Im 35 so about roughly in my early 20s developed dizzys in my sleep. It would wake me. Closed eyes would make it worse. Yrs passed i decided to see a neurologist. Head scans were fine was told it was bppv. Few urs later i developed graves disease.. the torment after i got radio iodine and was put on thyroxine for ever. Keep in mind i have thallesemia traint so iron was and is always low ( eat liver to help it as of late ) in 2015 i had two terryfying bppv episodes once at the salon and the other was as i was laying head down to rest. I developed ptsd absolute terror panic attacks that were crippling and didnt leave the house for 2 yrs as i was afraid of bppv. I saw an ent dissmissed me said it was anxiety. I saw a neurophysiotherapist for 9 months to help my balance and did mant epleys. I some how got to 50 %. I still could shake the anxiety and fear im a highly anxious person with health anxiety but this was real. The came ectopic beats fierce out od no where. Thumps thuds pauses flutters you name it i got it. I was back at 0% i was terrified. I got holters stress test echos all normal but cardiologist said atrial tacycardia runs . I wasnt satisfied i saw an electrophysiologist still do till today she said they are ectopics and to not fear them.but they are pure hell and i cant lead normal life. Mind you i still have the balance o decoded to get more opinions after the 9 mths visits at thr neurophysiotherapist. O saw a neurootologist he said vestibular migraine as did my 1st neuro and prescobed me valium
. I was fed up no one knew mri cat scans clear. But always bppv was coming up. So 2 neuro and physio also saw another ent doc and ge did ecog hearing tests air in ear all was normal ! specialises in vertigo and balance and diet change some how i got ok 2 yrs later. I searched online and found a physio that specializes in the vestibular system. He helped me most and have been seeing him a yr he gives me excersises and performs epleys almost every moths i see him. I sleep because of him but i still get false movements peircing tinnutis but last night after a yr of managable balance it came back. I opened my eyes and i felt of i was on a boat and my head was full of sand like sand in an hrglass side to side. I freaked. 30 min to pass but today tight neck i always have and afraid to sleep. 15 yrs and i seem to just be going down hill. CAN ANYONE HELP ME .15 YRS I CANT DO ANYMORE. ANYONE GOING THROUGH IT
Thankyou all
Ane.
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Contra21
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My suggestion is get two tests done. A saliva cortisol test to see what your adrenal function is like - this tests your levels four times a day.
Then get properly tested for Lyme Disease - the NHS test is useless, but there is advice on private testing here lymediseaseuk.com/2015/11/2.... The Innatoss lab on that list have just brought out a new urine test, but I don't know anything about it.
Cardiac issues were one of my main issues for 35+ years and cardiology was my second home. Turns out the underlying cause had always been Lyme. Be aware that it is rare "just" to have Lyme, folk often have co-infections too. You'd be amazed how many people on this forum have Lyme as the underlying cause for their thyroid issues.
I'm constantly telling Lymies to get their thyroid and adrenal function measured and directing them to this group, and vice versa - telling thyroid people to get tested for Lyme.
Has cortisol checked and was normal. Had it tested twice and did thr saliva morning and night:* also no one takes lyme seriously here in australia.. any help you can offer to heal it
Good suggestions from rosetrees. But, as a first step, I would want to know if I was being treated correctly for my thyroid. I would want the following tests :
TSH
FT4
FT3
vit D
vit B12
folate
To know exactly where I was with that. You know you have low iron, so the rest could also be low. And, low B12 can cause all sorts of problems - or exacerbate them.
B12 i have shots and maintain that. Due for one soon
Vit d is loe but take ostelin all my thyroid is in range as i see a new endo not for thr last yr and get tested every 3. All these tests ive done antibodies and so forth.. just dont know where to go or how to feel better.
Well, I have to say, that just being 'in-range' is often not good enough - not the same as optimal. Do you have the actual numbers?
Now, you're going to think a bit of a nit-picker, here - if not a pain in the butt! But, why are you taking ostelin? It contains a massive amount of calcium and a tiny amount of vit D3 that wouldn't raise levels in a sunburnt gnat! It certainly isn't going to raise your levels if your vit D is low. And, do you really need all that calcium? Have you had it tested? Do you know that excess calcium can adversely affect the heart? Which doesn't really sound like the sort of thing you need at the moment.
Taking excess calcium increases your risks of kidney stones, too.
Would you not be better off taking a larger dose of pure vit D3, which will increase your absorption of calcium from food? And, in order to make sure that calcium goes into the bones and teeth, take some vit K2 - MK7 with it, so that it doesn't build up in the soft tissues, and cause problems.
As for the B12 shots, do you have them often enough? Or does your B12 fall too low in between shots? Are you also taking a B complex? Because the Bs all work together, and need to be kept balanced.
Thankyou.. well my b12 was i think 1200 last time and hasnt dropped.. as for the vitamin d ive only been on it for aboit 4 months as advised being a huge summer baby 2 yrs of this and i havent seen it but trying to sit outside for 15.min a day.. no other bs ..
Well, I think you really ought to rethink your vit D supplement. Who advised you to take that? Sitting outside in the sun for 15 minutes might give you your recommended daily allowence, but it isn't going to help a deficit. And, it's getting on for winter, now, so...
Ah, I see, I didn't know that you lived in Australia. So, it's spring time for you?
Actually, you assume wrong. I have had terrible vertigo - although not so much the irregular heart beats. I thought you were asking about my present symptoms, not the past.
My vertigo was one of the first symptoms that set me on the trail of trying to find out what was wrong with me. GPs just threw tablets at me, for dizziness 'of unknown origin'. No-one was interested in finding out the cause. And, the tablets didn't help in the slightest.
I did the rounds of every single specialist I thought could help, and found generalised indifference. A neurologist told me I also had neuropathy, and was the only one that did any actual tests, and found all my Bs were low, and prescribed B vits. However, she didn't tell me I would need to continue taking them, and testing, and she left the area. So, that was the end of that...
Her 12 year-old replacement, sat and picked his nose, during our appointment, and wouldn't let me get a word in edgeways, so that was the end of that, too!
Things are better now that I'm on T3 only, and have raised my levels of B12, but I still have the odd attack. At the moment, I'm seeing an ENT who thinks my worsening hearing, tinnitus and dizzy spells are all connected. So, we'll see where that leads. I still don't have any definitive answers and I've been chasing a solution to all this for the past 17 years.
I see am endocrinologist every 3 months so thats looked after and levels are now within range. I did am allergy test eggs amd dairy came up thays it that i should avoid.
How do i improve vit d... i took mag before thyroid was settled felt it made it worse.. whats hashi im tolf i have hypo as i had radio iodine... whay should i do to feel better pks help
My ferritin is 30 .. i get sebere wind with eat a banana but in a smotthie i can eat thrm and have one daily sometimes 2 o freeze them. I went on brta blockers 3hen i had gravesbut since my ectopics have reduceda few episodes a month shr says i shouldnt go on them. I dunno anymore
Contra21. I have hashimotos disease. Recently I had terrible ectopic beats and was unable to function because they were so severe and constant. My GP put me on low dose beta blockers for a short time and although they are the antidote to thyroxin, they did the trick immediately. Will also help with your anxiety too. After the short period ( a month) on Beta Blockers I now control the heartbeat with potassium in bananas ( one or two a day) and magnesium supplements, although I note that you have had a problem with magnesium.
As for thyroid the others on this forum are far more experienced than I.
No I don't. I was on beta blockers for about 6 weeks. My dose was 1.25 mcg bisoprolol ( half a tablet twice a day). After a month I lowered the dose to half a tablet a day. The beta blocker worked instantly. After I weaned myself off them I supplemented with 2 tablets of magnesium citrate ( super absorption) 150 mg each tablet and banannas and that kept my heart beats in check.
The beta blockers did not seem to affect the efficacy of my thyroid medication - which was rubbish anyhow. But I did put on a little weight - about 5 lbs. I lost the weight when I stopped taking them, it was worth it as they did the job,
Since then I have changed my thyroid medication from 100 mcg levothyroxin to 60 mcg ERFA ( natural Thyroid hormone) and this has given me my life back 😊.
They stopped my ectopic beats apart from a few small ones when I rested at night. Initially my ectopic beats were about 5 - 10 a minute and so strong it really frightened me. As I mentioned the BB sorted that out instantly.
I agree that can't be right . It was 5 to 10 every 5 mins. I recall counting on my way to the GP in an absolute panic because I felt I just could not stand it anymore and thought that I must be about to expire 😂. I was worn out because it seemed non stop and had been going on for about 3 weeks. At night time it was even worse because it progressed to heart fluttering and really strong palpitations.
Graves disease is an autoimminue disease, destroying the thyroid may have no effect on the Graves antibodies since white blood cells produce the antibodies - the thyroid is the victim - not the cause - an immune system defect is responsible for the symptoms of Graves Disease -
The above comments are quotes from Elaine Moore and Barbara Lougheed - both fellow sufferers who have written books on the subject - I am still on my learning curve with all this information and, sorry, am not in a position to make any comments on your health issues - all I do know is that I am now self medicating with a combination of T3 / T4 and am coming back to the person I was once !.
Graves Disease is for life, it isn't cured by RAI - in fact, having been through this treatment I would not go this way again IF I was given a choice !! Having 1 autoimmune disease is bad enough, after this treatment I ended up with another 2 to contend with, hypothyroidism and thyroid eye disease - bit like a BOGOF with a bonus prize for complete compliance and trust in the so called specialists -
Sorry, Contra 21, having a " rant " - I don't know what the medical options are in Australia, I'm in the UK, - please get your thyroid fully checked out and try to find a doctor with some understanding of autoimmune conditions - I know that's a difficult ask - and try and read all you can to strengthen your understanding of what you need to know to take back some control.
Even if they are negative, you may find gluten free helps. There are others on here with negative antibodies who havecstill found benefit from gluten free
But after RAI you may well need small addition of T3 once vitamins are good
I really feel for you Ane, I do know there is real hope. I haven't had exactly the same thing, but severe depression, ptsd, thyroid problems, anxiousness, I understand. It is a horrible situation for you. Disrupted sleeping makes things even worse because your body isn't getting healing time. Your mind gets stressed, your gut gets affected, and more.
I have a friend whose brother had Menieres disease (like Bppv?) and a supplement he uses cleared it up immediately. He is a lorry driver in the USA, and it saved his job .Message me and I will find out about it and pass it on to you.
Over the last 20 years, (I was a little older than you when it all came to a head for me) I have gradually got better by taking great supplements and drinking more water, as well as cutting down on toxins I put into my body via shampoo etc (I use a lovely shampoo/shower gel from Sisel but it has no sodium lauryl sulphate etc which damages us). It all makes a difference. Step by step.
I have not found that following doctors on my issues has helped. I am happy to have blood tests etc, but then I always follow a nutrient route, and so far I have worked even quite serious things out without drugs. Drugs always have side effects. I always wanted to heal rather than temporarily fix a problem. I feel healthier each year, step by step- right now, better than ever.
Your body has been under extreme stress which uses up all your stored nutrients, and when we feel like that we do not always help ourselves.( I really get that!) The body shouts out for real nutrition it can use for repair. We have to replace them. Enough for each day, plus building up the deficit.
It is important to take action now. I think you could be very pleased at how quickly you can move forward. So good you are asking for help.
There are lots of things that can help. Something with NAD has just come out and is the most powerful thing yet. What I am suggesting is a simple way to start.
Trace minerals, Vit D, iodine , antioxidants are all things that get mentioned here a lot. All part of it too. as is juicing. Feel free to message me if you want to know more.
Other sources for learning you might get hope from include people like Mercola.com, Andrew Saul, and a very hopeful short documentary by Jason Vale 'Super juice me!' 9 people at the end of their tether, all feeling much better in a month. All on YouTube.
Belatedly seen you are in Australia. can you get to see one of these talks. If so say hello from me Linda F. (Bristol, Uk) to Phillip! youtube.com/watch?v=wf788fX...
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Advice Please
Help please, Im sure Im hypo but results normal going to take Raw Thyroid
Crazy Underactive Thyroid, Maxed out on Meds
It's all in my head, apparently.
