Well, after one full year of misdiagnosis after misdiagnosis, they finally approved my uptake scan and found out that I have a hyper functioning HOT nodule, which is causing all of my issues.
Now I need to determine the best way to resolve it.
Has anyone here had any success in this area?
I don't want to kill my thyroid and go hypo, so any feedback will be greatly appreciated.
Thanks.
DanteNXS
Sandy12, perhaps you didn't read my post.
I have a hot nodule, which was causing my symptoms. I am trying to figure out the best method of removal, that will not cause the loss of the entire gland.
RAI or surgery, or is there another option.
DanteNXS
I think Sandy's trying to sell a book... 
I think most people here who've experienced RAI would advise against it - it tends to be a pretty imprecise way of solving the issue. This isn't my field of expertise though - just what I've spotted from posting here for a few years.
I'm sure someone will be along shortly with better advice. In the meantime, here's a fairly recent post which discusses pros and cons: healthunlocked.com/thyroidu...
I agree, but wasn't sure if there was a way to have RAI with a smaller dose, that wouldn't kill the entire gland. I am probably going to get the surgery, but have to find a highly qualified doctor first.
Thanks
Dante, I really don't understand this, because as Sandy says, Your FT3 last month wasn't over-range, so where exactly do they think the extra T3 from this hot nodule is going? It isn't in your blood. I agree it could be a problem, but then so is your Hashi's. Probably, without the nodule producing hormone, you'd be very hypo. But no way are you hyper - as I think I've said before. Isn't it more likely that it's your antibodies causing your problems, rather than the hot nodule? I think they're just grasping at straws because they really have no idea what they're doing.
I don't think you can just remove a nodule without removing the whole gland. I've never heard of anyone doing that.
greygoose,
Here are my latest labs. I am not sure about Hashi, as do not see anything that reflects that. Correct me if I am mistaken though.
FREE T4: 1.0 NG/DL (0.6 - 1.75 NG/DL)
T3, Free3: 3.2 pg/mL (2.3 - 4.2 pg/mL)
TSH: 0.470 uIU/ML (0.40 - 5.50 uIU/ML)
REVERSE T3: 13 ng/dL (8 - 25 ng/dL)
THYROID STIM AB: 36 % baseline (<140 % baseline)
THYROID PEROXIDASE AB: 2 IU/mL (<9 IU/mL)
CORTISOL: 18.2 UG/DL (5.5-20.0 UG/DL)
LUTEINIZING HORMONE: 6.5 MIU/ML (0.9 - 10.6 MIU/ML)
ESTRADIOL: 38 PG/ML (2 - 50 PG/ML)
Androstenedione: 92 NG/DL (50-220 NG/DL)
SEX BINDING HORMONE: 33 nmol/L (10-50 nmol/L)
Dihydrotestosterone: 19 ng/dL (16-79 ng/dL)
DHEA-SULFATE: 291 mcg/dL (38 - 313 mcg/dL)
Pregnenolone: 49 NG/DL (13 - 208 NG/DL)
Sorry, I thought you said you had Hashi's at one point.
But, how can you possibly be hyper with an FT3 mid-range? That makes no sense. If that nodule is producing hormone, it isn't producing very much.
I am just as confused as you are. All I know is that I have lost 40+ pounds, I am always anxious, no appetite, internal tremors, fast HR, palpitations, etc...
The uptake scan showed a hyper-functioning HOT nodule
Hyper people usually have raging appetites, and anxiety can be a hypo symptoms. Internal tremors sounds like adrenal problems. Have your adrenals been looked at?
They have done labs, and CT scan for the adrenals, what else can I check?
The HOT nodule has a blood supply as well.
Yes, but it isn't producing much in the way of hormone, is it. Or your Frees would be higher.
Did you have a 24 hour saliva cortisol test?
I have had 2 done, one was high, when it should of been low, so they re-did it and all was normal.
Do you think the nodule is not the issue? Even though it really shouldn't be there?
I have an appointment with my Functional Doctor tomorrow. What should I ask him?
Ask him if he really thinks the nodule is the problem. Most people have some nodules, but unless they obstruct your breathing or are cancerous, they are usually just left alone.
And, ask him to do all the antibodies - as Justina suggests - both for Graves and Hashi's : TPOab, TgAB, TRAB, TRS (think that last one is right, I can never remember!)
As you had two 24 hour saliva tests, and one was good and one was bad... it's still undecided, isn't it. How do you know which one was right? The good one or the bad one? Was your cortisol high all through the day? If so, that could be a forerunner of adrenal fatigue and things could be quite different, now. Any possibility of doing that again?
I will have the TgAB and TRAB labs done. I just had the TPOab and TSA done.
THYROID STIM AB: 36 % baseline (<140 % baseline)
THYROID PEROXIDASE AB: 2 IU/mL (<9 IU/mL)
I will also have the cortisol done again. But I am still confused about the HOT nodule. From all my research, it is never good to have one. They also found a COLD nodule on the same lobe.
The finalized report states. I recently reviewed results
CONCLUSION:
1. Hot nodule within the mid-pole of the right thyroid lobe, this appears to be a hyper-functioning nodule.
2. Can't exclude a cold nodule within the inferior pole of the right thyroid lobe; however, an additional nodule was not identified within this region on the prior ultrasound.
Have you had an FNA biopsy?
From what I've read, they don't really know what causes them, but unless they produce enough hormone to make you hyper - which doesn't seem to be your case - then they are best left alone, because the only 'treatment' is RAI or surgery.
I agree GG - now I've seen those lab results I'm really not sure how they can be blaming symptoms on a hot nodule. In all honesty, I think Dante (and Dante's doctors) should be looking for another explanation. Having just lost my partner to cancer when everyone dismissed her symptoms as being down to her thyroid for years, I'm perhaps being overcautious - but doctors seems to leap to ridiculous conclusions sometimes.
Please seek another opinion if you can.
jazzw, I am currently on my 4th conventional doctor and my 3rd Functional doctor. I have been to the Mayo Clinic, and a medical institute in Mexico. I am struggling to find another resource, but I guess I'll keep looking.
Thanks and sorry to hear about your loss.
DanteNXS
So sorry about your partner, Jazz. Big hugs.
Yes, you're right, they do jump to conclusions and are not in the least objective. I've had this experience myself. I deliberately didn't tell them at the hospital that I had a thyroid problem, because I knew everything would be twisted to fit that diagnosis, and the symptoms that couldn't be made to fit were just ignored. And so it was! We just can't trust them.
Dante, gg & Jazz,
I thought a hot nodule can switch on & off (similar to a tumor). Therefore, if labs were drawn when hot nodule was in "off" mode the hormone secretion could be normal.
Dante, do you have periods of feeling hyper (ie when hot nodule could be switched on) ? ? ...
I do indeed. Actually, that make sense, because I have also read that taking iodine with a HOT nodule makes one hyper and that is exactly what happens to me when I take iodine. Even when they gave me the low dose iodine for the scan.
Good catch radd!!!
Ahhhhhhh I didn't know that!
Dante, do you remember how you felt when those bloods were done?
Not really, as I often feel hyper/anxious, it is very rare that I don't, although there are times. Also, these labs are taken first thing in the morning, after fasting, which always makes me feel a bit different.
DanteNXS
So, I have been doing some more research and I came across this doctor who performs ethanol injections and radio frequency ablation of thyroid nodules as an alternative to surgery and RAI. They state that this is very common in Asia and Europe. Any thoughts?
DanteNXS
Well, I don't know how common it is, but I know it exists.
The radio frequency ablation of thyroid nodules sounds like a great idea - although I've no idea how it's done. But the ethanol has its drawbacks, I've heard. There's always a possibility that the ethanol will leak into the throat tissue, and I believe that is very painful!
I will do some more investigating on both and see what I can ascertain.
DanteNXS, I know that at the moment it seems like you don't have hashimoto's but I have found this article (Hashimoto’s thyroiditis presenting as single hot nodule and hypothyroidism which you may find interesting) link.springer.com/article/1... (click on the link on the right where it say's 'Look inside' for the article). It states that '...These nodules were hot by both 99mTc pertechnetate and radioiodine thyroid scans. In three of 4 patients followed up for longer than 6 months on adequate thyroid replacement therapy the nodules regressed by up to 60%.' About a year and a half ago, an uptake scan revealed that I had a single hot nodule. The endo wanted me to have RAI but I refused, they then wanted me to take carbimazole, which I also refused. I am now at a different hospital and they have placed no importance on the nodule, except by doing an ultra sound, which has revealed nothing untoward. I do have hashimoto's though and am on thyroid replacement. I Hope it's of some help.
Good information, however my TSH and other levels are not really represented in this, but I will ask my functional doctor about tomorrow.
Thanks,
DanteNXS
Did you get all antibodies tested? Could it be graves/hashi so it looks like your thyroid levels are ok but blocking each other. This seems to be very difficult to diagnose and treat for most doctors.
Yes, thank you, But I don't think Dante wants any part of his thyroid removed if he can help it!
sayitas, have you looked at his blood test results?
I definitely agree with others that doctors like to jump to conclusions: they have a list of explanations they think likely (depression being the ultimate example), and a list of things they think unlikely (e.g. thyroid or vitamin deficiency), and they will always prefer things off their own special list. I believed the ways doctors are trained is to rush to conventional conclusions, then cross you off their list.
Although the main reason I reply is because I've had a thyroidectomy and RAI for cancer, and I would recommend being really cautious with it. Again, doctors see it as a fairly minor procedure, and love to destroy bits of or whole thyroids for fairly trivial matters. But once your thyroid is gone you are absolutely at the mercy of your doctors. If they hand you an inadequate prescription and discharge you to your GP never to be tested again, and of course refused T3 there's not much you can do. And that's a lot like being back at square 1 for someone in your position who has been searching for answers.
I have been disabled for over 3 years now after mine. No working, in bed on my back for most of that time, unable to wash, cook, or even read and watch TV. I've recently started self medicating with NDT, now, and am slowly improving. My hope is that I will work part-time in maybe a year or so, but I don't feel hopeful of getting back to being the active person I was the day I walked into surgery.
I know I've been very unlucky, most people have an easier time than this, but I think taking a year or so to recover is standard. But because I've had such an improvement on NDT, I'm sure my real thyroid/body problem was something more complicated, which hopefully I'll learn about in the future. It was probably that that triggered the cancer in the first place, as I've always been a little hypo, but not had hashimotos, so the problem is somewhere in my brain or cells... Point being, I suspect you're in the same boat. You're not Hashi, you're not hyper in a clear-cut way. Your problem isn't something they are testing for.
So I think you should proceed very cautiously. Especially of people who tell you they've figured out the definite answer of what your problem is but it sounds fishy.
I also agree that with your functional doctor the biggest thing to pin down is whether they think the hot module could explain your symptoms. That's something I've had to really press a lot of doctors on "Does this explain all the symptoms?". " Do you believe this new finding is the explanation for all my problems?" and even "If you were in my position would you get this surgery?".Often the answers are surprising. Doctors will follow a certain test result finding or treatment of its on their own imaginary flow chart, irrelevant of whether it's a plausible cause of your illness or not. They just like to bag these things and cross them off lists. You definitely don't want to slice this thing out of your body if it's not causing life destroying symptoms!
Oh dear! Rather long. I do get a bit ranty about these things 
SilverAvocado,
I appreciate the feedback and wish you the best.
As for me, I know exactly what you feel like. I was going to the gym twice a day, playing golf, very active, prior to all this starting. Now I am more like a hermit. I do work, but my work has suffered greatly this past year. I'm surprised they've not let me go. I go home and lay down for the remainder of the day/night, barely have energy to cook or eat. It is very sad.
As for my doctors, they are clueless. All the tests and procedures I have had this year have been my doing. I have basically had to guide them into doing everything. I come on HU, get advice and then tell my doctor to run the tests, or check this/that. It has been very aggravating and quite disheartening to say the least.
And I agree with you and GG, no I do not want to kill my thyroid, and I am not even sure if cutting out the nodule will cause the same result. I am just so desperate to resolve this and get my life back.
I'm sure you know what I mean.
DanteNxs
Good luck DanteNxs! Yes, I do know what you mean.
Have you looked into working part-time? I'm a massive believer in it, I hate to watch friends who are ill slogging at work, and knowing they would have such a better quality of life if they had more rest. Easy for me to say in some ways as I was forced to stop There are many good psychological benefits to being out of the rat race, tho. I was very ambitious and a bit of a workaholic before, which I think may have been one of the causes of my original illness. I've just let go of all of that, now.
I am not sure if working p/t will go over well. I am in the USA and don't have any laws protecting my job.
Commiserations, I hear the situation can be terrible there. I would be in unbelievable debt if I was in the USA. I'm in the UK and I've been so lucky. I've been able to keep renting my flat and haven't even had to crack into my own savings. Good luck!
Must be nice. I use to live in the UK and Germany, life was much better then. I need to find a wife in one of those places now. LOL
We need a ThyroidUK dating agency
That would be nice.
Sandy12,
I have not been diagnosed with Hashi, unless secondary hypo falls into that category. I was diagnosed with sub-clinical hyper, due to the low TSH, which has always been low (below the normal range). I am not aware of any genetic issues in my family, but that could be a possibility. What I do know is that I have lost 40+ pounds, have a mixture of hyper/hypo symptoms, and no one seems to know WTF is causing it. I have been to several ENDOs, Functional doctors, and the Mayo Clinic, no one has a clue. This HOT nodule diagnosis seems to be the closest thing to a reason so far.
***As you can see, I am not a happy camper when it comes to my situation*** 
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