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Hyper and Hypo at the same time?
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
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?
Why I regret having RAI:
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.
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.
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.
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.
Hashimoto's has a genetic component...but mono (sometimes seen as glandular fever) is also listed in the medical literature as a cause of future hypo.
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'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.
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'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.
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