all on Kim. She has finally realised just how ill she is and we have been talking about her condition and what could be done. I have searched the net, used the links and articles you have supplied and given her the links and printed off a few of the better ones for her to give to her Endo on Mon 26th October. She is going to tell him (in no uncertain terms) that she wants IV treatment/injections so please cross you fingers that he will actually listen to her and finally do something.

    Many many thanks for all the help, it really is appreciated. I will update again after her appointment.

    Dee xxx

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