Hi ! Long story short, I was diagnosed with Graves Disease back in 2018. I currently had my first relapse (last year) after being stable for more than a year. Latest blood test from the NHS was normal :
- Serum TSH: 2.6 mIU/L (0.27-4.2)
- Serum free T4 level: 18.7 pool/L ( 12-22)
Although blood test were good, I still feel fatigue (It was bearable), hairloss. Plus, I have noticed that I becoming bloated more often, headaches getting worse ( I started having them years before my diagnosis and was told I have tension headache) and eczema which I have consulted with them but written off as I need to use more lotion etc. The problem is these last two weeks I have been feeling really off, I had temperatures for three days which is gone now. I do still feel warm sometimes (normal temperature when checked with thermometer), chills, heavy to breath, and unbearable headache. Just wondering, if anyone with normal blood tests, is having these kind of problems?
Nb:
I haven't feel these bad since I was diagnosed, also the fatigue was this bad.
Planning to do private blood check for thyroid function next week too.
Additional question: do your original weight return or gaining weight once medicated? I feel that my metabolism stays quite fast and the hunger episode didn't fully went away
Written by
ABCD210506
To view profiles and participate in discussions please or .
Well your FT4 is in range (on the higher side) but your TSH is quite high. Around 1 is healthy.
Once you have been hyper the TSH can stay lower than expected for thyroid levels so it’s not reliable.
Which leads to the question what is your FT3. if FT3 was also high your TSH would likely be low so I suspect the FT3 might be quite low. Headaches, bloating & eczema are more common with hypothyroid. Although symtoms can’t relied on entirely as they are so varied.
Weight loss is common when hyper so regaining it once on carbimazole is expected. We are also told to be careful with diet as we have become accustomed to larger appetites.
I gained weight when hyper & loss weight when feeling well with euthyroid levels. Lost appetite when hypo & lost weight then also.
I will be checking my FT3 next week as planned. Yeah, originally my weight was around 68 kg pre-any thyroid disorder. Then it became 58kg due the hyperthyroidism and I never gained weight even though I was euthyroid for sometime even until now when I am on carbimazole. Plus I sometime still eat like a hyperthyroid person with the fast metabolism, it kinda puzzles me now since people keep talking about gaining weight when they are euthyroid or on carbimazole.
Any idea on the weight thing? Is it weird or normal??
Most experience weight gain / great difficulty loosing weight if FT3 low and weight loss if FT3 high. FT4 doesn’t always have same affect some aren’t affected by low / high FT4 whereas others are.
Euthyroid might still be low for them or they may be used to eating more with same appetite.
Others experience differently, not affected with weight, but there are always a minority who do the opposite.
Graves is a autoimmune disease and when it attacks the thyroid it is because the thyroid is such an important gland, the body's engine, that the symptoms can be life threatening if not medicated initially with anti thyroid drugs like Carbimazole or Propylthiouracil ( PTU ) .
The NHS generally allocate a window of around 15-18 months with the AT drug with the hope being this is a ' one off ' incident and you can stop the medication and everything goes back to normal.
Most recent research is actually suggesting the longer one stays on the AT medication the better chance there is of finding remission.
This seems a very sensible suggestion as loosing one's thyroid for the sake of an AI disease doesn't really make any sense, though it's likely a more expensive option to manage from a medical viewpoint.
When your metabolism isn't running to your unique set point you will find it difficult to extract essential nutrients from your food no matter how well and how clean you eat and I would suggest you get your ferritin, folate B12 and vitamin D bloods run and post the results back up on here as we need these optimal, and not just anywhere in the NHS range.
When optimally medicated you should be happy with where your weight sits, and it should be pretty much where you were, before this first phase of Graves Disease reared it's ugly head.
Are you back on the Carbimazole again ?
It sounds like your metabolism is running a little fast, as you have identified that symptom of wanting to eat for England - maybe you need your dose of AT medication tweaked a little ?
It sounds like you have also been dealing with a chill and or a bug ?
Everyone's journey with Graves is unique to them which makes it a poorly understood and badly treated as no two people experience the disease the same way.
Graves can be triggered by a sudden shock to the system, like a car accident or the unexpected death of a loved one, or can simply happen ' out of the blue ' .
Your thyroid is the victim in all this and not the cause -
The cause is one of your immune system having being triggered to attack your body.
There is likely a genetic predisposition with Graves Disease and there could be someone, maybe a generation away from you with a thyroid health issue, and quite why your immune system has been triggered is the 64million dollar question.
Once triggered, Graves can happen at other times throughout your life and there are people on this forum who simply take the AT medication when and if they have a further episode as it's said to be a stress and anxiety driven AI disease, and so when ' life ' gets in the way and they have a ' blip ' they restart the Carbimazole / PTU for a period of time.
You might like to read around Graves Disease especially on the more holistic and alternative treatment options that other countries in the World consider. I found the Elaine Moore's Graves Disease Foundation website the most well rounded of all the websites I dipped into and there is also a section looking at one's personality and what you may need to do for yourself and reassess, reconsider, your work/life balance.
Thank you very much for your response ! I was in euthyroid for a period of time. My weight never went back to what it was, it stays the same when I initially had the hyper.
Yes, I am on Carbimazole (5 mg x1)
Gp told me ,a week ago, I probably have an upper respiratory infection which probably what it was but I don’t have a runny nose or a cough. However, the fatigue and other symptoms aside from the fever have been going on for a while.
Maybe you need to have your dose of Carbimazole adjusted - run the blood test results as already detailed and then start a new post on here with the results and ranges and a brief resume of your situation and medications being taken.
If you can I'd suggest running a full thyroid panel to include TSH, T3, T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D as when metabolism isn't running to your unique ratio your core strength vitamins and minerals can nose dive through the ranges simply compounding your health issues.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice and experience would be very much appreciated
Grave Disease and Insomia
Long term effect of Carbimazole on immune system
