Still feeling off balance: Increased... - Thyroid UK

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Still feeling off balance

Tinker72 profile image
45 Replies

Increased Levothyroxine to 75mcg about 4 weeks ago. Have been taking Thorne Basic B Complex, D3000+K2, Ferrous Fumarate 210mg and Vitamin B12 daily oral spray.

My symptom of feeling off balance seems to have been worse these last 5 days. Feel as though I’ve had alcohol. Also, I can feel quite vague, as if I’m here but not?!

Anyone had anything similar? I’ve also got various pains all over 😣 I have recently been investigated for RA and Lupus, but negative.

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Tinker72 profile image
Tinker72
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45 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Your FT3 was terribly low and all your vitamins were low too. It's going to be a slow old job to heal. The main thing is that you're now on the right track.

When are you next booked for bloods on this dose?

Tinker72 profile image
Tinker72 in reply to Jaydee1507

I’ve got a form for thyroid bloods from the Doctor, so was going to go in about 3 weeks time?!

Jaydee1507 profile image
Jaydee1507Administrator in reply to Tinker72

That will be about right. Book it for around 9am or earlier, fast that morning before the test and take Levo after the test that day not before.

You may even need further increases, hard to tell now but you'v been under medicated a while now so won't be an overnight recovery sadly.

Tinker72 profile image
Tinker72 in reply to Jaydee1507

thank you Jaydee ❤️

Fernsmum profile image
Fernsmum in reply to Jaydee1507

Hello I know exactly how your feeling as I'm the same , I've been having B12 injections for about the last 2 years ,but still get a lind of floating head feeling , I have found too much sugar makes it worse , my gp gave me some pills , but tbh they don't do anything to help so I stopped taking them ,try not to bend,as this makes it worse and don't rush , I find that makes things worse too . Good luck x

Tinker72 profile image
Tinker72 in reply to Fernsmum

thank you ❤️

Alison100 profile image
Alison100 in reply to Jaydee1507

Is feeling "off balance" a common symptom of low T3 then?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Alison100

It certainly can be.

Alison100 profile image
Alison100 in reply to Jaydee1507

Ah, ok. Thank you. That explains alot

buddy99 profile image
buddy99 in reply to Alison100

I used to have low (bottom of range) T3 and I was falling all over the place, broke several bones and had to have my forehead stitched up. I became horrified of being on my feet. Now I am on T3 and have not fallen for a long time (knock on wood) because my floaty head and my balance are much improved.

Alison100 profile image
Alison100 in reply to buddy99

Really interesting...but equally, really awful time for you

TiggerMe profile image
TiggerMe

You've had some great advice on your previous posts but all of those things take a little time I'm afraid to improve, are you on HRT? Could it be menopause related?

Tinker72 profile image
Tinker72 in reply to TiggerMe

I know, symptoms are so similar aren’t they! It’s a nightmare trying to get a straight answer from any of the GPS I’ve spoken to’

Tinker72 profile image
Tinker72

Yes, I have HRT patches but I’ve been on those for around 2.5 years.

TiggerMe profile image
TiggerMe in reply to Tinker72

Personally I didn't find the patches (Evorel 50) strong enough so swapped to separates and added testosterone as this was also low 🤷‍♀️

As you have been undermedicated for your thyroid it can have a knock on effect on everything 😕 you could check your levels?

Tinker72 profile image
Tinker72 in reply to TiggerMe

I tried separates two years ago when I first started to become off balance etc….then when they said I had sun clinical Hypothyrodism 👍

Buddy195 profile image
Buddy195Administrator

Just to add that I felt off balance if I added Levo too quickly; found I could only add 12.5mcg at a time. My road to recovery was more tortoise than hare, but following forum advice to optimise thyroid medication and key vitamins made a HUGE difference in the long run.

Hang in there Tinker72.

Tinker72 profile image
Tinker72 in reply to Buddy195

Thank you. Just frustrating as I’ve had to take time off work now 😕 but that was mainly due to the pain issues leaving me hardly able to walk. I’m pleased to say that improving but the off balance is worse.

ockerdoc profile image
ockerdoc

I was feeling similar and I realised it was the B vitamins causing nausea and vertigo. As soon as I stopped the B vitamins it went away. Maybe try that first and see if makes any difference to the way you feel. I’m having B12 injections instead of taking it orally and through further testing I can take B6 orally with no issues but not B12. Not sure about the others yet I’m going to try them individually to find which ones cause me stomach upset.

Tinker72 profile image
Tinker72 in reply to ockerdoc

Hi, thanks for the reply. The off balance feeling is why I went to see the Endo in the first place. He informed me it was nothing to do with my thyroid and suggested I have Chronic Fatigue Syndrome! It was only after recommendations on here that I started the Vits and asked my GP for an increase in Levo. I thought I might have needed B12 injections but GP said no.

ockerdoc profile image
ockerdoc in reply to Tinker72

Ah right ok I hope you figure it out good luck :)

SlowDragon profile image
SlowDragonAdministrator

Ferritin 22ug/L (15-300ug/L)

B12 317ng/L (180-900mg/L)

Vit D 42 nmol/L

Folate 4.9ug/L > 3ug/L

previous post shows vitamin levels were terrible

Exactly what vitamin supplements are you now taking

How much vitamin D

Which brand of vitamin B complex

Which B12

Are you taking any magnesium too

Has GP tested full iron panel test for anaemia

Are you now supplementing iron ?

Which brand of levothyroxine are you taking for 75mcg dose

Is this same brand as previous

Tinker72 profile image
Tinker72 in reply to SlowDragon

thank you for the reply. I’m taking 3 sprays of BettetYou D3000+K2. 4 sprays of BetterYou B12. Thorne Basic B Complex and I take Wockhardt Levo as TSH went up when brand was changed. GP prescribed 210mg Ferrous Fumarate, which I’ve taken for 4 weeks. They also prescribed Strivit-800IU (one daily), but I’ve been taking the spray above instead. I’ve bought magnesium, but haven’t taken it yet.

Bearo profile image
Bearo

I felt dizzy and nauseous trying to take B12 1,000 in tablet form.

I found I was able to take a 500 dose of B12 and the B complex isn’t a problem. Is your B12 spray a high dose?

Tinker72 profile image
Tinker72 in reply to Bearo

1200ug per dose, but I was off balance before stating the spray.

janeroar profile image
janeroar

if you’re feeling unbalanced and it’s been going on for q a while maybe it’s a good idea to ask for referral to neurology?

Tinker72 profile image
Tinker72 in reply to janeroar

I’m supposed to have had a private referral to see an Endo. Still waiting 😔

eeng profile image
eeng

I definitely feel off balance when I am under medicated. As you say, it's as if I've had a few glasses of prosecco!

Tinker72 profile image
Tinker72 in reply to eeng

yes it’s really horrible. I’m sure people think I’m making it up as it’s really hard to describe!

in reply to eeng

I feel like that as well, waiting for blood tests, it took a lot of visits to the doctors and a lot of persuasion to get here. I’m ok if I don’t turn around quickly or bend over.

McPammy profile image
McPammy

I felt off balance when I was under medicated. Felt at times as though I was going to fall backwards. I also had lots of trouble trying to walk as well as many other awful symptoms. That was down to very low energy and strength which was all down to very low T3. I was on Wockhardt brand also tablet form. My endocrinologist switched me to liquid levothyroxine as I was having trouble absorbing tablet form levothyroxine. We found d out that I also wasn’t converting T4 to the most important hormone T3. I had to go private. By this time I couldn’t work and had been off work for over a year. It just kept getting worse. So many NHS Drs had no clue what my problem was. Privately I was finally diagnosed and prescribed T3 liothyronine medication along with T4 levothyroxine medication. It was nothing short of a miracle for me. I also had too low B12 and ferritin. Vit D and folate was fine. Now I get B12 injections and ferritin medication regularly. I keep a very close eye on my bloods now every 3 months. I found going private only was my saviour. If you want to fast track your diagnosis and speedy recovery and details of my private only endocrinologist then just private message me as can’t mention names on the open forum. I hope you are not too bad today and things start improving. Remember it can take some time. It’s dreadful how the NHS seems to have little knowledge of thyroid diseases and how to detect them and fix them for sufferers.

Tinker72 profile image
Tinker72 in reply to McPammy

thanks McPammy, what a long journey you have been on. Sounds like your flourishing now though, so that gives hope to us all 😀🙏

Geegee777 profile image
Geegee777

I followed advice from this forum and I went private, cannot thank everyone enough. Its been a journey of discovery and patience is key🌸🌸🌸😄

Tinker72 profile image
Tinker72 in reply to Geegee777

I want private and he said that I had chronic fatigue syndrome, a found this a bit rash as he didn’t even comment on the bloods I had provided which showed low iron etc . He also suggested a referral to Neuro, which I’m still waiting for. I totally agree, the best advice I’ve had is from the kind people on here ❤️

Justine_Case profile image
Justine_Case

Hi Could it be your low ferritin? You mention other supplements you are taking, but not iron.

I know when my ferritin levels are low, I feel light headed/dizzy/off balance and as if I could pass out.

The advice given on here is to have a full iron panel test, to establish if you have iron anemia, if that is fine but your ferritin is low, improve on your iron rich foods, and speak to your GP.

Tinker72 profile image
Tinker72 in reply to Justine_Case

I take ferrous Fumarate 210mg prescribed by GP

Question2020 profile image
Question2020

That brand of B complex made feel very sick because they are not gluten free. Try going gluten free and check for celiac disease.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Question2020

If you are talking about Thorne Basic B complex then it is stated as being gluten free. Sometimes people don't do well with methyl vitamins and need a different type of B vitamin.

Anthea55 profile image
Anthea55

Here's an alternative option.

A few years ago I started to have balance problems - couldn't walk straight and had to hold onto furniture. This was particularly bad when I had been sorting out books on a high shelf, which involved looking up and bending my neck back for too long. I felt that I had already got problems with my neck, so I went to my usual osteopath. Long story after that.

Further research led me to discover that if my neck is a bit loose then bending it can put pressure on the arteries/whatever leading to the back of my brain and can affect my balance.

I went to see an orthopaedic surgeon who arranged for an MRI scan and confirmed my suspicions.

Think of the spine like beads on a string. If the string's a bit loose the beads can get out of sync. I now see a cranial osteopath regularly who is able to realign my neck if it's out of sync.

This is called Vertebro Basilar Insufficiency (VBI), but there seem to be other types of VBI.

I hope that makes sense!

Bearo profile image
Bearo in reply to Anthea55

it makes complete sense to me as I suffer something very similar but don’t really know the cause. I’ve always suffered motion sickness but for a few years now the motion sickness comes on if I have to look at something at fairly close visual range. Sorting anything like paperwork or a drawer full of bits, or sewing or gardening is impossible .All sorts of things cause me to feel dizzy and sick - any form of transport, bending down to look into a cupboard , bobbing up and down in the swimming pool etc etc.It seems my eyes are telling my brain I’m getting dizzy and then my brain tells my stomach to start nausea. I don’t have balance problems but I do have to lie down for a few hours.

It got worse a year or so before I was diagnosed hypothyroid so I don’t know if the two are connected.

I was referred to ENT but he wasn’t any use. I think I should see someone in neurology.

Anthea55 profile image
Anthea55 in reply to Bearo

You say it's like travel sickness. Have you tried those acupressure travel sickness bands? They are also recommended for morning sickness and can be worn all day.

Could be worth a try.

Also have you had your eyes tested recently? - an optician might have some ideas.

Bearo profile image
Bearo in reply to Anthea55

Thanks for your reply. Saw the optician - nothing wrong with my eyes (well, cataracts, but not connected).

I think I tried the wrist bands years ago for travelling and they didn’t help but I could try them again. Anti nausea pills help but I try not to take them too often as they mess with thyroid.

Anthea55 profile image
Anthea55 in reply to Bearo

With the wrist bands you have to get them in the right place. There's a button which presses on an acupressure point.

Bearo profile image
Bearo in reply to Anthea55

Thanks - nothing to lose by trying them again.

Tinker72 profile image
Tinker72

yes it makes a lot of sense, and I’m glad you finally got some answers. It’s like pulling teeth isn’t it?!

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