I apologise in advance if this blog not making much sense , but brain fog rife at moment sorry
I guess it's best to start at beginning
Going back around 30yrs ago after many many trips back and forth to the doctors after having ALL the symptoms of hyperthyroidism ( over active thyroid ) it was finally acknowledged that this was the case . I was told that they would prefer that my thyroid was underactive rather than overactive , so was treated with iodine to make this the case , so eventually ended with hypothyroidism , now, it took nearly 10yrs to manage to get any control over this problem , with thyroxine , but none of this about the thyroid was ever explained to me , I was just happy that I was starting to feel better so never really questioned it .
It was around 20yrs ago that I was told by an ENT doctor ( after an mri scan for my sinuses ) that I had graves disease , but again nothing was ever explained to me
Eventually found this to be hashimotos , but at the time was basically left to get on with it , now , went back to doctors about 11yrs ago , when was starting to get all the symptoms of a thyroid problem were starting again i.e , always feeling hungry especially sweet or salty food , very bad swelling in legs and hands , was getting a lot more infections , skin breaking out in spots and sores all over , extreme tiredness, would fall asleep at a drop of a hat , pins and needles in hands and feet , and there were a lot more , but cant remember them all , but again eventually managed to regain some control again with thyroxine, this brings us to present day now am back to getting the same symptoms all over again , but this time I am feeling a lot worse , very very unwell , aswell as this time having small lumps in left side of neck , having trouble swallowing , and often choking on even a stupid glass of water , keep losing my voice and at times am very very hoarse , cant sleep even though am totally shattered and yes, even got those hunger cravings again ( does anyone else get them cravings by the way , especially sweet things ) am waiting at present to see doctor on the 4th October 2018 to speak about blood tests and graves
Than you in advance for anyone taking the time to read this as it is a bit long winded , but believe when I say this is not even half the story , once again thank you for your time , and any thoughts or advice would be more than welcome and very very much appreciated
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Sweetpea1157
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Hello! And thank you for getting back so quickly, have not ever been checked for B12 but am hoping to have this resolved along with full thyroid spectrum when I see GP on the 4th
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies for Hashimoto's and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common and can badly affect Thyroid hormones. You need levels testing and then supplements to improve to optimal
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If TPO and/or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though can be high with Graves too
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.
Food intolerances are very common with Hashimoto's and Graves, especially gluten.
It's important to get TPO and TG thyroid antibodies tested at least once .
Hi slowdragon, thank you for getting back to me and thank you for the links you sent , I will be asking gp for all those tests to be carried out , so keeping fingers and everything else crossed . Will put up new post once seen GP to keep you updated , thanks once again
Sweetpea1157 For my last blood test, taken by the nurse, I asked for D3 testing because it had never been done. She said it was unnecessary as my ferritin and folate (have been taking supplements for several months) are now OK! (apparently there is no definite connection between these vitamin and mineral levels). She put in a test for cholesterol instead because mine is high. In spite of my query she insisted that hypothyroidism has no effect on cholesterol and I should use diet and exercise to help lower it. (Of course that would help, but...)
All stated kindly, but with absolute certainty, as fact! Impossible to argue without something like copies of technical papers showing it was incorrect - which would probably have offended her.
It seems rare to have a GP or nurse who will listen and wants to learn
I totally agree with you , the gp's and nurses just don't listen anymore and are most definitely unwilling to learn about our problems ; they would rather just lable us as " depressed hypochondriacs " as many on here have already stated
Do I take it, from reading the above, that you have had the Radio Active Iodine treatment for Graves Disease, to control the hyperactive thyroid symptoms, you were diagnosed with some years ago ?
I was diagnosed with Graves in 2003, drank the RAI 1-131 in 2005, and now hypothyroid.
I have had no acknowledgement that my recent symptoms were related to the RAI,
though I have since learnt to the contrary.
There is a book Graves Disease, A Practical Guide by Elaine Moore - and a USA website :
This site had been invaluable in helping me understand my current health issues.
It is essential that you get full thyroid blood tests including the vitamins and minerals,
as suggested on the post by Slow Dragon.
My doctor refused to do these tests, I undertook them privately and then had a starting point from which I received help from this site and started my way back to better health.
It is not ok to be dismissed as with " normal " results - post the results on here for help :
You have been struggling a long time, maybe now it's the time for you to take back some control of your health issues, as it sounds as if the NHS is failing you.
There is a lot to read and understand and you'll need to help yourself to become you're
Hi pennyannie, thanks for getting back to me , yes , you are right about iodine treatment, and yes I feel totally let down by our " GREAT " NHS . I will post results as soon as I get them
Hi tia thanks for getting back to me , will look into what you recommended, i will get the book and read it because I am hearing a lot about how diet seems to have a great effect on this condition and am always looking for more information
Hi reallyfedup, thanks for getting back to me , will definitely be asking gp for all those tests to be done , fingers crossed that he agrees to do them
Okey doke - once the blood tests are posted on here you will get help in understanding them and what to do next. In the meantime read all you can on here, via other people's posts, and as mentioned before there is the Elaine Moore Graves Disease USA website.
It's a long learning curve and if suffering with brain fog, a given for many people on here,
read and reread all you can.
Graves Disease is an autoimmune condition and as such is for life.
It seems poorly understood affecting approximately a quarter of 1% of the population,
so to some extent, we need to educate ourselves on all we can.
Hi , sorry to be nieve, but what is NDT as I'm still learning about my problems as they've never been explained to me properly , only finding out more since coming on here . Thanks for your help
Thank you, now you mention it , i vaguely remember reading something about that a few years ago , if i remember rightly though , the only way to get it was to go private , but I will not pursue anything thing till I have ALL my results
If the GP doesn't increase my thyroxine when the results come through I may have to make a copy of those guidelines to wave in front of them, even if they don't help, as well as getting some private tests for Vit D etc.
On the first lot of general blood tests (before having any thyroid tests), the lab made a note that I had enough B12 for at least 2 years, so no need to retest until then - even though it was only just over halfway [481ng/L (180-900)]
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Please can someone help me understand? 
Can someone help me please (if you can)
Self help advice please
Help and Advice Please?
