That's fantastic news toby! Congratulations! Since I keep being told that there's no reason to worry about my ferritin levels, maybe you could get the following answers from your hemo and report back?
1. Did you have iron overload and does he believe that that was the cause of your problems? Or was it simply the high ferritin level itself?
2. Does ferritin need to be brought down even if one does not have hemochromatosis and if a blood iron panel does not show iron overload (e.g., %saturation is normal)?
Thanks for continuing to follow up with us even after being cured.
Wow, what wonderful news, toby! Will be waiting to hear what your doctor has to say about b1218's questions.
I just looked up by lab tests in 1995 and my ferritin at that time came in high at 186 ng/mL. Normal was given as 10-170. My iron was 62 ug/dL with normal listed as 55-170. Interesting my TSH at that time was listed as normal at 3.44 mU/. Today the alternative doctors are saying any TSH reading above 2.00, especially if there are symptoms of a thyroid problem, should be treated.
What a miracle. I will be participating in our regular blood donation program this coming Friday. Thanks for sharing.
Note that the author talks about "shaking inside." Many of the symptoms she describes also describe me: heart palpitations (milder than what the author describes), red face, eating a lot, fatigue, feeling a bit hyperactive, and of course the sleep issues. I can't help thinking that my sudden drop in TSH (although still in the normal range) and somewhat higher than normal Free T3 have something to do with all of this. Maybe taking the empirical approach and treating me with anti-thyroid meds is the way to go. Now if I can only find a doc who will listen...
A very good article, indeed. I also have a neighbor that is dealing with hyperthyroidism. It is a huge problem trying to find a doctor that is up with all the latest treatments. I did find an endo that will prescribe natural thyroid meds, but he doesn't follow any of the alternative advice. That is why I am sure I will have to request the tests that are recommended by the alternative doctors.
One thing you might try is contacting a compounding pharmacy in your area and ask them for a list of doctors that prescribe compounded thyroid meds. Any doctor using compounding thyroid meds should be more willing to work with the patient, I would think.
I switched this week from my Synthroid to Armour, which is a natural med, but I may be allergic to the corn starch filler. Not having particularly good results, yet. May have to switch back to the Synthroid.
I will donate blood this Friday, but may have to donate more before any change might be noticed.
No, but I am thinking it might be elevated again like it was in 1995. I will only donate this once until in Jun when I will be able to get my ferritin done along with other tests without it costing me .
It has been awhile since I have donated blood and according to the 1995 Reader's Digest article, donating occasionally each year is supposed to help ward off heart disease.
Excess iron deposits, according to Dr. Brownstein, have been discovered on patient's thyroid glands. I am not expecting any results from just donating once if I do indeed have high ferritin levels.
Another friend that has low thyroid was thought to have hemochromatosis, but then decided not. I need to ask her if it was just because she didn't maybe carry the gene. I don't think she ever donated blood and is still not doing well on her meds.
Have you thought about doing a hair analysis? Thyroid problems can often be linked to heavy metal toxicity. As I mentioned earlier, I have some cadmium toxicity and am on a nutritional balancing program to detox the cadmium and balance all my mineral levels. Will do a follow up hair analysis in May after being on the supplements and diet for 4 months.Will make whatever adjustments need to be made at that time. I am going to be dealing with this cadmium for years, I am sure.
Hopefully, you won't have any problem getting a list of doctors from the compounding pharmacy. I was able to get mine sent to me by fax right away.
I am still very excited to know about Toby's results and hopefully, you and the rest of us can all be as fortunate.
I had iron overload and now have norm %sats 33 I believe. My Ferritin is still high at 735 so i am sched for four more pints once every other week.
He said that iron overload can cause issues with any of you body organs or systems like nerves or thyroid. He did not think Ferritin itself would be a big issue. I could tell he did not know for sure. He said ferritin can go into thousands on some people without symptoms.
Go to Mayo Clinic, you are wasting your valuable time and health. It was worth every penny.
Thanks for the answers Toby. Speaking of it being worth every penny, did you have to pay for this out of pocket or did your insurance cover all or most of it?
For me, I'm convinced that I have something like central sleep apnea. The last few nights have made that even more apparent. And I still believe that the vibrations themselves can have multiple causes.
I swore i had central apnea as well. I bought an o2 sat and heart rate recorder. My o2 drops at night, but drs looked at chart and said it is not that low. Low o2 seemed to correlate with vibrations. Very confusing. Insurance covered most of Mayo. Their rates are no different than the others.
Thanks again Toby. I think one of the differences between your symptoms and mine (correct me if I'm wrong), is that when I wake up with the vibrations, I seem to be having a momentary anxiety attack which makes it feel even more like I wasn't breathing (or stopping breathing results in some anxiety). It passes quickly although it makes the wakenings even more distressing. And sometimes I'm almost aware of having gasped slightly just before I become conscious. Depending on how deeply you sleep, it might not take much of a cessation in breathing to wake you up and so your 02 wouldn't drop that much.
The problem is, I'm almost always in the middle of a dream when this happens. So I think this almost always occurs during REM sleep which is another reason I think it's central sleep apnea. Of course, the anxiety and the fact that I'm dreaming also leads some of my doctors to believe that it's "just anxiety."
When I was using my own pulse-oximeter, it was around 95 with drops to 91. And the drops didn't always correspond with my waking times. But again, CSA doesn't always result in significant 02 drops. Half the time, I feel like my problems are breathing-related and half the time not. I mean, any kind of anxiety reaction can make you feel like you were having trouble breathing.
What a bummer. Really, I was so hoping we were onto something. I am still planning on having my ferritin checked on 6 Jun. Because you managed to get some relief, I am still wondering if there isn't a connection between your thyroid and iron.
Still having issues. Cant help thinking this is not a blood flow issue. My heart rate drops to mid to upper forties in the middle of the night. Always about the same time my issue starts. The cardio said i am just healthy. I am mid forty n sit behind desk pushing 250. Not sure of his reasoning behind that. I guess i will head down that avenue. Getting discouraged. Vibrations now are radiating to hands. I seen that in earlier blogs.
I'm sorry to hear that toby. You must be very frustrated. I'm still having the vibrations. I decided to go ahead with being treated for Lyme even though my Lyme tests were just slightly positive. The antibiotics are doing a number on me which is not helping my sleep any. I've also seen another sleep neurologist to get a second opinion since I don't agree with the first one's conclusions. He is going to have me do an at-home sleep study first to test for sleep apnea and then we'll take it from there. My thyroid numbers completely turned around in my last tests to being on the low side of normal so I'm not sure what's going on there. I'll be getting another at least another TSH level done at my yearly physical in July. So unfortunately, I don't have anything new to report on the vibrations.
My vibrations are very mild now. I honestly think they began subsiding the minute I went on the anti-yeast diet...no sugar, fermented foods and very few carbs.
My diet is protein, sardines, very little fruit, but lots of steamed vegetables. Not the most exciting meals, but at least I am sleeping. As I mentioned before, I am on 100 mg Fluconozole for another year which is an anti-yeast medication. This particular doctor is the only one in this area that is knowledgeable on how to treat chronic yeast in the digestive tract. I do not have any other symptoms for yeast. Didn't even know I had it in my digestive tract.
-b are you taking some kind of probiotics while you are on such strong antibiotics for Lymes?
I have been periodically checking night O2 and heart rate for the past year. As my symptoms increase over time i am noticing my heart rate is getting lower after about 4 hours of sleep. I started at 52 bpm and now hitting 43 bpm when i am experiencing vibrations. Seems like i need to run this to ground. May still tie to lyme or thyroid as both cause bradycardia.
Thanks for the update toby. You know that you'll need to find a "Lyme Literate MD" to really be tested and/or treated for Lyme right? What part of the country do you live in?
I had an endoscopy yesterday because I was having some reflux issues and my voice was getting hoarse. Everything was normal except that they found that I had a "minor" hiatal hernia. Don't know if that could have anything to do with the vibrations (I didn't even bother asking the gastroenterologist), but just reporting it for the record. They really don't do anything to treat small hiatal hernias except to treat any symptoms such as reflux with acid blockers.
Interesting about your acid reflux. I, too, went in last year for the same reason...my voice was getting hoarse. Apparently, I have slient reflux since I have never experienced any heartburn ever. No hiatal hernia, however. I try to keep myself propped up at night with an extra pillow.This all happened before they diagnosed my thyroid problem. don't want to take acid reducers unless it becomes absolutely necessary. I am doing better with not being as hoarse.
Speaking of thyroid...the endo reduced my synthroid from 100 mcg to 88 mcg daily. I talked him into switching me on to Armour, which he did, at 60 mg. I am supposed to try this for a couple of months and then come back in for testing. I wanted Naturethyroid, but because he wasn't familiar with it, he would not try it.
How are you doing with your treatment for Lyme's? Hope Toby is surviving. It is interesting to me that all my troubles with this nerve vibration stared after I got a tick bite back in July 2011.
The saga continues. Long story short, I saw a neuro Fri. She is positive my issue is my gas exchange is too low while sleeping. I had a CO2 blood test and MRI on brain. She said that when i am getting into REM sleep my breathing is too shallow trapping CO2 in portions of my lungs.
I am so exhausted trying to figure this out. But, try this. When you have tremors stay relaxed for a while and see if they are constant. If you do nothing else but take deeper breaths, you will notice the symptom goes away. This may be why people are having the same issue with different problems. Lyme will slow your stuff.
I am an Engineer, i fix things thats what i do. I will find the answer. Possibly getting close. Try a cpl deep breaths and see if symptom goes away for a little while. Hmmmm.
That's a good theory. Is your neuros opinion based on the results of your CO2 blood test and MRI? What did they show?
Deep breathing is one of the things I do to make the vibrations go away. Then they come right back again when I drift off. But that also reinforces my GP's opinion that this is anxiety-related (which I don't believe). Did the neuro have any suggestions? Would adding O2 to your CPAP help this?
I'm also and engineer and I'm trying to be very analytical about this. Drives my GP crazy, but too bad. I'm seeing the 2nd sleep neurologist at the beginning of August and I'll tell him what your neuro said.
OK, MRI clear. CO2 came back normal but CO2 is quickly changing. Test was a waste of time as it wasnt taken when I had problem. Neuro wants to consult with sleep neuro on trying a Bipap machine. The funny part is it only takes a couple deep breaths to clear the issue. It is not anxiety when we are sleeping. Haha. They just dont get it. We were anxious months ago but not any more. We are getting close. I have some new blood test tomorrow to rule something else out. Not sure what it is. I know this is CO2. Hypoventalation i think she is thinking. I need to research.
So are you using a straight CPAP right now with constant pressure? That's what I was using for a while, but it does nothing for me now. The 2nd sleep neuro that I'm seeing seemed surprised as if that was antiquated technology. Maybe it is since I was prescribed it 6 years ago. Some more advanced CPAP machines today can actually record various events you might be having during sleep.
As for the CO2, various blood tests that I've had recently show blood CO2 slightly to the high side, but not outside the normal range. But you're right, I'm not sure how diagnostic that is since the measurement isn't taken during sleep. I'm surprised no one is suggesting that you do a second sleep study where your O2 and CO2 levels could be measured more effectively.
One question I have though. Had this new neuro you're seeing ever heard of these kinds of vibrations? Or is she just assuming from other symptoms you've described that it's hypoventilation?
I still haven't gotten the results of my home sleep study yet. Very frustrating...
Sad to say my new neuro hasn't seen exact symptoms but simular. I do have a newer cpap. It will increase pressure if it detects breathing stoppage. It records events.
I feel another sleep study coming, but have never slepped more than a cpl hours and study is a fail. I need to hit deep sleep. I had a blood draw today. I do not recall the name. It is to detect some issue with lung muscle.
I have been dropping some pounds to decrease fat around my lungs. I do have a beer gut. I have been trying to take as little amatriptalyne as tolerable. I think it helps with sensations but makes problem worse. I cant go off of it completely.
I should be back at it on Monday. I have an Alaskan fishing trip comin up mid August. Hope to have an answer by then.
Thanks for the update. The neuro I saw that was familiar with this symptom immediately said that it was anxiety. His solution is anti-anxiety meds like Klonopin. Benzodiazapines are also respiratory depressants. No thanks. Sigh...
One question about your symptoms, do you get the vibrations only when you wake from deep sleep? That's when they happen to me, but I also sometimes feel the vibrations just as I'm about to drift off.
I also think that amitryptilene helps with the symptoms for some reason. But I typically feel like crap the next day. I've been off of it for a while and my symptoms haven't changed appreciably.
It started with strange dizzy feeling once in a while. Then progressed to a little electrical sensation down my neck. Then more severe tremors. I take just 2.5 to 5 mg a night. Dry mouth sux. It just takes off the edge. If I have a real bad night it seems like I am shakey (shaky) during the day. Jitters
I am curious about your home study. Did you sleep and have symptoms?
I'm not sure I have the electrical sensation in my neck, but I definitely have the tremors which vary in severity. I take 10mg of Ami every now and then. I don't seem to suffer from dry mouth, but I feel pretty weak the next day. I also feel jittery/anxious the next day when I have a particularly bad night.
The home study thing is really pissing me off. I think I mentioned that there was a problem with the recording unit. When I woke up that morning, it was powered off. Maybe I leaned on the power button in my sleep or maybe it malfunctioned. I called the sleep center and they said the best thing to do was to turn it in so they could download the data and determine whether enough was recorded. If not, I could do the test again. I've now called them twice and haven't found out the results yet. The last time I called, they said it could take 2 weeks to get the results. 2 weeks was up this past Friday so I guess I'll call again on Monday and then call the sleep neuro if I get no joy. But to answer your question, yes I slept and I did have the symptoms. I haven't had a night without the symptoms in quite some time.
One more question. When you get the vibrations, do you feel like you're having any GI problems? Rumbling in your stomach or anything like that?
I still cant keep wondering if it is not Bradycardia. What is your heart rate while sleeping? When monitor is on and I take a deep breath my rate goes up to 70 from low 50's. It only takes a little while and it is bac in lo 50's. Where are you located?
I'm not sure what my heart rate is lately. For a while it was definitely on the lowish side. mid 50s while lying down. I'll do a another couple of nights with my pulse oximeter and let you know the results. I'm in Chelmsford, Mass. About 40 minutes northwest of Boston.
Funny my pulse ox is usually 98-95 during the day. I wonder what the dif is. I am wearing halter mon tonight to get that out of the way. I was sure hoping to get somewhere before trip to Alaska in August. Not looking promissing.
I'm still with you both, hoping you are going to be able to figure this thing out before much longer.
Just reporting my MRI showed a slightly bulged disc in by neck between C5 & 6. Not sure that has anything to do with anything, but will be meeting with the Neuro dr. on 15 Jul to discuss it. When you had your MRI done, did you have it done on your neck or your brain?
Still trying out the new dosage for my thyroid medicine, keeping my fingers crossed it will keep me from losing any more hair.
Yes, my vibrations will cease when I take a couple of deep breaths. I am not on a CPAP and as far as I know I believe I have sleep apnea.
Well... Halter monitor. Bradycardia, but does not seem to be a problem. Heart slow at night but dont think it would cause my symptoms. WTF
blood test for some muscle disorder normal. Lyme test tomorrow.
Cardio called and said he would like me to go to a pulmonologist next. He said heart rate of 40 when sleeping is not that uncommon. That will probably be the last stop. I have been to everyone else twice.
-b any word on your sleep study?
ieagan my MRI was on brain stem and brain. I have an air bubble that is a normal thing from birth. Everything else is normal.
Met with my Neurologist yesterday concerning my MRI...she seems to think the bulge in the disc in my neck could definitely be causing the tremors or vibrations depending on how much it is pressing on the spinal column or nerves.
Have either of you had your necks examined, either x-ray or MRI?
I will be calling a Physical Therapist she has recommended and she is requesting they set me up with a home neck traction device. Will keep you posted.
I have had xray only. I have some arthritis in my neck. That would be cool if that turns out to be the issue. I have doubts as if i do not move the vibrations stay. If i take a big breath they go away.
I had pulm func test and they found some minor issues 8 months ago. They were not concerned at the time. I think we are getting to the bottom soon. Glad we are working in parallel.
I, too, have my doubts, but it may take trying to fix everything else before we find the actual problem. An MRI would definitely give a more complete picture especially if there is a bulging disc problem.
I am doing some neck exercises for now until I can get in to see the Physical Therapist. And making sure my pillow doesn't push my neck too far forward when sleeping. In the past, I tried to prop myself up to help prevent any acid reflux and may have compounded the neck problem since I have a tendency to slide back down while sleeping.
My vibrations will also stop if I just lightly touch my neck. Not sure what that is supposed to mean.
Will be anxiously waiting to find out the results on your pulmonary test.
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