my family dont even taken my illness seriously ,so why would the doctors?

my family told me today that i have the tablets and should be fine by now?underactive diagnosis only for about three months but borderline since 2009,i am now over weight, hair falling out, very cold, cant sleep, body aches, knees hurt so much can hardly walk, no memory and can hardly talk so tired!!! i dont want to see any one as i am so tired and so depressed, yet my grown up children think i am making it all up and just a moaning old woman, i am only 57? i feel no one really understands how rough this illness makes us feel, i feel now that there is no one to talk to, is it just me or does any one else feel this?

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56 Replies

  • Im 26 have hypo, i totally agree people dont understand. Most of the time i get on with it and let them just think im lazy x

  • hello sezzy, yes they do think we are lazy, even when i say look at this website or article they look at me as if to say why? my daughter said you must be better you have tablets??? i too have decided to just get on with it only thing is we end up so alone, that can lead to more depression and loss of confidence

  • Hi Lola

    Sorry you are not getting support from your family. :(

    Have you posted on here with your latest thyroid bloods? It may be a good idea to do that - also meds & dosage.

    Are you taking your levo with water only, at least an hour before food?

    Have you had B12, Vitamin D, iron & Ferritin testing?



  • hi louise, going to try see doctor this morning as b12 vit d etc came back abnormal on print out but no one has said anything,the bit where it says on print out of bloods for doc to call back etc left blank as it has been left again with me having to fight for treatment and answers rather than a doctor care enough to arrange to see me, sorry just fed up fighting and feeling like i am a hypochondriac

  • Please make sure you ask for a full copy of your results with the reference ranges and then post them in here for additional comment and support. Good luck with your appointment and let us know how you get in today.

  • I have posted my blood results several times, but it's just a waste of my precious time, I haven't had a decent answer to my results yet and then they keep disappearing off the screen with this new website!!!!!! I've given up on that one.....

  • Hi Tish

    I'm sorry to hear that you feel you are wasting your time on this website.

    Your posts, with the relevant replies from other members can be found here:

    and here


  • Thanks yes I checked no one has answered my blood test results xx

  • Im really sorry to hear that i was lucky my family saw my grandma struggle with it all their life ao they have always been very supportive but i have felt like you did as they live very far away it does get better your description of your symptoms indicates to me your still undermedicated fight for an increase goodd luck

  • thank you

  • Tell them there are 11,284 people signed up to this site alone. Why would anyone bother to waste their time if they were getting decent treatment and if simply taking a couple of pills every day actually sorted the problem?

    I for one have got much better things to do with my time thank you and I am on here because the protocol does not do its job for so many and neither do the GPs. Incidentally, so have those petitioning parliament.

    I dread to think what the figures are for forum members worldwide - it's not just a UK problem.

    They need to support you to get optimal treatment - then they will get the real you back.

    Good luck - Take care and keep posting for the wonderful support of those on this site who understand what you are going through. Xx

  • Some members have found it helpful in the past to show this to friends and family - it might be worth a try?

    Love to you and hope you feel someimprovement soon.

  • Hi Iola the only people that understand are the people who are or have suffered themselves and know from experience what you are going through. My husband is the same i had a total thyroidectomy 3 weeks ago and he thinks i am now cured, i know i have a long journey ahead to get my medication right,he just cant believe how tired and cold i get, and to be honest i get fed up with myself and all my aillments and would love to have a miracle cure, hopefully we will all be well soon, take care,

    Linda x

  • People struggle to relate to invisible disabilities and endocrine issues are generally considered as such and are recognised as being included in the spirit of the Equality Act (was Disability Discrimination Act.) Perhaps telling your family you have a recognised disabling condition which affects 1 in 50 women will make them wake up. Getting your B12 & ferratin sorted out will also help you but I changed to taking my medication last thing at night rather than first thing in the morning and this made a real difference to me. I also found that changing my diet helped. I cut out high carb foods such as bread, pasta, potato and cereal and over the space of 12 months I managed to lose 1.5 stone. I recommend you read Mary Shomon's book 'Living Well with Hypothyroidism' as it really changed my life. Perhaps your family could read it too to gain some insight in to the challenges of this frustrating and often disabling condition. I hope this helps but if your family do not support you, you at least know the community here will.

  • hi i have tried to get my family to understand my illness having sent links online or asking them to read parts of books written about under active thyroid but they really are not interested, maybe they have always been not interested in my life and well being but then my life was so busy i never noticed, i feel that this illness is somehow a punishment for me , my life before was very busy i was probably a workaholic , now i have not got the energy or motivation to do anything and most days see no one, to know that you even have to fight to be heard by a doctor is the cruellest bit of all

  • Oh, this is just how I feel, my whole life has been a complete sham, thinking that my family cared but so much has come out in the wash as the saying goes that, I Am the black sheep of the family, middle daughter etc,etc, any childhood arguments and I got the blame, my mother used to beat me, not my sisters, and I was the one who had to look after her when see was ageing and had a stoke and then Dementia, while my sisters got away with murder, I did her shopping, cleaning , spent time with her, one sister lived 60 miles away, ...her excuse, ...the other a mile away from her but was single and bringing up to children, she saw her for a hour a week ,if she was lucky, I even changed my hours at work so I could see to her,,, and when we had to put her in a care home,WHO got the blame,, yes quess who ,ME, and I had just had my ovaries removed because of massive cysts, I Hate my family now, and looks like I should have always done so, they are not interested in my incurable illness at all, and don't even read the emails I sent them about it and the 'letter to my family" letter on the Internet...

    Just got read and dissed,,,,,

    And my husband is a selfish ..... Who just wants his own way all the time, I went along with this when I was well enough but now........oh no, I Will be happy with or without those .......s

    Please fill in the words yourselves he he he xx

  • i am so sorry to hear it is so hard for you, it is a hard world and i too, from now on will just look after myself,had a bad asthma attack at 6am and thought i was going to die and i thought for a minute it would be better if i did,,,,,,,,, but from somewhere inside me came the feeling that i want to live and get back to the me that loved life and i will now be selfish and if i have no friends or family around then so be it,,,,, thank you for your emails its good to know that we on here look after each other xx

  • My heart goes out to you, we will be strong and happy, we will show the doubters we don't need them and we will be selfish as they are, it's the only way. Yesterday I forgot to take my white stick out with me cos I was with my husband I didn't think I'd needed it but my oh my, my illness became less visible to the crowds and how I suffered for it,...people are so bloody minded these days...I have severe double vision So I wobble all over the place, go dizzy, stumble, and sometimes fall over, but the crowds don't care....., if I carry my white stick it's amazingly different, people show me much more respect and dignity, ....perhaps all you thyroid suffers should carry one, just to get the respect you all deserve!!!!!!!

  • sending you hugs (((((((hugs))))))))) lola and Tish

    Jo xx

  • thanks x

  • Thank you so much, I needed those hugs soooo much xxxx

  • your 'life' with your ......'family'....... is virtually a mirror image of what I see whenever I look at myself .....I can totally empathise ---- one thing that will stay with me in perpetuity is that when I phoned my 'sister ' at 2.30am from the hospital to tell he that we had lost OUR mother [ after the hospital had tried to contact everyone ---and I was the only one to actually get there] .....her direct answer to me was ' WHAT DO YOU EXPECT US TO DO , WE ARE GOING TO NORFOLK ON HOLIDAY IN THE MORNING '======= AND THEY WENT !!!!! the funeral she told me outside she would 'phone me tomorrow '-------after 6 years i'm still wondering if tomorrow ever comes .....but as you so eloquently say s++ the lot of them .....keep up the good fight girl ....LoL alan

  • Oh, Alan , thats awful, my family aren't THAT bad thank goodness, mind you they have lied to me, talked behind my back all this time without me realising to what extent but NOW I see the light and good riddance to the lots of them xxxx

  • not so awful , its given me the size 12 up the rear end that I needed a long time ago you say good riddance to the lot of them ...... but I know in every atom within that I can walk /hobble / shuffle down the road with my HEAD UP HIGH with total impunity and pride !!!!!!

  • Hmmm I have to keep my head down if the sun is too bright my severe TED troubled eyes can't stand the bright light even with very dark glasses on,,,,, he he he made me chuckle though xxx

  • hi there tish, I hope that your TED is actually being PROPERLY treated [ it is a medically recognised disease ] lady is currently being treated by moorefields -- excellent consultant [ mr david verity ]--- please let me know what area you are in ....I may be able to give you a few pointers ..... and never forget to s+d the damn lot of those that are ignorant of what is going on around them ----NO MATTER WHO THEY ARE ----- and always remember there are some of us out there that can empathise and understand some of what you are going through .....god help the others when they have a problem of this kind .....LoL alan

  • Good morning Alan, my TED is being treated at the BRI ENT by a MR P L Atkinson, he seems to be very competent he offered me Steriods but with by dicky liver and gall stones we both decided against that option and the he offer radiation treatment which scared me to death so we are waiting for my antibodies to go inactive, but having had my TT op they are back with a vengeance and now have Hashimotos along with my GD my Dr tested my TPO and it came back extremely high!!!!! Sooo it's stalemate at the moments I see Mr Atkinson in 3 weeks time xx

  • So for the Family my sisters son had Type 1 Diabetes and gets superb treatment in Blackpool, it's so unfair, but I presume that is why my Sister thinks I'm well over the top, and should follow my doctors advice. BUT THIS IS NOT SO IS OUR CASES thyroid troubles are much more complicated to treat, I have always shown her son great respect and compassion with his condition, THAT is what is SO annoying. So to hell with them all, they are banished from my life xxxx

  • I have very severe Graves Disease, hashimotos and thyroid eye disease, .....hasimotos as well you might think but my ignorant and arrogant Doctors test for the wrong antibodies TPO and report came back with an extremely high reading of Hashimotos antibodies!!!!! My antibodies all of them are on the ramage and my doctor is very concerned about me, but says there is nothinghe can do but give me Levo 100mgs, and only time can heal me,, (WHAT I'm so bad now they will be carting me off to the flipping loony din AGAIN) .....besides my Ramipril and, Amlodipine , for high blood pressure, Beconase for my runny nose, Hydrotears for my dry,puffy, popping double visioned eye balls, gaviscon for my severe acid reflux , mirtazapine for my moods, Propranolol for my racing confused heart, and I am supplementing My Own b12, selenium with AC-&E , Magnesium, omega 36&9,,,, and I still feel ill, and do you wonder family think I'm just putting it on and have completely dissed me, (including my stupid selfish husband once again)

    I'm done with trying to please other people and pretending I'm Ok, we'll NOW I'm looking after number one ME and no one else they can all go to

    You know Where,,,,......, after this weekends fiasco's always me who's in the wrong as they all seem to think. I just wish they would have to spend a week in my shoes!!!!!!!! GRRrrrrrrrrrrrrrrr, I'm livid !!!!!! .....But determined to enjoy my life to the fullest possible if I was well enough I would be in the sunshine abroad somewhere but the insurance would be astromonical,

    So I just sit tight and ignore the so and so's.... much stronger words in my head but....they are not worth the hassle and me getting chucked of this support forum.......,

  • Read the book got the tshirt my family couldn't be bothered to read my short emails about my GD and TED never mind a full book!!!!!

    Livid and hurt to the core Tish xxx

  • xxx

  • For starters, 3 months is barely started, so I would be well surprised if you were "sorted" yet, as someone else suggested current bloods needed so that people here can give you help you interpret and know how well under control things are, there is plenty help available here on that side; the advice on cutting the carbs is something I can not pile on enough positive endorsement onto too; but I am afraid your family response to ill health is so typical, and something I used to suffer terribly to. I say USED TO, as I dumped the lot of them after years of not getting taken seriously and even openly directed snide remarks about people running cars on benefits (I am very visibly disabled and on DLA too, so I can only imagine what they would think of something as hidden as hypothyroidism)! I took a conscious decision that someone is either with me, or or against me, and I put that to them and it was pretty clear they were against, so I got rid of the entire emotional burden - it helped a LOT, but even if it was only for the fact that I now enjoy Xmas was well worth it! :-)

  • People just can't get their heads round it. "you don't have any spots." no outward signs. My husband is very up on health but still doesn't understand "Thyroid".

  • My eyes tell my story, I have very swollen lids, popping out eyeballs, squinting eyeballs, the thickest glasses ever with plastic stick on prisms, my eyes are extremely sensitive to brights sunlight , hence massive wrap around very dark sunglasses that'd I have to wear in front of my own specs, then they are too heavy and give me headache, these were given to me along with a white stick by the RNIB, I get severve heartburn all the time, severve cramp in my calfs most nights leaving my limping and in pain most days, but I'm am still fighting too get the right meds and doctors care, he has now referred me back to my Endo, the idiot who pressured me into having my Thyroid out, BIG MISTAKE, who will not prescribe Natural thyroid meds only synthetic rubbish that makes you more ill, I know this because he wrote to me to warn me!!!!! Flipping QUACK, much stronger word in my mind, And he has classed my case as non urgent and I'm at the bottom of his appointment list , around 10 weeks, I've pleaded with his specialist nurse even told her my husband has left me to cope all alone, and desperate ....hmmmmm not desperate anymore just flipping livid, I told her that I might not get to see him them her reply was oh why, answer well I might well be dead and cremated by then,,,cos of my body panic attackes where my pulse shoots to 140btm and I pass out,,,,,,as happen only last Sunday at Beverely Races with my stupid husband , who was annoyed I'd spoilt his flipping day at the races, the on site Doctor wanted to rush me to Hospital but I refused cos I know I'd had gotten rubbish treatment there as I always have had in the Bradford Royal Infirmary, and I CAN quote a few of those occasions but it's not worth the hassle !!!!

    !! LIVID and hurt to the very core

    Tish xxx



    I got the flipping forms,.... read the legal statements and tore it up in FURY, ........I worked from being 15 years old , extremely hard, excelled in my career, and was very well liked In my chosen career, only to to made redundant in 2009 at 57 and Ihaven't received 1 not 1 reply to my job applications since, so I took early retirement and my works pension and I get my state pension this month ! I'm 61 and 3/4 my flipping .... Of a sister turned 60 and got her flipping pension straightaway,,,,,,yet another gripe of mine, she's only 2 years older then me, GRRRRRRRRRR

    And as her my younger .......of a sister resents the fact that I'm well off and she's always skint... She downs a bottle of vino most nights....I don't drink much at all and never have ......and my MUM gave her £60 pound a week to feed her 2 children when her husband left her when her 18 years old was 3 until she died in 2009, ME I got £20 for running all over for her , shopping taking her to appointments taking time off work for her, changing my hours, cleaning, shopping, visiting her etc etc....but when my Ist husband year before that had several affairs , raped me, wanted me to abort my wonderful now 38 year old son, that ..... Of a women told me ' you made your bed you lie in it' and I had to stick with him for 8 years. GRRRRRRR, than when I eventually was allowed to return to the family 'fold' my sister was 13 by then she and my mother treated me like flipping Cindrella,,, well I don't think I need therapy I need compassion and hugs and love

    And you guys here are marvellous and my sister said last week as I stated in an earlier post last week , don't take any notice of them they are just idiots with nothing better to do than diss their wonderful doctors on the Internet, and that I should behave myself and take notice of my idiot of a doctor who can't even request the correct blood tests for me GRRRRRRRRRRRR !!!!!!!!

  • I am sorry you are so unwell - as stated above three months on medication is no time at all and increases have to be done gradually.

    Tell them that hypothyroidism can be hereditary, so they eventually may find themselves in the same boat as you.

    It makes life so much harder when your family are so harsh. They do not realise that the thyroid gland hormone controls every single cell in our body from head to toe and cannot function properly as we feel so unwell.

    Hopefully, you will have a good doctor who will get you on the road to recovery and it is a disgrace that we have to have help from sources other than the NHS. We have to read and learn but it is possible to get well.

    Best wishes.

  • Good doctor huh, He's an arrogant and ignorant idiot who will not even request the correct blood tests, say my B12 was good enough when it's proven it wasn't, won't read well proven printouts from the Internet, even the letter from the minister of health saying that doctors should start taking notice of symptoms and not sticking to the false old fashioned guidelines was dissed, he wouldn't even take it from my hand, just said MPs haven t clue...Drrrrrrrrrrrrrr....who hasn't a clue????? It's all a cost thing to them but can't they see that I'm costing them much more because of all the other meds I'm on....

    I feel sooooo sorry for the younger one with this illness that have families to bring up and so called jobs to do, iffffff they can work or even get employment,,,,, this whole country has GONE to the dogs,,,, it was sooo much better in the earlier years off my life to get jobs and have decents pay,,,,,everyone had pride on their work and lives ...NOW it's the PITS....

  • Ok rant over I'm off out to enjoy the rest of the day, determined not to be in when that ...... Of a husband returns home from his early shift at 3. ,,,,incidentally I've pleaded with him to retire with me so we can enjoy our lives and not have to kow tow to others anymore he's a supervisor on a very rubbish wage with loads of pressure and it's killing him, he's 60 and tire to the core but OH NO he's scared to death of giving up his c.......y job that destroying him healthwise and mentally , he used to be my soul mate we never used to argue and have been together for 20 years....he's changed so much in the last 3 years it's unbelievable, its me who is very ill and people assume it's because he's worried about me, if they only knew the half of it!!!! Grrrrrrrr I have too pretend I OK all the time and not mention my symptoms or else the s... Hits the fan....

    By the way we both have a good sense of money management and don't need help from the state and he could afford to retire early so I've told him straight 'I don't want to know that you are trussed and tired out after work your shift, that's your choice, I want you to enjoy life with me while I can and have holidays and go out whenever we want' but oh no , it's excuse after excuse, when I plan a holiday it's, oh I'm running out of holiday days from work, I say the company knows I'm really poorly and will let you have time off without pay, but oh no, excuses excuses , I know the company would allow this because I worked for them for 40 odd years and they are very compassionate to this sort of thing... It's just excuses, well we have a holiday booked in North Yorkshire (his flipping choice as usual , not mine) next week, if he doesn't pull his socks up this time , he can go on his own and Ill go elsewhere, somewhere I've wanted to go to for years and HE wouldn't oblige me!!!!!!!! Grrrrrrrrr

  • Good advice, it is hereditary and can be inherited by any of them. Forgive them because they are less knowledgeable of the condition.

  • doctor told me to stay off "silly websites" when i questioned my blood test results, said i have too much time on my hands , made me feel so stupid , i am so tired of fighting the nhs

  • Hi Lola

    No 'silly' websites here! :)

    Thyroid UK always try to make sure that our information is backed up by research.


    xx :)

  • hi, i know that but thats what my stupid doctor said to me

  • My doctor said the same to me and my Husband agreed with him

  • Totally get what your going through. Try educating them via books and websites about what the hell we go through, be in over or underactive with Graves or Hashis or not.

    If all fails, a simple I know what I am going through and it is a personal hell for me. I dont need stress which makes my condition worse. I need support and understanding. If you cannot do that for me then please keep quiet about it. Adding I hope none of you ever go through this but if you do I will be there for you.

    Just leave it like that.

    My lot are the same and Ive now given up telling them anything. I now do not tell them anything.

    Plenty of us on here, do listen and share your anxiety and do care. So use us as an adopted family.

  • Thank you for that see my Good Morning post below xxxx

  • thank you ravenhex

  • Hi I feel exactly the same. It seems like my life has ended and no one wants to know or help. I have tried to keep positive about things but am finding it a total struggle. Weight gain and depression are my biggest enemies after struggling for years I finally lost 3 stones in weight and managed to stop the anti-depressants and after only 7 wks on levo have gained 10 pounds and feel so useless and invisible. Even sitting here at this time of the day is not normal surely.

  • morning bossy, your words could have been written by me, i feel i have no life , depression is so bad that ysday during an asthma attack i thought be better if i died. every morning i waken up and cry, i try to find practicle ways to get through all this but even family and doctors treat me with contempt , doctor told me yesterday that i need to stop researching my illness and get off these silly web sites, i dont know how to make you feel any better but you can email me any time and maybe we can help each otheror of course we have this site , hope i have helped abit xxx

  • Hi Bossy. Sometimes it may feel like life has ended as we feel isolated and do not understand why us. Our genes dictate what we carry. You may feel awful due to weight gain but remember it is not your fault, it is the illness. I have found that leaving the house and getting out even if it means sitting outside helps with depression. I have lots of pain but get out and just walk the high street where there are lots of people if I can help it. Sometimes I just sit on the bus and change into another one just to be outside because it would be difficult to walk. Cheer up.

  • Good morning everyone, well didn't we all have a good rant yesterday, well today is the beginning of my new life, ( once again!!!!) I had a great nights sleep after getting all that off my chest phewwwww!!!

    I have joined a Nuffield health centre to get a social life of my own without the dregs of the earth dragging me down, I go for a health MOT there today...., I wonder what that will bring to light! It's set in beautiful parkland grounds and in a manor house, there are fantastic facilities, beautiful swimming pool, jacuzzi , rain showers, stream room, saunas with a cold plunge pool, every exercise machine imaginable, classes for yoga, Pilates, bums and tums, dance, spin etc etc, ...theres a lovely bistro cafe where people hangout and make's brilliant, long as I'm fit enough to catch 2 buses to get there I'll be there from 10 everyday....until it pleases me to return home to that grumpy old so and so......he can do as he pleases and wash and iron his own flipping clothes and feed himself, I can and I will live my own life in peace and go where the hell I want whenever I want, ...looking at booking a few mini breaks ASAP, and if I can get reasonable holiday insurance I'm spending the winter abroad, SO SOD the lot of those dregs of the earth .....This it what I worked hard for all my life and now i WILL live MY dream no one elses MY dream

    big hugs and love to you all

    Nutty Tish xxxx

  • why do you not start a new thread tish? original question is now lost

  • Hi,, I am sorry that your family do not understand, it is the ignorance on their part. If only they could Google the condition for themselves they would understand. I had Graves Disease diagnosed in 2005 but had been suffering for years. I am partially sighted severely damaged bones have fibromylalgia and the list is endless. I am still fighting the after effects of Graves which doctors did not pay attention to. You will get better as time goes on but do not concern yourself about the family because it will further stress you. Eat well, rest and find a support group through the British Thyroid Foundation. I got a lot of support from them. I also read a lot of material and looked for the closest diet. It is more difficult with these conditions especially when those we love do not understand. Love and pamper yourself, find a lot of self help and get as much knowledge of your condition as possible. . Try to reduce your stress levels. You are not an old woman, your are not well and need love and support. Bbeing with or finding a community like this one helps a lot as we can comfort each other in a positive way. Keep your spirits up and let the sun shine on your face. You are more than a conquerer already.

  • thank you for your kind words, i will try to keep my spirits up

  • i could not agree any more with the comments above ......the good people on this site can and will understand ---- just assume we are all your new family ---- glad to hear your going to start enjoying yourself , and if your other half is that bad DO SOMETHING ABOUT IT ......he sounds like he 'aint worth even thinking about ....LoL...alan kim and the n.s.l.l.o.

  • thank you for your help, there are many good people on this site. i dont how ever have a husband to get rid of

  • sorry got your missive mixed up with tish....alan

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