I'm having vertigo again! It's been 3 years on and off, I saw a Hear throat nose doctor, I saw a neurologist, nobody could tell me why every now and then I would experience vertigo that can last days, and the feeling I'm experiencing is like walking on pillows. I do not know what to do!
2 months ago you were getting FULL thyroid and vitamin testing
healthunlocked.com/thyroidu...
What were results and ranges
What vitamin supplements are you currently taking
TSH= 0,40-4,50 mIU/L
FREE T4=0,8-1,8
B12=200-1,100 pg/ml
VIT.D=30-100 ng/ml
Ok, here we go:
B12= 935
Vit D=30 ng/ml
TSH= 2.66
FreeT4=1.2
What vitamin supplements are you currently taking
You need TSH, Ft4 and Ft3 tested together
Ask GP to test folate and ferritin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Yes I had to pressure the doctor to do vitamins and T4.
I need to find the ferritin result.
I'm taking
1000 mcg B-12
50 mcg (2000 IU) D3
Vitamin D ....improving to around 40ng/ml may be better
Are you supplementing magnesium and vitamin K2 mk7
I bought magnesium 400 mg, but I didn't start taking it, and K2 is the first time I heard of it.
Links about magnesium and vitamin K2 Mk7 supplements when taking vitamin D
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
I am grateful for your support and the forum. I live in USA, and it's hard to find a doctor that understand!
I keep going to the GP, and there is always somebody different, they don't understand what people with hashimoto have to go through when there is an episode or flare.
I eat healthy, I walk or bike, all in moderation, it feels that almost every other day there is something wrong, strange pain vertigo etc.
Sometime, it feels lonely, because I can't talk about it with anyone, because they wouldn't' get it, so again Slow Dragon thank you!🌹
This is what happens when you don’t have continuity of care your health gets out of control.
Hi
I had vertigo..for 3 years on and off-- by chance when i had a hearing test i was diagnosed with menieres--- it is an auyoimmune illness. Having hashimotos makes you more likely to have several moe autoimmune conditions-- may be worth checking out
Hi Frenchee,
Sorry to hear about your struggle with vertigo.
Few years ago I had vertigo for few weeks after strenuous exercise. Can have many causes, but in my case I am convinced that mine was because I had no enough cortisol to deal with the stress caused by the hard training.
Took few years and lots of unspecific other symptoms but later I was diagnosed with Addisons Disease.
I am not saying that you have Addisons but worth considering if you are exposed to chronic stress that can result in reducing the ability of your adrenal glands to meet the demand.
Worth checking your cortisol levels when you develop vertigo, and I recommend the Epley Manouvre (was helping in my case) . You can find more information about this on internet and there are videos on YouTube.
I hope you get better.
Hoyne
That’s very interesting.... I’ve had two episodes of Vertigo (diagnosed as BPPV).... both times happened during times of stress (one when a friend was killed in an accident and more recently during a very stressful time at work). The Epley manoeuvre actually made my symptoms worse (maybe I wasn’t doing it correctly) so I abandoned it after about a week. The symptoms went after 10/14 days. I’ve always been told it’s associated with the crystals in the inner ear being out of balance/timing. I wonder if it’s associated with thyroid as I also have low level but constant tinnitus.
I too have had episodes of vertigo [along with tinnitus and partial temp hearing loss in an ear at a time] sometimes when stressed [so the cortisol issue would make sense] but other times when not - can come out of nowhere and very debilitating when they happen - can last up to a week at a time. Odd thing - but good thing - haven't had any vertigo since starting T3
Ohhhh. I have exactly the same BPPV...eply helped and it comes and goes.
The Eply makes the vertigo worse for a few seconds but if you stay in position it subsides and each subsequent time it takes longer for the vertigo to start until when you get in position the vertigo doesnt come. That's when you know its over. But it does come back at varying times.
I always wondered if it was related to Hashimotos. I have pulsitle tinnitus but hearing is normal.
Low Vitamin D and low B12 may contribute to BPPV?
I often thought levothyroxine caused it (not sure) so I switched to NDT an couple weeks ago.
Vestibular rehab may help. Its alot of exercises with head movements. Utube has alot on these exercises.
I'm a hot mess with vertigo and Docs dont put it together but I think it's definitely related.
God luck🧿
I did all the ear test and everything is good. I am currently seeing a chiropractic. I bought a spray vit.D and take 4000 IU a day.
The doctor lower my levotiroxine from 137 mcg to 125 mcg. I will have to see what works.😊
I agree it's worth checking Hantal
PA/B12 Deficiency and Hypothyroidism runs through our family and experience has shown that you have to do your own research to stay well.
After attending hospital in early May this year with suspected Addison's Disease, I've been trying to find more information on it and finally found what I needed to know on my bookshelf!
B12 deficiency expert, Dr J Chandy's book, "Vitamin B12 Deficiency in Clinical Practice", has a whole chapter (37 very informative pages) on hypoadrenalism (Addison's Disease) and seems to be alone in making the connection with other autoimmune diseases, (particularly thyroid and PA/B12 deficiency)......
Surprise, surprise - it's often overlooked and not treated.
Agree...and many addisonians are deficient in B12 and Vitamin D. Also coeliac disease and hypothyroidism are present for many.
for anyone else interested they can read it on this site
Thanks for this link Redlester
What an amazingly caring and genuine doctor, who has devoted his whole life to helping his patients !
The information on Addison's is chapter 7.
An interesting snippet - JFK had thyroid disease, Addison's and was given B12 injections.
Thanks Polaris - I'll check out chapter 7 - but the whole book looks good. Yes- JFK was perhaps the most famous Addison's sufferer and seemed to be very debilitated by it at times from what we are led to believe. Can I ask you, if you don't mind, whether when you attended hospital with suspected AD whether they got to the bottom of it or what did they come up with by way of a diagnosis?
Ah - a v. good question Redlester ! After reading replies here, I screwed up courage to ring surgery to ask whether cortisol test had been done, and for a print out of blood test results.
A pleasant GP rang back, who told me blood tests were fine but I discovered hospital notes were very sparse - only mentioning back injury and vomiting (said to be caused by the homeopathic arnica I'd taken for agonising back injury 😳🤦♀️) - no mention at all of other symptoms described and no cortisol test done, even though 111 doctor and GP both suspected Addison's 🤔.
I'm really quite shocked at the appalling state of medical diagnosis and communication generally but managed to keep calm and fairly lucid even though afterwards I felt very shaky again.......then realised, after being offered a telephone appointment for next week that I'd forgotten to repeat my request for a copy of the blood tests🤦♀️
PS. Forgot to add that I was given three consecutive days of rehydration at the time.
Firstly, I would be very surprised if it was the homeopathic arnica which would have caused the vomiting - unless it was doctored with something, which if purchased from a reputable supplier would be highly unlikely. I have used arnica myself for years with fantastic results, without ever having that experience with it. And as for the back injury, did it come on by itself or did you have a fall or something because low back pain and vomiting/nausea would be 2 hall-mark addison's symptoms [I'm not a doctor, just what I have read]. So, if I have the gist of it correct, are you saying they suspected AD but didn't follow it up, and you still don't know whether you have it or not???? hopefully telephone appointment will go well and will give you an opportunity to get them to resolve this one way or another, because you can't leave something like that hanging - I'd be interested to know how it goes. Good luck!
Yes, AD was suspected but no cortisol test done and no follow up.
I'd injured/twisted upper back muscle exercising to music about two days before, in great pain and already stressed - (since read that AD can come on after trauma/injury/stress)
I've also used arnica, rhus tox, and other homeopathic remedies for many years with amazing results, but hospital doctor was too busy rolling her eyes at this, NDT and self injection of B12 to listen, and declared it poisonous 😅 !
Hopefully, this was a one off attack but, having read up on symptoms, (terrible nausea and thirst, dizziness, etc) connection with other autoimmune conditions) and knowing it can be life threatening, I agree it can't be left ..........
Thank you so much for your concern Redlester and I'll let you know how it goes with GP tomorrow.
Yes, Polaris, I looked at your profile after I posted this yesterday and saw that you had done yourself an injury, so to that extent you could rule that out as a possible symptom, but the nausea/vomiting would tend towards AD - can I ask can you have a one-off attack? I thought that if you had it, you had it and needed to have it treated. Cannot believe the attitude of the hosp doc towards the arnica and rhus tox , but then if it doesn't come from their pharmaopoeia bible with a long list of side effects then it doesn't count does it??? [LOL] I also saw on your profile that you were self injecting B12 - I didn't even know that was a thing! Well done you for sourcing that and doing it yourself - I have one quick question though, does it hurt to do it??? Make a note of all the points you want to raise with GP tomorrow before phone call and let me know whether you get anywhere. Fingers crossed!
I suppose it's maybe wishful thinking re. one off attack! I really don't know Redlester. I read that, anyone diagnosed can expect to have more episodes, so should wear a medical bracelet and keep emergency medication - all a bit scary.
It's thought to be a rare disease but so is Pernicious Anaemia - possibly because under diagnosed by clinicians ? Apparently both are more common than previously thought and both linked and researched by Addison !
I suppose I'm not really surprised at the attitude and ignorance towards homeopathy - anyone mentioning this or any alternative medicine on PA forum was subject to intolerance by some of the conventionally trained.
Thank you - will keep you posted.
Hope this makes sense - a bit tired 😴
Hi Redlester
Sorry, I forgot to answer question, 'does,it hurt? I don't find it painful but granddaughter and some others do 🙁 Best to warm ampule and stretch skin between two fingers........
.............
Feeling rather desperate at this moment with steam coming out of ears after telephone conversation with GP . She was v. reluctant to do cortisol test as not in hospital notes (even though she and 111 doctor suspected it 🤔. She ignored all my attempts to explain why, preferring to lecture me on my suppressed TSH years ago, warning me of heart problems (which actually disappeared after sufficient thyroid medication)and BP, which is fine (white coat syndrome). She would not consider the autoimmune connection in Dr Chandy's book re. B12 and Addison's adding that, as B12def/PA wasn't down on my notes, it could not be considered after I read out to her , "Addison noticed that the adrenal glands were damaged in all 11 cases of Pernicious Anaemia on which autopsies were performed " !!!
Finally agreed to test after I politely said,no problem, I'd arrange my own. She then wanted to add thyroid test, BP and B12, again, ignoring me when I told B12 wasn't necessary as I'm self injecting and abruptly put the phone down.....
I'm feeling very shaky, inclined to cancel tests, change surgery or just go it alone.......
Is it possible to go it alone on something like this??
I can fully understand you feeling frustrated by this response, but I reckon I can tell you what happened - you probably triggered 2 things in her - possibly even 3 1. the 'aha' moment was coming from the patient not the doctor - ie you hit on precisely what might be wrong when she had failed to do so - ergo she failed - blow to the ego 2. if the idea comes from a doctor it is a thing if it comes from a patient it is not a thing - I have encountered this more times than I care to remember and 3. you were bringing up something that she probably doesn't completely understand and her ego wouldn't permit her to acknowledge that Chandy has a valid point - no wonder she wanted to stay on ground she was sure of to try to assert her authority - if only they were prepared to acknowledge that our bodies are just that, ours, and work more collaboratively. Makes you wonder how many of us conveniently dumped into the old CFS dustbin might actually have a B12/adrenal problem which with appropriate treatment might give us back some quality of life [if not an actual cure]. Why don't you let her do the tests she wants to do, but at the same time try to do your own tests for cortisol - salivary cortisol is much more accurate anyway than what the NHs would do by way of a test - and then present her with your test results plus a photocopy of the corresponding diagnostic pages from Chandy's book - all in writing. I don't know if you'd need and ACTH syntachen test [not sure I spelt that correctly] to confirm AD and not sure if you can DIY that - but you could put a feeler out on the forum to see if anyone else can advise on that.
Don't do anything rash - sit on it for a bit. But it looks like, as with everything else, you might have to DIY it. Keep your chin up - you will find a way through this.
Bless you Redlester for your excellent advice 💐 I'm still in shock at GP's attitude but have just drafted a polite letter to the practice manager (won't send though until calmer but it actually helps to write it out and I'll revise later ).
I'm not sure I want to have another frustrating conversation with this GP, who is obviously following the 'party line' and I don't think I can stand hearing all the same old about thyroid, BP or B12 results again - like talking to a robot. Too stressful 🤦♀️ I really feel it would be disastrous to put myself in their hands again. Will think about changing surgery as have heard of others having problems.
In fact, it was finally taking charge of my own health, asking for thyroid test years ago, eventually self treating with NDT and then B12 injections, that has finally given me more peace and recovery from first heart, then various serious neurological problems these illnesses caused!
Lot of thanks again for advice and listening Redlester.
Re CFS - Martyn Hooper on the PAS site writes about this.
My younger sister (vegetarian) was misdiagnosed with ME/CFS for years (at one time in a wheelchair, unable to walk). No information then about how important it was to supplement with B12.
Dr Terry Wahl (also vegetarian) became ill with v. serious neuro symptoms and now writes about how changing to her particular organic meat diet brought back her health.
Finding it hard to find words - stress brings the aphasia back!
I can completely empathise Polaris - am in the same boat - was dustbinned with "CFS" 20 years ago and told everything was "normal" and it was only when I joined here that I began to realise how, sorry, no other word for it, incompetent they are with regard to key things which might underlie "CFS" like B12, thyroid, adrenals etc etc etc and how woeful the NHS testing regimen is. So I too have been forced into the DIY boat, and while not 'recovered' or anything close, I was at the start of this year getting so much worse that if I hadn't self-treated I dread to think where I would be by this stage - I likely would have gone down with covid for certain. So yes, I can fully understand how self treating has been what made improvements for you in the things like heart etc that they'd have been happy to give you a bag of pills for which would only have caused miserable side effects.
Good for you for drafting a letter to the practice manager and wise woman to let the dust settle a bit before sending it. I think GP was being defensive because you probably hit a nerve seeming to know more than she did about these issues, and you probably do, and she has to be the "expert" because it is all about authority. Nightmare to change GP but try as far as possible to get reviews from other patients in your situation. I changed GPs a couple of years ago, principally because my then GP was too far away to get to, and my new surgery was seemingly well recommended. And then sadly you have a couple of appointments and realise that you are no better off - one of the GPs is just nasty, one constantly tells people to eat red onions and tubers as the cure-all for everything [don't get me started] and the one that is any good only works 2 days a week. I have sadly come to the conclusion that they are all fairly rubbish and we wonder why we are such a sick nation?
Is there anyone you could go to see privately?
Re the hurting - nggrrhhhh - not sure I could bring myself to do that. I'm currently on oral B12 which I'm not sure is doing enough but don't think I could self inject - on the other hand if it would give me some quality of life...well, I'd have to then wouldn't I?
It is quite daunting at first but (helped by Hillwoman here) it soon became effortless and less,of a chore than cleaning teeth 😁. Although it's no quick fix, the eventual elimination of terrible fatigue, tinnitus, migraine, regaining of memory, words, balance, better hearing, etc was most definitely worth it.
There is excellent information on Tracey Witty's B12def. website, as well as videos, one of which tells how two of Dr Chandy's patients' hair grew back after receiving B12 injections...........
Dear God Polaris you are describing me in those symptoms - I have all of those. Thanks for the website link - I will definitely check that out!!! My last medichecks test for Vitamin B12 - (Active) was 65.800 pmol/L (Range: 37.5 - 188) which I'm not sure anyone commented on, and yet I have all of those symptoms (and then some!) Maybe oral B12 isn't doing enough for me - must do another Medichecks test to see if there is any change, but then because I am on oral B12 I won't get an accurate reading will I?
Food allergies was my cause of vertigo. When I did the elimination diet it stopped. Worth a try!
You probably have some sort of inner ear disorder. Have you tried a neuro-tologist who specialise in balance disorders ? Vertigo is normally caused by a mismatch of signals from inner ear to eyes.
Hi Frenchee
Have a look at this Dr Mercola article
articles.mercola.com/sites/...
My previous (young - surgery didn't know about the manoeuvre) GP did the neck manipulation and it worked immediately. The current GP (old) gave me some of the exercises to do and they work too. Will cut the amount of time you suffer. Treatment success may depend on root cause.
Good luck
PDS1
If your thyroid medication hasn't rectified your vertigo, it might be the crystals in your ears. You will need a simple technique performing on you, which you can then redo at home if/when it comes back. It sounds weird but when the crystals in our ears get in the wrong places it causes.
I had to redo my own crystals a couple of days ago. Try lying down on your bed on your RHS and slowly turn your body over until you are facing the other direction. At some point you will feel the vertigo, just let it pass and continue to the other side.
I hope this helps. 😊
Hello Frenchee! (I'm a Frenchee in the UK btw!). Have you explored the possibility of BPPV? I've got this and this is how mine started: a vague feeling of being dizzy, then it went into full blown BPPV attacks, from which I've been suffering for over 10 yrs now. I went to the ENT just yesterday so he could do the Eppley manoeuvre which relocates the crystals in your inner ear to the right place. Let me know what you think.
Hello, get vertigo too, it comes and goes, sometimes for a couple of days and sometimes for longer. GP no particular help - although he did let me have a prescription for prochlorperazine (stemtil), which I take only if I get desperate ( I also have tinnitus, which again comes and goes in phases, sometimes quite loud others not) I have been unable to associate it with anything in particular. I had it first in my thirties, long before I had diagnoses of CFS, Hypo, PA. You don’t need to feel so alone there are wonderful people on this forum who as always willing to listen and help. Take care.
I had vertigo..for 3 years on and off-- by chance when i had a hearing test i was diagnosed with menieres--- it is an auyoimmune illness. Having hashimotos makes you more likely to have several moe autoimmune conditions-- may be worth checking
Someone above mentioned the Epley maneuver. I got dx'd with BPPV by an ENT a while back. She thought it'd go away eventually - but I hated the spinning sensation, so tried the Epley off YouTube as best I could. Not sure whether it put those crystals back in place or what - but thankfully knock wood it has not happened since. You might look into it.
After a couple of brief episodes of vertigo and dizziness, I had my hearing checked. Actually needed aid in one ear. That and starting both Vitamin D and B12 helped. both were low. This was while in Australia. Now in NC, where Hashi was discovered and tx begun.
I really want to thank you all for your support!
I have been checked 2 years ago by ear specialist, and there was nothing wrong, I saw a neurologist and everything was ok.
I'm going to read about Addison and many other good advice you all gave me.
I' m really glad to be part of this family, and I will keep you posted.
Thank you💗
Hi, one of my main symptoms is dizziness and has plagued me since 2016, diagnosed with hypo 2017 thought great this will sort me out! But no 4 years later, many ENT tests for vertigo, BPPV, menieres etc... eply manoeuvre, medication betahistine, cinarazine and still feeling dizzy! BUT been working on my B12 & ferritin both we’re low but not low enough for the doctor to acknowledge so have been supplementing B12 and eating iron rich foods (Advice on here) for last few months and have definitely seen an improvement, still dizzy but getting better by the month! Hang in there, take the advice given and I’m sure you will see improvements, just remember you are not alone we are all with you on this journey x
Have you looked into bppv? (I believe that’s what it’s called). Where the crystals in the inner ear stack up and get loose causing dizziness?
My husband has normal levels but every once in a while he gets dizzy and has to stay in bed for a day or two. My husband’s is caused by bppv.
There is also Menieres disease, have you looked into this?
Or possibly autonomic? Do you have other symptoms that come around the same time? For example my vertigo Is random and lasts Less than a minute but often I get tinnitus and the feeling of cotton in my ear. Writing down when they happen and any other symptom might help you get closer if you haven’t already started.
Vertigo
Vertigo - MAV
Sudden onset of vertigo - could it be thyroid related?
Vertigo/dizziness
