I was diagnosed with Graves at the end of last year. At the time my TSH was very low and I did have the antibodies associated with Graves but my T3/4 levels were in the normal range.
Then my T4 levels ticked over into just above normal, and I was advised to start carbimazole at a low dose (5mg/day). I started about 3 weeks ago and since then I've been so fatigued I can barely function - I sleep 10-11 hours and still really struggle to wake up and I spend all day feelings like I can barely keep my eyes open.
I already experienced some level of fatigue with Graves but nothing like this - my GP says stick with it for another few weeks to see if you settle down then have a blood test but I feel like I can't carry on like this as struggling to work and do basic household chores. Anyone experienced this and have any tips?
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racheless
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Do you have your results? Obtain printout with lab ranges.
With Graves or continuous hyper thyroid levels are expected to have a supressed TSH eg (<0.01). With both FT4 & FT3 above normal range. Graves typically go 3x the normal range, but if you have hyper elevation which is likely to continue you need treatment to reduce thyroid production.
Doctors view 5mg carbimazole daily as the lowest dose (lowest available manufactured dose) but if it reduces production too much or your FT4 becomes low, or if your FT3 is already very low 5mg may be too much & you will have hypothyroid symtoms. Fatigue despite sleeping sounds like a hypo symptom. Others take every other or half a pill to reduce dose.
You will need to recheck your levels, this is usually done about 6 weeks after starting medication. FT4 & FT3 need to be assessed to adjust dose not TSH which is unreliable & can stay low even when levels are returned to “normal” range.
I’ve taken carbimazole over 4 years my TSH has never risen.
Which antibodies were tested? Often TPO antibodies are tested as these signify autoimmune but TPO are not Graves specific.
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies)
Elevated with - Hashimoto’s or autoimmune thyroiditis - can cause transient hyper, ultimately hypothyroid.
If Graves’ disease is suspected this MUST be confirmed with positive
So what symptoms did you have at the end of last year that took you to the doctors ?
Can you please share your TSH, Free T3 and Free T4 readings and ranges at diagnosis and also your antibody readings as this helps us better understand where you are in your thyroid journey and helps us better to help you.
Exhaustion and fatigue are very common symptoms as your body is at a ' heightened state ' and there can be something of a brain / body mismatch and while physically exhausted your brain can't turn off.
You may sit exhausted on the sofa but feeling as though you have just run a marathon and can't relax, and think you should go run another marathon, and / or with extreme hunger and eating for England but loosing weight, suffering insomnia, sleeping too much and with your body clock and metabolism unable to turn themselves off.
Everyone's journey with Graves is unique to them which makes it a poorly understood and badly treated auto immune disease but stress and anxiety tend to be common triggers and something has triggered your immune system to turn and attack your body rather than defend it.
There is likely a genetic predisposition to Graves with some one, maybe a generation away from you with a thyroid health issue.
With Graves you can experience either blocking thyroid hormone or stimulating thyroid hormone interaction at any given time and these two extremes of symptoms can vie for control and sometimes cancel each other out leaving you feeling relatively ' normal ' for a period of time as this first phase of the disease progresses.
All the anti thyroid drug - Carbimazole - does is semi-block your new own daily thyroid hormone production while we wait for your immune system response to calm down and your T3 and T4 to fall back down into range and hopefully your symptoms alleviated.
Once your thyroid hormones are back in range the AT drug is generally titrated down so your T3 and T4 do not fall too far through the range with you then experiencing the equally disabling symptoms of hypothyroidism.
Graves is said to be life threatening if not medicated and if the Carbimazole does not suit you there is an alternative - PTU - Propylthiouracil:
When metabolism is running too fast as in hyperthyroid or too slow as in hypothyroidism the body struggles to extract key nutrients through food and low vitamins and minerals can compound your health issues further - so please ask that your ferritin, folate, B12 and vitamin D are run and we can explain where these levels need to be if your share the results and ranges with forum members.
The most current research we have is suggesting that the longer the patient stays on the AT medication the better the long term outcome for the patient :-
Thyroid UK - the charity who support this forum - thyroiduk.org - also have much more information on all things ' thyroid ' and the back up services we may need to access to help ourselves.
At my last test my T4 was 22.2 pmol/L (reference range 12-22) and my TSH was 0.04 (range 0.3-4.20) -previously it has been <0.01 at diagnosis
T3 was 6.2 (normal in range 3.1-6.8) but has gone up each test from 4.8 to 5.8 to 6.2 since Feb.
My TSH receptor Ab level was high (3.41 in reference range 0-0.4, up from 3.1 at diagnosis)
I originally went to the doc with fatigue, daytime sleepiness, brain fog and palpitations. So quite similar to what I'm experiencing now but now it's even worse! NHS website suggests significant tiredness is a serious side effect of Carb and sign you should stop?
Well I would think the dose of AT medication needs adjusting so why not speak with your doctor and ask to be switched to the alternative drug - PTU - as mentioned above, and don't worry about the dose of PTU as these are not like for like strength AT medications.
Graves is considered life threatening if not medicated so please consult with a medical professional.
make sure you get regular blood tests as between appointments for my newly diagnosed graves I ended up over medicated with exhaustion and thyroid had gone very underactive fast. We are all different and my dr said I was very sensitive to the meds so they worked fast, but I couldn’t function at all like you until I went onto a lower dose and I became less underactive.
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