Hi, I've recently been diagnosed with hyperthyroidism (t4 of 66) and have horrible symptoms which have stopped me working for the last 3 weeks - shaking, extreme fatigue, muscle weakness, dizziness, pain in arms and legs, itching, insomnia. As I can't get a hospital appt before the end of the year my gp has prescribed Propranolol and Carbimazole (20mcg) in the meantime (I've been on them for 10 days). Some of my symptoms are reduced, mainly the shaking, itching and the dizziness is a bit better. I'm due to go back to work on Thursday (when my sick note runs out) but really not sure whether I should be asking for another or trying to go back - I do a lot of driving as a salesperson and the leg weakness / insomnia concerns me. Is there anyone out there who can help with a bit of advice on how to help myself a bit more and if I'm being unrealistic going back this soon, also if there's anything that helps with the insomnia - this is bad at the moment as you'll see if you look at the time I posted this!
Advice on symptoms/ working: Hi, I've recently... - Thyroid UK
Advice on symptoms/ working
I too am an insomniac. I do not suffer from hyperthyroidism. My problem is hypothyroidism. However you should know from the outset that there are many symptoms which can happen in both/either situation.
I just want/need to say here that you must prioritise yourself. Get as much help from your GP (and other sources) as you can. Going back to work before you really feel able to is not going to help. Push for yourself. If you don’t articulate to the best of your ability, doctors can be remarkably without empathy. I hate to say it but you will be forgotten the moment you walk out your doctors consulting room. So you need to prioritise yourself.
I hope someone will come along shortly with better experience of hyperthyroidism to help you.
Thanks for that, I will do!
Hello Lynne and welcome to the forum :
Please speak to your doctor and get signed off work - until such time as these symptoms are relieved and controlled by the Propranolol and Carbimazole - which they will be given a few more couple of weeks - you are not well - and your doctor knows this.
It sounds as though you are being treated as for Graves Disease which is an Auto Immune disease which is considered life threatening if not medicated and for some reason your immune system has turned against your body - rather than defend it - and started attacking your thyroid and or eyes.
The thyroid is a major gland and responsible for the full synchronisation and control of all the body's mechanics and with a T4 reading up in the 60's your body is likely in a heightened state - and both mentally and physically - you can't turn off - have insomnia - and with something of a brain / body mismatch in what you think you can do - but with a body totally exhausted and burnt out.
Please rest and be kind to yourself - the Propranolol is a beta blocker which also slows down the rate at which your body converts the T4 into T3 - which is the active hormone which will also be high and over range - and the Anti Thyroid drug - Carbimazole - will build and semi-block your own new daily thyroid hormone production so both the T4 and T3 start to fall back down the range with your symptoms relieved.
All the drugs do is ' buy you time ' while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
Quite why this has happened is of course the question you are likely asking yourself and you are best placed to know the answer - if there is one :
There can be a genetic predisposition with Graves with maybe a family member a generation away from you with a thyroid health issue, and can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one - or simply appear ' out of the blue ' - and with no two peoples journey with Graves the same - it is a poorly understood AI disease - though we do know that stress and anxiety seem to be common triggers.
Do you have an further blood test results there - I'm guessing you have a TSH at 0.01 - do you have a T3 reading / range alongside the T4 reading / range.
There is more than one Auto Immune thyroid health issue that can cause over range T3/T4 readings - but only Graves Disease is treated with an AT drug so it is very important to know exactly which thyroid antibodies have been found positive and over range in your initial blood test -
and you should have readings / ranges there also for TPO - TgAB - TSI - TRab - or something reading like a TSH Thyroid Receptor result - generally a single number and range .
With Graves we have both Blocking and Stimulating antibodies and at any given time with either one of these extremes in control of the thyroid causing all sorts of symptoms with your metabolism and body -
When metabolism runs faster, or slower than our normal set point our body will struggle to extract ket nutrients from our food no matter how clean and well you eat - and low levels of core strength vitamins and minerals will compound your ill health further than necessary -
so please get your ferritin, folate, B12 and vitamin D run and share with forum members the results as just being in a NHS range somewhere - is not where health and well being are - and we need ' optimal ' levels throughout all our blood test results.:
The aim of the Propranolol is to protect your heart with the aim of the Carbimazole to be at initially a high enough dose to block your T3 and T4 rising any higher -
and slowly as these two vital hormones fall back down into the ranges - with the AT drug reduced down and further blood tests every 6-8 weeks to monitor your progress -
with the aim being to get these thyroid hormones back to around midpoint in the ranges - while we wait for your immune system response to calm back down again.
I found the most well rounded of all I researched that of Elaine Moore - books and website but I didn't start this research until I had been treated and was around 8 years post RAI thyroid ablation for Graves and much more unwell :
The most recent research that you may like to keep for later:
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
Thanks very much for the reply as I'm very much on a learning curve here. I don't have any other test results (didn't really know what to ask for) but, as you know, will be having more blood tests in a couple of weeks so will ask and also have a look at the links you've posted. Thanks for this as I think both my family and work are not really understanding this and think I should be better now I have tablets!
Well yes - I totally get that - but we looking at an Auto immune disease for which there is currently no cure - please do not feel pressurised - ' just taking the tablets ' is only part of the equation - and it takes as long as it takes for your immune system to calm down again - and with Graves there is rarely any ' bouncing back and being better now ' in the perception and understanding of non medical people.
Maybe register with your primary care provider for online access to your medical records - as we are now legally entitled to copies of all our medical records - just ask the receptionist for the necessary forms and you'll likely need to take some form of ID.
Blood tests should be run at least every 2 months to monitor your T3 / T4 levels and the Carbimazole reduced down as the thyroid hormone levels drop back down into range -
but blood tests tend to run a couple of weeks behind symptoms - so keep a note of symptoms being experienced and hopefully alleviated as you go through this phase of ill health so you can offer information at consultation rather than just be mathematical equation.
If you go into Thyroid uk - the charity who supports this patient to patient forum you will find a page listing the symptoms of hyperthyroid - an overactive thyroid - and hypothyroid - an underactive thyroid - and these 2 are the extremes opposite ends of the T3 yardstick - as it is too high a level of T3 for you that causes the symptoms of hyperthyroidism just as too low a level of T3 for you causes the symptoms of hypothyroidism -
as this might just help you understand better what you are dealing with - and where you are with all this - and yes, it's not that simple as some symptoms can be experienced when both hyper and hypo - as hypothyroidism can be experienced within the T3 and T4 ranges.
Ultimately the AT drug will be controlling your metabolism and we need to try and get your T3 and T4 levels to around mid point in their ranges where you should feel the most comfortable while we wait for your immune system to calm down and reset itself.
I remember only sleeping for an hour a night back in 2004 - and after around 2/3 months decided I couldn't cope and went to the doctor where bloods were taken - and received a phone call at work 2 days later to pop back to see the doctor - and then diagnosed Graves Disease an unfortunate name - discovered by an Irish doctor Robert James Graves who first started writing about this disease in relation to thyroid.
I think I asked to be signed off work for a week - knowing what I know now - I should have stayed away - as my work situation was my stress and anxiety trigger, having been attacked by a man I employed as my assistant manager and I was going through the company grievance procedure at that point in time.
Sorry - I digress - so anyway - please think and do what makes sense for you - you are the priority now, not your job -
just go one step at a time, your family will have a limited understanding at the moment so just give them time -
and work is work - and you are sick and there should be no pressure put upon you as your company will make alternative arrangements - and are legally responsible and have a duty of care towards all employees.
and your doctor will be supportive of further sick notes until such time as your blood test results for your T3 and T4 levels start falling back down into the ranges and you feel more comfortable in yourself to be able to consider a phased- in return to work -
I was very well on the Carbimazole and just wish I had been allowed to stay on it longer term-
and I'm guessing everything will look very different in around a months time.
There is an alternative Anti Thyroid drug if you find you can't tolerate well the Carbimazole - Propylthioutacil - PTU - for short - and imagine your doctor is liaising with the hospital endocrinology team as to your treatment regime while you wait for your hospital appointment - as the NHS system does appear to be backed up throughout certain areas of the country.
P.S. Did this itching start after taking the Carbimazole suggest you try PTU - and if your eyes feel dry, gritty, light sensitive and / or streaming water - whatever over the counter drops or ointments you may use to ease symptoms please ensure all are Preservative Free - even those prescribed.
Thanks very much for your replies, it sounds like you've been through it! I'm going to have another chat with my boss and try to explain a bit more (although he's not a particularly sympathetic type). I've worked full-time all my life so am finding not working a bit strange but realistically know that I'm currently not well enough (I think sub-consciously I'm putting pressure on myself about this thinking I should be back at work). I have blood tests booked for 4th Nov and a follow up appt with a gp so will ask for more detail then. Thanks again!
You are so right -
" the putting pressure on ones self about thinking one should be back at work " -
I remember that all too well - and yes I had worked full time for some 40 years and as a single person had no back up in place except my savings to rely on -
Considering Graves is considered life threatening if not medicated - you are being medicated and just need to give the medication time to work -
In a months time I think you will be in a much better place.
be safe, don’t be unwell, tired and driving.
My workplace has a wellbeing policy and encourages phased return to work or reduced timetables to support people with chronic health conditions. Speak to HR and occupational health about adjustments you might need temporarily, shorter and longer term while you get to grips with your symptoms and treatment.
Thanks, I'll do that. I work for a large company but my division is fairly small and we don't have an HR but I'm sure the wider company will have something in place. I've always felt guilty if off work ill but am starting to realise I can't rush this
yes it’s odd isn’t it, I watch colleagues all around me have day after day off for regular bugs and yet with a chronic illness I agonised over asking for a temporary adjustment while I got myself in better shape. My advice would be to know what you would like them to do, a clear short term adjustment with a review date on 3 months, showing you are willing to do something and not nothing etc. 🌱
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