My daughter was diagnosed with Graves disease in 2020. After two years of treatment on Carbimazole it rectified itself and she came off the medication in June 2022. In the last two weeks she has developed symptoms again and following a blood test has been ee-prescribed her medication. She works in a hotel doing breakfast shift from 6am and until now her boss have been happy with her. This morning they called her into a meeting and said they had noticed she was tired all the time and anxious and throwing up (all symptoms) and she could either accept a cleaner role or leave the job entirely. she explained to them she is recently back on medication (10 day's back on) but they didn't not listen (she's only 18) uk law says they have to give reasonable time for treatment to work...has she got any hope of keeping her job?
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Can you both seek help from citizens advice? I think the law has factors taken into account such as on how long she’s been with company, if they can argue her illness or time off is a business disruption.
If she is unwell it might be best if she has some time off to recover, I think I’d take an easier role and look for a more reasonable employer.
Hopefully the Carbimazole will stabilise her levels soon, but from what others have said it can taken some weeks beyond that to recover and feel well.
There’s a lot of research saying long term low dose carbimazole gives better out comes for controlling Graves. Doctors are keen to limit the length of time we stay on carbimazole and sometimes reduce & stop it before we’re really ready.
Doctors may recommend a permanent treatment options after this relapse which will prevent hyper occuring. Have either surgery or Radioactive iodine been discussed?
Thank you so much for your reply. She's been there about 6months. They are regularly giving her overtime and praising her. Her symptoms returned two weeks ago and she's currently on a week's holiday in which shes restarted this treatment.She already says she feels miles better on her tablets again so her bosses haven't even seen her since she's been on the medication.
Hospital appointment next Wednesday to discuss other treatments.
Citizens advice is a good shout -we are just waiting for her boss to send over the points in writing so we can see exactly what we're looking at
I am an older person and decided to stay on low dose carbimazole. I have a hyper nodule so there no remission / relapse prospect.
I delayed Radioactive iodine (hopefully forever)
Your daughter being young might feel getting control is a better option.
Doctors may ask how far off she is considering trying for children as conceiving within a year of RAI is not recommended. They may assume she too young to start a family yet and use that as a case to treat now rather than wait.
Surgery is also an option.
Both options had high likelihood of becoming hypothyroid. Doctor view this as safer easier option (& more efficient) but do lots of research and make sure which ever treatment path chosen it right for her. Getting a good grasp of what’s being tested and what results mean will be a good step at taking control of her treatment.
I would suggest your daughter goes ' off sick ' until the Anti Thyroid medication that she has resumed kicks in and she feels more able to resume work.
In my experience the larger the company the more aware they should be of the legalities of the situation but she needs to stay away and doesn't need any more stress and anxiety driving her Graves.
Graves is an auto immune disease and something has triggered her immune system to attack her body and when Graves attacks the eyes and thyroid the symptoms are such that you need medical intervention and generally a window of around 15-18 months treatment with an AT drug is allocated.
The AT drug stops the thyroid levels rising any higher and slowly the T3 and T4 come back down into range and hopefully the symptoms are relieved.
All the AT drug is buy the patient time in the hope that the immune system calms down within this time frame and the body resets itself.
Did you daughter have her Graves antibodies checked before coming off the AT drug ?
Was she well on the Cabimazole / PTU ?
Does she have any recent thyroid results showing a TSH, T3 and T4 reading after coming off the AT drug in June and prior to restarting the AT drug ?
When metabolism is running too fast, as with hyperthyroidism, or too slow as with hypothyroidism, core strength vitamins and minerals tend to nose dive through the ranges, and irrespective of how well and clean one eats - if these are low in the ranges this will compound her ill health even further.
I would suggest if these haven't been run recently - they need to be actioned as optimal levels of ferritin, folate, B12 and vitamin D are needed to help support the body during this first phase of Graves Disease.
The most recent research is suggesting that the longer the patient stays on the AT medication the better the outcome for the patient :-
thanks for the advice.Yes she went from 30mg at the beginning of treatment with 6 weekly blood tests by may she was on 5mg every other day because her levels were too low and she was slipping into an underactive thyroid. So seemed the best plan at the time. Her consultant said her seems to have come back with a vegnence although her symptoms are not as severe as her initial ones.
She's never taken a day off work because of her symptoms so it all feels like it's come out of nowhere really.
Do you have her original diagnosis of a TSH. T3 and T4 from 2 year ago and details of which thyroid antibodies were found overrange and positive then, at diagnosis ?
These are usually expressed as either a TRab: TSI : TPO or a TgAB ?
Graves has stimulating and blocking antibodies and your daughter has probably been experiencing a mixture of symptoms and there is also a period of time when these two extremes of symptoms vie for control of the thyroid and burn each other out with the patient feeling relatively ' normal ' for them, but it doesn't mean the disease has run its course.
What were her discharge readings in June - TSH. T3 and T4 ?
It reads as though the AT drug suits her, and suggests she stays on the AT drug :
I have Graves and am post RAI thyroid ablation in 2005 ad now manage lingering Graves, thyroid eye disease - caused by the RAI and primary hypothyroidism - I would not suggest anyone have RAI thyroid ablation, and believe it shouldn't even be offered in the health care system as a treatment for an auto immune disease.
While being treated for Graves and taking the AT drug it's quite normal to go from hyper to hypo and this is when the AT drug needs titrating down.
At the same time the Graves antibodies can be either blocking, driving or in neutral and will also be playing their part in this puzzle, and if the antibodies are still raging there is little point coming off the AT medication and why the antibodies should be run again.
Generally the antibodies aren't run again, and patient is made to feel like a failure as the treatment is said to have not worked and pressure builds to consider irreversible, invasive options which may not be in the best interests of the patient.
You are legally entitled to copies of all your medical records - from both the hospital and doctors records and presume your daughter of an age to legally access these herself.
Suggest you get printed copies of all results especially when first diagnosed pre the AT drugs and the printed medical evidence and proof of Graves Disease and the antibody found to be over range and positive.
For Graves we re looking at either a TR ab - reading something like a thyroid receptor blocking antibody or a TSI - reading something like a thyroid stimulating antibody or a TBII - reading something like a thyroid binding inhibitory immunoglobulins.
It sounds as though this job is in the hospitality sector so likely prone to seasonal adjustments and high employment turnover, or, and, it's a horrible place to work anyway - and this in no way should be seen as a reflection on your daughter's ability.
I worked with my Graves - sadly very few if any, employers have any idea about it, let alone family and friends - it's a poorly understood and badly managed and treated AI disease and everyone's journey with Graves is unique to them.
I wonder what triggered your daughter's Graves as this can happen ' out of the blue ' ?
There can be a genetic predisposition with someone maybe a generation away having a thyroid health issue. The immune system can be triggered by an unexpected incident, like a car accident or the unexpected death of a loved one, and women and AI thyroid conditions tend to be more prone around puberty, giving birth and menopause.
im not really sure what triggered it. The doctors initially weren't very helpful because they put it down to hormones and being a teenager. Then they lost her initial bloods twice. Then lockdown hit and she really got severe. Her college even assumed she had an eating disorder she lost so much weight. Then they finally diagnosed her
There are laws on this sort of thing but it depends on interpretation really. What makes them think she’d cope better during this phase being a cleaner instead of being on reception??
shes been there since April and she disclosed her illness on her form. She's been open along the way about coming off her medication in June and has said her symptoms had come back but she's sorted it all in less than a month. They have a very high turn over of staff so I feel maybe she's just the next target but for her sake I don't want them to use her health as an excuse in a bigger problem.
Yes she has poor girl. Many local solicitors deal in Employment Law. Some do a free half hour.
This could be good for her. She must take a note of the dates, times, etc and who and what has been said to her regarding her job. Has she had anything in writing? How long has she been working there, this is important.
There are strict laws regarding employment so employers should be aware.
shes asked twice for the minutes of her meeting and all her boss is saying...it's mainly just your health but any questions I'm happy to answer. The confusing thing is he's now rota'd her on for her usual shifts next week. She's been upfront and said she is well enough to work and she's taken no time off sick at all. Currently looking through her contract and reactivating an indeed account lol
That sound promising. Your daughter needs to put her request in writing for the minutes and take a copy. Did you manage to get a free half hour with an employment solicitor?
I was a manager of a department store before I retired and knew employment law inside out.
Things change but the important thing is to put any request in writing.
Your daughter has been employed for less than one year so I don't know about current laws.
Thanks everyone...after all that fussing her boss has now retracted everything and has told her she is doing a good job. All very confusing. She's going to stay but is now much aware of their tricks so she's ready for them!
She had her hospital appointment this week and they've suggested either Carbimazole for 3 years or a thyroidectomy .
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Cant get job support allowance cant do job seekers what on earth can i do?
Help with thyroid blood tests
hypothyroidism = my job is on the line!!
How many of you have jobs or are disabled because of thyroid issues?
A new job with poor concentration 
