Going hyper after radioactive iodine treatment?

[Amethyst91]

Does anyone have experience with radioactive iodine for hyperthyroidism? I did in the beginning of August to treat my hyperthyroidism and heart palpitations. At first they seemed to go away but lately I’ve noticed pretty bad shortness of breath while trying to talk to ppl and fast heart rate with palpitations again. My dr said sometimes you go hyper before settling down but I feel like it’s been a while now and I should start to even out but I’m still losing weight and having symptoms of hyper.

[Lalatoot]

Amethyst I had RAI 5 years ago and am now hypo as a result. I went very hypo quite suddenly about 3 months after RAI.

I can say that the symptoms of hyper and hypo are the same in many ways for me ~ palpitations, faster heart rate, breathlessness, loss of weight, muscle weakness, anxiety and panic attacks.

[Betty97]

It sounds very much as though you are still overactive. Before treatment I was told that RAI is not an exact science and I may end up with an underactive thyroid...and I did. I personally felt much better before treatment and wish I hadn't had it but everyone is different.

You probably have to give it a bit longer to see if it takes your levels down. I would imagine they would offer repeat treatment if it has not had the desired effect after 6 months or so.

[pennyannie]

Hello Amethyst

I have Graves Disease and had RAI thyroid ablation in 2005 and was put on 100 T4 - Levothyroxine immediately :

I became very unwell about 8 years later, when, I believe, my thyroid eventually stopped working and am now taking a full spectrum thyroid hormone containing T3 and T4 :

I read primary hypothyroidism caused by RAI thyroid ablation is more difficult to treat :

I read RAI " trashes " vitamins and minerals :

I read RAI is a slow burn and the dose given, either in liquid or tablet form, not as accurate a science as one might think :

I do read of people having more than one dose of RAI :

Considering you had RAI last month I do think it's possibly too early to say much, and your doctor seems to be of the opinion that you need to give the RAI more time, and would hope he's seen more and knows more than me.

Take some time for yourself, your thyroid is in a state of flux, and although RAI treatment is relatively easy to administer at the time, and a lot easier than having a thyroidectomy, managing the consequences does seem to be very individual.

[bantam12]

It takes months to get the full effect of RAI so 1 month is a bit soon to assume you've gone hyper again, it may be that your thyroid is in an unstable bit of the process and chucking out more hormone. Contact your Endo if you are worried.

[SlowDragon Administrator]

As Lalatoot says, these symptoms can all be hypothyroid symptoms too

Are you currently taking any levothyroxine yet?

When were thyroid levels last tested

Ask GP to test TSH, FT4 and FT3. vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Lo2 iron can cause breathlessness

Low Ft3 can cause fast heart rate

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Come back with new post once you get results

[diogenes Remembering]

Thyroid instability after RAI treatment is wellknown:

Clin Med Res. 2016 Mar; 14(1): 40–45.

doi: 10.3121/cmr.2015.1297

PMCID: PMC4851449

PMID: 26864507

Transient Hypothyroidism after Radioiodine for Graves’ Disease: Challenges in Interpreting Thyroid Function Tests

Michael T. Sheehan, MD* and Suhail A.R. Doi, MBBS, FRCP, PhD†

ABSTRACT

Graves’ disease is the most common cause of hyperthyroidism and is often managed with radioactive iodine (RAI) therapy. With current dosing schemes, the vast majority of patients develop permanent post-RAI hypothyroidism and are placed on life-long levothyroxine therapy. This hypothyroidism typically occurs within the first 3 to 6 months after RAI therapy is administered. Indeed, patients are typically told to expect life-long thyroid hormone replacement therapy to be required within this timeframe and many providers expect this post-RAI hypothyroidism to be complete and permanent. There is, however, a small subset of patients in whom a transient post-RAI hypothyroidism develops which, initially, presents exactly as the typical permanent hypothyroidism. In some cases the transient hypothyroidism leads to a period of euthyroidism of variable duration eventually progressing to permanent hypothyroidism. In others, persistent hyperthyroidism requires a second dose of RAI. Failure to appreciate and recognize the possibility of transient post-RAI hypothyroidism can delay optimal and appropriate treatment of the patient. We herein describe five cases of transient post-RAI hypothyroidism which highlight this unusual sequence of events. Increased awareness of this possible outcome after RAI for Graves’ disease will help in the timely management of patients.

[humanbean in reply to diogenes]

The link for the paper mentioned by diogenes above :

europepmc.org/article/PMC/4...

It's the full paper, not just the abstract.