GRAVES

[Themax]

So a few mentioned this, esp when I had Hyper before the Radio Iodine, now when I went Hypo, what is the chances of still having episodes of Hyper, as I had my symptoms before the Iodine and still having them only not as often. Trying to get info to go back to GP, although not hold out much hope with them, esp as they do not like ppl googling for info.

[Greekchick]

Hi Thermax,

Sorry for all the questions below but to answer you, some info is needed.

How long ago were you given RAI? Did you have one dose or did you have more? Did you have a goiter? Did you have Graves? When did you have your blood work taken? Did they run TSH, T3 and T4? What medication if any are you on and what dose? It helps if you have blood work to post the results here so that people can look at them and help you interpret them.

It takes some time for the thyroid function to stop after RAI. In some cases, it may be months, and in others, it can take longer. Keep in mind that there are similar symptoms that can occur in both hypo and hyper conditions as well, such as dry skin, hair loss and fatigue. If you still have some

thyroid function, you may experience both types of symptoms.

I live in Canada, but I have read enough on this forum to know that you in the UK need to have tests run privately if you want to get the specific tests I mention because GPs do not order these results. I would also suggest follow up with an endo. After an RAI you need to know what is going on and a GP is not really able to help you.

Just a thought - please don’t let anyone tell you not to look things up on the internet or seek out information from others. Shame on them! You have every right to inform yourself on your medical condition.

There is no question that some information on the internet is unreliable, but there are many reputable sources, such as the American Thyroid Association, Thyroid Canada and of course Thyroid UK, which I believe supports this forum.

There is great support from the members of this forum as well as postings that contain information that will be helpful to you. I just had a TT and received great advice and comforting words from the members here. I’m sure others will respond to your post as I know there are members who have had RAI and have provided their experiences here . They will tell you where to get blood work done as well other resources to help you.

I wish you all the best with your health and send you positive thoughts.

[Themax in reply to Greekchick]

Hi Greekchick. Had Radio iodine about 16 years ago 1 dose. And was put Loevothyroxine 75,then up to 100 and eventually 125, which I have been on for about 15 years. Always been told levels are OK, when bloods done, but not sure what exactly they test but being on here I know it's a very basic one. So getting it done tomorrow at Docs but will have to get a private one from Medichecks seems popular. Trying to see do to see about Graves test to see if I have the antibodies

[SlowDragon Administrator in reply to Themax]

Low vitamin levels are extremely common and can make you feel hyper, as thyroid hormones need good vitamin levels to work well

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). 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?

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Ask GP to include vitamin testing

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Themax in reply to SlowDragon]

Thanks Slowdragon up at GP now, not expecting a lot from them, but hoping to get information if they will test even if I have to pay for it or know somewhere I can get the full range tested

[SlowDragon Administrator in reply to Themax]

Private tests are available.

Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Details about differences in the two tests in Seasidesusie's reply in this post

healthunlocked.com/thyroidu...

[Themax in reply to SlowDragon]

Great info on here. Probably I would say i have Graves and she after talking to me says yeah but they will not test as no treatment But as i have had Radio iodine and am now Hypo and no treatment for it, the NHS will not do a test. My Thyroid test tomorrow she has put some extra on I think she is testing TSH T3 T4, I think Iron B12 and another not sure about, will know when the results come through

[Catseyes235 in reply to SlowDragon]

That is interesting that the TSH range is now 0.4 to 1.5 as my doc or at least one of them thinks my readings too low (okay 0.01 and now reduced dosage and feel fine but awaiting new FULL bloods test). Do you know the reference for that info please so I can give to doc - - who is actually genuinely interested and not just being an egotistical mansplainer!! Thanks

[Greekchick in reply to Themax]

Hi Themax,

Slow dragon has given you lots of good advice. It’s a good idea to test for the Graves antibodies. Note that you will always have them even after RAI or TT, so you should expect to see them show up in your tests. The level of antibodies present will give you some idea as to whether or not your thyroid maintained some minimal function after the RAI and that has triggered antibodies. My endo also told me that with Graves it is possible for antibodies to attack other parts of your body (specifically eyes and skin) in the future even without a thyroid. Hope you find out what the problem is and that it is not the case. All the best.

[Themax in reply to Greekchick]

Great info on here. Probably I would say i have Graves and she after talking to me says yeah but they will not test as no treatment But as i have had Radio iodine and am now Hypo and no treatment for it, the NHS will not do a test. My Thyroid test tomorrow she has put some extra on I think she is testing TSH T3 T4, I think Iron B12 and another not sure about, will know when the results come through