Radioactive iodine treatment

[Ashupan]

2 weeks ago had Thyroidectomy plus glands removed. Waiting for the RAI. Terrified of salivary gland damage. Alone not much support. Has anyone else had this one off treatment?

[PurpleNails Administrator]

Welcome to forum.

Sorry you are having to undergo this treatment, your profile explains you are requiring surgery & RAI due to cancer.

Are you recovering well from the surgery? What replacement dose have you been started on?

Often the TSH is kept low & FT4 & FT3 good in range to ensure residual thyroid cells are not stimulated.

Do you track your own thyroid results? Always a good idea to get & keep your own record of lab results with lab range.

Some members have had surgery & or RAI & quite a few members have had RAI in a lower dose level to treat hyperthyroid conditions.

The vast majority do well & once stable on the right replacement. Many here are hypothyroid from autoimmune so haven’t had the treatments but will relate to the struggles of non optimal hormone replacement.

[Ashupan in reply to PurpleNails]

Thx for kind words n advice. I hv got a copy of bloods and pathology. My doc will always give me if I ask. Have started on 125 micrograms Eltroxin. Will hv my first bloods done since op in 6 weeks. Surgeon has said he will monitor that for me, rather than my GP.

Am relieved, as GP is just that. General meds not thyroid expert.

Hardest part is the wait for RAI. So busy can’t get appointment til Aug 3rd.

My tummy always feel weird. Sort of bloated and gassy. Hard to imagine it’s a reaction to thyroxine in such a short time.

So many head banging worries and trying not let this really get to me.

This group so helpful. Nothing like this where I am.

[PurpleNails Administrator in reply to Ashupan]

There’s lots on information here to learn about thyroid & treatments.

thyroiduk.org

Full thyroid function test TSH FT4 & FT3.

The TSH (thyroid stimulating hormone) is a pituitary hormone. Which signals thyroid to produce more or less thyroid hormone. Its a poor indicator of thyroid levels. Low TSH occurs for many reasons.

FT4 is free thyroxine. Free in the unbound available to use T4. Eltroxin replaces the T4 the thyroid doesn’t produce. The thyroid also produces a quantity of T3 triiodothyronine. A further quantity is converted from T4. Free T3 is the active thyroid hormone that’s needed.

Optimal nutrients can help conversion to FT3. Optimal folate,ferritin,B12 & Vitamin should be tested.

Most feel well with FT4 in top 3rd of range & FT3 at least half way. Everyone is individual so your replacement dose should be adjusted until the levels are right for you.

Bloating may be due to the fillers in the brand. Some need to find one that suits & not change \ mix brands. It also might be your thyroid levels could becoming low & replacement will begin to resolve it.

[Ashupan in reply to PurpleNails]

Thank u. Hv saved this and keep as my reference. I r kind.

[Devonlad]

Hi Ashupan, I had full thyroidectomy 2.5 years ago, and was referred to Nuclear Medicine for treatment. Consultant wanted to give me RAI as I had a couple of nodules which were papillary cancer (no symptoms and not spread, found by accident).

When I asked about side effects I was told about possible/probable saliva gland issues. As I already suffered from low saliva/dry mouth I declined RAI and have been on Levo ever since. I am male, 74 yrs and weigh 73kg. I was initially put on 150mcg Levo, but after some months of feeling rubbish reduced to 137.5mcg and again after a year reduced this to 119mcg (125 & 112.5 alternately). I was okish on this , but never back to my earlier energetic self. I am a poor converter of T4 despite keeping vitamins etc at optimal.

For the last couple of months I've been trying a low dose of 2.5mcg to 5 mcg T3 Liothyronine (I had to go private as my Nuc Med Dr won't/can't prescribe T3). I'm still trying to adjust both the T3 and T4 amounts to find that sweet spot. I'm currently on 2.5mcg T3 and 112.5 mcg T4.

Hope this all helps you to decide what to do. You are not alone on this journey and this forum is a fantastic help

[Ashupan in reply to Devonlad]

I am going to hv to google T3/4.

So new to this don’t understand. Have only had the one blood test when the levels showed the hypothyroidism. I was operated on 3 days later!

I feel that incase cancer cells got left behind, I don’t really hv an option Re RAI.

Heck, this all awful. Appreciate your advice

[Devonlad in reply to Ashupan]

I presume they did a check on your lymph nodes when they took out your thyroid? That should give an indication if it has migrated. Mine thankfully were clear.

As I had no RAI the Dr instead has been checking on my thyroid blood levels including Thyroglobulin autoantibodies and Thyroglobulin by RAI, every 3 months. This apparently should show if there is any recurrence of any roque cancer cells. I did pay privately for an ultrasound scan a couple of months ago - all was clear.

According to my new Dr. as my cancer was papillary and slow growing it could be 15 years before any problems - which is not a worry for me as I'm 74!! I was also told it depends on the skill of the surgeon. Good luck with your research into T3 T4, it's a steep learning curve I'm afraid, but there's lots of help here in this forum.

[Ashupan in reply to Devonlad]

Lymph glands were cancerous. Surgeon removed. Hence his advice for RAI incase nasty cells still remain

[SilverAvocado]

Asbupan,

I have had RAI following a thyroidectomy for cancer.

I also think my salivary glands have been damaged. It means I can get a dry mouth very easily, particularly if my mouth drops open while I'm asleep.

It feels awful when it happens, as the dryness is enough to cause pain, and it can take a long time to fully restore the moistness. Drinking water doesn't really touch it, only saliva, or some of the saliva-like medications.

But the good news for me is this hardly ever happens to me anymore. I tape my mouth at night. Which is much less weird than it sounds, a tiny piece of medical tape in the middle of my lips. I've done it for years, and had a break of almost a year recently because of other issues with my mouth. But never had a dry mouth incident, I think using it long term has trained my mouth to stay closed all night.

There are also medications available. Lozenges to suck and month sprays. In my experience these seem to give you a liquid similar in consistency to saliva, which will give your mouth a little rehydration boost. Sucking a sweet also makes a big difference for me, as it stimulates saliva a lot. Unfortunately I can't manage the sugar, but I do suck on a peanut or something else I am planning to eat anyway if I feel a little dry.

For me, this is just a fairly minor symptom on a long-ish list of other symptoms and things wrong with me. I may be at the lucky end, and other people have it much worse. Unfortunately I don't know enough to tell you that.

My general advice would be not to worry too much about any individual symptom. Having a thyroidectomy is a huge, life changing intervention. You will probably have to make quite a few adjustments in your life in the future, as almost everyone will not get back to quite where they were before. Often the things you worry about in advance are not the things that end up being the difficult part in the future.

If you're preparing for your RAI treatment, you are right in the middle of your cancer treatment (mine was about ten months from walking into my first operation to my final RAI scan giving me the all clear). You are right there in the middle of the storm. My advice at that point is that it's the worst it will get, everything is at its most stressful and most chaotic. Just concentrate on hanging in there by your finger tips. Do whatever you need to do to cope and keep yourself in as good spirits as you can, and don't think too much about making plans or trying to make too much sense of what's happening to you. Particularly with RAI, I had that feeling of kind of letting myself go limp and be dragged along with the process. When th cancer treatment is all over and done with you will feel much better, and at that point you can start picking up the pieces and trying to put things in some sort of order.

For me, RAI in general was a super weird experience, I had to come off all my hormone for ten days, and then my hospital stay on top of that. For me I was almost like a zombie for my time in hospital. I don't know if it was the lack of hormone or the radiation, but I had extremely strange vivid dreams that I remember clearly to this day (11 years later), and generally was spaced out and other worldly.

I think of some of these strange thyroid experience as almost like stepping through the looking glass into wonderland. A strange upside down, topsy turvy world. I've kind of tried to find some enjoyment from it, and remember that people I knew at college would be paying good money to have similar psychedelic experiences. 🤣

My advice is to focus on taking care of yourself. Be very kind and gentle with your precious self. This is one of the hardest things a person can go through. Put effort into doing things you can to comfort yourself and make the experience as bearable as you can. For me that includes not indulging in negative thoughts, as these build up and make you feel worse, and try to focus on taking good care of yourself.

I also went through my surgery and RAI without much support. In some ways I still feel angry that my family were pretty useless. In other ways I feel great pride that I got through all this by myself, and seeing how strong and capable I have been is something I can always look back on to give me strength today.

[Ashupan in reply to SilverAvocado]

Silver Avocado. Thank you. I have read three times and had a fry and little laugh( Alice in wonderland comment). It is like going down a rabbit hole.

The surgeon here said that the Geneva Convention should hv banned the off hormones and low iodine diet prior to RAI. And that doesn’t happen anymore. There’s an injection prior to RAI.

I think only 24 hours in hospital too. Plus 7 days home isolation.

I am still gathering as much info re Saliva issues before agreeing to this RAI.

I hope yr day goes well and ThNk u again for advice

[SilverAvocado in reply to Ashupan]

You're very welcome, I'm glad it was useful

Good to hear you can have the injection instead of going off all hormone. I agree with your surgeon, it was a horrendous experience!

Good luck in figuring out what the best thing for you to do is.