He diagnosed that he thinks it’s graves and had me do blood test at the hospital to test for anti bodies because the gp didn’t do it as I previously thought. I went to the go on Tuesday 14th and I really struggle
With needles so that was hard and had a cry and then sorted myself for more
He did however look at the blood test fromTuesday and said TS4 it is very High and my heart rate is still too high I am going post my most recent tests
I’m also showing signs of thyroid eye disease and I have an specialist ( but that is 2-3 months away so I’m paying for
Private)
He also suggested selenium along with my other medication
I am now on propranolol is 10g 2 times a day and I am on Carbimazole 5mg 3 tables 3 times a day
Is this normal ?because I feel like I’m Taking a lot of Medication and bit uncomfortable, at the though, I’m on my first day today and feel ok
I have a blood tests and telephone appointment in early feb the The endo in 3/4 months
Questions
Is the Dosage normal?
Can anyone Recommend a ophthalmologist around the London area? If some has had this issue before
Do I recommend when to get blood test?
Does anyone take selenium
Thanks to this group, I was not as overwhelmed as I thought I would be because of the advice you gave
Written by
Roxyhaart
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Your Free T4 is roughly double the top of the range, and you have no Free T3 result.
There is a possibility that you have Hashimoto's Thyroiditis rather than Graves' Disease.
Assuming your Endo arranges the right antibody tests for Graves' you'll know for certain whether you have that, hopefully in the near future. But if the antibodies for Graves' come back negative then your high Free T4 may be due to Hashi's which has a different set of antibodies of its own.
If it is Hashi's that you have then you might find that being hyperthyroid is temporary and you will eventually become hypothyroid.
If it is Graves' that you have then you may be able to put your condition into remission. Some people stay on anti-thyroid drugs for years, and refuse to kill off their thyroid or have it removed.
Whatever you do, just remember you don't have a definitive diagnosis yet, so don't rush to have your thyroid treated with radioactive iodine or removed. It is rare for there to be an urgent need to remove or kill off the thyroid, and there may be some self-help measures that work for you to make your condition more tolerable while you work out what is actually wrong with your thyroid.
I am with Graves Disease, diagnosed in 2003 and had radioactive iodine treatment in 2005.
I deeply regret this treatment, and only wish I knew then more about the disease, and had equipped myself to take some control rather than simply be accepting and compliant.
However you are much better placed and suggest, should you have Graves take a look at the Elaine Moore Graves Disease website. This lady has this auto immune disease and is a leading figure in all things Graves for all Graves patients world wide.
Graves is an auto immune disease that just happens to attack the thyroid, making your thyroid the victim in all this and not the cause.
The thyroid is a major gland, so when it comes under attack, the symptoms experienced can be diverse, frightening, odd, and in some cases life threatening.
It is your own immune system attacking your body, and it is your antibodies attacking your thyroid.
Initially you will be put on anti thyroid drugs, like Carbimazole, which block your production of thyroid hormones. These drugs can be adjusted according to your symptoms with the intention of bringing your thyroid hormones back down into range thereby relieving your symptoms.
Your body clock and metabolism are running very fast, and it's important to ensure that you maintain your core strength of vitamins and minerals for optimum health.
I know it's difficult but try and relax, and take time to be kind to yourself.
The AT drugs will kick in and you will feel more comfortable once your symptoms reduce
It may help you to start a record detailing your symptoms, the blood tests results, and AT doses, so you will become knowledgeable and have some input at a later stage.
I do not live in London, though do remember Moorfields Eye Hospital as being an excellent hospital and believe there are now TED ( thyroid eye disease ) clinics within the capital.
I believe all my treatment was instigated and managed by my local hospital with my primary care doctor simply there to follow through with the relevant prescriptions.
Thank you so much, it’s hard because I was a semi professional football set and retried in September and then this! It’s like I wanted to go back and play but scared and concerne
Yes I’m a teacher so I have a Fosker if everything and it’s all written down and I have printed off my hospital letters
Yes I’ve done some research but it can be confusing
Is there any vitamins I should be taking?
I have fantastic support and knowledge here but it’s just scary when you’re new and it’s like a slap in the face when you realise the realities
Until the AT drugs start working you will not be able to take on too much.
I don't doubt your confusion, so listen to some music, and try to divert your thoughts into something pleasurable that you like and enjoy.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, the controller of your inner central heating system and your metabolism.
Since your thyroid is under attack from your immune system, all sorts of symptoms can occur and it's important to rest as much as you can, though I know this can be difficult as your mind is going into overdrive and your brain not able to turn itself off.
The main vitamins and minerals to be monitored are ferritin, folate, B12 and vitamin D -
and as your metabolism is running fast there is a very good chance that despite an increased appetite you are loosing weight, have a loose bowel, exhausted, maybe having insomnia, and generally feeling as though you have run a marathon in 4 minutes flat and now have hit a brick wall at 100 miles an hour.
I have read that there is likely to be a genetic predisposition to Graves Disease maybe a generation away from you, and it can be triggered by an unexpected shock to the system like a car accident or sudden death.
I'm sorry to read this, but it may help you understand your situation a little better.
My comments are taken from Elaine Moore's work into Graves Disease which is what she was diagnosed with back in the 1990's.
She was and still is a medical researcher and her books can get a little technical but her website is a little more easier to understand - but then I'm with dyslexia - so maybe that's just a " me " thing.
I became very unwell some 6 years ago, and found no help nor understanding from my doctor, who actually referred to me as a conundrum.
I thought maybe my Graves had come back ?
I purchased Elaine's book - Graves Disease a Practical Guide and realised it had never gone away as it is an autoimmune disease and the RAI treatment I had been told to have, didn't actually, solve the problem, but compounded my issues.
It's a long story, some of it on my profile page, and in the posts I've responded to on this forum.
This amazing site, along with a couple of books has enabled me to turn things around for myself and I am getting my life back as best I can. I owe so much to this website and I try and help and give back when I see necessary.
I am having to self medicate and buy my own thyroid hormone supplements as do many of the people on this website.
This is a long way down the track to where you are now, so, don't follow me, but learn all you can, when you feel well enough to comprehend and retain the information so you will be able to manage and have input with your thyroid treatment.
Unfortunately Graves' is life long condition and I know it has shortened my life because of being left untreated for a few years. I am worried it will go on to attack other organs like my liver which I know is rare but it can happen sometimes. I am on my second remission and I am trying to cram as much into my life as I can and I have already booked 2 holidays for this year.
Hi, I have thyroid eye disease but with Hashimotos not Graves and took 200mcg selenium for 12 months (now 100mcg). I also use HycoSan Extra eye drops for dry eye symptoms. Do contact the thyroid eye disease charitable trust- I got great telephone advice on specialist ophthalmologists in my area, plus lots of useful information & support.
I found going gluten free has helped my overall health, as well as optimising key vitamins (B complex and D3/K2etc).
Remember to keep posting if you would like further advice- we are here to help & support one another.
Once you’ve had your antibodies tested you should know for sure. Your numbers are similar to mine when I had grapes, TSH below measurable level and high once you’ve had your antibodies tested you should know for sure. Your numbers are similar to mine when I had graves, TSH below measurable level and high T4.
I started of with 20 mcg carbimazole, then after four weeks I was tested and received a letter from my endo who I have never met but was booked in to see in a couple of months time. She told me to get more carbimazole and double my dose so I was taking 40 mcg a day. I couldn’t take beta-blockers because I have asthma.
I was being treated with block and replace which I liked and my treatment lasted for exactly a year. I’ve been in remission since 2012 and I went totally gluten-free about five or six years ago when I developed another autoimmune condition.
I say always keep a note of your test results, read as much as you can about your condition, don’t just have it done to you, i’d make sure your consultant knows you want to know all about what’s happening. I kept a diary and noted how I felt every day, I also kept notes on what medicines I was taking and I find that really useful when I went to see my consultant. Soph read as much as you can and don’t be pushed into any treatment you’re not sure about. Be kind to yourself, don’t try to do too much and don’t feel you ‘should ‘ be doing certain things, be a bit selfish and just do the things you want to do and feel like doing because When you feel better you’ll go back to being your old self.
There used to be someone on here whose partner went to Moorfields for thyroid I disease and they were very pleased with it. If you smoke you really have to stop because smoking is not good for thyroid-eye disease. In the meantime I would use a good preservative free eyedrops several times a day and that will make your eyes more comfortable, you can always use either and eye bag that you put in the microwave to heat or just a face cloth rinsed out in hot water and held over your eyes for a while, that feels good
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