I was diagnosed with Hashi and have blood tests to support with antibodies anywhere from 1500 to 300 (both globin and peroxidase) depending on the day of the test. Also have TSH levels between 4.3-5. Symptoms cover both hypo and hyper. Weight gain, fatigue, heavy periods, intolerance to cold, but also infrequent heart palpitations, tremors(mostly in left hand), dry skin, hair loss, insomnia just to name a few. Doctor (GP) ordered a thyroid uptake test to rule out Graves and get a better picture of what was happening. Test came back normal for the scan but Hyper for the uptake test. So now I'm really confused. The blood test taken the same day showed my TSH at 4.8. Antibodies consistant with Hashimoto's. The doctor recommended that I get Radioactive Iodine Therapy to zap my thyroid because he says it will give us a level playing field to start medication and will get rid of swings from hyper to hypo due to Hashimotos. I haven't been able to find anything that supports this treatment. I can only find RAI for treatment of Graves. Does this seem to be the right approach or should I consider something else? I've had untreated Hashi for probably 10 years and had definite swings between hyper and hypo. Just didn't know it at the time and have never been on thyroid meds. These recent seemingly conflicting tests though have perplexed me. I also have quite a bit of memory issues, forgetfulness, like I'm preoccupied and miss stuff I didn't used to miss. I'm 36 and have always been very sharp so this part scares me a little. I'm ready to start feeling better. help
You have hypothyroidism. The TSH is borderline elevated and the antibodies are suggestive of Hashimotos. The elevated uptake is seen in hypothyroidism as the TSH is eleveated and this is the primary signal for the thyroid to take up iodine -- the I-123 uptake report should never say "hypo" or "hyper" becauses these are diagnoses based on lab testing not uptakes - the uptakes help us determine the cause of hyperthyroidism and is typically useless in cases of hypothyroidism.
Unless there has been documented low TSH levels or elevated T4/T3 I would not think that you have hashitoxicosis -- ie, swinging between hyper and hypo. The symptoms are not always specific to the hypo/hyper and I have seen hypo patients with anxiety, tremor and palpitations. If there is documented fluctuation between high and low thyroid labs (in the absence of thyroid hormone replacement or anti-thyroid drug use) then it may be necessary to knock the thyroid out with I-131 to gain control -- I have done this a few times, but it is seldom necessary.
Start taking some thyroid hormone - would use T4 alone at a 25mcg dose for 2 weeks then increase to 50mcg and check TSH 5 weeks later -- this suggestion is based on the "hyper" symptoms you are having just to be cautious.
I had RAI in 2002, and highly regret it. There are other options, surgery being the only other one that was recommended to me. I have since learned that it is possible to take ATDs (anti-thyroid drugs) for a lot longer than my doctor said, and wish I had been given that option.
I have never heard of doing RAI just because you have Hashi's, but it sounds like your doc thinks it'll make it easier to treat you. In another thryoid group I belong to, people with Hashi's are being treated by taking full thyroid replacement to suppress the thyroid, which gives the antibodies nothing to do. They say that stabilizes the condition.
I would just suggest that you read as much as you can about RAI before consenting to have it done. I wish I had!
First of all, some of those symptoms you think are hyper..can be hypo. Heart palps and hand tremors are something i had with hypo for example. couldn't even eat with guests because my hands trembled so badly lifting my fork to my mouth. I guess it's just the nervous system being affected. so anyway, keep that in mind.
i'm not a doctor...but what I do know is that every single person I know who has RAI has deeply regreted it. there are other treatments if you are hyper. dr. mark will probably address that.
could you have hashitoxicosis? or are you just hashi's going thru a hyper phase? in any event, please think long and hard about RAI. there is a group on the web called Atomic Women (sorry, don't know the link) which will probably be very informative to you. But i do think it's wise to listen to the patients who have been thru something.
I have one friend who was hyper and had the treatment and said it solved all her problems. I discussed other options with the doctor and his opinion is that if you nuke the gland so that antibodies have nothing to attack and treat the hypothyroid as a result things are a lot simpler and controllable.
I'm curious as to why you regret having the RAI treatment?
My doctor said he would work with me to get my numbers where I felt the most comfortable and would give me a standing blood test lab slip so I could go in whenever I felt the need. He wanted to make me feel like I would have a level of control, where now I have none. On paper it makes sense...as to whether I could have the toxosis...I imagine it is possible but it never came up in our discussion. The treatment is already scheduled for next week...that is why I was curious about other's experiences and whether they'd every heard of RAI being used to control Hashimotos. I had a really bad case of Mono when I was a teen. This doesn't run in my family...and have always wondered if it had anything to do with it...regardless, I thank you guys for your responses I will take them into consideration.
I have been diagnosed with Graves and hoshi's which I really don't understand since one seems to cause hyper symtoms and the other hypo! My endo wanted to do the RAI on me but after talking to the radiologist I decided that I didn't want that stuff in my body!! I have a family and do daycare so it just isn't an option! Needless to say the endo wasn't too happy about that! In the mean time the endo has me on Methimazole and I feel terrible! I am gaining weight, depressed, tired all the time and my hair and skin are a mess!! I was thinking about maybe having the surgery done. sigh...any thoughts?
None of these numbers show hyper and the I-123 uptake is sometimes elevated in hypo due to the increased TSH. While RAI is usually curative with one dose and most people do very well with close follow-up I am not convinced based on what you have presented that it is necessary at this point.
well - I think I need to go back and talk to him again before I go through with this treatment that is irreversible. I was so confused by the Thyroid uptake results and of course I just want to feel better. Are the numbers other than the high antibodies a year ago cause for concern? Am I hypo even? And when they talk about antibodies what does high titers mean?
I want to armed with as much information as I can so that I'm not stumped but hold my own in the discussion - thanks!
Also Dr Mark...can you explain how the high uptake can result even if you are hypo? How does that work? This is very helpful to me thanks for bearing with all my questions
From the atomic women site (women who have had RAI), here's a list they give for consideration. The site has medical references for where you see the numbers below. (btw, you can find that site by searching atomic women + RAI):
It's permanent; if you don't like the results, too bad
Since the science is inexact and dosage a guess at best, it may take years to be fully effective, or it may have to be repeated (1)
Can bring on thyroid storm as the dying gland "dumps" a lot of hormone (2)
Graves disease is an auto-immune disease, not a disease of the thyroid, so killing the thyroid doesn't stop the disease
Results in hypothyroidism (3). Who ever said hypothyroidism is easy to treat, lied
Being hypothyroid is neither less debilitating nor less dangerous than hyperthyroid
Increased antibody titers after RAI skew lab test results, adding to treatment difficulties
RAI, AKA spent nuclear fuel ("nuclear waste", in other words) is absorbed by other organs and can cause cell death or DNA mutations
For up to 4 weeks after dosage, we're exposing those around us to radioiodine
Studies show an increase in cancers, especially of the thyroid gland and small bowel, after RAI. (4)
Possibility of damaging the parathyroid, causing hypoparathyroidism.
RAI can cause difficulty with future attempts to become pregnant and carry pregnancies to term
Chance of thyroid eye disease developing increases dramatically, as RAI doesn't stop antibody production (5)
Chance of significant, unhealthy weight gain is increased
Replacement hormone products currently on the market, both synthetic and pig, are not comparable to our own hormone, and in some people, never feel "right."
Ongoing problems as the gland gradually dies, necessitating close medical surveillance and replacement hormone dosage adjustments
Increased risk of developing fibromyalgia
For most GD patients, medication with ATD's creates a euthyroid state similar to "normal life", and can lead to long-term remission as well
As modern science explores the human genome, a cure for GD could be found, but after RAI kills the thyroid, it wouldn't work
I-131 is so dangerous it's transported in a lead container and kept at the hospital only for the briefest time before being dispensed by a doctor shielded in lead from head to toe.
My endo told me it would be easy to treat the resulting hypo, and all I'd have to do is take a pill for the rest of my life. So, I thought, OK, I can do that. The problem is that once I became hypo, I was treated strictly by lab numbers and told that all the new symptoms I had couldn't possibly be my thyroid. My whole life, I was underweight, and never exercised. Even after being diagnosed as menopausal, I only gained 5 lb in 2 years. Suddenly, after I became hypo, I gained 50 lb in 3 months. But all my endo wanted to do was "discuss the relationship of diet and exercise to weight". At that time, I was exercising more than I ever had in my life, but continuing to gain.
I found that it's not as easy to treat hypothyroid as the endo
led me to believe. I have been to several doctors since who tell me basically the same thing. Finally, I started to research on my own and eventually found a doctor who treats by symptoms, and prescribes Armour thyroid. I am now feeling better than I have at any time since the RAI, I finally have a little energy, I'm sleeping better, fatigue is lessened, and I have lost 10 lb.
I am really saddened by my poor health for the years since RAI, because I feel I missed out on a lot of things because I no longer had the energy to do them. Your friend must be one of the lucky few, because everyone I know who has had RAI (and there are several), regret it.
The common thing I keep hearing from people who have gotten RAI is that as a result they got Hypo, which was expected but the doctor's they have are not responsive anymore to their symptoms. I've read 5 books on thyroid issues and it appears that RAI is safer than surgery because there is the risk in surgery of damaging the parathyroid gland that could damage your ability to process calcium? And also damage vocal chords. There is the added risk of the surgery itself and the fact that you'll have a scar on your neck.
The RAI is much less invasive. They've been doing it for 50 year's in the US with no clinical evidence that the radiation has any negative results to the rest of the body.
Correct me if I'm wrong but it seems to me that people regret having the treatment because their doctors don't do good follow up. My doc told me I could have a standing blood test order and could have one once a week if I wanted and he would work with me to keep my levels where they were comfortable to me.
My only fear is that for some reason I would lose a doctor that was so responsive.
Its a final step though and that is what scares me a bit. no turning back...I don't want to get fat and even more tired. When I told my doctor that he said that I wouldn't and that we would work to make sure I felt good....SO....my main question is how is it possible to have a hyper uptake (34% after 24 hours) and a TSH of 4.68 and test positive for Hashimoto antibodies. Hmmm
thanks - that does help. It is a confusing disease. So the RAI will take me from borderline hypo to real low hypo in a matter of months and will make me more dependent on medicine or at the very least higher doses of medicine. *sigh* I was on one hand so happy that I had a responsive doctor...someone who didn't ignore me when I told him all of my symptoms...it seems his approach is too aggressive for my labs. Now what? I just want to feel better.
You are borderline hypo due to hashimotos based on the labs presented. Any increase in TSH will stimulate iodine uptake by the thyroid -- so the I-123 uptake is slightly elevated -- the elevated uptake is often confused for hyperthyroidism BUT only thyroid blood tests can diagnose hyper -- the I-123 uptake helps distinguish between graves vs thyroiditis as the cause of the hyper (it's a little more complicated, but that's the big picture). If the only reason you have been told you are HYPER is the elevated I-123 uptake then I believe this is not the case -- as stated before and by others the symptoms you have can be seen in hyper so we cannot use symptoms to diagnose hyper in this case. Hope that helps.
Regarding the antibodies -- TPO and Tg antibodies are seen in both Graves and Hashimotos. TSI is seen primarily in Graves. There is some confusion about people going from "graves to hashi" - this is not the case -- the antibodies are positive in both and the reason for the hypo in most graves patients is a history of RAI - a different cause of hypo than hashi (chronic lymphocytic thyroiditis).
In thinking more about the increased I-123 uptake - this is common in hashimoto's thyroiditis which is likely the primary cause in your case. Classically the hypothyroidism will cause lower uptakes but in the case of hashimotos (the most common cause of hypo in the US) there can be increased uptake. Elevated TSH can also cause increased uptake, but most likely in your case it is the hashimotos. Hope that helps and does not confuse further --- Again, I am not convinced you need RAI at this point....in discussing with your doc, ask about the evidence that there is a hyper that needs RAI -- if it's the increased uptake, ask if hashimoto's thyroiditis could cause this as well (it can) - then state that you are reluctant to make a permanent change to the thyroid and given the labs consistent with borderline hypothyroidism either monitor the situation or try some thyroid hormone as previously mentioned. Your doc may be right that eventually a pattern is discovered of hypo/hyper but from what you've presented this is not yet proven.....
I understand. I wish there was an article or something I could bring in to back myself up on the uptake thing...I will look in a database I have access too. I'm a researcher for my job so I probably won't be that difficult...anyone have anything that would help. It would need to be something that is not from a page off the internet but from a medical journal something that he wouldn't scoff at. Thanks. I really am glad I found this forum.
I am 35 years old with two children. I was diagnosed with an elevated TSH after the birth of my second child. I was diagnosed hypothyroid. I was started on Levoxyl 50 mcgs. in 2001 and has stayed on the same medication until now. I was fine in June 2005 with thyroid being in normal range. In July, I had a bad cardiac episode and they found that my TSH was 0.00 negative (undetectable). Within 6 weeks, I went from hypo to severe hyper. I was taken off all medication for 4 weeks and my TSH went up to 3.4 and then 2 weeks later it had went up to 5.8 and then 2 weeks later 8.9. I was then put back on Levoxyl 25 mcgs. and my level went to 4.8 in 2 weeks. Then, my TSH went back up to 6.4 and I was put on 50 mcgs. My TSH came down to 4.6 and then I was put on 75 mcgs. and it brought my TSH down to 1.8. My doctor decided to change my medication to Synthroid since Levoxyl was still a new drug and thinking that it might be causing it to bounce around. I started taking Synthroid November 4th, at 75 mcgs. with a TSH of 1.8 and on November 22nd it was 3.3. I just had my blood drawn tonight, December 3rd and my TSH is 3.8. What is going on? I was diagnosed with Hashimoto's with antibodies. I was tested for Grave's and it was negative. I do have a cold intolerance, I freeze all of the time, I have severe dry skin and hair loss. MY BIG ? is, can your TSH flucuate this much. PLEASE HELP
This thread has been very interesting. I too have hashimotos. For 6 years I was treated with synthroid up to 150mg, which worked great. 2 years ago I was diagnosed with Breast Cancer and went through chemo. After that battle was finished my thyroid seems to level out but my symtoms got very bad. My doctor switched my to Armour 90 mg, which at first worked very good. Last Janurary I was diagnosed with BC Mets and started on chemo xeloda. After a month of being on xeloda I started gaining massive weight (over 10lbs in 10 days), my doctor didn't think it was my thyroid. After 4 months and another 20 lbs, he ran a thyroid panel, it came back THS .05 so they lower my dose to 60, 6 weeks later they did it again and this time it was 6.12, so they raised my armour back up to 90. Well I just got a call from my doctors office and now my TSH is .0898. I have goiter (found by a MRI, but not biopsied) and have restart chemo in 2 weeks because of a tumor in my neck. anyone ever had this experience? do you think the chemo caused all they problems? what do I do now? my Doctor is suggesting going back to synthyroid to try to level me out... I'm wondering if I should just have surgery to remove it along with the tumor in my neck and that way maybe I can get it back to normal..... PLEASE HELP, I CAN'T HANDLE ANOTHER WEIGHT GAIN.. not that and chemo too!!!!
I found it interesting that you had breast cancer after being on a T4 med only. Since low T3 has been associated with breast cancer (and T4 med folks often have low T3), I would want them to be checking my Free T3.
There is some evidence that low T3 levels may be associated with breast cancer. A study in Molecular Carcinogenesis (Gonzalez-Sancho et al. 2002) stated that T3 down-regulated the expression of T1, a gene that is over-expressed in human breast adenocarcinomas. The study concluded that T3 reduced the proliferation of mammary epithelial cells and inhibited the expression of cyclin D1 and T1 genes. Another study in the Annals of Medicine (Smyth 1997) indicated that although the exact mechanism for the association between thyroid and breast cancer is not quite clear, there is the possibility that the presence of thyroid abnormalities may influence breast cancer progression, and this should stimulate awareness into the coincidence of the two disorders. Finally, according to the World Health Organization, 45.5% of patients with a breast carcinoma had thyroid enlargement compared with only 10.5% of controls. Antithyroid peroxidase autoantibodies were twice as common in breast cancer patients as in controls. These findings provide evidence of a relationship between thyroid disease and breast carcinoma, although the mechanisms require further study (Shering et al. 1996).
wow... that is very very interesting. It was approx 5 or 6 months after I went on Armour that my cancer returned. So this study would indicate the need to stay on both T4 and T3 meds? I wonder why none of my doctors have ever even be concerned about these levels. I have a call into my PCP to get all the numbers, I post back when I get them. They took a complete panel, so the numbers should be available. THANK YOU
On Free T3. If the top end of the range is 420, then you're not even at the midpoint on Free T3. If this were me, I would want to be sure I was over the midpoint, and preferably in the upper 1/3.
On Free T4, .77 is usually considered hypo....and you are below that.
I would wonder why they are keeping you so low in your thyroid hormones - but I suppose it's because they're dosing you by the TSH. Not a good way to dose imo. It sure can keep your thyroid hormone levels low...and you hypo.
I forgot to mention one symptom that has always perplexed me and everything looks at me like I'm crazy when I explain it but I wondered if any one else has had these similar symptoms making it related to thyroid issues.
Every now and then I get a vein in my finger usually on my left hand the same one that has the tremor and once it happened on the top of my head...anyway, the vein begins to hurt. BAD. Almost like it feels when someone goes into a vein while drawing blood and hits a nerve. And then when the pain gets real bad, and the vein is visibly bulging, it suddenly bursts and the pain is instantly better and there is a small bruise left. Episode over. Has anyone had anything like that before? Or know what it could be? thanks for your help.
I appreciate all opinions shared thus far. I read that there could be nerve issues related to Hashimotos and wondered if this had anything to do with it. thanks again
I had, on and off over a period of 12 months, an unusual pain in my eye which felt like a blood vessel popping. It was such an intense sharp pain that originally I would look in a mirror to see if any evidence had been left behind. But not so. However it was all over and done with in an instant. I saw an opthamologist (before I knew I had Hashi's) who said he "didn't know what it was but lots of people experience it".
However, just last night we were all looking at a vein in my daughter's hand - which she said had been hurting for days. She not diagnosed yet but I'm suspicious she has hypo too.
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