Apologies in advance for the rambling post....I’ve seen quite a few people on the forum mention the strange unbalanced dizzy feeling with hypothyroidism.
For me it’s like every cell feels so fatigued & I’m so exhausted I can’t quite tell where the floor is & it feels like it comes up to meet me & like I’m about to collapse, (at the moment it’s constant.) I also get infrequent full rotational vertigo.
I suffered with this dizzy feeling for 5 years consistently before diagnosis at 24 (10 years ago) & then whilst I’ve been in a thyroid imbalance for the last 2.5 years, while I can’t seem to get my thyroid levels in check.
ENT can’t find anything obviously wrong & I am sure it’s thyroid related.
I’m supposed to be going on a trip next week that’s been planned for ages hoping that I’d be feeling better after thyroxine increase, but alas not yet.
I think I’m going to have to get a cane to lean on to help walk, I feel like such a fraud somehow having to do this but I can’t think what else to do to manage.
I don’t want to not go & let my other half down after he tries so hard being there for me & I don’t want to miss out on something... yet again.
I think I’d forgotten just how unwell you can feel with this disease & lately it’s really got me virtually housebound again.
Apologies for the rant but I wonder if anyone has found any positive ways to practically cope with this horrible symptom?
(Other than just waiting it out and hoping for the best!) as it’s truly getting me to the point of giving up.
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Hi @galathea thanks so much for the reply. I should have said I do try and take stemetil which is similar and have this if I do have a bad vertigo attack. It does sometimes help a little but it doesn’t make the weirdy constant exhausted dizzy feeling go away completely, it’s so strange!
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Eating liver or liver pate once a week, or black pudding is another option. Other iron rich foods like spinach, prawns, pumpkin seed, dark chocolate. Daily vitamin C can help improve iron absorption
Strictly gluten free diet helps thousands with Hashimoto's
According to Izabella Wentz the Thyroid Pharmacist
approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.
Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thanks so much for that info SlowDragon, even just the reminder that I was very under medicated (and could still be unwell from that helps hugely.)
My vitamin D was 45nmol in December (the previous year it was 33)
I’m supplementing with the vit d better you spray with the added vitamin K2 with it.
I’m going to ask for a recheck of my ferritin next time I see the dr as they’ve not checked it in a while.
My iron levels definitely still need addressing I’m sure of it as no matter what I do they don’t ever seem to get hugely better.
That’s great info about the B complex, i take a sublingual b12 spray as well as my injections to try & keep my levels up but have been lapse in sorting the other B vitamins.
I have been wondering about lack of magnesium.
I have been taking a multivitamin but I’m not sure that I absorb things very well.
Thank you for all your valuable information and time it’s very much appreciated
There's no shame in getting a cane if you need one. I've got quite a collection. I've also got a wheelchair, for really bad days. Yes, I do feel a fraud with that one, but it's better than staying home!
But, it's not just about hormones, you know. Have you had your B12 tested? That can sometimes be responsible if it's low.
However, the thing I've found helped the most is CBD oil. Have you tried that?
@greygoose Thankyou so much for that it really means the world. I was thinking of getting a folding cane for my trip, you’ve really helped me feel that it’s ok.
I’ve realised that it’s so ingrained in my head from doctors and people I’ve known that “you don’t feel this ill with hypothyroidism” & you should be fine that I feel guilty or like I’m imagining it but I know I’m not! & I know everyone here suffers so much we’re not imagining it.
I’m trying to learn acceptance of my body, after 15+ years of this disease I’m still not there.
I’ve got pernicious anaemia too that I found out about a year ago, I’d had it for years I think so i have b12 injections every 3 months, & top up with a sublingual spray too just in case!
I’m really intrigued you’ve said that about cbd, I’ve been thinking about trying it, I wonder do you have a good brand and strength you use & feel happy with? I’ve been trying to research but it’s such a vast market I’ve tied myself in knots trying to figure it out!
Doctors can be such insensitive pigs! And I make no apologies for saying that. They totally lack empathy, for the most part, and would far rather make out it's all our fault and/or we're imagining it, etc. than actually do their jobs and find out what's wrong. How can they - or anyone else - know how much a hypo suffers when they've never had the disease!
But, you know, because you live in your body. And, you have a duty to yourself to do whatever you need to do to help. And to hell with what other people think.
So, get your cane - the nicest one you can find! After all, they used to be considered a fashion accessory, and were carried by the smartest people! My folding cane (for the car) is a flashy metallic blue with little flowers. I love it!
So, for the CBD oil, the best company I've found is Simple CBD:
Thanks so much greygoose, that’s really made me feel better.
It’s very true what you say, if drs had listened to me for 5 years pre diagnosis & tested me thoroughly instead of just saying I was anxious maybe I wouldn’t have lost the majority of my 20’s to this disease & again during this flare up.
The same leading up to my pernicious anaemia diagnosis, they found b12 deficiency and gave me tablets a year prior, but didn’t follow it up & as I felt worse and worse & they told me it was stress 🙄, I got my own b12 test which showed it had gone down despite supplementing, (to what my dr eventually called spectacularly low levels) suspicious I asked for an intrinsic factor test & the pernicious anaemia was found!
We shouldn’t have to push like we do just to be listened to
It’s horrible being treated like we are!
Sorry for the rant, it’s one of those days (years!)
I will definitely try the cbd thanks so much for that! I’m very grateful xx
I love your attitude about the cane -yours sounds adorable! 👍👍 I had to use one this winter when we had two ice storms in Montreal. No shame here - people were falling down for vanity’s sake - mine is nowhere near as chic as yours but it had an ice pick on the bottom and at least I was upright! Thanks for posting that. Made my day.
When my folate levels are low I get vertigo. Maybe worth checking your levels out! I take 400mcg that you can get from any supermarket which keeps my levels just right.
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that’s been planned for ages hoping that I’d be feeling better after thyroxine increase, but alas not yet. 
you’re very kind xx 
Nearly 4 years post TT and still feeling rubbish
Feeling Pathetic!
Still feeling zoned out
Post hemithyroidectomy op
