Lightheaded 24/7 PLEASE HELP

[Stephenie]

Hello. I need some help if anyone can. I was diagnosed with Grave's Disease January 2009. I got put on methimazole or whatever it's called and not even 6 months later, I became hypo so they took me off. I was feeling great being off the medications. A couple months later I was in a store and started to pass out, and they called 911. Ever since then I've been lightheaded 24/7 and sometimes I feel like I'm going to pass out. I was completely healthy before going on meds for hyperthyroidism. My doctors won't consider my graves because my thyroid levels are 'normal'. I also have a goiter ever since that first attack. I've had an MRI of the brain, been to ENT, cardiologist, everything. No one is helping. My lightheadedness is worse when in big bright noisy places. On a sidenote, I've had a goiter ever since then.

I'm currently taking anti-anxiety pills and they do help with my panic attacks I have from all this. The lightheadness is still there but not as bad. So it must be mostly anxiety, but WHAT is causing this? I'm only 18 and I have no stress at all and I loved life til this happened.

Something keeps telling me it's grave's disease in some way causing this. The only medical problems I have is that and PVCs which are treated with calcium channel blockers.


Maybe it's a reaction from not being on the medication anymore?
My goiter?

Something that cannot be shown on the blood tests.


I know this was long, but please give me any ideas as to what this could be, or who to go to, or if you've experienced this.

[nasdaqphil]

Hello and welcome.

Interestting stuff. First, I would like to see some labs. NO ONE has Graves and then doesn't have Graves. You either have it for life or you don't have it at all. Sometimes she will go into remission but it's usually for a short period of time.

These boards are filled with people, including myself, who have been put on anxiety meds and have panic attacks and it usually triggers anger since most of us have messed up thyroids and we know that's the problem.

In your case, I think anxiety is playing a big part in the lightheadedness BUT the question is why do you have so much anxiety and that's where the thyroid usually comes into play.

I am going to take an educated guess that what you have, like myself is hashi-toxicosis. That's when you essentially have Hashi's AND Graves both at the same time and if that's the case, it's hell. I am ALWAYS anxious and often feel lightheaded or wobbly/dizzy. I don't even drive any more as a result.

You need to find yourself a good endo and get a full set of labs, including thyroid antibodies AND TSI.

I would also advise trying to get a 24-hour catecholamine test and ACTH to check your adrenal glands. Sometimes tiny tumors can cause those type of flashes and dizziness and it is often a difficult diagnosis.

You can google any of the tests I mentioned to see what each does. I don't think the meds have much to do with it now. I think your thyroid is testing neutral (good labs within range) but the intermittent day to day fluctuations might be messing you up. My labs are very often "in range" but my antibodies are always off the charts. I would suggest a thyroid sonogram as well to get that goiter checked out...make sure there's no nodules there.

[Andros]

Originally Posted by Stephenie

Hello. I need some help if anyone can. I was diagnosed with Grave's Disease January 2009. I got put on methimazole or whatever it's called and not even 6 months later, I became hypo so they took me off. I was feeling great being off the medications. A couple months later I was in a store and started to pass out, and they called 911. Ever since then I've been lightheaded 24/7 and sometimes I feel like I'm going to pass out. I was completely healthy before going on meds for hyperthyroidism. My doctors won't consider my graves because my thyroid levels are 'normal'. I also have a goiter ever since that first attack. I've had an MRI of the brain, been to ENT, cardiologist, everything. No one is helping. My lightheadedness is worse when in big bright noisy places. On a sidenote, I've had a goiter ever since then.

I'm currently taking anti-anxiety pills and they do help with my panic attacks I have from all this. The lightheadness is still there but not as bad. So it must be mostly anxiety, but WHAT is causing this? I'm only 18 and I have no stress at all and I loved life til this happened.

Something keeps telling me it's grave's disease in some way causing this. The only medical problems I have is that and PVCs which are treated with calcium channel blockers.


Maybe it's a reaction from not being on the medication anymore?
My goiter?

Something that cannot be shown on the blood tests.


I know this was long, but please give me any ideas as to what this could be, or who to go to, or if you've experienced this.

I believe I have read of your plight on another forum that I am not a member of.

That said, it has been my thought and remains my thought that it would be wise to get a ferritin test. Low ferritin can cause the symptom you describe and much more.

Ferritin is the protein that stores iron for cellular uptake. This is a very very important test in spite of the fact that your hemo comes back in range.

So, let us know if you had this test or if you plan on it.


Visual does play a role in this also w/ Graves' but it would be good to rule out or rule in the ferritin first. There is a "spatial" problem in Grave's.

[Lovlkn]

Hi Stephanie,

I'm sorry to hear you are having these issues. Do you have any current lab work you could post with labs?

It is unlikely that you achieved a remission being on ATD's for 6 months which caused you to go hypo. What is more likely is you were placed onto ATD's , went hypo - were taken off and gradually moved back into euthyroid or hyper again which is why seeing current labs would be helpful to see where you are currently at. "Normal" has a big range and alot of times doctors tell you you are in normal range but you may be in high or low range and may still may be in need of some sort of thyroid medication. Tests you should request are a FT-4 and a FT-3, your doc will automatically run a TSH but the FT tests are what you should base your dose off of or determine if you need medication.

Have you ever had a TSI test? Do you know what tests they ran on you to confirm your Graves diagnosis?

People can have anxiety hypo or hyper - along with the light headness you describe.

[Stephenie]

Thank you everyone, it means a lot.

I am conveniently going back to the endo this Thursday, and I will write all these tests down and DEMAND he let me take them. As for the Low ferritin, I got tested for anemia but I'm not so could I still have this? I do have a lot of the symptoms of Low ferritin though.

I'll also ask for a copy of my labs from him while I'm there and update with the numbers.

As for the 24-hour catecholamine test and ACTH, I've actually gotten those done because I was curious about that too, it came back normal as well.

[Andros]

Originally Posted by Stephenie

Thank you everyone, it means a lot.

I am conveniently going back to the endo this Thursday, and I will write all these tests down and DEMAND he let me take them. As for the Low ferritin, I got tested for anemia but I'm not so could I still have this? I do have a lot of the symptoms of Low ferritin though.

I'll also ask for a copy of my labs from him while I'm there and update with the numbers.

As for the 24-hour catecholamine test and ACTH, I've actually gotten those done because I was curious about that too, it came back normal as well.

No other test can take the place of the Ferritin test for that is the protein that binds the iron for cellular uptake. If low, that is not good. It should be 50 to 100 and the closer to 100, the better.

Lovlkn has suggested some good lab tests for you. And as our Administrator has pointed out, Graves' does not just go away. It does wax and wane, however and that can lead one to think they have gone into remission.

[Lovlkn]

As for the Low ferritin, I got tested for anemia but I'm not so could I still have this? I do have a lot of the symptoms of Low ferritin though.

I had CBC's all the time and it never showed up so you have to request the ferritin test to know for sure.

Do you have heavy periods? Hers is the strange thing about low ferritin levels - it can actually make your periods heavier thus causing ferritin levels to go even lower or remain low. When I had mine tested due to a friends suggestion based on my symptoms it was 18 (10-120) I took 77elemental mg of iron daily for over a year - which is 1/2 the dose recommended to get the iron stores up and never could get it past 45 - The iron made me extremely constipated and I begged my Gyno to do endometrial ablation to stop my periods and now my ferritin level is in the 80 range taking just 12mg iron daily or less depending on which vitamin I take.

Issues cured from raising the ferritin levels - fatigue, dark circles under eyes, muscle/joint pains, RLS, my insomnia got better but unfortunately is not completely cured.

[Stephenie]

Originally Posted by Lovlkn

I had CBC's all the time and it never showed up so you have to request the ferritin test to know for sure.

Do you have heavy periods? Hers is the strange thing about low ferritin levels - it can actually make your periods heavier thus causing ferritin levels to go even lower or remain low. When I had mine tested due to a friends suggestion based on my symptoms it was 18 (10-120) I took 77elemental mg of iron daily for over a year - which is 1/2 the dose recommended to get the iron stores up and never could get it past 45 - The iron made me extremely constipated and I begged my Gyno to do endometrial ablation to stop my periods and now my ferritin level is in the 80 range taking just 12mg iron daily or less depending on which vitamin I take.

Issues cured from raising the ferritin levels - fatigue, dark circles under eyes, muscle/joint pains, RLS, my insomnia got better but unfortunately is not completely cured.

Okay, I'll get that one specific test then. I'm going tomorrow. As for the heavy periods, yes I get that along with the worst cramps imaginable for the first two days. And I do have dark circles under my eyes and joint pains.

[Andros]

Originally Posted by Stephenie

Okay, I'll get that one specific test then. I'm going tomorrow. As for the heavy periods, yes I get that along with the worst cramps imaginable for the first two days. And I do have dark circles under my eyes and joint pains.

I sure hope you doctor gives you the ferritin test, I really do. Please let us know.

Good luck.

[Stephenie]

Okay just got back from the endo. I didn't even have to get those tests done because, turns out, my last blood test which was lost til now prooves I'm hyperthyroid again. My Tsh was 0.004 whatever that means. Free T4 was 2.38 and T3 was shockingly 8.8H.

Now time for treatments. I am going for a thyroid scan to see how much iodine I need if I do that method.

Obviously I don't want to do medications again because I did not like doing that. With that I can be either hyper or hypo but with Iodine and surgery it's always gonna be hypo if anything.

So my question is, should I do the iodine or the surgery?

I would prefer iodine but I don't like the 7 days with no contact and 'putting plastic in my shower' like the nurse said. How is that gonna work?