Hypothyroidism and time off work

Hello, hope you're all well, I have been reading all the post since I was diagnosed 8 weeks ago with hypothyroidism and have found it all very helpful. I completely understand now why I'm ill but wondered how long did people take off work?

I'm 34 and have TSH Level 113 and T4 is 2.5 so feeling pretty awful! I was put on 100 lev immediatly but My doctor will not extend my sick note after 6 weeks leave and thinks it a good idea to try and work on phased return as I'll start feeling better! i feel I must be going mad as I couldn't possible try and work right now. Would like to know on average how long people take off to get better ? Thanks

26 Replies

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  • I took 8 weeks of after my total thyroidectomy. I then had fibroids removed a year later and have had a number of periods of sickness off since. I am now seeing a functional medicine doctor alongside a rheumatologist, endocrinologist and gastroenterologist to get me well again. I had my TT in 2012.

  • Hello :-) I think YOU tell your doctor how much time you need off to be able to function when you are READY to go back. If your doctor continues to be ignorant of their patients needs I would get a different doctor. My gp laughed and mocked me when my tsh was 45 and I was precariously pregnant because I asked for time off work, having never felt so ill in my life. GPs seem to have no idea if the severity of having hypothyroid symptoms. There is now an official complaint against him. Good luck and do things at your time. You need your meds to be working well and numbers to be in range before going back to putting stress on your body. :-)

  • your doctor is totally unrealistic it takes months to recover especially with a TSH that high you must have been on your knees before you were diagnosed because your thyroid had virtually died your t4 is so low

    What will also have happened is the hypothyroid will have trashed every vitamin and mineral in your body especially Vit B and Vit C

    My husband had scurvy and beri beri despite always eating stoneground wholemeal bread and 6 oranges a day and his TSH was only 2.9 following a thyroidectomy for Graves Disease and he was on his knees and could not climb a flight of stairs

    Its vital that your doctor tests

    Free T3

    Ferritin

    Folate

    B12

    Vit d3

    NOW because all these 4 MUST BE HALFWAY IN THEIR RANGES or your body is totally and utterly unable to convert the Levothyroxine T4 into the t3 that every cell in your body is screaming for and needs to function

    So will need fast and high supplementation BUT DO NO TAKE ANY UNTIL THE TESTS HAVE BEEN DONE

    Given the severity of your hypothyroid and the likelihood that the levo is pooling in your body making you toxic you actually desperately need to be prescribed T3 Liothyronine for some months till your body recovers

    Its likely your GP is unaware of all the above so you may need to show her this

    There is published verifiable research evidence for the above

  • Great advice, thanks. I feel and look like I'm lacking all vitamins in my body as really pale with black circles under My eyes. I will request tests as suggested - thanks

  • I had a TT and was fine until about 18 months ago when I became very ill. I knew I was ill and my Dr wouldn't listen to me. It was suggested that I was depressed. Asked for an appointment with a endocrinologist. I waited 4 months by which time I could not hold a coherrent conversation, remember or concentrate on anything,and my walking ability was diminishing. NHS endo said 3 times not everyone is suited to Levo. but would not offer any other treatment. A fantastic lady on FB recognised my symptoms and advised me to go to a pvte endo, which I did.....pvte endo saw immediately that I was not converting Levo (in fact my Dr said that I the rate I was going I wouldn't be here by the end of the year!) I was put on T3 (Liothryonine) and am now slowly getting my life back. Had to fight to be given it on the NHS but one. To cut a long story short I have been off of work since last November but hope someday to return. But, who will take m on at my age (58) and after being off of work for so long?

  • I was diagnosed when my TSH was 35 and my GP told me to take three days off work. I didn't actually feel particularly unwell at the time - my symptoms were purely neurological at that point - so I took just one day off and went on a family outing to the zoo but felt guilty about it as I didn't feel ill so went back to work the next day.

    But that's only a 35 - I can't begin to imagine what a TSH as high as yours feels like!

    Hope those drugs kick in and you begin to feel better soon.

  • Didn't take any myself although I did have to be flexible, some days even now I get where I'm useless and others I move my hours later in the day to suit. But generally working helps staying at home piles up other issues and isolates you so a very gradual phased return isn't the worst idea in the world for most people.

  • I have been off for the past 2.5 years after my thyroidectomy. I think it's enormously variable what people can and can't do, and how you will respond to treatment.

    A friend of mine who has congenital hypothyroidism and has been fine on levo for 28 years started to feel unwell on it two or three years ago. Shes had 2 or 3 blocks of a month or so off over the past year, and is currently working 4 days a week. Personally I think she should be working a touch less then that, because that is her 'barely coping ' level.

    Phased returns can be a mixed bag, depending on how understanding your boss and your HR department are. I had a terrible time with mine over the course of losing my job, because they didn't have any conception that someone could be too ill to keep the job, or too ill to work full-time in the long term.

  • 113 is a very high TSH, btw. You could easily be barely walking with a level like that. I assume your GP has given you a small dose of 25 or 50mcg of levo as a starting dose? You will need it as adjusted every 6 weeks with a blood test, in small increments like 25mcg. So in fact it will take you several months to get into the realms of a full replacement dose of 150+

    You may not feel better at all until you reach that kind of level. Your GP knows absolutely nothing about thyroids, which is unsurprising. I find they are very stingy with sick notes, you really have to convince them. Things I find that work are, get very firm and tell them clearly that you aren't coping and you're in bed half the day.. Or, wait till its week 7 and go in after the sick note has run out or on the final day, and tell them how I'll you are. I think often the only believe what they've seen with their own eyes, and expect things to blow over.

  • Thanks for coming back, they started me on 100 Levo straight away and said test me me again after 12 weeks, so another 6 weeks to go!

  • Good luck, JC45! It's a good thing they didn't start you on a piddling dose. I hope you're getting some relief from that, but you'll likely need a bit more, or need some adjusting once or twice. It's utter nonsense of your GP saying you'll be better so soon. You may be one of the people who needs 200mcg+, and in that case how many months will it take to adjust up to that!

    It took me about 9 months to get blood tests that came back 'normal', and that was with me doing a bit of extra adjusting on my own because I was impatient!

  • Jc46, if you aren't feeling well enough to work make an appt. to see your GP or another GP and ask for an extension before your current sick note expires.

  • You can test after 4 weeks I thought? Maybe this is just your initial dose.

  • Hi JC2 I was diagnosed in mid August. My TSH was 31.7 and T4 12. I had no symptoms other than hairloss or so I thought. I already had three weeks off with stress before diagnosis due to big patch of hair missing and my mum being ill and other stuff. When diagnosed GP gave me sick note for 6 weeks. He said I should go back and see him if I felt well enough to return to work before this ran out. When I started the levo I was very lethargic and sluggish, this diminished after around 10 days, had some good weeks then symptoms returned as I was only taking starter dose of 50 mcg. Last week went back and had increase to 75 mcg and as my symptoms had returned I told him I needed more time off. He has given me sick note for another six weeks.

    I work in the NHS so the sick leave policy is good with sick pay. I also was sent to an occupational health nurse via my manager who said I should stay off work until I feel properly better.

    My advice to you is to stay off work until you feel you can manage and don't be fooled by short term symptom improvement. I don't know where you work but see if they have an occupational health service that might help. The nurse I saw said that hypothyroidism is seen as a disability in the NHS and they have to make adjustments for this in your work hours, etc. Also need to keep in mind that it can take a long time to feel better.

    Hope this helps.

    Padster7

  • Sorry JC46, see I still have brain fog!!

  • Hi everyone. Thanks for taking the time to reply back to me. I will take the advice and go back to the doctors to say I'm not well enough and request other tests as suggested. I'm talking to my work OT on Monday so hopefully they understand how tired and awful I'm feeling. I guess I just need to listen to my body as I think my levels were so bad as I tried ignoring feeling ill and carried on!

  • It really is variable ,luckily I was retired when diagnosed with TSH 102 but sat on Tribunals and was struggling to stay awake. Within a week or so my mega snoring ceased,after a couple of months I was no longer dropping off mid pm , I think I could have worked a normal day after about 3 months but after 15months I still have some symptoms : cold feet,balance mainly. So you will find some symptoms may go fast and others linger.Lets hope the lingerers are not those that would interfere with work.

  • I'd really like a doctor to take one day in our shoes, a day or maybe a week with hypo - hashi symptoms. It's not that we cannot function, it's incredibly hard to do so.

    Yesterday I just could not keep my eyes open. Even a bike ride to Tescos to buy a few items I'd run out of was a huge effort. I crashed into bed at 9 and slept until 0700, struggling to rise until 9.

    I've been ill since June and being self employed I'm getting worried by not having earned anything since July. I battled on, but the anxiety and changing health landscape proved to be too difficult to function in a working environment.

    Insist that you aren't fit to do and suggest that you will contact PALS if he continues to be a clot!

  • I took off only a week or two when I had my big crash. I finally retired (a bit early) after being hassled by the management for not working up to "accepted standards". Hate to be blunt about it, but ... don't expect sympathy or accommodation from U.S. corporations.

  • I was diagnosed at age 28 when I had a 1 year old, was attending grad school full time and working 20 hours a week. I took no time off. But everyone is different.

  • So sorry to hear that. Doctors do not seem to have any sympathy or care really when it comes to things like this. If they give you medicine they expect that to work straight away and for you to feel better all the time. Feeling sick? What? As if we are so well to begin with. I have been on medication for years now as I have no thryoid, and still I find it difficult to move around. I don't work thankfully, but I am still finding it hard - the simple task of walking upstairs takes my ages as I have to crawl upstairs. It is so hard. I wish you all the best.

  • Hiya.

    When I was first diagnosed in March 2000 I was very ill and was off work for a total of 25 weeks. I did try to go back to work before that but the morning I did I was finding it hard to breath and walk let alone talk and I nearly passed out!!

    Luckily the head teacher (I taught in a school) was great and was happy to work with me and the doctor. I went (dragged myself) in to work to chat with him and told him everything. I think he could see how bad I was and was very understanding.

    The doctor was also brilliant and was happy to sign me off for longer.

    I then had regular doctor checks with blood tests and slowly built my hours up at work after a little more time off work when I started to feel more myself.

    Maybe talking to another doctor would be a good idea? Also keeping work up to date can be good for both concerned and it stops you from worrying and you can just concentrate on feeling better.

    Sammi :)

  • The thyroid is the body's carburettor. It chemically interacts with the whole body and causes so many health issues when out of sync. If you are not ready to go back to work then you are not ready - simple as that. Your doctor needs to be looking after you not pushing you when you are not well. Advocate for yourself. As you get better still be gentle with yourself. It takes quite a while to balance your needs as an individual. All the best.

  • Hi, I had 8 weeks off then returned on a phased return. Of course it will be different for everybody, but going back to work, gently, was a good move for me as I started to feel 'human' again! Hope it goes well x

  • I've had 12 weeks of "sick notes" & am not yet ready to return to work as they are still trying to sort out the optimal Levo dose for me (at my instance as I still feel rubbish). I constantly fight with my Dr & have even gone as far as to tell her to treat the patient & not the blood test....... not to mention I have outright refused some of her "treatment" suggestions.....

    Take as much time as you need - if you rush things it isn't always beneficial for you. Dr's seem to try & rush things due to "targets" & they think that having someone off work for a lengthy period doesn't refelect well on them.......

    I couldn't care less - until I'm ready I won't budge & am the proverbial squeaky wheel constantly hassling them until I get what I want.........

  • I didn't take any time off work and I don't have any sympathy for those who take time off work just for having a thyroid problem. My mum had hers out and she was back to work 2 weeks later but that was after major surgery. My sister works full time and she hasn't had any time off with it, I haven't had any time off either and my daughter was born without a thyroid and she has been to university and she sometimes felt tired but she went anyway.

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