I have been unwell now for just over 4 years, and like a lot of us on here I have totally shoddy treatment courtesy of the NHS, and have ended up self medicating again. I have noticed that due to the way I am now, I find I have little tolerance for lots of things and relationships have suffered badly, all my long term friends are no more and I am talking very long term friendships up to 30+ years, I can no longer work but struggled the last year or so when I was so emotional and irrational in my behaviour if something upset me. Making new friendships is hard being unwell and getting frustrated that people do not get it!!! I appear to be involved in conflict at all levels with pretty much everyone from my G.P's through to getting benefits...( I have worked all my life until Jan this year and they make your life hell)
And this is the worst of it all, I have just spent a night in Brighton ( I was born there ) with my parents who treated me to a little break, as I really do not have a life anymore due to the restrictions of this illness, we did lunch on the prom, then drinks and dinner in the evening, the whole time I was uncomfortable and sweating as I cannot handle heat of any kind, aching when I sit, hurting when I walk...Blah Blah
We met for breakfast this morning and we had some more things planned, BUT all I wanted to do was go home as I was looking at my now BIG FAT SWEATING mess of a body, and really became so unhappy with what I saw in the mirror having always been small, and happy with my looks and just had a complete meltdown with my parents and saying they did not understand, they do try but they do not really get how much of a struggle it is to achieve even the smallest of tasks and I knew I could not face the day ahead even though we were doing nice relaxing things, so we had a row and I ended up wobbling off!! It seems I ruin everything nowadays as I cannot cope with what I have become, I have always been so confident and happy and now living this crappy life is torture for me. I am trying to get better but I really do wonder if I ever will regain even a part of me ever again and that's scares the life out of me.
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missdove
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(((((((((((((((missdove))))))))))))))))))). You are not alone. This illness is &^** and ruins lives. Because we aren't visibly disabled people can't understand. Trust me, it happens to us all - friends who can't or won't try to understand. Days when you are so depressed and moody that you'd scream at the walls (actually, I've done just that).
What medication are you on and what were your last test results? It does sound as if you need to adjust what you are taking to help give you some improvement.
Hi Rosetrees, Its such a sorry sad but true tale and when wound up or feeling so low I could get into a fight with my own shadow. I still remember my Nan telling me that when things got on top of her, she would open her window let out an almighty scream and then sit back down as if nothing had happened...I think I might give it a go, but it usually ends up with tears of frustration and I do throw the odd thing!
Have tried the conventional route, and the NDT, then T4 again and am now adding in T3 and reducing T4, I think I now have problems converting and am waiting to hear back from a private consultant as to her thoughts on the state of my health, but in the meanwhile out of frustration I have been slowly topping up my T3, its given me the energy to scrape by each day, but I know I need more and have made sure that all the key vits are topped up as I have had the usual Fibro and CFS labels thrown at me. I have really high anti bodies now and I can just feel myself fall more and more apart, and the GP's, Consultants never really acknowledge the powerful impact being unwell has on your mental health...I hope that you are on a better place than me...D x
Don't be too hard on yourself- Going away, family, hot weather etc can all drain you however well meaning ,esp. when you're not 100% -or anywhere near that in your case.
Give yourself more time on your case and believe in success- you'll get plenty of help here.
I know Tegz, on the one hand it confirms how unwell I have become, but deep down I am not ready to give in yet. Its just sad that I tend to leave a trail of destruction in my wake At least here we can feel human...D x
oh missdove i really feel for you, i think most of us are feeling the same, we get no where with nhs, my doctor surgery has taken in sufficient bloods two months running, today i found out. i too feel so fat and old and ill having put on three stone in a few months,i have days when i want to give up and days where i want to fight this awfull illness, big hugs your not alone x
Thanks for the hugs Lola1956, sometimes I swear it would be easier just to stand outside and hit our heads against a brick wall all day!! I hope that you start getting the help you need soon...Best wishes D x
My feelings completely , been there got the tshirt, the other day I was so furious at my sisters response to my plight I went into garden and let out an almighty scream, all the dogs in the neighbourhood starting barking, and... omg I felt so much better after..... I mentioned it in one of my comments that day and in my replies people were chuckling away... he he he....
I still laugh about it now.
I have Graves Disease and severe TED, and had my thyroid totally removed in June, and several other illnesses, my life has been hell since, so I've decided to get rid of the deadwood and move on, they were just dragging me further and further down, I'm better off fighting my own battles with the NHS, and self medicating with b12 and plenty of other vitiamins, I wish you all the very best xxx
Hi Tish27 that just made me laugh out loud the thought of you screaming in the garden. When I lived at my other house if I got frustrated I used to go out and prune something lol. xxxx
Cant help but can certainly relate. I used to be skinny and full of boundless energy doing yoga, swimming, walking, cycling and driving out of town to shopping centres thinking nothing of it. Now my car sits on the drive and I sit on the sofa! I do try and I am just about managing to keep my life in order. However I puff and pant through my days of housework and gardening and all the extra things I have to do now since suffering a major bereavement 21 months ago, but at the end of the day I am utterly exhausted and can do no more than plonk in front of the telly. I have no time or energy for outside interests or rebuilding my shattered life which I badly need to do. I think about it but it does't get much further than the thought. I have the added stress of dealing with difficult neighbours who seem intent on winding me up and show little consideration either for my medical condition or for my recent bereavement. I have no idea why they dislike me so. I am still maintaining a good relationship at the moment with my son and Auntie but have had mild fallouts with them at times, I do think they are the only ones who either make allowances or understand what hypothyroidism actually feels like.
I think some people hear the word, look at you and think well she's looks ok, a little overweight, she should lose some weight, it would help....grrrrrr.......if only I could. I recently had my first one of these new health checks the NHS are providing, when my BMI showed I was overweight I was given a free referral to weight watchers.....been there before, seen it done it......now have more weight to carry around on my guts, look at least 6 months pregnant and have to buy clothes to suit. Hate it, I try to ignore it, forget about it, but its always there at the end of the day, that belly bump, those bulges......yuk. I do try, must have a strong will to live, I go for long walks. Weight stays the same, feet get sorer, breath gets shorter........
Basically I have given up and accepted that I have to live with this thing for the rest of my life now and that it is unlikely to improve until GP's make the effort to either offer more support or treat differently.
I am so sorry to hear this, and that's why so many of us end up self medicating. Its such a cruel illness and to hear how fit you were made me exhausted just reading it. Please do not give up...
For me personally I wish I could avoid all human contact as my life would be easier, and this is coming from a once ultra sociable person who thrived on human contact, now it just seems to cause pain!!
Hi missdove, yes and in between all that activity I had a husband and two sons one of whom was born with special needs, wears me out just thinking about all I used to do now.
I am on 100mcg thyroxine, I also take vit C and B6, but the B6 is mainly for my breast pain. I know I should persist and ask for more tests, but I feel like I can't be bothered to even make the GP appointment. Its all I can do to cope with my daily routine and I am finding if I disrupt that routine I get behind with everything and become very stressed.
Your predicament is very well known to me and though I can identify with it I am sad that this debilitating condition can take such a heavy toll on our social lives.
I have suffered for years,gradually wanting to do without social occasions which became hurdles to get over when they should have been an enjoyable relaxation to look forward to.
How do you explain to your GP that you have no social life when he's dealing with patients with life threatening and terminal illness? I feel as though he would just laugh at me. I know there are people worse off than me and I am full of sympathy and concern for them,however it is as you say difficult for people to understand what you are going through.
The worse thing has been my daughter in law not wanting me in her life,which has been hard for me as I don't understand why and it in turn is damaging my relationship with my son and grandchildren because I don't see them.I admire and have had great respect for her but am not going to become confrontational and volatile when it's not in my nature or my way of handling things.Maybe she has some problems too?.
Thankfully I have some great genuine friends whom I truly value which helps and needless to say a husband who is my rock.
I don't know an answer but have only just started getting things sorted regarding blood tests etc since discovering this support group.I shall leave no stone unturned in order to try to get answers..have obtained the details of a nutritionist from my surgery notice board today,who deals with thyroid problems,so will hope she is local to me and see what help I can get for losing weight ....that would be a great move forward.
My thoughts are with you and will report further anything of use if I am successful X
Thanks Marfit, yes its so true that once enjoyable occasions turn into mountains to climb. And so many do not get our plight, as we can walk and talk and look ok! Ha if only knew...That's a shame about your daughter in law and good for you being the bigger person. And you are blessed to have a good solid husband and friends that understand as that can make all the difference. I am on my own and some days it gets really hard to just continue pushing. Good luck with losing some weight as that will make you feel so good, and please keep me posted.
I almost cried when I read your post. This thyroid problem makes me a tad emotional and my heart goes out to you. Big hugs and I do think you must get your levels sorted out, because they are clearly much too low. You say you are self medicating. What are you on? Have you tried T 3? It has been brilliant for me. I am not perfect yet but hoping to get there some day. There is a wonderful doc you could see and if you would like his name, just pm me. Good luck, keep battling. Things will get better! xx
I understand a lot of what you are saying. I am lucky to have a very tolerant and supportive family. I have had over 4 years of what you are going through. I was off work for some months but I managed to work 4 mornings a week once medication improved (which is not available to everyone). I was close to giving up and accepting a low quality life for the rest of my life but by brother told me not to give up. A while later I discovered T3 and it improved my mental capacity (key to relating to others) but when I stopped T4 and went onto pure T3 I moved back towards normal and can cope much better (even lost weight and now need a belt for all my trousers!)
There are two major problems for relationships through this time.
The first is the lack of ability to think. Everything becomes an effort. If I say something and they don't get it first time, I am too tired to say it again and get resentful/frustrated. This was the hardest things for my wife. I was very unreasonable. I could not tale part in family conversations because they move too quick for my brain to take in. I used to leave the table as soon as I had eaten and go and lie down because I could not follow the conversations and it made me feel bad. If I heard a key word and asked them to explain it was as though 'I hadn't been listening' and they had to repeat it all (slowly). It just didn't work.
The second is how all this made me feel. I got very down. There is both a chemical problem and an emotional one. Thyroid issue have a chemically depressing effect. I could sometimes feel a wave of tears or unhappiness was over me. I learned to recognise it was chemically induced and that helped me fight it. Other times the isolation of the illness, constant tiredness etc. just got to me. The remedy for me was to adopt a strategy to help me cope. I worked out what I could do and what I could not do on an average day and planned around that limited capacity rather than fighting it. For example I could do a useful hour or a bit more in the morning, rest most of the afternoon and do an hour early evening. Accepting this reality, I then fund something positive to do/achieve each day would make me feel the day was worthwhile. I sorted my music collection. I edited photos and created an album. I took some photos. I worked on my music system. I joined Spotify and built some music collections (free). I refurbished a Victorian pump and a small piece of furniture from eBay. Each day I did something positive so I felt I had achieved something. I did not try and do more than I could because if I took too much energy out it cost me next day. I learned to live within my boundaries. I still tried to find solutions to my health (eventually discovering T3 and getting it sorted).
I also explained my situation to friends. I helped them understand that I could only follow what they said if they spoke slowly and gave me time to process what they said. I tended to talk one to one as speaking with three people at once was very hard. I attend church regularly and just stayed seated in one place and encouraged one person at a time to join me to talk so I avoided several to one conversations! They grew to understand what I needed.
My experience was that I could read OK as I set the pace and I could talk OK - what was so difficult was taking in information from someone. It was very hard work as my brain made it like wading through treacle to get to understand what they meant. I am used to close relationships so this was very hard. For my wife it was a very tough period and she is the most patient and lovely woman you could ever wish to meet.
T3 sorted it for me over a period. It is funny stuff - powerful and idiosyncratic. I take 20mg at 6.45am, 20mg at 12.00 and 10mg at 5pm. If I take a smaller dose, it has no impact at all. If I miss a dose by 30 mins I suffer but if it is an hour I lose the rest that day and often much of the next day! If your body has trouble converting T4 to T3 it can make reverse T3 instead which is unhelpful as it blocks the access of reverse T3 to the cells. I was a little better on T4/T3 mix but everything improved enormously when I stopped T4 altogether. This is me and I can't say for everyone. I think the body adjusts it cycles to your regime and does not take kindly to changes once settled!
The book to read is Paul Robinson's 'Recovering with T3' available from Amazon.
So my advice/experience is to come to terms with your illness for the moment (while still looking for solutions) and build a positive programme. Do something positive each day, possibly start a new hobby. Explain to people your mental fogginess and frustrated responses to communication and ask them to be patient. Take time to talk and aim at one to one conversations. Work out your strategy with your partner or a close friend so you have someone to share with who understands and can support you. Remember that you are ill and don't let the depressive feelings control you.
What a wonderful reply, I think that part of my problem is that I cannot accept that I am unwell as I have always been able to bounce back, but this illness stops you dead in your tracks...I do not have the same issue with the conversations as you and am still pretty sharp, but not as sharp as I used to be! Its the physical symptoms that floor me, and like you say it can also wash over you at times on a mental level, it comes out of no where. I have learnt to pace myself, but just found it so sad that I could not continue the day yesterday with my parents and went home to bed to rest! That's all I seem to do most of the time, life has become very dull.
I know that I will end up on T3 only.
I am glad to hear that you are dealing with your illness in such a positive way...Best wishes D x
Oh missdove - I so sympathise with you. Although I was only diagnosed with Graves last November I managed to fall out with a long standing friend just before being diagnosed - not as longstanding as yours but long enough - and my extremely superior and often unpleasant brother - well suffice to say I used to joke that if we had met them at a party they are a couple we would try and avoid. His son did say that when there is trouble in the family my brother and his wife are always to be found at the bottom of it so it was bascically a case of self preservation. Falling out with people isn't my idea of fun but I seem to got very intolerant and just can't be bothered with any hassle in my life and sometimes it is easier not to bother.
Sometimes I used to wonder where 'I had gone to' and from comments made by lots of others on here it looks like that is something a lot of thyroid sufferers feel. I eventually lost weight because of being hyperactive but I spent most of my life trying to lose weight up until then too and I don't think there are very many photos of me in the house because I have lousy bone structure and always looked like a horrible blob in them.
Anyway, (((((big hugs))))) and I hope things get better for you.
Thanks Liz, Its good to know that you relate, but so sad at the same time if you get what I mean. I have gone from having pictures documenting the history of my life as they do, to suddenly a near 3 year chunk missing as it still shocks me to see 'the blob' I have become, I think some days I try and kid myself that all is well, but that does not last long!!
This is really the only place to be understood and where you do not feel like a total freak...
I think that's the sad thing Angie, that there are so many of us on here suffering. And no I am not quite ready to give up yet! Hope things improve with you, keep us posted...D x
hi, my husband was diagnosed with underactive thyroid and addisons disease last week...I have been doing my research to try and understand the symptoms and what he might start going through etc but can anyone give me any advice as to how to support him. I find that probably 1 out of 20 posts are positive and as a wife ill be honest its a little scary to think that my husband is going to suffer. any advice welcome please as I would like to support him as much as possible. thank you x
See my reply of today (above) on how I have coped. My wife has supported me through 6 years in total of illness. There are remedies but it take time and patience. She now says 'I have got my husband back' but it has taken a long time to get there and can still be a bit precarious!
No. I read Paul Robinson's book and selected a does that I thought was about right. I started with a slightly higher dose but got symptoms of hyper, so reduced the dose a little. I then stuck with that dose and have not had to change it. I resist the urge to make changes as I think the body accustoms itself to a dose and changes can cause confusion. I have also found that some T3 (a german version 'Thybon' in particular) can be more easily absorbed and the same dose made me hyper. I only used it as the normal (Mercury) tablets were not available earlier in the year but it gave me a headache. I would have needed to reduce the dose by 25% if I had continued on it.
Hi Steh1911, maybe put this up as a separate post as it might get lost on here. Sounds like you are doing all the right things already as information is power.
Hi Miss Dove. Gosh I really feel for you. I have felt the same and It's horrible when you can't see an end in sight. I have also had the shoddy NHS treatment and been to see 3 different GPs at the practice about my symptoms countless times, each time being patronisingly asked if I was just very stressed and anxious at the minute, told all blood results were normal, told it was all in my head and refused ANY medication. Grrr!
Have you sought the advice of a Naturopath? I have always been sceptical due to their lack of formal medical training but with my doc doing nothing whatsoever to help me, I have lost faith in medics at the moment. I met a relative of my boyfriend's at a wedding 3 weeks ago who is a naturopath and he spoke to me at great length about my symptoms then and the following week and he sent me an 18 page questionnaire to complete and send back to him, I was at my lowest point when I met him as was just feeling horrible, depressed, zero energy, no libido, total brain fog and lack of concentration, sleeping all the time, really irritable with everyone, every joint in my body aching, hoarse voice all the time. I have had hair loss for about 20 years too and the other symptoms have gradually got worse over the last 5 years. The naturopath looks at all the symptoms and medical history in great detail and doesn't place emphasis on pathology results. Since getting his help everything has dramatically improved for me. I have much more energy, not irritable, not depressed, rarely have brain fog. the only thing I haven't noticed yet is my hair growing back but I realise that might take time. I am taking a scoop of L'arginine based product called Ark 1 and heaped tsp of L Tyrosine in a pint of water twice a day, morning and night. The Ark 1 cost me about £50 for 600g tub(although it gets cheaper each time u buy with loyalty discount) which lasts a month so is not cheap but for me it's worth it because I have my life back and feel like I can now function and hold down a job whereas before I couldn't because of the brain fog and exhaustion. The L Tyrosine costs about £15 for 500g.
I would definitely recommend a naturopath if you haven't seen one already and if nothing else is working maybe try the Ark1 and L Tyrosine even just for a month to see if it works. The L Tyrosine is more for brain fog and not sure if you suffer with that. My naturopath is based in London if you're anywhere near there i can give u his details.
Hope you get some relief from this soon MissDove *hugs*
Hi CamillaB, thanks for the advice, I have tried a naturopath but I am not sure that he was that good, I tried a couple of the things he suggested but they did not help. I have tried L Tyrosine but not sure that I gave it enough time and then read something about it not being good. Sometimes its so easy to get bogged down by all the information, its great that its working for you though, I truly wish that the 1 drug fits all approach did apply to us as that's what makes this illness so complex and frustrating and difficult to treat.
If you could email the details that would be great...Take care D x
I'm sorry I can't offer any help as I'm still trying to understand this illness myself, but I do understand how you feel. Completely. I feel the same - we took our granddaughter to Disneyland Paris and what should have been wonderful was hell for me. Sitting on an electric scooter like an old woman, feeling massive and horrible not to mention exhausted! I ended up having a bit of a meltdown in the park one day - I just felt like a waste of space. I have a very good GP who is happy with me researching and suggesting things and willing to look into ideas I bring to him. I have a fabulous husband and family and yet I don't feel like me anymore so I find myself pushing people away. I guess we just need to try to stay as positive as we can and accept help from those willing to give it. This site is a blessing as at least here we know we will get understanding from people like ourselves.
I really feel for you, as you sound just like me, I enjoyed being 10 stone and sometimes only 9 & 1/2 stone for many many years, then 2 years ago, I became ill with an underactive thyroid, and put on 1 & 1/2 stone which has now rocketed to 2 stone making me 12 stone, yuk I hate myself in the mirror, I hate my huge belly and broad back, I look like I am pregnant. I have a severe heat and cold intolerance, my comfort zone is only a few degrees. You are not alone, I cannot have a relationship, I hate the way I look and like you I explode over nothing at all and end up in tears. I used to have some nice friends but now I hide away from life, its just easier that way.
The picture on my profile was when I was 10 stone and happy. I go to see an endocrinologist 28th august, lets hope he has some answers. Miss Dove, there are some lovely genuine people out there, maybe it may be a good idea to make some friends for now who have the same illness as you, at least you would understand one another.
Just take care, you sound a lovely person, Margriet.
Thanks for your reply Margriet, and what a lovely picture if you. I cannot believe I am same the person now and like you I have broad shoulders and I know I walk differently now, I still try and walk tall but I just look a wrestler!!
Its heart breaking what it does to us, I really hope that you get an understanding Endo who can look at the bigger picture and help get you back on track. I think back to how I was and it seems like a world away.
I understand completely where you are coming from. I have four children and I have alienated three of them - thank goodness for number four - he understands me completely. I avoid people like the plague where once I enjoyed socialising as the mainstay of my life. I am now a fat frump with thin hair, scrappy nails and do not care if I wake up tomorrow. I am so lonely but am hopeless in company. My last hope is Mexico as the nhs is useless, all the drs in my practice make me feel like an idiot.
Oh dear how sad, but I can also understand. I am glad that you have one understanding son as that can makes such a big difference.
I had to work my way through my surgery and finally it was the 5th and last GP who is finally supporting me but I am so unwell now I am not sure things can change, I just wish I had met her first as I know things would have been very different and that makes me so sad but also vey very angry!
Are you going to try T3? I have been self medicating for a few months and it is helping me but I know I need a lot more and I have a long way to go as you cannot rush the increases.
Drop me a line anytime if you want to off load...D x
Stick with it because if T3 doesn't work something else will. It is what keeps me going - there is always hope. I have started substituting Levo for some T3 and I have lost a couple of pounds already and am hoping that it will also do something for hair loss. I just wish I could turn back time and not have this awful illness that the medics are unwilling to treat properly. Keep smiling xxxx
That's exactly what I have been doing, as I have given up pretty much with the private endo I paid out for with money that I do not have, and my GP is at a loss now as to what to do with me...That is great that you have shifted a couple of pounds, better than putting more on that's for sure, and hoping it will help with hair growth. I have everything crossed for you and all the others on here fighting their own battles.
We are living on the same planet and our GP's think something else.
I've been diagnosed with underactive thyroid in 2010...but my symptoms were back to maybe 5 years ago. I lost very good job in managerial position; destroyed 2 relationships and my weight was one big yo-yo effect and loosing hair rapidly. Last year I read topic about taking Levothyroxin early morning, so I took advice and take it my dose of 125mcg regularly at 6:00am and since then I feel much better. I was working as a live in carer, but in April I couldn't cope with that any more, because of depressions.I took long break 9 weeks and spend it with my children in Slovakia, but they were also surprised about my moods and depressions. I joined Weight management at local pharmacy and since March with quite strict self-discipline I lost nearly 7 kg, which I am very greatful for.
Last week I seen my GP about excessive hairlose and she gave me exactly 4 mins, in her office; complaining I had my blood test in March and it was OK. Today had a phonecall made by her doctor colleage who told me I need immediatelly lower my dose of Levothyroxine to only 100mcg. But no more explanation has been given.
Since I am back from my long break, I take extra Sea Kelp and try so hard to be as much positive as possible. Also applied for new jobs. Working in 2 part time jobs at the moment, but often feel very tired.
But it's understandable, I don't want to give up just yet. I am not getting any younger and life is getting shorter, so I try to enjoy every day, walking on my own without friends, just hope one day I will get better and fight to NHS doctors, who never wanted to refer my to Endo-consultant.
And little advice for tomorrow morning: Take a deep breath, look to the mirror and tell yourself: I love myself and I worth it! And smile, with smile is everything easier, other people will smile at you back.
Hi J, thanks for you lovely reply. Good for you that you are hanging on to your part time work, I had to finally give up work in Jan this year, I used to work up to 50 hours a week and at the end I could barely manage 6 hours a week. I have always loved working as it gives you a sense of purpose and fulfilment and I miss it very much, oh and it helps pay the bills!!!
I hope the reduction in Levo does not cause problems for you, please question as to why
And yes I will give myself a big smile in the mirror in the morning...I do sometimes wonder though as I do try to stay upbeat as much as possible and try to be positive and keep my sense of humour that people then think 'oh she is ok she can joke and smile'!!!
Hi D, thank you for your wishes and you're totally right about the bills
I will selfmanage Levo, if start to feel worse and will bother GP with blood test again
I am trying persuade myself that money are not most important for life, but health.
Money can't replace a late husband to my young widowed daughter, so that keeps me going to and I try to support my little grandchildren. When I talk to them on Skype; often cry after, but that gives me strenght to overcome my illness and everyday struggles.
Please ask your drs why you have to lower your Levo before you do so as knowledge is everything. I have no trust in doctors any more and am self medicating. What they prescribe is only keeping me alive but with no real quality of life. It is hope that keeps me going so I WILL keep smiling as should you xxxx
Hi Christine don't give up. I have had this for 18 years of Hypo and sick Levo only. Just received my Cynomel from Mexico and I have started to reduce my Levo down to 75mcgs from 100mcgs. I am determined to try this T3 after researching for so long. It has helped many. Look up what Dr Lowe has to say about it. I have also gone from under 10stones to 12 1/2 and feel awful. Chin up and take care.
Thak you for such a lovely reply. I also am trying T3 and have great hopes for it - fingers crossed. The doctors don't seem to care that we are not feeling well (I have tried every dr in the practice ) so self medicating seems to be the route to wellness - heres hoping!! Good Luck!! xxxx
Hello Christine I have recently changed my doctors after 7 years with the same surgery and like yourself have seen endless doctors. The sad thing is that when all the tests come back I am told everything is withing the normal range (I have printed test papers) so I see that. Even all the Vits etc but still not right. I have already started to reduce my Levo so that I can try Cynomel from Mexico which I now have. We all somehow have to suffer in silence and it is very wrong this is ruining people's lives. If you want to talk you can inbox me at 17cats@17cats.karoo.co.uk. Good luck. Diane
I am so sorry you are feeling so bad. I understand completely where you are coming from. I alienated friends, family and colleagues until I learned how to manage my condition and learned a lot about Levothyroxine. It's taken me 5 years to get the hang of it. I kept attributing my problems to external factors, not realising that the problem was the illness. I still have family members who do not understand but I have understanding friends. Now, I just feel if family members don't bother to understand, it's their problem not mine. I have to live with the condition and they don't.
I manage my health very closely now, with regular blood tests, increasing or decreasing my medication according to symptoms. I have found that even 12.5 micrograms can make a difference to how I feel. If I'm even slightly over medicated or under medicated I feel unwell. This can result in anxiety or depression as well as physical symptoms. I do have times when it's hard to work or to socialise but I don't worry anymore if I have to make excuses not to do things. I avoid family get-togethers and try to see family members one at a time or briefly rather than spending a lot of time with them.
I haven't tried T3 yet but I have an appointment with an endocrinologist in October. I don't know if it will be helpful, I'll just have to see.
There is hope for the future. If you can find the right medication and the right dose and manage your symptoms closely, you should be able to find a way to live better with your condition. I found it helpful to do an ACT mindfully course...it helps you to manage the psychological effects of long-term conditions. Now when I feel bad I tell myself that I am not my thoughts, that my thoughts are not me. I also remind myself that the way I'm feeling is my illness and not me. It teaches you some good skills to cope.
I have found it best to keep to same make of Levothyroxine, adjust the dose finely, make sure I always take the tablets at the same time of day and have regular blood tests. I've learned a lot from other people on this site and I'm so relieved to know that many people share the same symptoms and problems with maintaining relationships. It's not your fault...it's the illness.
You appear to have a very sensible approach to your illness, I have never been one for routine but I think with this illness you have to have structure and be strict with certain things, I still tend to be all over the place, I am trying but its hard.
I am looking at therapies as I am really struggling with the whole being unwell thing and ACT looks like its very positive as its very clear that I am not coping well at all...
And you never know your endo might pull something out of the bag. And yes this site is very good at making you feel like you are NOT the only person acting or feeling a certain way because at times I really feel I am going completely bonkers! I am missing some of the regular faces on here though as a lot do not appear to be coming on here since the changes, which is a shame.
I agree, you are NOT alone, if that makes you feel any better. I felt better when I joined this site. It makes you realise that you are not alone! You are not going mad, it is our illness that makes us like this and the medical profession are failing us. There a lot of us. Keep trying.
It is reassuring on one hand, but on the other so very sad that there are so many of us suffering, especially with an illness that is not taken seriously by the medical profession, or people in general! When I mention my illness you can see people looking at you strangely and then the classic line 'Oh yes that's easy to treat I have a sister, mum or cousin who has that and is well on Levo blah blah'
My heart goes out to you as I know only too well what it feels llike to have family and friends who do not understand, or who dont want to, or presume you are a hypocondriac or imagining it etc. Because I live alone (but with dog, so not really alone) and am quite happy with my own company, they assume I must be lonely, or depressed (not so). I hear from the only two family in this country (they live 20 mins away by car and I don't drive) when it suits them, and usually on 'high days and holidays'. After virtually no contact from one of them I had an e-mail this week saying (in response to one I sent saying I couldn't handle any stress at the moment due to all the effects of my 'condition') 'so sorry to hear this, get in touch when you're feeling like your old self'!!! Well as you know, people like us are struggling every day (mine has been for three years, but as I'm in mid 60's it feels like it will be until I pop my clogs!), so guess i will feel like my 'old self' when I'm ready to go!! n. A And as another person said trying to explain it all it so frustrating as you can see the doubt in their eyes, as you look 'okay', but they don't see you at the end of the day, or the next, when you're exhausted and debilitated. One consultant (not an endo as I haven't been diagnosed as hypo by NHS only by a Holistic doctor) said, 'yes it can be debilitating' - (I have a bad vertigo problem).
Like a lot of people on here I self medicate, have tried the Homeopathics route (no luck), take good quality supplements. Have even been told by an Audiologist that my 'problems' are probably hormone related (female, not thyroid ones), but the GP won't put me on HRT because of my age! So now looking at natural HRT and waiting to get my levels checked (by a Naturopath),but as you know all these things cost and I'm on the lowest pension. Think my relatives don't understand why I don't 'get a little job', but when cleaning my flat absolutely exhausts me, that's out of the question. why people, who you've known all your life, behave this way, is a mystery and sometimes I wish I could pass all my symptoms over onto them somehow and see how they would react - I think they would probably think they were dying!!
All I can say is, just look after yourself, keep reading on this site as you'll get a lot of helpful info, research stuff, keep a sense of humour (I watch Dad's Army, but your choice may be different!), and if having less to do with people who do not understand helps, then do that too. don't waste your precious energy on them, regardless of what they think. good luck - you will get there when you get onto the right thing.
Thank you so much for your reply, and its good to know that this site is here for us as like you say no one else appears to understand. I would not wish this is on my worst enemy due to lack of knowledge everyone else appears to have, and there are days when I have wanted my so called ex friends to go through what I have to on a day to day basis so then they would understand, but life does not work that way.
There is nothing worse than that line 'when you are back to your old self again!!!' If only...
I am struggling so much to just keep a lid on it and do not know if I can maintain this life for the next 30 or so years? Really is this it?
And the power of pets is also underestimated in the comfort they can give, I have pets and they can manage to put a smile on my face on even the darkest of days.
I hope that you get some respite from this awful illness.
Thank you also for your reply. It's good to know we're not alone eh? And I really think that remarks like the '...old self' one actually make me feel worse as it just gets me upset and that's not a good thing with this particular illness. thank god for my dog is all I can say. will let you know how the 'hormone route' goes!! xx
I can understand what you going through been ill for 4 years my self I used to work full time now I struggle to work part time this is a great effort on my side often feel like giving up but so far I have managed to
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Roller coaster ride on Levothyroxine
Levothyroxine T4 is 'ENTIRELY NATURAL!!' Beware Long Rant Alert
