RAI

[b0b44]

are there any others on here that were hyper and then had radioiodine treatment?

are you now normal or under active??

i had RAI 15 years ago now and have had my bloods checked ever since but i am showing all the symptoms of being hypo but the bloods are saying i am displaying 'normal function'

[wightmouse]

Yes I had RAI in 2009. I went underactive very quickly. I think it depends on the endo what dose RAI you given. My endo said he was giving me enough with the intention of killing the whole thyroid off.

I think I may of read some people can have a couple rounds of RAI.

I was really ill after. Didn't know much about it then didn't have this resource. Just trusted drs.

Get a copy of your thyroid results with ranges and post them here and someone will help interrupt them.

[b0b44 in reply to wightmouse]

i seemed to be fine with no after fx of RAI but really the last 5 or 6 years been suffering from the cold and low mood 45 BPM resting heart rate (and i am fairly unfit) etc

these are my current bloods

Serum ferritin level (XE24r) 98 ug/L [30.0 - 400.0]

and

Thyroid function test (X77Wg)

Serum free T4 level (XaERr) 15.0 pmol/L [12. 0 - 22.0]

Serum TSH level (XaELV) 2.33 mu/L [0.27 - 4.2]

and

B12/folate level (XalqS)

Serum vitamin B12 level (XE2pf) 271ng/L [197.0 - 771.0]

Serum folate level (42U5.) 9.5ug/L {1.9 - 25.0]

if that makes any sense?

[Shaun_m]

I had RAI in 2015 after being hyper for about a year. I am now under active.

[SlowDragon Administrator]

Do you have any recent blood test results and ranges to add?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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.

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

How much Levothyroxine are you on?

Presumably you had Graves' disease before RAI ?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request the list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Many patients find, even after RAI that strictly gluten free diet can be beneficial too

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

[b0b44]

thanks so much for all of this - appreciated

spent 18 months on carbimazole before RAI - yes diagnosed with graves - very hyper - don't have numbers but i had standing heart rate of 100 - i'm not on any meds currently and haven't been since the RAi in 2004

i have an appt with GP on tues so will see which ones they are willing to do and proceed accordingly with or without their help

nurse at the surgery was first to admit that the standard test isn't often that accurate - i resisted asking what the point of it was!

these are my current bloods

Serum ferritin level (XE24r) 98 ug/L [30.0 - 400.0]

and

Thyroid function test (X77Wg)

Serum free T4 level (XaERr) 15.0 pmol/L [12. 0 - 22.0]

Serum TSH level (XaELV) 2.33 mu/L [0.27 - 4.2]

and

B12/folate level (XalqS)

Serum vitamin B12 level (XE2pf) 271ng/L [197.0 - 771.0]

Serum folate level (42U5.) 9.5ug/L {1.9 - 25.0]

[MrsGraves]

Had RAI 10 years ago after hyper with rampant Graves. Took me a few years to start feeling underactive with the very same symptoms you have. Thing was, my Endo back in 2008 told me that after RAI, those of us who have had extreme hyperactivity will probably never do well unless our thyroxine levels are at the top of the ranges despite doctors saying our results are ‘normal’ . My levels were practically the same as yours are now when I got trial of Levothyroxine from GP. I have never looked back. Currently on 125mcg per day, FT4 20 (12 - 22) and FT3 6 (3.1 - 6.8) and my TSH is practically non existant but my doctor no longer worries about that. There can be a good quality of life after RAI.

I hope you have a successful appointment and manage to negotiate some Levo to see if your symptoms subside.

[b0b44 in reply to MrsGraves]

thanks so much much appreciated

[MrsGraves in reply to b0b44]

You’re welcome. I remember that feeling of being in limbo.

[b0b44]

so just been to see my GP again armed with facts from the thyroid UK forum - he was very dismissive of the suggestion that the standard thyroid function test is in any way inconclusive - he flatly refused to get my T3 tested and after considerable pressing as to why he conceded it's protocol and is too expensive...

i am being retested for

cortisol level

electrolytes & creatinine

haemaglobin A1c level

glucose level (i was type 2 diabetic briefly 15 years ago too - diet controlled and no meds)

fasting

thyroid peroxidase (TPO)

Ab level

thyroid function test

do you have any suggestions for somewhere i could get my T3 checked band what other tests would you recommend to help build a picture please?