That dizzy feeling! : Apologies in advance for... - Thyroid UK

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That dizzy feeling!

MissOphelia profile image
16 Replies

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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MissOphelia
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16 Replies
galathea profile image
galathea

Not a cure but maybe a temporary solution, have you given Stugeron, anti sea sickness pills a try?

MissOphelia profile image
MissOphelia in reply to galathea

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!

Thanks so much though :) you’re very kind xx

SlowDragon profile image
SlowDragonAdministrator

Your previous posts show you have been extremely under medicated on very low dose of Levothyroxine

This can result in very low vitamin levels

healthunlocked.com/thyroidu...

You also have Hashimoto's, which also lowers vitamin levels

You may need more frequent B12 injections

It's also recommended on here it may be beneficial to take a good quality daily vitamin B complex, one with folate in not folic acid

chriskresser.com/folate-vs-...

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low vitamin D and low B vitamins can be linked as explained here

drgominak.com/sleep/vitamin...

How low was vitamin D?

Are you now supplementing?

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

This article explains should discuss with specialists before taking any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Essential to improve low ferritin levels too

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Other gut issues due to being hypothyroid

healthunlocked.com/thyroidu...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

MissOphelia profile image
MissOphelia in reply to SlowDragon

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 :)

SlowDragon profile image
SlowDragonAdministrator in reply to MissOphelia

Post today about FERRITIN

healthunlocked.com/thyroidu...

Iron

nahypothyroidism.org/uncove...

Good iron supplements

healthunlocked.com/thyroidu...

greygoose profile image
greygoose

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?

MissOphelia profile image
MissOphelia in reply to greygoose

@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!

Thank you so much for your kind words xx

greygoose profile image
greygoose in reply to MissOphelia

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:

simply-cbd.co.uk/

Great prices and lovely people. :)

MissOphelia profile image
MissOphelia in reply to greygoose

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

greygoose profile image
greygoose in reply to MissOphelia

Rant away! It does you good from time to time, to have a really good rant - and the lord knows we've got enough to rant about!

I hope the CBD helps. :) xx

Greekchick profile image
Greekchick in reply to greygoose

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.

greygoose profile image
greygoose in reply to Greekchick

You're welcome. :) Ice storms sound awful! I'm glad we don't get those here. And an ice pick sounds just right for the occasion! x

Claudieg1993 profile image
Claudieg1993

I had this for YEARS!!! It only went when u went on NDT

MissOphelia profile image
MissOphelia in reply to Claudieg1993

Oo Claudieg that’s really interesting to hear. I’m so sorry you had it too, it’s just horrible.

Padders12 profile image
Padders12

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.

MissOphelia profile image
MissOphelia in reply to Padders12

Thanks so much Padders12 will get it checked :)

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