Iodine

[Warbiewoo]

I have got Graves’ disease but I now have post rai hypothyroidism, since having treatment in 2016, I’m still under 2 years later and just got increased from 50 to 75 Levo in may, where they said they would see in 8 weeks to see how I’m getting on, however I’m still waiting , they saw me in may 2017 and said they would see me in 12 weeks , but that appointment took over a year!!! I’m putting weight on every week, but am doing about 8 gym classes a week , so frustrating and demotivating. They say food rich in iodine will help, is there such a thing as iodine suppliment I can take ?

[SlowDragon Administrator]

Iodine is the last thing you need if hypothyroid

Your Levothyroxine is all the iodine you need

Your problem is you were left far too long on far too small a dose

We can only increase dose slowly. Retesting blood 6-8 weeks after each dose increase

Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Most people eventually need somewhere between 100mcg and 200mcg Levothyroxine

Ask GP to test vitamin D, folate, ferritin and B12

These are often too low after being hypothyroid for long time

Always get actual results and ranges on all test results and chase up appointments

For full Thyroid evaluation you need TSH, FT4, TT4, 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

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. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Nanaedake]

I'm afraid that you need to pursue your appointments and not wait until you are contacted. When levothyroxine dose is altered you should retest in 6 weeks time and then adjust dose again if needed and so on until you are on the right dose for you.

Depending on how your GP surgery works -- you might be able to simply make a blood test appointment with the phlebotomist. If necessary make a telephone apt with the GP and ask GP to authorise a blood test and then book an appointment with the phlebotomist.

Iodine supplement is inadvisable for people with thyroid disease. Levothyroxine contains iodine so you will be getting enough when you are on the right dose.

[Warbiewoo in reply to Nanaedake]

Thank you that’s helps

[Warbiewoo]

I have a lot to learn , thanks so much !!

[Warbiewoo]

I obviously have lots to learn, can you recommend any basic reading to start me off , would like to get my head round the basics before getting into the complicated stuff !!

[SlowDragon Administrator]

As Warbiewoo has had RAI, their thyroid has been completely shut down

So will need to rely totally on replacement hormones

[pennyannie]

I too am with Graves Disease, and had RAI ablation in 2005 -

Graves is an autoimmune disease, and is for life, your thyroid was the victim of the disease and not the cause.

Management of Graves, once the thyroid has been ablated with RAI can difficult, hence my being on this site and learning all I can in order to help myself.

There are a couple of books that might assist you on your journey, sadly, both from America where the medical and treatment options differ from the UK.

Elaine Moore's book - Graves Disease - A Practical Guide - there is also a website -

Tired Thyroid by Barbara S. Lougheed.

Dr Barry Durrant- Peatfield's book, Your Thyroid and How to Keep it Healthy - is a more

general read regarding the thyroid and how to get as well as you can.

It is essential that your blood tests should include both T3 and T4 reads, and that you are

not monitored solely on a TSH reading as Graves people can have TSI antibodies controlling the TSH giving a false TSH reading.

There is a lot to take in, take your time, you will probably have to be your own manager.

Hope this has helped - xx

[greygoose]

Who says iodine-rich food would help? Not your doctors, I hope! If it was your doctors, you need new doctors because they know nothing about thyroid. If it was friends and family, well, take it with a pinch of salt (non-iodised!). If you have less thyroid to make hormones, you need less iodine, not more. Iodine is just one of the ingredients of thyroid hormone, not some magic potion that cures all thyroid problems, as some people seem to think. Just eat normally, but avoid soy.

[Warbiewoo in reply to greygoose]

It was Pinterest, providing smoothly potions, I’ve got a lot reading to do I think, it’s so complicated!!!!!! 😩

[helvella Administrator Thyroid UK in reply to Warbiewoo]

Afraid that Pinterest has become one of the most detestable sites on the internet.

I would dearly love to be able to block all searches, all links, all mentions of the site, and further, the country-specific variant sites (.com, .co.uk, co.fr, etc.)

Yes, it really is so complicated, but it isn't that hard to start out, as you have done, and ask questions, as you have done.