I was diagnosed with Graves disease in May, my levels are within normal range now and being managed with medication. My problem is I've been ill on and off since October. Glands keep coming up and down, particularly under my armpits. I'm exhausted and just can't shake it off. I've had a load of tests off the GP, all of rhese being normal. She's taken more bloods today.. Anyone else experience anything like this. I was at the hospital today and they say as levels are normal nothing to do with them and couldn't be due to Graves.
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wendymjones
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Graves is an auto immune disease that doesn't only attack the thyroid.
When Graves attacks the thyroid the symptoms are such, that you need medical intervention because the thyroid is such a major gland.
Have you a positive TSI/TRab blood test confirming Graves Disease ?
What medication are you now taking and do you have any current blood tests you can share with the forum ?
If you don't know of the Elaine Moore Graves Disease website, you might like to take a look.
Graves is a poorly understood auto immune disease where your own immune system starts attacking your body - and this website might help you gain a better understanding of all things Graves.
I'm with Graves diagnosed back in 2003 and I had thyroid ablation with RAI in 2005, a treatment I deeply regret.
I just wish I knew back then of this amazing website along with the Elaine Moore platform, and learnt to take an active role in my treatment, and known that there were drug and treatment options.
I don't have a copy of my blood results,just the doctor said they were normal. I guess I could go and get a print out. I'll try that tomorrow. When I mentioned my symptoms at the hospital, he said it couldn't be due to Graves. I did question him as its an aut immune disease. The problem is that all they are bothered about at Endo are my thyroid levels, they have no interest in what is causing the issue. I will check that site out. Thanks. I am currently taking Carbimazole.
Yes, apart from testing for the TSI/TRab antibody to confirm the disease the medical profession do not know how to control or reduce the levels so tend to ignore them.
It would be good for you to keep copies of all your blood test results from your very first blood test and diagnosis so you can plot your progress over the forthcoming months.
In this way you will learn what level of anti thyroid medication suits you best and how this is reflected in the blood test results. AT drugs may need to be adjusted many times during the course of this attack on your thyroid and hopefully long term, you can continue to manage your symptoms on the AT drugs rather than be encouraged into the more drastic action of loosing your thyroid to either surgery or RAI ablation.
Your body clock has been running very fast, your metabolism speeded up, and now you may feel as though you have hit a wall at 100 miles an hour. Your exhausted, tired, suffering insomnia, unable to switch off, eating for 6 but loosing weight, anxious, stressed and generally very unwell, maybe with dry gritty eyes. These were just my symptoms, there are many others - and yes, your bloods may now look normal.
It is essential that you maintain your strength and ferritin, folate, B12 and vitamin D also need to be tested as you'll need optimal levels, not just " in range " numbers to keep your strength up.
Graves thrives on stress and anxiety, so I know this sounds silly, but cut yourself some slack, do things you want to do for you, try and relax through yoga, music, whatever you enjoy to calm down your mind and body.
You are entitled to all copes of your blood tests and again, please make sure these include your original diagnosis showing a positive anti body test for Graves Disease.
Thanks for your replay. The endo said today that I will be taken off any medication in May to see what happens and then they will take it from there. I have also taken a more natural approach and do lots of yoga and have been having accupuncture. I have asked for my Vit D to be tested. I will ask about ferritin and foliate. I haven't lost any weight, funnily enough but have been eating for 6..less so since the medication. I have been off work for a week and the doc has given me more time off so I can just chill for a bit..
The endo has made the above statement believing you are on block and replace and adding back in the Levothyroxine, are you now doing this, and if not, have you advised the endo of your actions.
Yes, please get the vitamins and minerals tested as detailed above as these, if not at optimal levels will pull you down even further while going through this thyroid attack.
Start a new post when with your blood test results and people better able than me can advise what, if anything, needs attention.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Graves’ disease
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
This is because the lymph nodes located under the arms can swell up due to infection and may also have something to do with the thyroid, however, in my opinion your GP needs to refer you to a specialist at the hospital. These glands known as lymph nodes can be more serious. Enough blood tests at your GP he or she should be writing a referral for you.
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