Is it normal to feel this awful?

Hi everyone

I went to my GP a few weeks ago, armed with a list of symptoms (my memory is so bad I’d never have remembered them all by the time I got to the surgery) and he sent me for a full blood test. Two days later the surgery called me in to see my GP and he confirmed I have an underactive thyroid. I didn’t ask for a printout of the results but he told me my TSH is currently 126 and I noticed on my next blood test form my T4 is 5.1. I have no idea what these mean, but he did say treatment for thyroid problems would normally start when the TSH rises above 10 so I’m guessing mine is rather on the high side. It was a relief to know there’s actually something wrong and it’s not all in my head, however I feel totally overwhelmed by the diagnosis. My symptoms got much worse after I stopped taking the contraceptive pill in August last year, and I feel as if I’ve coped for so long with so many niggly symptoms my body has just had enough and come to a complete halt. I’ve been off work for 7 weeks (and my GP has just signed me off for another 3) which makes me feel incredibly guilty – I feel like I’m letting my colleagues down – but I just don’t feel I could cope with the demands of my job if I went back now. The pains in my hands and feet are really getting me down, and my memory and concentration are totally shot to pieces. I’ve been taking 50mcg of Levothyroxine for 7 weeks (due for my next blood test next week) and iron supplements (also anaemic – GP also diagnosed fibroids as I’ve had horrendously painful, irregular and heavy periods since last August. He’s referred me to a gynaecologist) but I’m not really feeling any better. Some days I feel almost human, others it’s almost impossible to get out of bed. Is this normal, and has anyone else had to have time off work because of their symptoms? I hate having to take time off work but I’d be as much use as a chocolate fireguard at the moment.

Sorry this is such a long post – it seems to have turned into an essay!

Thank you

13 Replies

  • May I ask, are you separating the taking of levothyroxine from food, drink (other than water), supplements and medicines - especially iron - by a good gap?

    For most things a couple of hours is OK but for iron and calcium, you need a four hour gap.

    The major issue is that taking other things closer in time can reduce absorption of thyroid hormones.

    You may also care to read this:

    Some people (not all), find it better to take their levothyroxine at bed-time.

    I will be amazed if your are not still under-dosed and needing an increase in dose. Still, as that is being checked next week, hopefully you will get that easily.

    I suggest you ask your doctor to test you for vitamin B12, folates, and vitamin D. All are often low in people with hypothyroidism.

    I am not surprised you felt terrible. TSH = 126 is high!


  • Hi Moggy and welcome to the site.

    You have all the classic symptoms and feelings of guilt that go with thyroid illness. Unfortunately you will now have to listen to your body (which is telling you enough is enough) and take things easy. You have to retrain your way of thinking in as much as housework, work and socialising goes as you wont have the energy YET to do much of any of these but when your GP gets your levels back down and you start feeling near normal again then you'll be able to cope much better but in the mean time you need to stop beating yourself up for the things you cant do as you will only end up depressed.

    Being low in iron will also not help as you have, at the moment, a double whammy. An under active thyroid will make you very tired as will low iron so its no wonder you have no energy and no concentration.

    Start asking your GP for copies of ALL blood results so that you can monitor your condition yourself and also post them on here for advise.

    At what time do you take your thyroid medication. Its best taken at night and on an empty stomach (no food or drink except water for two hours) so that the body can absorb it to its dull potential.

    You might also want to get your GP to check your VitD, B12 and antibodies if he/she hasn't already done so.

    Moggie x

  • Yeah I had 3 1/2 months off work before more of less being forced back to work- or loose my job. However that wasn't a bad thing really. Keeps me moving on and money to pay for doctors, tests and supplements lol

    I hope you do better than me :0)


  • The mirena coil helped me. I went from having periods of 10 to 12 days to none,and consequently no pain. The hospital also increased my levothyroxin cos they considered that was a contributory factor. I did not suffer any side effects and have not for 7 years although I have read on this site that some people do.

    I have been diagnosed hypothyroid for 17 years. Good luck

  • I totally empathise with you. I understand the guilt feelings too. However, we need to remind ourselves that this is medical condition, you can't "buck yourself up" and it's not all in your head. When I read about what the thyroid actually does and the functions on our bodies, it's no wonder we feel like we are falling to pieces when it all goes wrong.

    I agree with Moggie, you will most certainly have to pace yourself with regards to life and prioritize what you need to give your energy to. I remember at the beginning having to have total down days after I had an active one, in order to recover.

    Memory, concentration and even small tasks like adding 2+2 were very difficult at the beginning. Coupled with complete exhaustion that doesn't feel any better after 10 hours sleep is bound to have an effect on your mental wellbeing.

    You are not alone and it DOES get better. All the best x

  • With a TSH of 126, it will take a while to get to an optimum level on your meds for you to begin to feel better. I hope your GP increases meds frequently (about every 4 weeks) till you begin to feel an improvement. Many do fine on levothyroxine if the GP doesn't insist on keeping it within 'normal' range. We should aim for a TSH of 1 or below.

    Always get a print-out now of your blood tests, with the ranges as labs differ and it makes it easier to comment upon them. He should also do a Vit D, Vit B12, ferritin, folate and iron.

  • Thank you all for your comments - they've really helped :-) I usually take my Levothyroxine first thing in the morning and the iron about half an hour later. I don't usually eat anything first thing in the morning but I do have coffee. I'll try taking the Levothyroxine in the evening from tomorrow to see if it improves things. I had no idea dairy/iron would affect the absorption. GP did say my folates level was on the low side (I'll ask for a printout next time I see him) but D & B vitamin levels were fine.

    Thanks again for your support :-)

  • Did your GP tell you that your VitD and B12 levels are fine or have you actually seen the results. I don't mean to disrespect your GP but we hear a lot here regarding GP's saying things are fine when the are anything but fine. Some GP's will even say their patients levels are normal and their test results are clearly showing "deficient" or "insufficient".

    I wouldn't wait until "next time I see him" to be getting a print out of ALL my results, I would be phoning today and asking the receptionist for copies. She will tell you that she has to ask the GP but that's normal practise and if you get any resistance you might want to remind her that you are well within your rights to have copies of your results. When you get them you can then post on here for opinions and advise.

    Moggie x

  • I didn't think to ask about Vitamin D - I asked if my Vitamin B levels were okay and he said they were fine. I wonder if my D levels are low though as I noticed from another post that low levels can cause joint pain and my bones are very painful at the moment, especially my hands and feet. I thought my Vitamin D levels would be fine as I'm out walking the dog most days (someone else takes him if I'm feeling really rough) so I get plenty of natural daylight.

    I'm going to pop into the practice on Monday to ask for a copy of all the results. I don't think I'll have a problem getting them - my doctor is so nice I think the only thing he hasn't done yet is offer me tea and biscuits!

    Thanks Moggie

  • Hi Moggie,You certainly need to ask the receptionist for bloods that have been tested, with ranges. Routine, they do ask a doc but never refused.No use without ranges. From the high tSH, you certainly need also FT3 tested and probably T3 and T4 on a script. Then the other tests too.Hospitals always ask the consultants sec.

    I hope that helps.

    Best wishes,


  • Thanks Jackie - I'm going to pop into the surgery on Monday to request a copy of the results.

  • Hi Moggie,

    It's also worth getting your Selenium level checked - this is an important mineral for the thyroid and is often low in hypothyroidism. Given the link between the adrenal glands and the sex hormones it would also be worth getting these checked too.


  • Thanks Xanthe - I think my GP may have included this in my blood tests as he requested a thorough lot of tests. I'm going to pop into the surgery on Monday to get a copy.

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