Newbie here. My experience

[Ellelove_postRAIgirl]

Hi everyone. New here after searching on Google for a thyroid community. Grateful. Just to share my experience.

Had Radioactive iodine therapy (RAI) after many years of ups and downs with Graves disease (hyperthyroidism). It's been almost four years since I've had RAI and I feel better being on this side of the battle (hypothyroidism). I do periodic bloodwork -thyroid function tests, and regulate the levothyroxine medication with my endocrinologist. Currently on 175mcg levo. So far so good. My latest test shows TSH is a bit higher than the upper range, but T4 and T3 levels are well within the normal ranges. My biggest help has been changing my diet and lifestyle to a much healthier one to support my health.

Living mindfully and reducing stress, drinking lots of water, eliminating inflammatory processed foods and incorporating whole foods and natural fruit and vegetable juices, moderate exercises, getting adequate sleep, using essential oils, thinking positive, connecting with support system e.g. family, prioritizing selfcare and taking life day by day with ease. It's become a way of life and one must fight to be healthy.

I still feel like there is more i should be doing or should know. Struggle with anxiety and overthinking atimes. Not sure if it's related to hypo but it sure was a lot when I was hyper. Will be happy to hear other warriors' experiences and advice.

Wishing everyone good health and wellness. Cheers! 😊😊🙂

[Buddy195 Administrator]

Welcome to the forum!

For me, increased anxiety is a sign that I need to tweak my thyroid medication; it occurs both when I’m under or over medicated, so I test my thyroid levels as soon as my anxiety spikes. It definitely is a thyroid symptom!

Can you share your recent test results (TSH/ FT4/FT3) with ranges, so members can offer you better advice? From your profile I’ve read that you live in Nigeria, so I’m unsure if you have the same access to your medical records as we have in the UK. It’s lovely to have international forum members. We are here to help and support you!

[Ellelove_postRAIgirl in reply to Buddy195]

Thanks so much Buddy195 for your kind reply. Yes I have my latest test results which I did last month - in August. We are able to request these tests in private labs in Nigeria and get our results directly sent to us. Here's the screenshot of my test below. Though it appears i should be doing the Free versions of these tests i.e. FT3 and FT4.

So happy to be here. Grateful for the support.

Test results

[Buddy195 Administrator]

I would ask your GP for an increase in thyroid medication. Your TSH should be 2 or below (with many members reporting that they do not feel ‘well’ until TSH is significantly below 1). Although medics may be happy that T3 and T4 are ‘within range’ this is not the same as ‘optimal’ and we all have different’sweet spots’.

It is also essential to test key vitamins that support thyroid health and supplement these if not optimal. I recommend testing levels of: ferritin, folate, Vit D and Vit B12. In addition, I would look into taking a magnesium supplement, as this has greatly helped my anxiety. I take magnesium glycinate early evening to help me relax/ sleep better. SeasideSusie has great links on key vitamins, so I will alert her to your post.

I will also alert members who have more knowledge re post-RAI, pennyannie PurpleNails

Sending you very best wishes 🦋

[Ellelove_postRAIgirl]

Thank you. I was wondering if I should redo the tests before seeing the doctor. Between FT3/FT4 and normal T3/T4 which is better? Perhaps the F tests will give the more accurate results? Please what's the difference between the two categories?

I'll look into getting the vitamin tests. Thanks for the recommendations.

[Buddy195 Administrator in reply to Ellelove_postRAIgirl]

Total T4 measures the bound and free hormone. Free T4 measures what is not bound and able to enter and affect the body tissues.

I would definitely get the key vitamins tested, as I’ve found having these optimal (as opposed to in range) supports thyroid health.

[Ellelove_postRAIgirl in reply to Buddy195]

Okay thanks. By optimal do you mean the levels could be out of range yet good for one's body depending on what works for each person?

[Buddy195 Administrator in reply to Ellelove_postRAIgirl]

By optimal, I mean ‘higher in the range’ (not over range)

[Ellelove_postRAIgirl in reply to Buddy195]

Okay great! Noted with many thanks.

[Buddy195 Administrator in reply to Ellelove_postRAIgirl]

Some members need both thyroid hormones in the upper part of their ranges, whereas others (like me) are fine with a lower FT4 as long as FT3 is high enough. ‘Sweet spots’ vary for individuals, so it’s very much trial & error.

I’ve only managed to achieve ‘my optimal’ on combination treatment (taking a small dose of Liothyronine alongside Levothyroxine), but most can do this by increasing Levothyroxine, so it’s worth trying this route first.

Please start a new post to let us know any new test results/ how you get on with your next appointment; we are here to help & support 🦋

[SeasideSusie Remembering]

Information about different forms of magnesium here:

naturalnews.com/046401_magn...

explore.globalhealing.com/t...

and ignore the fact that this is a supplement company, the information is relevant:

swansonvitamins.com/blog/ar...

[Ellelove_postRAIgirl in reply to SeasideSusie]

Thanks so much. Will check it out.

[pennyannie]

Hello Ellelove :

I too have Graves Disease and went through RAI thyroid ablation back in 2005 becoming very unwell around 10 years later.

We do need to see Free T3 and Free T4 results and ranges to comment fully - your TSH looks very high - suggesting that you are undermedicated but a TSH reading when with Graves and after RAI thyroid ablation is not a reliable measure of anything.

RAI is a slow burn and read primary hypothyroidism caused by RAI more difficult to treat.

RAI can also present with symptoms similar to those of Sjogren's Syndrome and fibromyalgia.

RAI is also known to be taken up to a lesser extent by other glands and organs in the body.

I do not know what treatment options there are in Nigeria and suggest you also register with the Elaine Moore Graves Disease Foundation which is Stateside and where Elaine has a world wide following on her open forum much like this platform.

Elaine had RAI for Graves back at the end of the last century and finding little help with her continued ill health and having trained as a medical technologist started researching this poorly understood and badly treated auto immune disease herself.

I now self medicate as in the UK we currently routinely just get prescribed T4 - Levothyroxine which seemed to stop working for me around 8 years after RAI thyroid ablation.

I read that some patients recover better on a combo of T3 - Liothyronine and T4 - Levothyroxine, whilst others find their health restored better taking Natural Desiccated Thyroid.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs all your bodily functions including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, and any physiological stress ( emotional or physical ) depression, dieting and ageing can also inhibit conversion of T4 into T3.

[Ellelove_postRAIgirl in reply to pennyannie]

Thanks so much pennyannie . No, these are not Free T3 and Free T4. They are total T3 and T4. My endo doctor does not specify which of them I should do so I usually just do T3, T4. I also do full blood count tests and my PCV and haemoglobin levels are always lower than normal range but I will add these key vitamin test going forward.

The doctor's treatment approach here is just adjusting the levothyroxine dose if necessary each time I do the tests which could be about twice a year. I send the results to him on Whatsapp message and he adjusts then i pay for the e-consultation. Is it the same in the UK? When you were seeing a doctor would you pay for the dose adjustments?

I haven't seen him yet because I know he would likely increase the dose based on the high TSH. I feel like my dose is already very high at 175mcg compared to what others take. I will log onto Elaine's website to learn more.

When you say you became very unwell 10 yrs post RAI, pls how did that present? Do you mind sharing what happened and how you felt?

I've Googled Sjogren's syndrome and fibromyalgia and I think I'm safe but will be mindfully watching. I've always had my eyes especially the left eye discharging white thick substance like many times daily from the base even before RAI and atimes gets itchy which is uncomfortable but not too severe (probably related to TED) but i can tear up if very emotional and have saliva thank God. I get joint pains atimes on my knees and middle finger joints but I usually increase my anti-inflammatory herbal teas and it goes.

Thanks for the insights. Wishing you and us all much wellness.

[pennyannie in reply to Ellelove_postRAIgirl]

If you press on my icon next to my name it takes you to my profile page.

Your dose is quite high - but I can't say much until I see the FT3 and FT4 results and ranges.

Can you get T3 - Liothyronine or Natural Desiccated Thyroid prescribed in Nigeria as these are the 2 other treatment options.

Basically we have a National Health Service and we pay contributions through our taxes and can't ' not subscribe ' and the idea is when ill you have free health care and see NHS doctors and get NHS free prescriptions and if you can afford you can go privately and see specialists and likely get offered other treatment options.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg with T3 being around 4 times more powerful than T4.

It just seems to me logical to replace both these vital hormones if your health isn't restored well on T4 monotherapy.

RAI slowly burns out your thyroid in situ and this can take weeks, months or years :

This is the most recent research I have found - I'm sorry it doesn't read well but feel duty bound to give you the link though I refrained from replying to you before now as I didn't want to burst your bubble, ncbi.nlm.nih.gov/pubmed/306...

[Ellelove_postRAIgirl in reply to pennyannie]

I've just gone through your profile and read your story. I'm so sorry you had to go through so much pain. You are such a warrior and a winner. I do hope you are much better now and are enjoying optimal health. Thanks so much for sharing your story and preparing our minds that anything can happen longterm. Hopefully with the support and advice here we can forestall adverse effects.

I'm not sure if we have the other two treatment options in Nigeria. Haven't even heard of Liothyronine before now. But I'll find out.

I'm really grateful for this forum and appreciate all the generous advice and support.

I want ask if there is any female who had RAI at a younger age and went on to have children afterward. I'm curious because I have marriage and children in my future plans and it would be nice to hear experience with pregnancy, childbirth and postpartum. I'll appreciate any alerts to a patient with such experience. Or perhaps I'll make it another post for wider reach.

Thanks.

[pennyannie in reply to Ellelove_postRAIgirl]

Yes, I think an additional post a good idea focusing on exactly what you want answered and maybe also register and ask on Elaine's forum elaine-moore.com as her followers are World wide and you just might find other forum members closer to home and already the knowing the system in your country and who best to help and advise you.

My Graves was diagnosed when I was 56 - so a totally different ball game :