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Hashitoxicosis? RAI?
I was treated for hypo several years ago, and tested positive for Hashi's at the time. Eventually I was taken off medication as I developed hives and tested as hyper with even a small dose. This fall my TSH tested at greater than 150, Free T4 0.4. 2 months later, TSH was down to 125 but a sonogram showed a very small nodule (too small for a needle biopsy). Went to an endocrinologist, who suspected hashitoxicosis due to my symptoms, which are a mix of hyper and hypo type symptoms, and change back and forth. I had a radioactive iodine uptake which came back with a report that it showed I have Grave's. The endocrinologist is recommending RAI, then re test my blood in 6 weeks with probable treatment for hypo at that point. She says that my blood test results are essentially inaccurate due to hashitoxicosis. Does this make sense?
You may be right -- that is probably the root of the problem. It also could just be that it tends to take me a while to accept stuff like this. I am getting to the point where I just want to get the ablation over and done with so that I can, hopefully, get things under a bit more control and move on!
Please, tell me if I'm misinterpreting, but I feel you have a lot of unanswered questions, and this doctor seems to be pushing you into an irrevocable procedure without addressing your questions.
When did you last see the doctor? It seems she's not spending much time explaining things to you.
I think a second opinion is indicated. Even if a second doctor agrees with her treatment protocol, you might find someone who will explain more to you and who will take more time with you. I'm getting the impression this doctor is sending you off for an ablation with very little information. She's making ME nervous! LOL
When did you last see the doctor? It seems she's not spending much time explaining things to you.
I think a second opinion is indicated. Even if a second doctor agrees with her treatment protocol, you might find someone who will explain more to you and who will take more time with you. I'm getting the impression this doctor is sending you off for an ablation with very little information. She's making ME nervous! LOL
I don't know about the old test references - I don't have those test results any longer. It was a different endo and different lab, though, so it's quite possible the references differ.
I have an appointment to see the endocrinologist in early April, though she wants me to have the ablation done before then; she says she wants to do another blood test about 6 weeks post procedure. She is supposed to be mailing me the prescription for the ablation so I can make the appointment, but it hasn't found its way here yet.
I have an appointment to see the endocrinologist in early April, though she wants me to have the ablation done before then; she says she wants to do another blood test about 6 weeks post procedure. She is supposed to be mailing me the prescription for the ablation so I can make the appointment, but it hasn't found its way here yet.
Did the TGab that was done several years ago have the same reference range? If the ranges are different, the test could be reported in different units.
When do you see the endo?
When do you see the endo?
I just got some additional test results from the endocrinologist. Turns out she did test for thyroid stimulating immunoglobulin, and the results were in the normal range (38, ref is 0 - 139). The TPO Ab was 117 (ref 0 - 34) and thyroglobulin antibody was 1026.3 (ref 0.0 - 0.9), which is down from what I think it was 4 years or so ago but still very high. So I guess it's not Graves disease!
My endo is of the opinion that stress is the #1 trigger of the onset or exacerbation of autoimmune disease. I tend to agree with him. It can be emotional/psychological stress, but it can also be physical stress...trauma, sickness, starvation (including starvation dieting), meds, etc. When the stress goes away, the antibodies don't always go down.
The RAIU was early last week.
The stress thing is interesting. The first diagnosis came a couple of months after the death (and long illness) of my mother, and the potentially serious illness of my teenaged daughter. I was definitely stressed. This time, though, I can't point to anything so dramatic.
The stress thing is interesting. The first diagnosis came a couple of months after the death (and long illness) of my mother, and the potentially serious illness of my teenaged daughter. I was definitely stressed. This time, though, I can't point to anything so dramatic.
My blood results showed subclinical hypothyroidism while I was very hyperthyroid so the combination of Hashi's and Graves antibodies did weird things to the lab numbers. That hyperthyroid episode lasted two months (the trigger was immense stress that resolved two months later) although it took a year for the pretibal myxedema to go away.
I am still off meds - have not taken any since spring 2012. I was feeling quite hypo this summer, and my PCP gave me a prescription in November when the TSH came in so high, but when the follow up test showed the numbers going down I did not start them (with his agreement) since last time I was on them I became hyper and was so miserable with hives and shortness of breath etc. It seemed like I was following a similar pattern. No hives this time, at least, but I am now having hyper symptoms. For a while it seemed like I was hypo and hyper at the same time (based on the symptoms), but at this point it is more hyper. I am wondering if maybe the iodine from the uptake test is causing an exacerbation of those symptoms.
Hashi's is very unpredictable. In some people it takes years, or even decades, to progress; in others, it destroys the thyroid in a matter of months. My TGab was over 3,000 when I was diagnosed, so yes, 2,500 is perfectly possible. Also, with Hashi's, the thyroid sputters and spits, sometimes on an even keel for a long period of time, and then it falls off the cliff.
You said you were diagnosed four years ago but later taken off meds. So, that made me think that perhaps you were fairly stable for a period of time??? For how long were you off meds?
You said you were diagnosed four years ago but later taken off meds. So, that made me think that perhaps you were fairly stable for a period of time??? For how long were you off meds?
How long can you be in early stage Hashi's? I was first tested for it (and found to have really high antibodies - I think the doctor I had at the time said they were 2500, if that's possible - I can't find my records from back then) almost 4 years ago.
I can understand the diagnosis of hashitoxicosis. I'm just not seeing where Graves' comes in. Perhaps your doctor doesn't agree with the radiologist's diagnosis, either.
RAI will get you off the rollercoaster. However, I'd still get a second opinion to see if it's necessary. Early stages of Hashi's are often characterized by hyper phases or swings from hypo to hyper. Later, the disease settles into permanent hypo. With your TSH so high and FT4 so low, I'd wonder if that isn't happening.
Once you have RAI, you will be hypo, and you will be treated for hypo for the rest of your life.
RAI will get you off the rollercoaster. However, I'd still get a second opinion to see if it's necessary. Early stages of Hashi's are often characterized by hyper phases or swings from hypo to hyper. Later, the disease settles into permanent hypo. With your TSH so high and FT4 so low, I'd wonder if that isn't happening.
Once you have RAI, you will be hypo, and you will be treated for hypo for the rest of your life.
The diagnosis of Grave's was made by the radiologist reading the RAIU. The endocrinologist said that the RAIU confirms that I have hashitoxicosis and that the treatment for that is thyroid ablation, with follow up bloodwork and probably needing treatment for hypothyroidism at that point. I have been tested for Hashimoto's and that was positive.
Honestly, the symptoms seem to track pretty closely what I have read for both hypo and hyper, switching back and forth, and I feel like a hypochondriac to list them all. Maybe the RAI IS the best solution, just to get off the rollercoaster - it just makes me nervous.
Thanks for responding - it is very kind of you!
Honestly, the symptoms seem to track pretty closely what I have read for both hypo and hyper, switching back and forth, and I feel like a hypochondriac to list them all. Maybe the RAI IS the best solution, just to get off the rollercoaster - it just makes me nervous.
Thanks for responding - it is very kind of you!
You can see that your FT4 is well below range. This is not indicative of Graves'. RAIU is high, but with a TSH of 125-150, I don't see where she gets her diagnosis of Graves'. Is this the same doctor who originally thought you had hashitoxicosis?
If I were you, before I did anything permanent like RAI, I'd definitely get a second opinion and get some of your questions answered.
This doctor didn't test FT3, which is unforgiveable. With your FT4 and TSH, you ought to have raging hypo symptoms. Your FT3 might explain why you don't. Also, TSI (thyroid stimulating immunoglobulin) should be tested. This is the antibody that's elevated in Graves' disease.
Tell me about your symptoms.
If I were you, before I did anything permanent like RAI, I'd definitely get a second opinion and get some of your questions answered.
This doctor didn't test FT3, which is unforgiveable. With your FT4 and TSH, you ought to have raging hypo symptoms. Your FT3 might explain why you don't. Also, TSI (thyroid stimulating immunoglobulin) should be tested. This is the antibody that's elevated in Graves' disease.
Tell me about your symptoms.
No FT3 was not measured. By the range on the T4, do you mean the range the lab says is normal? That was 0.8 - 1.8. The thyroid uptake report says the 5 hour uptake was 25.1% and the 24 hour uptake was 46.3%, and that this suggests Grave's disease.
I vacillate between hypo and hyper symptoms.
I vacillate between hypo and hyper symptoms.
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