i , came on this site for advice but scared as no one gets better or loses weight, not sure its worth going on like this, is this my future? doctors that dont care , snide remarks about weight and being lazy?
dont think i can go on like this: i , came on... - Thyroid UK
dont think i can go on like this
Written by
lola1956
To view profiles and participate in discussions please or .
43 Replies
•
Lola
I felt like that too at the beginning, I had my first visit to the endocrinologist, saw my person's assistant and he really didn't have the best people skills. I came home feeling really down, read on here about people who had doctors who just isn't seem to care and wouldn't give them the medicines they needed etc. etc. and felt like i was doomed!
I felt so bad, I remember my first ever question was 'will I ever get better? ' and yes, I have done. I met my 'real' endo next visit, she really understood exactly how I felt, she raised my thyroxine and I came home feeling like I was floating on air. I had a spell where my hair was coming out every time I washed it but that has stopped now, my aches have pretty much gone and I'm ok now.
I think a lot of the people who use this forum are people with real problems, there are probably a lot more out there who don't come on because they are happy with their treatment and doing well. This forum is very good if something is bothering you or you want answers, there is always me one who knows what you need to know. Everyone has 'been there' and can really understand what you might be going through and if friends and fairly not understand you everyone on here will. I'm sure there are people out there who are losing weight too.
I have a sister in law who has had no thyroid and has been on thyroxine for the last forty or so years, she is slim as anything and really active - climbing, sailing, mountainbiking, you name it she does it - she is very healthy now. You could easily be like her.
Have you been diagnosed - are you overactive or under-active and what are you taking at the moment?
Liz x
my hair is falling out too, i sleep most days or sit in a trance like state, i ache all over , my ankles are swollen my face is fat, i cant speak without getting mixed up, its like im drugged and i dont think i can do this much longer, but thank you for your upbeat answer
Have you had your iron, ferritin, folate, vitamin b12 and vitamin d tested? It would be a good idea if you can get it done. Low iron/ferritin can mean that you don't use the thyroxine as well as you could be. It can also contribute to hair loss. The B vitamins are important too. Vitamin D deficiency is very common in the UK and comes with a whole host of symptoms that can make you feel rubbish.
I felt rubbish before I found this site. I have gradually got better and better after being on the wrong treatment for so many years. Last week I tweaked my medication slightly and have noticed an improvement already. I am working again as of last year and I am enjoying my hobbies again too. My hair is better as is my skin. I feel better in myself and have more energy. I really thought that was it for me too but now I know things do get so much better.
Hang in there. We will do our best to support you on here.
Carolyn x
• in reply tolola1956
Bless you! Not everyone is the same. I think you kind of get used to feeling like you have Alzheimer's and lethargic. It does get easier but you mustn't give up! If there are any support groups near you, go to one! You will pick up loads of info and details of good doctors in your area. I'm on 250 Levothyroxine and still going up! I promise, you will get there.. Just keep smiling xx
I have much the same symptoms as you.i have now been on thyroxine for 8 months and still have the swollen ankles and legs, I'm overweight, tired etc. I know it doesn't help you but if you ever want someone to message who feels the same as you do just to moan to about it all please do. It just helps in many ways to have others. Feeling the same with same symptoms just helps to get mutual support.
diagnosed 2 months ago but borderline since 2009 doctor told me recently, i am on 50 mg and i am under active
Maybe you need a bit more thyroxine. I started at 50mcg in February and am now n 75/100 alternating.
Your doctor sounds a creep, who do these guys (and women too ) think they are, could you take someone in with you for support?
Honestly way back I used to find myself looking at the people I was speaking to and think they think I am off my head.. It was like the real me wasn't there any more.
I became hypo during my treatment and like you I could just sit and stare into space for hours.
My hair fell out when I wasn't getting enough levo, I also felt really cold. When I managed to get an 'extra' blood test, the nurse doing it asked why I was there because I wasn't due a blood test! I said I had explained it to the receptionist who had booked me in and that if she didn't want to do it I would go away. She did it but I felt really terrible when I got out to the car, I just felt so bad.
The results came back and they said I was ' within range' - ie they weren't going to do anything. In the end I spoke to the doctor who also said I was within range and I said to her that the range was SO wide that it would be very difficult not to have fitted in somewhere but that I didn't feel good so I obviously wasn't at my optimal point in the range and she raised my dose for me. I saw the endo a few weeks later and stayed on the same dose.
My hair stopped falling out when my dose was raised. It was absolutely amazing, I went from having to rise my hands to get the hair off them after I had washed my hair to finding no hair in the bath - I had even started photographing the chunks that I pulled out if the plug hole as evidence for the medical staff who said it looked ok - actually I started keeping it all, I intended taking it along to wave under their noses too, then suddenly it just stopped falling out so hopefully when you reach the right amount if levo for you yours will stop too.
Like the others say, hang on in and you'll get support here.
Liz x
the bit where we lose hours being in a trance ?why does that happen, sometimes i cant get up in the morning as im awake but in a trance
the bit where we lose hours being in a trance ?why does that happen, sometimes i cant get up in the morning as im awake but in a trance
after being given one month of medication i had a blood test and doc said it was now normal? how could it be normal when my life is over as i feel so tierd and depressed, full of pain yet that is meant to be normal, no one wants to help, i feel all alone with it
2 months? And you felt ill for several years? It's going to take longer than that to reverse the damage and get better. Levothyroxine is good but its not a miracle cure. 85% of people who take it n ever give it a second thought, they have normal lives, normal weight and they have never heard of forums like thyroid uk, tpauk and sttm. I was brilliant on levothyroxine for around 10 years but then went on a diet, lost three stones and with it, I lost my t4/t 3 conversion ability. I now take different meds containing t3 and no longer have hypothyroid symptoms. Reading forums like this can make everything seem like doom and gloom because the people on here generally represent the 15% who donT get well without extra help... But with luck, you will be one of the 85%.
Suggest you buy dr tofts book, understanding thyroid problems which explains things reasonably well. (£5 amazon). And dr peatfield s book, your thyroid and how to keep it healthy. (£10 amazon). Check all your vits and minerals, b12. D3 and so on....
I Promise, you can get better..... You just have to work it out.....
Xx.
It's not really like that. it just seems to be that way because the people who do not get better are the ones who keep posting, those who get better either stay and keep trying to help others or they just disappear off the radar.
I agree that it is demoralizing to have someone who should have at least an inkling of a clue about your condition - the GPs and endos - yet they are the very ones who leave us feeling ashamed and worthless. But here is some hope, a ray of light, and many have found this forum and it has set them on the path to recovery because they start to become pro-active about their health.
Initially I just read everything there was to read, including other people's questions and gradually started to ge the confidence I needed to ask for better treatment.
Above all, this is a SUPPORT forum, a place where you know that someone will listen and not judge.
Keep asking, keep reading, and you will make a change in your life, maybe not next week, but you will. I have been ill for more yers than I care to admit, but I am getting things sorted out gradually.
Nobody will ever make snide remarks about being lazy here, we've heard it and suffered it and would not wish it on someone else.
Take care, Lola1956, and please stay with us.
Marie XXXXX
i read it all but i cant get it to stay in my brain, i have wrote some stuff down to take to doctor but know he will poo poo what i am saying but thank you for your kind words
i am very depressed and cant even look at myself in the mirror anymore feel so ugly and old,
I fully understand, I had all but given up hope of ever feeling well again. The picture you see is not me as I am now, I have gone completely grey and I had put on about three stone since then.
But the good news is that since I started to take control of my life I am less depressed, and have lost a stone since December. The funniest thing of all is that I noticed a little dark streak in my fringe the other week..I was gobsmacked! It has been a bit of a struggle but I am slowly getting there. I am 68, by the way, and have been without a thyroid since I was 36. I have been avoiding mirrors for absolutely yonks. Ever since the last time I went to the hairdresser - at least 25 years ago. I always had a tiny little 'elfin' face, and I looked in the mirror when my hair was being done and I had a huge 'moon' face! I hated myself!
But what we must always remember, is two things. (are two things..?) first, our disease is not what we are. Second, other people are more interested in how we treat them than what we look like. And if it is different for some, they are shallow b******s who don't deserve us. XXXXXXX Hugs, Marie
shawsAdministrator
The fact that you have been newly diagnosed although reported clinical symptoms before has probably caused your weight gain. Your dose 50mcg is a starting dose and should have been increased about 6 weeks after beginning levothyroxine.
You are due an increase and some GP's are apt to keep patients 'within normal range' which is wrong. So get new thyroid gland blood tests done if you haven't had them recently, get a print-out and post the results on a new question complete with the ranges. Someone will then comment. If you haven't also had a Vitamin B12, Vit D, iron, ferritin and folate have them done at the same time.
Don't worry You can get well but unfortunately we have to read and learn so that we know more than most GP's or some Endocrinologists.
I got well by joining Thyroiduk.org and then the support group started. So, that's what we are doing at present, trying to support sufferers who haven't got well.
One size doesn't fit all and what medication suits some others have to try an alternative. The problem too, is that the British Thyroid Association say that levothyroxine is the 'one size fits all' and doctors are told that is all they can prescribe. You may be one of the fortunate ones in that once on an optimal amount your symptoms will go but it is gradual.
Many people do get better on levothyroxine and therefore their lives carry on as normal and I doubt they would even think of searching for answers.
I believe you will think this question in the following link could probably have been yours.
Weight gain is a very common question and it is a clinical symptom of hypothyroidism. Usually, when on an optimum dose the weight gradually comes off. Unfortunately GP's are unaware and are apt to prescribe anything other than a decent dose of thyroid medication.
web.archive.org/web/2010112...
There are other topics at the top of the page which you may find informative.
i have osteatheritus as well so weight gain is making life harder
Hi Lola,ask your doctor to refer you to your local gym. I know it sounds tough but it can help. They have special sessions for people with problems so you should get the help you need without too much embarrassment. Take care my friend you are important to us.x.
So annoying I typed all this out and twitched and managed to lose it all!
Anyway, Beaton's idea is a really good one, I did exactly that about three years ago. I got my GP to refer me to a community gym attached to a local village college. The people in the medical referral group are really lovely as is our instructor, the group is made up of people all abilities ( no one sporty though) all ages, all shapes and sizes just ordinary people who need a bit of help to get fit, it is fun and everyone enjoys themselves.. No serious gym bunnies.
Everyone is really caring towards everyone else - kind of like on here. It is free, they meet for an hour twice a week, you are checked out first by a trained instructor and given an easily attainable exercise plan based on your level of fitness.
Eventually I improved so much when my free sessions were up I paid for an off-peak membership and still go along, sometimes with my old group and sometimes at different times where I meet people I met in the group. Everyone got on and we still go out for Christmas lunch. I'm sure you would enjoy it.
Liz 
I'm glad this worked for you.x
I'm getting better and it's thanks to this site and the lovely people here. The info. i have received has helped me so much. It has given me confidence to ask and question doctors and to take my own health into my own hands. Stay with us Lola and you too will improve your health one step at a time my love.x
As others have said, forums like this attract the people that are having problems. I've been hanging round these forums since 2009, but I never see the two friends I made when I first started posting. I am still in touch with them both, but they don't post any more as they are both well. One was in total despair, but has now been diagnosed with other, allied conditions, and has been properly treated. The other is also well and working for thyroid patients in another way now.
You can get well, but maybe first you need to be angry enough to go out there and learn about this condition and take on the medical establishment. If I hadn't done that I know that I would be stuck in bed by now with a CFS diagnosis.
Get mad, and then get even!
thank you all but i have no fight left in me, i had it all and didnt see it was all slowly slipping away, take care
• in reply tolola1956
Lola love please email me? Busdev33@yahoo.co.uk
lola - I'm sorry that you're having a tough time and understand what you're going through, as do many of us on here.
Firstly, you need to decide that you'll not let this horrible illness get the better of you. Secondly, read up as much as you can but I appreciate this won't be easy. If you can make a few notes that would be good.
Thirdly, tell your GP that you want blood tests done - iron, ferritin, vitamin D and B12 etc etc. Is there anyone who could go with you? Your GP needs to realise that you're not putting up with feeling lousy any more and he needs to work with you. Ask about an increase in thyroxine as you're obviously on a starting dose.
As marram says above, you need to take control of your life. We all understand how you're feeling and will support you. Many of us have had to fight to be taken seriously.
Take the first step.
Good luck.
Hi Lola. It took many years, but I for example made it back from the edge to pretty reasonable health - I had full blown chronic fatigue, was seriously hypothyroid, my immune system was all over the place, I was developing all sorts of secondary nastiness like Parsonage Turner syndrome (limb paralysis caused by immune attack on nerves), chronic sinus and other infections, back trouble, incipient lupus, major food sensitivities and the like. Then a thyroid cancer and a thyroidectomy.
This is long because I'm trying to paint a picture for you.
It took quite a few years for the pieces to fall in place though, as there's no standard recipe that necessarily works - and getting over the hurdles the system puts in our way takes time even if we have a fair idea where we need to go. (I knew I had thyroid problems, but could never get diagnosed and eventually lost the thyroid to a cancer)
You're on to this site though, so you've clearly got a will to do what you can to get sorted out. Even if it feels otherwise at times.
There seem to be two basic ways to make progress: (a) hook up with a competent doctor or other person that will guide you through some sort of a trouble shooting process, or (b) keep those fingernails dug in and haul yourself up. It seems almost inevitably to entail a lot of the latter...
It's pretty clear that while hard going for many of us the struggle is the important learning process. The key may be to never let go of responsibility for ourselves, our lifestyle and our own treatment. It seems equally clear that provided we don't give up that we're rarely handed stuff we can't find it in ourselves to cope with.
The hardest parts are perhaps the perception of incapability, bureaucraticlly induced blindness and indifference that many conventional doctors create when they are asked to treat thyroid illness and chronic fatigue, and the way the legal system by (no doubt with good intentions) blocking patient access to hormone and the like forces patients back into the hands of the profession.
It's a lottery, and most of us end up finding we have to keep on paying out fees and spinning the wheel until we find a doc sufficiently capable and/or co-operative to be helpful. It seems the health service in the UK may impose contraints that make it a lot more difficult to change doctors too.
So many of us experience the blind adherence to dogma in the face of clear symptoms ('your bloods are normal (beep!), you are normal! (beep) - with allegations of irrationality caused by the depression which is an inevitable part of the condition wheeled out to cover the old a** if you don't swallow this and go away; and with often T4 only prescribed on foot of these sometimes useful but far from reliable blood tests if you are deemed hypo enough to 'merit' hormone), clumsy/ideologically driven attempts at dialling in replacement and widespread lack of awareness/unwillingness to entertain the wider (e.g. hormonal, gut and immune ) dimensions typical of the syndrome.
Some are lucky enough to have just primary hypothyroidism (where the gland doesn't produce enough hormone) caused by e.g. mineral deficiencies, and to have throid conversion and use processes strong enough to use the stock T4 without problems. This seems to be relatively easily sorted - by supplements, and/or by some supplemental (T4) hormone if needed.
Many of us are in deeper waters - full blown chronic fatigue with problems not just with the thyroid (hypothyroidism) but many other systems - with additional thyroid conversion and use, gut, immune and endocrine (hormonal) dysfunction/imbalances and secondary (consequent) conditions like food and maybe environmental sensitivities, gut discomfort/irregularity, gout, arthritis/joint pain, hypertension, cardio-vascular issues etc. The latter may progress into full blown illnesses typically regarded as separate in their own right if allowed to progress far enough.
My personal experience has been that many of the tests used by conventional medicine often fail to pick up or only detect the more extreme versions of these conditions - and can be very misleading. e.g. adrenal testing seems only to pick up stuff like Cushings disease (far too much cortisol), Addisons (far too little) but not the chronically but more moderately elevated cortisol caused by the chronic stress and that seems often to be the underlying cause of thyroid disease and fatigue. (medicine as ever focuses on serious illness - which it rarely can truly heal - rather than the maintenance of health)
Another common issue seems to be that we as sufferers with these conditions can easily end up overly focused on adjusting our thyroid replacement without also enagaging in the wider picture.
This wider picture can be very wide indeed - it's basically about taking responsibility for managing our lives.
I've had to work on my mind, correct thyroid replacement, adrenal re-programming (still under way - but very promising), gut healing, various vitamin and mineral deficiencies, calming of the immune system and a gazillion other topics guided by a mixture of trial/error, lots of reading and study and intuition. Which can make it a long road. (if only there were significant numbers of capable practitioners out there)
Here's a more detailed list of most of the areas my path has entailed working in (in no particular order) over quite a few years:
- Avoidance/re-structuring of stressful situations - work (especially heavy mind work, dealing with difficult people), bad relationships, too much computer time etc. This can take a lot of commitment to organise.
- Mind training - meditation to calm the mind, practicing dropping conditioned responses, and being easy with oneself. It's so easy to get sucked into self blame over our inability to live 'normally'. This lady is great on compassion for the self: amazon.com/Pema-Chodron/e/B...
- Exercise - at times of illness very moderate, but it's important to keep on (gently) pushing.
- Cleaning up of my diet - elimination of problematic foodstuffs, and the eating of plenty of natural foods. Especially dropping wheat/gluten, sugar, milk and processed foods.
- Avoidance of electronic equipment - minimisation of exposure to phones, computers and the like. Radiation is draining.
- Optimisation of thryoid replacement to resolve symptoms - my focus for many years. It's critical, gets slowed right down by the problems in accessing the right treatment, but is far from the only variable in the mix. T3 proved essential in my own case as I don't convert synthetic T4 very well and it leaves me feeling ill. Against that thyroid cannot fix e.g. underlying adrenal or mineral deficencies.
- Reduction in chronically high cortisol (stress hormone) levels - some may actually have low cortisol problems caused by adrenal exhaustion as a result of longer term chronic stress, but it's part of the same issue. I came late to this having sorted my thyroid replacement, but, had still been left a residual low energy, unstable gut, residual joint pain and high blood pressure problems.
It seems i have a tendency to exagerrated stress responses (we can end up programmed that way as a result of foetal stress, post traumatic tsress, or just a stressfull life situation), and that as a result my cortisol levels are typically high. Which is probably what led to destruction of my thyroid. With too much cortisol the gut function is partially closed down (fight or flight response) - and this eventually leads to gut problems with low absorbtion of minerals and nutrients and eventual leaky gut - leading to auto immune problems and attack on the the thyroid.
The results have so far (one month in) in my own case been spectacularly good - blood pressure right down, feeling so much better, gut normality has returned, joint pains and gout all gone, losing weight, much better energy and stamina...
One lady's experience of an approach similar to that which i've followed: medicinegarden.com/2011/02/...
This is a manual that broadly sets out the approach I've used: clymer-healing.myshopify.co...
- Removal of mercury containing tooth fillings, and chelation therapy to remove mercury from the body. Tests are available to detect if its an issue.
- Supplementation - multivitamins and minerals, but with extra B12, D, ferritin, omega oils. Again driven by blood test results.
- Gut healing - broadly the 4Rs appraoch (Google brings up lots) - but especially avoidance of problem foods, use of those that are helpful helpful. (linseeds are great)
Don't give up. It's just the game of life....
ian
Hi iola please dont give up on this forum, i have had loads of advice and support and would have been totally alone without it, i had my thyroid removed on tuesday, and now starting on levo its a new journey for me and i know i can rely on this site for help and support take care x
Hi Lola 1956 I really feel for you. But please keep coming to this site for encouragement and support from others who know exactly where you are at the moment Sending Hugs to you Jeannie x
Hi Lola definitely keep coming on this site. I wish it had been available when I was diagnosed about 12 years ago. Like you I was desperate and scared losing hair dry skin and panic attacks mood swings. My husband (now ex) kept telling me to pull myself together. After finally being diagnosed thanks to my gp and taking my first thyroxin I began to feel better. So remember we are all here for you. Good luck.
Please stay with us everyone here cares about you and each other. This is the best forum Im on. People respond to questions with real knowledge and love. Iam getting better I havent said it recently I suppose because ive been busy! ( and im not getting the daily notifications grrr ) Two years ago i started with dizziness.. constant... a lot of weight gain and could not lose it. I started on Levo. It didnt do much but then the doc put me on such a low dose im not suprised. I discoverd Armour and Thyroid uk and Ive been getting better and better. The dizzies almost gone they dont get in my way anymore and i've lost 2 stone. Today i went shopping and looked in the mirror (full length) and saw myself and you will too. Its a battle but you can do it and we are all here for you. XOXOXOXO
hi lola sorry to hear you feel so poorly, am a lot better than i was end of june and feel for you ,please hang on in here this site has help me so much and people understand how we are feeling, most have been putting up will more than us for years. its a battle for all ,but we will have up and down days big hug x
Lola will you message me your details as I'm slightly concerned for your welfare! I'm a police officer and sure I can help you or put you in touch with people who can. Please don't do anything daft will you? Email me so we can have a chat? Xxx (busdev33@yahoo.co.uk)
lola1956• in reply to
hello stayed off laptop yesterday as i am very depressed and was worried that i was overloading my brain with "ways" to try get better, didnt think you nice people would worry so much, i am ok just very depressed , in alot of pain and confused with what to do next!!!!! thank you all for your informative and caring replys xxx
lola1956• in reply to
sorry if you were worried i am sorry if it looked like i may do that , thank you for your concern x
• in reply tolola1956
Phew! I deal with loads of people who are down and then just slope off never to be seen again! Use this site to sound off and don't be alone! We've all been there, only 3 months ago I nearly topped myself as I was so low! Doctor had put me on antidepressants which I didn't need!! I get down about my weight all the time and you are not alone in having a crap GP. The trick is to just keep going back, get on his nerves!! They will have to listen to you eventually. There are loads of lovely people on here to help you. I found it really useful! You have my email address if you don't want to post on here, keep your chin up, and don't be alone! Xxx
lola1956• in reply to
yes i am very depressed and alone but sorry that i scared you, xx
• in reply tolola1956
The depression is awful! I've been there. I got to where u are and thought sod this! I'm sick of feeling mental! I refused any more anti depressents (which they say isn't recommended) but it worked for me! I was like a zombie and cried for nothing sometimes! I felt fat, stupid and useless! Thankfully my fella is very patient and got me through it. Even just being able to have a rant sometimes helps!
hi lola1956 have you tried changing your eating to intermittent fasting only eating for between 7-8 hours day the rest of the time drink water or sugar free drinks try taking B12 and vitamin D with calcium if you stick to this for few weeks i feel that you will start to feel a little better
Take a look at my blogs. X
Hello there,
We all feel so down at times - or ALL the times, but you mustn't give up.
It maybe that you will read about most of us struggling on here for a better state of health, but don't let that get you down. It's because I have read and read many comments, moans, suggestions, battles etc. that I eventually collated a lot of evidence and knowledge (more than the surgery staff in some cases) which became ammunition for my battle - and yes I won! - to finally be referred to a Consultant Endo. Who has put my medication up finally!!
I now await better health, but still read the posts... just in case.
So you see perhaps what you see as negative may actually become someones positive 
I wish you well. Don't give up!
PRx
Phew !!!!!...this post is so like my situation, my hubby and family have given up on me, I have GD and TED, all sorts of other health problems, reading this has really helped me , I had my TT in June and life since has been hell, but posting on this site has kept me sane and given me the strength to go on, fight the fight, pick myself up and get my own life, I'm doing fantastic at the moment, getting out and about meeting up with my old work mates, but then I'm retired now and my money situation is fine, which helps, I really feel for everyone here who still has to work, or in most cases seeking work...,and running busy families, it must be so frustrating especially when fighting family and The NHS, my heart goes out to you all , thanks for all your help xxxx
Not what you're looking for?
You may also like...
Think I Can Lose Weight
Hi Everybody,
Thought I would just provide a quick update. I went on holiday!!!!!!
Decided...
I think I should go
I think the best thing for me is to leave, I've clearly frustrated people who have been trying to...
Dont want to sound like a hypochondriac...
Hi. Im just a bit worried that when i go back to the docs AGAIN this aft that im going to sound...
I can't go on, please help!
Hi my name is Janet I live in the UK and this is my first post, I was diagnosed hypothyroid 12...
I think this is helpful
This is a video of a recovery from m.e story. I know many of us on this site also have a dignosis...
I cant go on feeling like this no more ... i need to try antidepressants 😭
Hashimotos (I think)
Hypothyroidism.. never felt like this!
Can I take NDT while on Levo
