RAIU Test results

[Reign7]

Hi. I couple of months ago, I posted my results here and received some helpful responses. I recently went to see an endocrinologist in hopes of getting some answers.

I did an RAIU test, and was told that the results were 37%, and that my thyroid was enlarged. The doctor said that I had a mild form of graves disease, and when asked about my weight gain, he suggested that perhaps I was over-eating. When I asked about my soar through and carpal tunnel-like symptoms in my hands, he stated that something else is causing those symptoms, and that I should ask my GP about that.

He prescribed 5mg of methimazole, and said that we had “caught it at a good time”. He ruled out hashimoto’s, stating that he had checked for antibodies that are specific to Graves. I am at a loss....I have gained weight, am fatigued, have lost some of my eyebrows, brittle hair, carpal tunnel etc....

Is there a test(s) that can definitively determine whether or not you have Graves or Hashi? I’m not convinced that his diagnosis is correct.

[Marz]

In your post two months ago the anti-bodies for Graves were mentioned and which you need testing. As SeasideSusie mentioned your results suggested Hashimotos but possible to have both Hashi's and Graves. Hence why you need the extra anti-bodies tested to rule out Graves and confirm Hashimotos. There was a link ti click onto ...

Have a read through your last post where there was good advice and come back if you have more questions. We have seen a few cases of members having the wrong diagnosis of Graves when it was a Hashi's flare. Really hope you feel better soon and sorry you had an unhelpful Endo. You could check him out on-line - is he a diabetes expert ?

Any chance of getting copies of the results the Endo carried out ?

[Reign7 in reply to Marz]

Thanks for your response. Yes, you’re right, I now see the link. I was so carried away with the low carb/ gluten intolerance links, that I completely overlooked it. I’ve made an appointment to see my GP to discuss the endos diagnosis. I will ask to be tested for those 2 tests.

This endo focuses on thyroid and diabetes...perhaps his main focus is diabetes. When I mentioned cold intolerance, be paused and looked puzzled , then said “it’s supposed to be heat intolerance .” As if it all wasn’t fitting into his tidy little box.

[Marz in reply to Reign7]

Really hope your GP will test Graves anti-bodies - could you have them done privately through Thyroid UK ? There is a link to the Medichecks test in your last thread 😊 GP may resist over-ruling Consultant ... and they all seem to ignore auto-immunity. Good luck 😊

[Reign7 in reply to Marz]

My GP is good. I will get the endos report details from her. He mentioned having test antibodies that are specific to Graves, but I didn’t catch the name. I’ll ask her to test for a TSI and TrAb, if the endo didn’t already test for those. I did have her test for celiac disease and it was negative. I will continue the quest for answers. Is there anything else that I should be tested for?

[Marz in reply to Reign7]

The coeliac testing is notoriously unreliable and can throw up false negatives. You could try being GF and see how you feel ..

I am assuming B12 - Folate - Ferritin & VitD have all been tested ☺ Sorry in a rush - have six arriving for a yoga class in a minute !

[Reign7 in reply to Marz]

Marz, thanks for your help. My folate and B12 were tested, not my vitamin D. Those tests came back within range. I will have her test for vit D. Hope you enjoyed your class!

[greygoose in reply to Reign7]

You really do need to get the name of the antibodies to see if it was the Grave's antibodies, because endos do seem to get Hashi's and Grave's mixed up more times than is acceptable.

TPO for Hashi's

TRAB and TSI for Grave's.

[Reign7 in reply to greygoose]

Agreed, he was rushing through the discussion. I wish that I had taken note of the name. I have booked an appointment to see my GP and will get the results then. If he did test for TrAb, what does this all mean? My symptoms don’t make sense with a Graves diagnosis.

[greygoose in reply to Reign7]

Anything I might say without seeing all the blood work would just be speculation. It could be that you have a suppressed TSH and in-range Frees. Or the FT4 high and the FT3 low. They would all mean different things. But, it's perfectly possible that - like many other endos - he just saw a suppressed TSH, tested TPO, and mistook it for Grave's. Who knows what goes on in their heads!

[shaws in reply to Reign7]

When we are trying to solve our health problems we don't expect doctors or endocrinologists to have such minute knowledge as they appear to know little. I think they may get a bit 'lost' over the TSH results alone.

[Reign7 in reply to shaws]

To be honest, since embarking on this journey, I realize just how little these doctors know. I was diagnosed as having Graves 4 years ago, without any antibodies being tested. It was only through my own research, and having helpful people in this forum, helping, that I realized the error of my first endo. The worse thing is to have an arrogant endo, who refuses to listen.

[shaws in reply to Reign7]

Feeling superior doesn't mean that, at the end of the day, the doctors know more than the patients. We have to look elsewhere if not improving and are fortunate to have support on forums on Healthunlocked for various diseases/ailments.

We probably know more than those with a 'certificate' which should mean that they understand about various conditions but on this TUK forum most member now know more than the specialists.

[Reign7 in reply to shaws]

Too true! I am very grateful for the guidance available here. Even just receiving validation that I’m not wrong to question things that these doctors say....that they just might not know about their “specialty.” In all fairness, know one knows everything, but they should at least be open to other possibilities that are contrary to the numbers. I won’t paint them all with the same brush, but good doctors seem few and far between.