People who don't have under active thyroid. Do not understand . They look at you and think you look fine.
Do not understand : People who don't have under... - Thyroid UK
Do not understand
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Sleepyachy
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Or they think it just makes you gain weight so you need to just try harder.
I've struggled a lot having conditions no one can see. Sometimes I wish I could just turn different shades of a color so people can tell how my day is going.
Thanks for replying. Yeh deffo the weight gain. Gets me so annoyed . Inside. They make me feel like a big pudding. They see that I eat fruit amd not much else for my lunch. I don't even need to eat the food and I'd put on weight.
Unfortunately true of many " invisible" conditions. People find it easy to empathise if you are visibly disabled, blind, deaf, in a wheelchair or scooter etc. But not if you look " normal". Unless you walk around scowling and grimacing lol.
Perhaps we should get hats and t shirts printed and advertise our conditions. I think also the medical establishment plays down the severity of hypothyroidism and just assume taking a little white pill makes it all better. If only.
Hi so agree with you - I was a 8.5 stone lady until I got to 50 - never put on weight no matter what I eat - suddenly with no warning I went suddenly within weeks/months to 16 stones - I was eating too much medical people said - and the way I got treated by the general public or at jobs I went to was an eye opener - the weight has now come off after 25 years just fallen off - due to celiac problem and the way I am treated now is so noticeable. Shame on those who made me feel so bad !
As with a huge number of other health issues, someone looking at me doesn’t know I have life limiting conditions and I don’t expect them to understand or care to be honest 🤷♀️
Thanks for replying. So annoying . Or it's seen as a nothing illness. But then bad enough to need free prescription and life long!!! In mood to rant!!!
RegenallotmentAmbassador
yup… it’s awful isn’t it.
I ‘look’ really well, I take really good care of myself, so I don’t get any special treatment or a free pass unless I give great detail (which I’d rather not).
I have a few stock phrases to use as and when.
It hurts to just be today.
I would like to but don’t have the capacity to do that with my current energy levels.
Thanks for being so thoughtful (regarding my food allergies) but if it’s ok I’ll just have ….
Thanks for replying . Yeh they don't see the side of you. Aching pain. Tired etc!
Totally agree. Mine dropped into ME CFS almost 10 years ago and recently an ex next door neighbour phoned. (She already knew my condition,) "How are you? etc etc". When I told her, with minimal detail, she replied, "Oh, I have lazy days too when I just can't be bothered and I just slouch around in my pyjamas too."
I suspected all along that she had thought that and could tell by her friend's quizzical looks that she was on board with that. You can sort of tell can't you.
So - I did something that I have never done with anyone before and made it so that my number always sounds busy when she calls so that I never have to put myself out to answer her again. (Waste of valuable energy).
The feeling of liberation was fantastic. HaHaHa Haa!
I had tried too hard to try to get people to understand, you see.
I still have another friend who is in doubt about it all but I no longer try to explain. They can take it or leave it.
It has taken me a long time to reach this point but truly it has taken a bit of a load off me and makes me laugh a bit.
I hope you manage to get topside of your thyroid issues and very best wishes ❤
👏👏👏 I applaud this brave approach! Great idea 👊
Some of these friends or relatives move to Level 2 of not understanding and start telling me about people they’ve met recently with awful life limiting auto immune conditions….. and I’m like 😳
some idiot once said to me " but everytime i see you , you're out and about or doing something up a ladder"
well duh! ... that's cos when i'm a grunting achy mess dragging my sorry ass round the house like quasimodo, with a face that looks like someone whose having a stroke ~ i tend not to go out.... or climb ladders.
my cat and my close family know the truth... my employers would probably never have employed me if they knew the truth , and it suits me to keep it that way.
That's spot on!! My family know. They see the knackered me. The I'm too tired to do that go there. There like yr always tired.. which iam . But at work I put my work head on . And then home time comes. Collapse on sofa. Work all week . Recover all weekend.. Great
That’s me too Sleepyachy 😞 and that constant battle with Drs and medication.
Quasimodo haha I know that feeling. Sometimes I feel like ma face is puffed up. I say I need a higher doseOf levothyroxine.. the doc say . Your in the right range.!!so annoying. !!! I might function better at higher end range.. which I have had before.. 150 but then another doctor said go for another bloodtest and lowered to 125
Suffering continues. I tell folk difference . Before n aft the thyroid problem but the don't get it !!!
and as for the weight thing ... i guess we can't win either way.... i'm slim, hypo has never significantly affected my bodyweight .... but if i was overweight i'm sure everyone would think i "she's having yet another lazy pyjama day, while being fat, therefore she's clearly just lazy and eats too many donuts ... but i'm not overweight so they all think i'm an unsociable sod who can't be bothered to put in the effort to maintain a social life .
I get that last bit. People exhaust me, so I guess that makes me unsociable😂
Know all about the unsociable bit!! I've pulled the plug on anything social until the new year. It's necessity not choice.....until I can get my ndt sorted out......still a battle since the glorious one month of Amiodarone. How I've cussed over that wretched drug. People who are well and healthy have zero idea what it's like to have a long term condition. They think doctors can fix it. The truth is very different. It usually a case if fix thyself if u can....or find ways to manage.
So I'm being very anti social at the moment. Hibernating for the winter and hoping Spring brings a fresh spring in my footstep.
But, but, but I am an unsociable sod who....etc
Some cattle had escaped and were trotting down the road towards me. I glared, they turned round and ran away fast. If only it worked on some people...
😂😂 love the wording 🙈 not laughing Per se ❤️ yes a good description ❤️ prior to my diagnoses I could walk miles! My hair wasn’t thinning! Constant pain in my back! Did a 7 min walk around my block and in pain! Cold then hot! Fatigue! ………..
Deffo ... they don't get that you physical can't do it. ! Annoying same with the diet too. Not thay easy to lose weight when metabolism not working. And pills not right dose. They just think lazy or greedy.. argh!! Rant Rant x
Well ain't that the truth. If you're sleepy and achy, odds are you're not being treated properly. I can see from a previous post that your levo dose was limited to 125 from 125 -15o alternate days...if you felt better on this dose, you need to fight for your right to party on that dose. GPs do not live, walk, sleep, eat or ache in your mocassins. Typically they are clueless about hypo anyway.
Telling people that I'm a spoonie sometimes helps. rcot.co.uk/news/spoon-theory butyoudontlooksick.com/cate... I'm retired now and sleeping waaay too much but I guess my 'job' now is to stay as well as I can.
This is a tough gig and no mistake. Best to you in the ongoing struggle
Spoonie
Thanks for replying. Yeh I'm definitely running low on spoonsx
i see people on the telly that look like how i often feel .... those ones that collapse on to floor at the end of the marathon and can't get up and can't speak to the reporter... or those ones dying from hypothermia and altitude sickness on everest ...lol
sometimes i can't resist pointing out that "THAT is what THIS feels like ....".
I remember trying to describe how Fibro felt once. Imagine how crap you feel when you have flu, everything aches, your head hurts, you feel weak, like a deflated balloon, your legs dont feel strong enough to support you, just getting to the loo requires an heroic effort.
Laying in bed exhausted but unable to sleep, tossing and turning. Weird stabbing pains everywhere. I think it just shows how shallow and superficial people can be that just because you look OK, you must feel OK. Maybe we should all stomp around like Quasimodo lol and stop trying to put on a brave face.
lol ... it's a shame we've just missed halloween... group of lopsided hypo's going trick or treating after work , .. no need for costumes ..... (oh wait ..except loads of us can't actually manage to 'go out after work' anymore can we...it's years since i had the spare juice to do that, and even then i'd have to go home early )
Oh, totally agree! I gave that up this year after two bouts of covid and one of flu - or the other way round, I don't know anymore. Now when someone asked me 'ça va ?' I just say 'non'. And they drop the subject! But I don't let them off that easily. I make it quite plain that I cannot do whatever it is they're asking me to do, and have no intention of trying!!! 
I once told someone my good days feel like that time in the evening where you finally admit you're coming down with a virus.
Oh YES.. I literally feel your pain, I’m in a flare at the moment, I have cold, I have what I think is a mild kidney I/ water infection… my rib under my arm has had pain for months and thanks to my bloody health anxiety I’ve concvinced myself it’s cancer ....But ours is a true silent condition, we can’t point to a page and say “ look this is what we have” “ this is a diagnosed illness” we have to try and explain that it’s still being studied”.
And we have Hypo as well… ( although my Hypo came first about 50 odd years ago )
Hope you feel better soon. 🥰
Thanks for replying. Yep people really do not have a clue
Occasionally there are posts suggesting letters you can write to your family / friends / work.
Try this one
healthunlocked.com/thyroidu...
to see others use the 'Search HealthUnlocked' box. I put in 'Letter to friends' and selected Thyroid Uk and 7 posts came up.
Thanks for replying. Yes that letter is a good way to get them to understand.
A good one to say is, "One day if you're lucky you may reach the ripe old age of 100 and then you will be able understand what this feels like." I've never actually said it to anyone yet🤣🤣🤣 but have tried it out on my husband for reaction. He took it in his stride😍
Yeh when I first started on the underactive thyroid journey. That's how I described myself . As feeling 90yr now on tablets that are likely low dose I'd say 75 ish. I'm 41 x
totally agree. I was same to be honest through total ignorance. I now say I have a metabolic disease which slows heart rate which makes me very tired and with lots of other nasty side effects, including losing hearing and blurred vision etc. Then tell them its autoimmune and it has killed off my thyroid. They seem to listen that way .
Thanks for replyingx
I sympathise as I had problems with low energy and tiredness before I started on levothyroxine and then again after about ten years on it alone which led to me taking NDT and now T4 and T3 in combination. Are you on T4 alone ( which I assume from your post) and what are your levels? How about your vitamin levels? Have you investigated poor T4 to T3 conversion due to a DI02 genetic mutation (which I have)? If you have symptoms whilst on T4 alone you might not be converting properly. The standard TSH and T4 tests may not reveal that problem. You may just need to change your medicine to feel better.
As someone else has said, this is true of many “invisible” health conditions. As someone who also suffers from asthma I’m all too familiar with “but that’s only asthma” being said of a condition that in the UK alone kills around 3 people every day.
This can be said for many if not most illnesses. None of us know what those around us are going through unless it happens to come up in conversations. Chances are people understand only too well but politely refrain from mentioning it. It really depends on how you expect people to react. Personally I would rather people don’t know about my private health conditions, I prefer to look for positive reinforcements and not dwell on worrying things too much. For me the biggest boost is if someone tells me I look well. It makes me feel I am managing my health adequately. Being quite old I know a number of people with situations far worse than mine, ultimately we’re all just trying to make the most of the life we have.
Whilst I agree with the sentiment, it does depend on the health condition. For some of them (serious allergies/allergic asthma for example) other people do sometimes have to know in order to avoid the triggers. What is infuriating is when those get ignored or dismissed as the sufferer just making an unnecessary fuss - and yes, it does happen.
I think most of us with long term medical conditions would prefer to live as normal a life as possible, but that does sometimes mean that those in our immediate circle have to be aware that there are things they have to be careful of/take into consideration. Although I’m new to hypothyroidism I’ve had asthma for all but three of my sixty plus years of life so on the whole I know how to deal with/avoid anything that might cause a problem; as a result most people who don’t know me well are not even aware that I have it. That is not the case for those who develop it suddenly later in life and are faced with constraints/challenges they had never had before.
The same goes for Graves Disease, I'm up and down all the time, never felt the same since diagnosed few years ago.No one understands, it's.,..... you fine now, it's under controll.
But just feel it's ruined my life.
A bit like having Fybromyalgia.. at least we get a definitive diagnosis with Hypothyroidism and it’s accepted as a chronic illness .. Fybro is seen as a made up condition ..
Either way, it's an invisible illness. I wish my surgery had taken into account my FM (it's now only in the background for me) before they gave me a flu injection and Moderna. I shall make sure I get Pfeizer next time - at the pharmacy locally or further away. Moderna is a horrible trigger.
Even as a person with a Thyroid condition I feel like the doubters ! I seriously often agree with them - it isn’t an illness really it’s a ‘state’ or ‘condition’ one in which you don’t always feel as good as other people do but ( maybe I’m wrong ) you don’t get to a wheel chair bound place with it , or get progressively worse , or die of it you just don’t feel great - I sometimes think other none thyroid sufferers feel much the same they just don’t have name for all these various issues -
Someone told me recently "you're not getting any younger - that's why you're tired". I felt like screaming. I've always been an active person - could walk miles, come home and clean the house, weed the garden and then start something else! I don't have a weight problem thankfully - so I get - "but you're not overweight" - how could you have a thyroid problem!! I'm encouraged to read all the above comments - it makes me feel less alone. I came home from work yesterday, walked the dog, made dinner and tidied up after and then went for a sleep for two hours because I was so exhausted. My social life is non existent as I get to bed by 9.30 pm those evenings I don't collapse before that.
If more men got this condition, it would be treatable. Even the female GP's I go to treat me like the male ones do. It's a man's world!!
Reading all these comments I really feel so sad that after 25 years of ill health with thyroid and Lupus and adrenal insufficiency nothing seems to have changed when I fought for 15 years to get on thyroid meds - had to go to Europe to get help. Lots of damage done to my body now but what I can say is that if the body has the uptake of thyroid meds on the metabolism then support for the adrenals are needed and that's steroids or even DHEA which is now being suggested for Lupus patients . If you are on thyroid meds and still exhausted that is not right it is supposed to get you back to a normal energy level if it isn't then its only my opinion but as Dr. Peatfield would say you need a small trace of steroid to help with the uptake.
One of my good friends was a GP and her husband always praised how good she was and would always help out with advice if we ever needed it. I never did take advantage of that but always helped out when they had life difficulties, dropping everything on more than one occasion to do so.
I have to say in her personal life she just used to shrug her shoulders at most problems as if to say, "Oh, well what can you do?" 'C'est la vie' type thing. I sort of admired her relaxed attitude.
Well, we moved and didn't keep in touch so well, things drift, but when I got so ill with no help, I gave her a bell, and a brief outline of my worries saying I wouldn't mind picking her brains a little and so we arranged to meet for lunch. (That was when I could still do things like that a little!)
So we chat, chat and eventually, I broach the subject and she says coolly "Oh yes, that." So I start to explain the parts I don't understand and she responded thus, "Oh, you know my parents are getting old, also, it's just the way it is."
One sentence -- end of friendship.
Hopefully she never has to deal with what you have had to deal with. I thought when I started to read your post that it was going to contradict what I had just said about female doctors, but no, it just confirms that doctors are doctors - brain washed by the system!
GPs know this song off by heart ...'It's your age, c'est la vie, have some ADs' bliddy hell - it rhymes - no wonder it's so catchy, what what?🤬
😂😂😂
My brother once told me, I would be a good advert for duracell batteries, as I just went on and on. Now he says, 'Oh but, you have got the medication now, you are being lazy, you just need to get on with it'. We haven't spoken for a long time!
Same here. "Don't get old" they say. Well, my conditions are not caused by old age. If I didn't have them, age wouldn't make a difference to what I could do!
I probably have been guilty of that myself, when I was much younger (we are talking much, much younger). I often heard that aunt X was fat and lazy. Or aunt Y was dragging her fat ar....behind around getting nothing done. Or aunt Z was a terrible housewife, who had not even folded the laundry, swept the kitchen floor, bought groceries (let alone cooked a meal), you name it. Yes, thyroid issues run in my family and the poor women were ostracized, ridiculed and talked about behind their backs. Now that I have "inherited" this family legacy, I often feel extremely awful when I think back. I now know how terrible it must have been for those women to not only struggle with their body and a disease with quite a few ugly (and sometimes to the outsider invisible) faces, but also how they were viewed by their family and society as useless. There was a time when I started to walk in their footsteps and a time much later when I started to remember them. Now people started to make jokes about me, fired me from my job and, because I was unable to finish my studies and earn a degree (after 4 years of university, darn it!) I was disowned by my father (which basically meant the family). Doctors took 15 years (!) to figure it out. The doctor who did had the same disease run in his family, which was my luck. But many doctors to this day believe that giving me a pill and managing my TSH will cure me of all woes. And some friends still get upset when I cancel meeting up with them despite knowing about my disease, because I look fine. What could possibly be wrong with me? I was just making this up. Especially as most days (now) I was fit as a fiddle.
This is a burden that so many with an invisible illness have to carry as an additional package to whatever else they are dealing with. There is, as I would call it, a good side to this, at least for me. I have become a lot more cautious about judging people. Sometimes I do it on impulse, but I hope that most of the time I can stop myself and get curious instead. I'm still working on it. There are always two (or more) sides to everything and I find it often worth investigating. It's easy to judge, but more rewarding to find out.
That rings so true.
Firstly, I agree that it has made me look at people in a much less judgemental and empathetic way.
Secondly, I also look back now at passed relatives on my dad's side.
There was his father who could only bear to sit with the family at meal times and disappeared the rest of the time.
Then my aunt who was unable to go out hardly at all, couldn't tolerate noise or visitors. She sounded full of dread when we suggested a visit. We said she was weird. We didn't know any better.
Then on my mum's side, her mother who struggled with energy, hair loss etc but was undiagnosed and got heart problems, her brother and sister who were also 'lazy' and 'fat'.
Then there's me who knows all of this and have done a lot of research and think I know theoretically what needs to be done with my gene variants & hypothyroidism and yet it's not helping me much at all.😂😂😂
So I am now the 'weird' one who can't go out much or socialise much, sometimes am noise and light sensitive - but I still have hope as am in the early stages of T3 replacement.
I wish you all the best
My mother, who, bless her, helps me out an enormous amount, nonetheless is irritated by my chronic illness-- between the immune deficiency and the hypothyroidism, throw in a little long covid, etc.
The comment which gets to me the most is "well, you should be able to do X, Y or Z, because, you're sick all the time." As if being sick all the time makes you less sick.
I'm completely missing the logic in THAT phrase. You are sick all the time, so you should be able to work harder? Am I missing something here? That's like, "Hey, you got Covid. Good. Time for you to start renovating the house." Really? If it weren't so thoughtless, it would actually be funny.
I once tried to explain the tiredness to the GP, and I could see he was not listening, I asked if he had ever had a general anaesthetic, and he said he had. I asked if he could remember the few minutes after coming round when even raising an arm is too tiring. He looked thoughtful and agreed to up my dose.
I asked if he had ever had a general anaesthetic, and he said he had. I asked if he could remember the few minutes after coming round when even raising an arm is too tiring.
Many will put that in their pocket for the next time they have a tussle with their health practitioner. Unfortunately, my own GP, Dr Buffoon, appears to me to be constantly in a state of anaesthesia. Or do I put him to sleep? Chicken and egg, innit tho? pfft
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