Good evening all,
Just wanted to know what do people with graves/ or under active thyroid do for a living and how do they feel/cope at work with thyroid problems??
As a bus driver myself I find I have bad and good days the more stressed I get the worse my symptoms are, I have Graves.
I was a hospital administrator and I worked in several large hospitals. I then took a break to have children and went back part time as a medical records clerk. Finally I re-trained as a legal assistant but I am now retired because of untreated thyroid disease.
i am a supply chain manager last working for Rolls-Royce. I had to leave my dream job last Nov as I have been misdiagnosed by local Endocrinologist. I ended up house bound until I went private and eventually diagnosed as a poor converter T4 to T3. Given T3 privately and it has been miraculous. Also had DIO2 gene test recently which is positive from one parent. This confirms I do not convert very well. 11 years on Levothyroxine struggling and should have had T3 also all those years. Now I’m unemployed and as I have savings cannot get any financial help.
I don’t want to hijack the thread but if you could pm me on how your poor conversion was diagnosed and who you saw, I’d be very, very grateful. Feeling so unwell atm. ( well, nearly all the time really) Thanks. And good to hear the right treatment has helped you.
06hollyberry, The best thing to do is to make your own brand new thread on the forum. Include any blood tests you have for thyroid or other relevant things such as vitamins.
To see poor conversion in blood tests you need a full thyroid panel, TSH, freeT4 and freeT3. It's very possible that you won't ever have had full blood tests on the NHS. You can seek advice about this in your own thread if you want, or go onto the ThyroidUK website and find out how to order your own finger prick mailorder tests.
In the meantime stay on the forum and read other people's threads. Many people are in a similar boat to you, and you'll learn a lot by reading the advice they get.
Hi Lauren
I work in Theatres in the NHS.. I was struggling, trying to sort out right dosage of levothyroxine. I work shifts, I struggle with nights.
I am retiring soon, and returning to work 2 days.
I am not reached the retirement age, has the government have increased it to 67.I cannot work till that age with my underactive thyroid.
Hi everyone,
I asked this question because I’m
Struggling myself with my thyroid. I’m full time bus driver. I’m off sick at the moment and at risk of losing my job..
I’m only 33 so I’m really confused about my career now as I’m worried I won’t be able to work and I do need money to survive as we all do.
Also, make sure you test your FREE T4 AND FREE T3. Depending on the lab, assay, etc, basically you want to be in the mid-high range for FT3 and lower-end for FT4. Knowing if yo are converting the T4 into T3 is vital to your life and daily routine. Adding T3 hormone, especially NDT, has made a world of difference for the better for many of us!
No, the FT3 will always be slightly lower in range than the FT4, even if you convert very well. But, both should be over mid-range.
Not necessaryily true. Many people have good low-end of range FT4 and mid-high end of range FT3, without going over /under the range. At least in the States, if a person has mid/high FT4 and FT3 it will cause them to feel ill. The assays and measurements could be different between countries and labs.
If they're taking T3 or NDT, then yes, it will be as you say. But on levo only the FT4 is always be at least slightly higher in range than the FT3.
Wow, I feel for you, I’m also 33 although I’m a plumber and my job is very labored.. idk how I been able to keep my job so far feeling the way I feel I gues it’s pured will power because everything else is lost to me.. been feeling awful ever since I was diagnosed with hashis.. about 4 years ago.
I am self employed working now around 13hrs a week over 4 days which is about my limit . I love what I do but at times when I want to go off sick it’s an impossibility as no work means no pay... ( I don’t think I could sustain a full time job or pressure of working for someone). I choose my hours which are between 10 am to 2pm when my energy is at my highest point
I am an Executive Assistant that deals with tenders.
It's a singular portfolio so I enjoy the freedom of being on my own at work most days.
It is still hard on days when this condition "misbehaves" or something new develops or anxiety suddenly occurs, but it is by far easier than dealing directly with people all the time.
I was a teacher. Like a lot of people I’ve fallen into the “pension trough” Couldn’t work, I don’t have the energy and no one would empty a 60 plus unwell teacher anyway. I specialised in kids displaying difficult behaviour so could be a physically demanding job ( you have to be quick to avoid flying furniture etc)
I feel as if I’ve gone from someone who had a good professional reputation as a problem solver to nothing.
Hi Lauren
I was diagnosed with Graves at 56 and put on Carbimazole and continued working for about 9 months. I then relocated, and ultimately my working life as I knew it, was over.
I " pulled " a small private pension that I had to tick me over to 60 when my pension kicked in and I have never returned to " proper work ".
After 15 months on the ATD I was given RAI which I deeply regret.
I became very ill some 6 years ago with the long term consequences of RAI but have received no help or understanding from the NHS. More recently I was refused a trial of T3 at the beginning of last year, and with the help of this amazing site, amongst others, I decided to trial both T3 and NDT for myself, and both these hormone replacements worked for me and gave me back my brain and cognitive functions.
It's only in this last year that I've managed to stick myself back together again by self medicating and buying my own thyroid hormone replacement.
The Elaine Moore website is all things Graves for all Graves patients, their families, friends and carers. It is run by a lady who has the disease and found no help going through RAI in the late 1990's so wrote a book to help others. It now is a leading research and well respected website on auto immune disease and has open forums like this site. It is stateside so medical protocol is slightly different but it is definitely worth looking into.
I understand that you are currently on ATDs and, yes, considering your current profession I think you may need to reconsider your future options.
P.S.
I have just had a quick look back and read you are waiting for a thyroidectomy. I would suggest you stay off work, and try and build up your strength, making sure your ferritin, folate, B12 and vitamin D are all optimal and not just " anywhere " in the range. You have been through a lot, and you need to try and rest, relax and recover your core strength to enable yourself to go through this next operation with relative ease.
Take good care
Thank you for the advice, my partner thinks I’m ok to work? Just because I look ok doesn’t mean I’m ok inside 😔 I’m so confused what to do and stuck really as I need a job to live
I know, I've been there, and also heard comments that were so far from the reality.
Looks are deceiving, and only you know how well or unwell you are.
You are going through a very difficult time, so it's best not to make any big decisions, and would suggest you stay as " sick " which you are, just play for time, and try and look after yourself.
I know it's easier said than done, as anxiety and stress will exacerbate your symptoms, and it's a bit like being in a self fulfilling situation. Maybe an increase in the ATDs to further block the thyroid hormone production would give you some " "breathing space" from the current symptoms you are experiencing.
Have you talked to your employer? Maybe they would consider reduced working hours for a bit ?
I’d taken early retirement by the time I was hit with Graves’ , but had taken on some voluntary commitments and started an MA, all of which added up to at least 37 hours per week. I managed to keep going with most things, and had very few days off. However, it was pretty difficult for the best part of the first year. I think what kept me going was the thought that if I gave in, that would set the pattern of my life in retirement. Some days, I would go to work or to the library, and when I arrived home would sit down on the bed and just fall asleep.
It’s taken longer (perhaps two years from starting treatment) to be able to get back to some of the physical activities I enjoyed.
It’s a balance. You do need to make sure you get enough rest. On the other hand, I felt I needed to battle through to ensure Graves’ didn’t take over my life.
I was a fitness instructor and part-time gym worker about a year after thyroidectomy my body pains increased so bad I quit and stay home and try to just function.
Hi Lauren85, prior to thyroid cancer, I had unknown/undiagnosed issues with my thyroid. After the cancerous nodule was found (due to me pursuing testing), I underwent a thyroidectomy. In addition to the cancerous nodule, the pathology report indicated that my thyroid was also cystic and goitered. That explains a lot of symptoms.
For 3 years I suffered while using synthetic T4 replacement hormone. Then I learned from others that my body was not converting the T4 into usable/active T3. Since switching to a NDT/DTE (desiccated T4/T3 hormone), I have felt much better.
However, I still have to gauge the amount of energy I store and use (just like the hormones in my body). I work as a substitute paraprofessional in neighboring schools. I can choose which days I want to work but the pay is horrible. The job is very rewarding for me as I work with the children that are LD, autistic, etc.
I also work as a personal care assistant part time, half days, 4 hours, 4 days per week. It is good to be able to know I can call out if I have other plans, not have to be there 8 hours per day/5 days per week.
The pay there is not that great and I do not have insurance through these jobs but at least I know I can rest if needed. I just have to get through this rough time.
I am 58 y/o. At age 59 1/2, I will be able to collect from my investments. At age 62 I will be able to collect 1/2 my STBX husband’s (middle of a divorce) social security money.
Anyone from the uk know if you can get benefits for having Graves’ disease? Like an allowance each week or every 2 weeks ?
I've a distant memory of reading something, somewhere, that mentioned that in the United States, in some states, Graves Disease was acknowledged as a disability claim.
I don't think there is anything in the system here for Graves Disease, or in fact any thyroid disease that one might suffer from.
Lauren85, there is PIP, ESA, and council tax/housing benefit. Although these are all being rolled into Universal credit based on where you are in the country. The council can also give direct payments for a carer.
ESA (employment support allowance)is the equivalent of Job seekers allowance for those who can't work, intended to pay for day to day expenses like groceries, bills, transport.
PIP (personal independence payment) is an extra benefit for disabled people, intended to pay for the extras we need through being disabled, it's not mean tested so people who work can get it, although it's hard to imagine someone who could both qualify and work.
Housing and council tax benefit are purely means tested and in my experience much easier to get.
I got my carer through first getting a social worker and a lengthy assessment, she had to fight for me in the committee that decides. I'm not so sure exactly how it's done in general.
Both ESA and PIP are based on what you're able to do, not on the specific illness you have. Neither of them are very good at assessing fatigue or being able to do things one time but not every day. It's a huge help having a doctor that will write you a letter of support.
The starting point is long forms consisting of a lot of statements about things like how far you can walk, how long you can sit, whether you can cook a meal, hold your bowels, pick up both heavy and small fiddly objects, etc. You score points on the forms a bit like an exam, so eg you might get 2 points if you can't dress yourself, and then they add up if you score enough points.
You have to be very impaired to get them. Unfortunately they are largely far far below the line of not being able to work. For example if you can walk or push your wheelchair for more than about 300metres (going from memory) you won't score any points for that, but you would struggle to find a job that requires so little walking.
Just to add a wee bit. Im on ESA and i was on PIP until it was disallowed. Ive had a Mandatory Reconsideration and will appeal the decision with the help of my local Welfare Right Group. Every year they reassess you and in my experience, every year they take it away then every year i win my appeal! 🤗 Easier to get it than to keep it 😐
Goddessart, oh god, that sounds awful 
I've only had one appeal but it went on 18 months and I lost in the end. The whole thing is a complex story, but I really blame a carer I took to the initial assessment. She didn't understand the gravity of the situation and chatted casually with the assessor. It ended up coming out that I'd attended a pottery class, and that counted against me so much
It's just such a minefield where everything you do can be held against you!
Can you get pip with hypothyroidism if you are working? I'm full time TA, but i'm really struggling. My moods, pains, it's horrible. I'm dragging myself out of bed to go to work, always feel tired. Anyone claims pip and works here?
It is possible to get PIP and work at the same time. If doesn't matter what your illness is, it's about what you can do.
However, my experience with PIP has been that it would be very hard to get it while working with hypothyroid, because fatigue is not captured very well in the assessment.
There are two strands to PIP, mobility which includes walking and finding your way, and self care which includes feeding yourself, using the toilet, getting dressed, getting washed etc, etc.
It's hard to imagine a person who has enough fatigue to need help with something like going to the toilet but could still work. But all you can do is get hold of the forms yourself and see if there is anything that applies to you. The website Benefits and Work is a great help and has a lot of detail on how to fill in the forms.
I struggle to work. I have Hashimoto’s. I also get migraines if I get stressed or any of my levels change. Just keeping on top of everything is a job on its own. Like you, people think you are fine because you look fine. Although I regularly look dreadful as having a bad head gives me dark black circles around my eyes.
I am a book keeper and a ballroom dance teacher. I can’t work for a company doing the books any more as it’s all on PC and if I have a bad head I can’t look at the screen. The dancing has significantly reduced in the last 3 years due to the underactve thyroid and no energy. In fact I’m stopping my evening class due to the fact I haven’t got the energy to introduce new people or start up a beginners class.
I work very part time to do my husbands’ books etc.
I’m hopeful that one day I’ll get back to doing the dancing again.
In the meantime I do a few hours a week at a care home, seated dancing.
If my husband ever can’t work, then I’ll have to see if I can do more paid work. But I’ll cross that bridge if/when I get to it........
It’s weird how we can feel fairly ok one day and completely washed out/drained the next.
I hope you get sorted and find a job and a balance for you very soon. 🤗
I've done a few different jobs, but for over 12 years was a home support worker for the Alzheimer's Society. I loved the work but was gradually finding it harder to give of my best. Then the local council, which helped pay our wages, withdrew funding.
Some staff left and, unless families paid privately, the remainder had to work in the local city area instead, and take on more hours if needed.
The increased hours , travelling, finding my way to addresses in an unfamiliar parts of the city and often driving in rush hour finished me eventually. Sometimes I used to take someone out for a drive, and it became so difficult to concentrate that it would have been irresponsible and dangerous to continue. So I retired, but did continue with a few small private jobs, until they too got harder and harder to cope with.
It was a couple of years afterwards when I was finally diagnosed with autoimmune hypothyroidism, and quite a while after that before finally getting treatment with Levothyroxine. Still battling to get as back to normal as possible and be able to enjoy retirement again.
Lauren85, I had a thyroidectomy due to cancer 6.5 years ago. Before that I was healthy and fit, but since the op I've been very impaired, a lot of the time not able to do basic self care.
I've been self medicating the past 3.5 years, and getting improvement even though I'm still in bed a lot of the week. I also got sick in my early 30s, there are particular difficulties of being unable to work from a younger age.
I used be an academic before I was sick, which is a competitive, cut throat world as well as being quite insecure. It's hard to imagine being able to return to something so stressful and mentally demanding even if I get a lot better. I think a lot about whether I have the skills to do a more gentle kind of work, and how many hours I need to be capable of before I could even try. A few times in the past couple of years I've hoped I'd be well enough to try some voluntary work, and have tried going to weekly clubs to try and build up /demonstrate my stamina, but I've always been knocked back by a return of symptoms or some big health event like an infection or injury.
Until a botched operation to remove a kidney growth, I was an IT teacher and then a project manager with teams all over Europe. I did not have a thyroid problem until the op, mainly because they overdosed me with iodine during a scan (which magically disapeared from my notes!).
I have always run my own farm. but had to cut back on the animals due to falling asleep while milking! Now I just potter with a few pigs, hens and a flock of sheep. The thought processes of sheep I have found better than the Endo!
Hi I’m a scaffolder with hashi. My illness sort of crept up on me at a time I was really busy and moved house which needed lots of work. Spent 6 months in and out of gp’s getting told there was nothing wrong with me. Google brought me to this forum and after a lot of reading I went back to gp fully armed, he had to look up Hashimoto on google and then told me I didn’t have it, lol. Really nose dived around this point and had 3 months off work, got some t3 from abroad and started to feel better. 6 years on I feel pretty good most of the time, still have bad days just need to suck it up, rest when you need to, eat clean , and don’t ignore your gut health.
I was self employed before getting sick (as a fine art nature and portrait photographer I owned/operated a photography studio out of my home where, in addition to shooting portraits, I did fine art printing for other artists and photographers and also showed my own art at local shows). It all became too much when I was diagnosed in 2014 with HypoT, Lupus and Sjogrens. I’m fortunate that my family is financially sound enough that I do not have to work. I find managing my conditions as well as my household to be quite draining.
I was a nursery teacher and a nanny (more money and less paperwork and stress!) before kids. I gave up when my first was due 18yrs ago. I tried to do a cashier job in the evenings at Tesco’s. Really loved people but too tired and not yet diagnosed. So only lasted a year. I have also run a horsey yard for a year but again got myself in a state with tiredness and become really run down and ill. So mostly I’ve been a stay at home mum to 4 kids, all born within 6yrs so very demanding and at times I’d just fall asleep.
I’ve only been properly treated since April this year, I know it’s early days but finally I am my best self 🤗 So I got a job! Starts next week! I’m going to be a Waitrose delivery driver! 😂 So bizarre! I had to do a couple of competency tests in this big long based van because they didn’t have any actually vans yet. I’d never driven one before but aced it 🙌 I can’t wait! Now that I’m well I’m soooo bored!! But kids are still only 12,14,16,18 so work can’t be too stressful otherwise it won’t work with raising kids. I’m also lucky that hubby is an IT contractor so I don’t need to work for financial reasons but a few extra pennies will be lovely 😊
Good Luck to you Paula, well done.
I was a technical/ training manager with a small team of field engineers and office based technical staff. I got made redundant which was probably due to my health problems as I had to reduce my hours to 30 per week and some days had to have a cat nap which they allowed 20 mins per day if I needed it. I haven’t worked since as it was too much as I was so tired all the time.
What medication are you on? What are your symptoms?
I'm in IT and struggling. I've dropped down to 4 days a week but it's still too much....
It's really tough trying to work while you have a thyroid problem
Lauren I was a self employed newsagent when I was diagnosed as myxoedema coma. I was standing in my shop fast asleep behind the counter one morning!
I had to give that up and after almost a year on sick pay and unemployment I retrained as,a bus driver. Absolutely loved the job but eventually trying to cope with the stress of the job and my deteriorating condition I had to give it up. I got a job with DWP sorting benefits. I was on higher and higher doses of levo and getting more ill all the time. I did apply for and get DLA higher mobility and lower care. I do also have arthritis and a spinal condition which seemed to get worse along with the thyroid. I was given early retirement from DWP age 55 after spending almost a year bedbound. I discovered, some years later, that I do not convert t4 to usable t3 . My endo put me on t3 and now I only take t3 at 60mcg per day and feel better than I have for about 40 years. More energy to do my hobbies etc. I still can't walk very far because of my other conditions but to actually feel normal after so long is wonderful. It was difficult having only sick.pay to live on before I got the DLA but I did cope. Good luck with your journey.
I worked in hydraulics on superyachts. Great job, lot of travel and then my mother’s dementia kicked in and the stress of sorting her and my thyroid became too much and I had to retire. Some days I just wanted to lay down on the nearest rug and sleep. Not tablets are sorted, much better. Now for the AF.
Di
Secondary school teacher. Given a lot of the more difficult kids because of my skill set, training and track record. Stress and energy levels eventually took their toll and had to retire age 54. Early pension release meant I lost a lot of what I had built up. If the illness was recognised it would have been 'made up' to age 60.
My hubby Bob was diagnosed hypothyroid October 2013 after having been incorrectly medicated for arthritis he didn't have. He was signed off work as a lorry loader in a cold warehouse 50 hours per week. He had been unwell since mid-2012 due to sinus issues, he gets polyps which have repeatedly needed operations. Early 2013 he had carpal tunnel problems. May 2013 Bob had an operation to remove an abscess from his sinus area.
Bob returned to work in January 2014 and he didn't want to give up work. He suffered swollen legs, muscle pains, fatigue whilst medicated with Levothyroxine sodium at various doses. April 2014 Bob was signed off work at the age of 56 years and has never returned to full-time work. He got PIP and ESA for about a year. August 2013 we got him prescribed T3 and he started to improve. Ultimately his better health meant PIP rightly stopped but I think ESA was only allowable for 12 months. I continued to work full-time and we had a mortgage then. I am 6 years younger than Bob. When Bob felt better he did spend his time chopping firewood on our smallholding but he did this to suit how he felt.
March 2016 GP stopped Bob's T3 prescription and referred him back to the endocrinologist who refused to put him back on T3. Bob's health rapidly deteriorated within a month of being just on T4 so he chose to buy his own T3 and self-medicate and he regained his health. November 2016 we moved from Scotland to England to be nearer my dad who was unwell. At that stage we became Supported Lodgings Carers having lodgers aged 16+ years coming out of the care system and providing them with support. We are registered with our Local Authority. We have 2 lodgers and this brings in an income of £20,000 per annum and is not taxed as it counts as Qualifying Carers for HMRC. I do most of the work supporting our lodgers but it isn't burdensome. It is very rewarding and if anyone is looking for an alternative career due to their thyroid issues it's worth looking into. I also choose to do some part-time work on a casual basis but we could get by without this. Bob feels well enough to play golf about 4 times a week but I think this is because it's something he loves and he can choose whether to play or not. The exercise has done him good, we just had to increase his T3 and T4 (he now takes both) until we found a level he stayed well at. I hope our story can provide hope to others.
i worked as a legal caseworker with refugees then went into working with victims of crime. I had severe symptoms for a couple of years ( brain fog fatigue and ibs type stuff) which meant i had to leave my job for less stressful work. i went back once i had got on top of my autoimmune issues because i needed to pay for the medication and private testing! ( i’m in england but the nhs rarely tests what i need & doesnt often prescribe t3, so i pay for most of it myself)
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