It may be a good idea to get your adrenal function checked. Too much of an adrenal hormone, cortisol, (which can fluctuate throught the day and night) can cause anxiety and panic attacks. Cortisol is best checked through a 24-hour saliva test. This measures levels at four key points of the day. I ordered my test direct from Canary Club for $99 (no dr order needed) as they had the best price - did the test at home one day and plan to take the results to a doctor.
Adrenal issues can also prevent your thyroid medication from getting into your cells for your body to use.
For some good information on T4 and/or T3 treatments and thyroid and adrenal testing, you may want to check out http://www.stopthethyroidmadness.com
you need to ask Dr to test your FT3 and FT4. Your meds need to be adjusted on the basis of these too, not just the TSH, particularly since you are not feeling so well.
Now, as a guideline TSH should be 1 - 2. FT4 should be about mid range or slightly higher in the reference and FT3 should be in the upper 1/2 to 1/3 of the range.
But this is a guideline only. Some people feel better with lower numbers and other with higher. TSH should only give a minor guide (if it correlates with the FT3 and FT4). But for many people, particularly after they have been medicated for a while TSH gets less useful and for some of us doesn't have any relation to our other numbers.
Hope this isn't too confusing. Essentially: More testing! Careful adjusting.
Make sure they test B12, Vit D, iron etc which may also contibute to feeling bad.
Hello. Your history sounds very similiar as to mine. Take a look at my journal that I wrote about my thyroid situation.
I don't remember reading above on what type of thyroid medication you are on right now. I know you tried Armour thyroid - but unfortunately, in the time line of when you said you started it - the medication Armour was already changed with other fillers that in turn - made the medication almost completely ineffective for many thyroid patients that did well on it prior to the new additives.
You symptom of the anxiety is almost a clear image of possibly not converting the T4 hormone into the direct T3 hormone needed to keep stability.
Its a cycle of spiraling downward when you are not recieving enough T3 and the adrenal thoughts are possibly correct. You see, when you remain too low on T3 hormone the adrenals are asked to work much harder than they should and eventually they too get pooped and need support too - since the thyroid and adrenals work very closely together.
Another very common issue when Graves and having RAI - is the thyroid is no longer able to produce the right amount of iodine ( healthy iodine) to keep the body working right and most find an iodine deficiency is an issue - even though the intake of iodine w/ food has not changed. A purer from of iodine may be helpful. If you have accompany bloating and moon face w/ your anxiety - iodine may be looked at as something to help you too.
Gluten intolarance is huge with thyroid patients after RAI and high levels of bacteria are very common - so diet changes to avoid certain things must be done to purify the body back to be able to convert thyroid hormones correctly.
Vit D and B also are very important in maintance with thyroid levels especially after the thyroid has been ablated.
When the thyroid is ablated - it doesn't just effect that one gland. many things become an issue and you need to alter many things with different diet changes to help you overcome those issues.
I am on about 7 years after RAI and can say you must do many different things - more than what the doctors originally told you - to help yourself feel good.
In many cases - a sole T4 medication may not be totally the only thing needed to get you optimal. Some are very lucky - but many find that it is just not enough as I am one of those.
I know you mention insurance being the reason for not persuing other advice. I will say - that if your doctor is only looking at the TSH as the tool to monitor your thyroid levels - especially after RAI - then you most likely will not find the best outcome to get you well after that treatment.
Thank you all so much for your responses. I have been doing research. I KNOW that my body s way off kilter and has been for a long time. I am 16 years after RAI and have yet to find a doctor to really truly listen and treat my symptoms. They sure are very eager to prescribe anti-depressants though. And, i am not against hem per se, but i cannot process them AT ALL. so, they do not help.
yes, I have a lot of bloating and moon face. I have very low - VERY low vit d, and for a while was proscribed Vit D, but then doc said i do not need it any more even though my test still showed low, but improved. I take over the counter Vit D now.
does anyone have more info on the proper diet and/or other resources for post RAI information?
Thank you all so much. I will continue to seek out other doctors until I find the right one for me.
I can give you all the resources you want on proper diet - but it won't be important to offer that unless you find a doctor willing to treat you correctly. It sounds like a mirror of my experience and seriously looking back that was he// on earth for me.
Let's start from the beginning again... Do you have the actual latest labs you took for thyroid" ?
Do you have any other labs like cholestrol - A1C vitamin testing? Femal panel of hormones? List all your meds your on and what's the dosage of thyroid med now?
I think you should also be checking into adrenal issues. These really affect the thyroid. and thyroid gland problems, unfortunately causes problems with the other glands due to trying to compensate.
And you could also be having some sex hormonal issues going on. You are at the age to be perimenopausal.
I also have those panic problems. I would also recommend that you see if they are more cyclic, in nature.
And just knowing that someone feels your pain and understands, always helps. So, I hope you get better soon.
i have latest test result for thyroid but its only the TSH, thats the only test they ever take. in 2006 i was .100 mcg of levothyroxine and my tsh was 2.9 but my 3rd gen tsh was.066 (.200-.600 range), free t3 at 90 (71-200) was the range. that was the last time i had a full panel taken. the doc said not was :"fine." he was a terrible endo, and i never went back. he did understand brain fog and depression being associated with thyroid. he freaked me out and i stayed with my PCP.
in the last couple of years i have been on .150 mcg and my tsh was .9 or .74. i asked to increase my levothryroxine because i was tired and fogg and thought 2.9 was too high a tsh maybe. but then i gained a lot of weight (after increase) and felt worse, so started to wonder if i was on too much. asked pcp to lower to .125 mcg and took that for six months. then the anxiety, panic, headaches, depression, sinus problems, ear problems started. went through a bunch of doc, blood tests showed that immune system irritated and the docs said i must have had a virus that got into ear, causing vertigo and nausea, etc. that got better but the panic, depression and anxiety remain.
my vit d is also rock bottom low.
no hormone panel has been done. doc does not think thats important or said to talk to obgyn about it, which i plan to.
i take prilosec and levothyroxine. i have been prescribed a lot of SSRI's none of which i can tolerate. i feel like i am taking illicit drugs when i take them and the side effects are intolerable. Lexapro is the latest prescription but have not yet picked it up.
i also take ativan in the last couple of weeks - about half a .5mg to sleep at night and tame the anxiety for a small part of the day.
so, no full panel in 4 years. no hormone tests. no adrenal tests. never been treated with anything besides levothryoid. i did try armour last year like i said, but that was no good.
i have good calcium levels, even a little high. thats it.