I recently been diagnosed with graves disease
Zori: I recently been diagnosed with graves... - Thyroid UK
Zori
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Zahrazori
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Welcome to the site. What would you like to ask?
I’m so worried I have this Graves’ disease
I really wanted to get pregnant I’m 42 this will be my first pregnancy but now I ha e this thyroid problem I ha e been put on carbimazole I was wondering shall I have a radioactive iodine instead as the dr said I will be on this medication for a long time
No, definitely do not have radioactive iodine. There is another medication for pregnant women called Propylthiaouracil and I know of someone who has been on this for about eight years and had three babies, all perfect and no adverse effects. You need to talk to your endocrinologist and ask him to change your medication. This woman is a doctor and knows all the best ways to deal with Graves.
Thank you for your reply
They did a ultra sound scan on my neck and found a noudle which is small the Endo who I seen privately said that eventually I will need radioactive iodine
They said it doesn’t look cancerous but they don’t knw until they do biopsy right?
How bad is Graves’ disease if I was pregnant can it be passed onto the baby?
Also please can you tell me with this autoimmune condition does it mean u can get more ill and eventually get cancer?
What test do they need to do for Graves’ disease
Thank you for helping me
The test you need for Grave's are:
TSH
FT4
FT3
TRAB or TSI - those are the antibody tests, and they should not be diagnosing you with Grave's unless they have done all those tests. You really need to get hold of your results. 
It would be worth getting TPO and Tg antibodies tested too.
What are these tests for
Higher than normal levels of TPO and/or Tg antibodies are an indication that someone has another thyroid problem called Hashimoto's Thyroiditis (referred to on the forum as "Hashi's", also known as "autoimmune thyroid disease").
Sometimes people with Hashi's are (incorrectly) told that they have Graves' Disease just because their thyroid hormone levels are high. But to know for certain that you have Graves' Disease you would need a positive result on TRAB or TSI antibodies, and these are quite often never even tested.
The future course of Graves' Disease and the future course of Hashi's are different, and someone with Hashi's will eventually become hypothyroid (i.e. will have an underactive thyroid). Knowing accurately which condition(s) you have can help you to understand how you feel and what is happening to your thyroid.
What levels should tpo be?
Aw thank you for ur reply
I will chase this up
What do u think about the noudle should that be checked out throu a biopsy
My thyroid piroxadase antibodies is 149
My t4 was 29.5
My t3 is 10.1
I have a small noudle I’m scared can this all be signs of cancer
TPO - thyroid peroxydase - antibodies are for Hashi's, not Grave's. But, we cannot say if they are positive without seeing the range. Ranges vary from lab to lab, so we always need to see the ranges used by the lab that did the analysis on your blood.
Difficult to comment on T4/T3 without the ranges, but they do not look high enough to be Grave's. They look more like a Hashi's 'hyper' phase. If that is so, then you should not be taking Carbimazole, because it will quickly make you very hypo. And you certainly don't need RAI. The levels will go down by themselves eventually.
It’s quite common to have nodules with Graves’ or Hashi’s - and usually no specific treatment for the nodules is required. I can’t find the link, but apparently people with thyroid cancer usually have normal levels of hormone, so as it seems you don’t , probably not something to worry about.
btf-thyroid.org/information...
If you had RAI, you would need to wait six months before conceiving anyway (but even if you do have Graves', it's too soon to be worrying about this option).
If you become pregnant while hyperthyroid, there is a small chance your baby might also be hyper, but this would be temporary , and you should be monitored for this all the way through.
btf-thyroid.org/information...
If you do need to be treated with antithyroids, as Hennerton says, there is an alternative to carbimazole usually abbreviated to ‘PTU’, which is preferred for women trying to conceive, or in the first trimester of pregnancy.
The first month or so of Graves’ is often awful, especially if no treatment is received. As beta-blockers (if prescribed) and antithyroids kick-in, most of us begin to feel a whole lot better, although it may be some time before you are back to normal.
There is some hereditary element to Graves’, so it’s possible your children might experience autoimmune disease at some point in their lives, but it’s only one of a very complex set of triggers.
Don’t rely on ‘it doesn’t look cancerous’ - have a biopsy done. When she was in her very early twenties my sister in law discovered a lump on her neck - her doctors decided it was ‘probably just a cyst’ and left her for a year while she was breast feeding. Turned out to be malignant after all so she ended up having a thyroidectomy, radiotherapy, chemo etc.
She was fine afterwards and that was over 45 years ago. She went on to do a university course, teach, she sails, she rock climbs, goes mountain biking, hill walking, winter camping. There really is nothing she can’t do so the prognosis is good.
Just make sure that you have that lump thoroughly checked out don’t accept ‘doesn’t look cancerous’.
I think by now loads of people have advised you about the tests etc you need so I won’t go over them again.
Graves Disease is pretty horrible but you will get better. As far as I know it certainly doesn’t lead to cancer - I’m in remission from Graves at the moment so it had better not!
Once you’ve had your vitamins and thyroid levels and antibodies and that nodule checked out then you can think about what you want to do next. Don’t do anything in a hurry.
Make sure you always get and keep a copy of your test results along with their lab ranges so that you know exactly where your results are within their ranges.
As for RAI - that would have to be my absolute last resort, hang on to your thyroid as long as you can, don’t consider RAI or thyroidectomy unless there is absolutely no option.
Thank you very much
I don’t think my Endo knows what he is doing he has really confused me he said I have Graves’ disease but hasn’t checked if I have
Tsh - 0.07
T4 - 29.6
T3 - 12.4
Tpo - 149
I went private I think I need to change this consultant
I asked if I can have this nodule checked he laughed at me he said the de that did the scan said my thyroid is inflamed he said there was a small nodule which can be a signs of Graves’ disease brewing
Are you in the U.K.? If you are then email Thyroiduk.org where they keep a list of endocrinologists and see if there is a good, thyroid patient friendly endocrinologist near you. Have a good read at the information on their site. It will be really helpful.
You need to have confidence in the endocrinologist you are working with especially if like you you want to become pregnant and also as someone said if you are pregnant you must take a different type of antithyroid drug - that person told you the full name of the drug - it is also known as PTU.
I say ‘working with’ because it is really important to be involved in your treatment and to have an endo who accepts that you want to be active in your treatment. You don’t want your treatment to be something you have ‘done’ to you. I think it is a bit much that he laughed at you for wanting your nodule checked out. That really isn’t the way to do things. He might see nodules all the time but it’s a first for you and he should have known you were worried.
Get yourself a notebook or I used to use a page a day diary. I kept all my blood test results in there as well notes on what drugs I was taking and how I felt when my levothyroxine was increased etc. I also kept a list of any questions I had and any useful information I came across. As they kept taking about radioactive iodine I found a lot of information about people who had been on carbimazole or or block and replace for long periods of a time in case I had to argue my case. I’m sure Thyroiduk.org can point you in the right direction for that too.
Good luck with it all. You probably don’t feel as if you will but you will get through all this. My treatment took a year, I was treated with block and replace and it took exactly a year for things to get fixed. My first post on here was to ask if I would ever feel normal again and I do. I don’t know how I would have ever survived without the help and support I got from this site and ThyroidUK though.
Wow what a details message thank you so much for ur kind help and time x
40-odd years down the line from diagnosis of Graves and subsequent sub-total thyroidectomy while 14 weeks pregnant, has not left me with Cancer. Only needed operation because I was pregnant and my Graves was not well treated at that point. My daughter was born well and now has two boys of her own,who have no sign of Graves.
Aww thank you for ur message gives me hope xxx
SlowDragonAdministrator
Ask GP to test vitamin D, folate, ferritin and B12 or test privately (see below)
These are often too low with Graves or Hashimoto's
Obviously good levels of vitamins essential when TTC
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
thyroiduk.org.uk/tuk/testin...
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. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's and Graves.
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG, and TRab or TSI thyroid antibodies for Graves tested at least once .
Private testing for suspected Graves - TSI or TRab antibodies
medichecks.com/thyroid-func...
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
