Does Hashimotos cause constant dizziness????? - Thyroid UK

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Does Hashimotos cause constant dizziness?????

hazeljane profile image
25 Replies

Hi all....for the last number of months I have been experiencing constant dizziness....not vertigo (the room doesn't spin) I feel like I'm in a bit of a daze, line I've just got off a roller coaster or something...spaced out and dizzy. I've had an mri scan of my brain recently which thankfully was clear...except for a cyst in my left sinus cavity. My thyroid is a little all over the place at the moment and my Tpo is 978 I'm wondering, can high Tpo cause dizziness???? My TSH is elevated at 5.89 bad my ft4 is at the high end of the range at 21. I'm unsure of my ft3 as there was a little dispute on that last week so I'm just waiting for lab results....I'm just curious if any of you have experienced this???? Alongside this constant dizziness I'm having anxiety test I know isn't helping...I'm now wondering is it all anxiety???? But in my heart I know it's not...I know I'm anxious because of how I feel. I'd really appreciate any advice you all may have...I'm finding this the hardest "symptom"....I can cope (barely) with the palps, neck pain, joint/muscle pain etc, but I feel my doc is fobbing me off as being anxious when I don't believe so. Thank you xxx

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hazeljane
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nicolajane profile image
nicolajane

Hi Hazeljane, All I can say is that I'm having the same problems lately - anxiety, palps, neck and chest pains. I have suffered from dizziness on and off for the past 4 years and yes, it's one of the worst symptoms. Are you on levothyroxine? I'm pretty sure all this is Hashi's symptoms but I never had the problems with dizziness and anxiety etc., before I was on thyroxine. I'm currently battling to try more T3 (at the moment I'm on 75mcg levo and 10mcg T3) in the hope that this will help. Same as you, whenever I go to my doctor I am told it's anxiety and pressured to go on antidepressants - it's so frustrating. Your TSH is quite high (as is mine - over 10 at last blood test) so maybe you just need more thyroid hormone?

Nicola x

hazeljane profile image
hazeljane in reply tonicolajane

Hi nicolajane...sorry for the late reply, kids and food shopping got in the way.....thank you very much for your reply I really appreciate it. I'm sorry, however, you're in the same boat as me :( I'm on eltroxin 100mg and 125mg every other day. Ever since starting eltroxin (back in March) I've been getting horrible palps and have this constant dizzy feeling. It's just so awful, I'm sure you'd agree. I was first diagnosed back in March of this year following the birth of my daughter who was born October 2012....took months to get a doc to even do a blood test. My tsh was greater therm 150 and ft4 was 2 so I was VERY hypo and felt like I'd been hit by a train. So even though I still feel like poo, I know my levels are millions better....but I defo need something to change because I cannot function like this. Like you, I was never an anxious person, even at times when I probably should have been lol but now, I am anxious 24/7 and I've honestly been toying with taking anti anxiety meds because I'm so tired if being this horrible person. But I know deep down that this is a result of something that needs fixing, and if I take tablets it'd just be masking what still needs fixing if you get me lol How have you been finding taking t3 do You feel any better???? Xx

nicolajane profile image
nicolajane in reply tohazeljane

Yes the chronic fatigue is bad enough but palpitations and anxiety are really horrible and debilitating.

Compared to me it's early days for you (I know this is no consolation!) - I've been on this treadmill for 4 years now. When I was diagnosed I was told it might take up to a year to get the thyroxine dose right and feel better but I think you probably know by the time you're up to 100mcg thyroxine whether or not it's working. There is a possibility with you that you are still adjusting to the thyroxine and hence the anxiety/palps but at the end of the day if you feel it's not right you have to go back to the doctor (hopefully you have a better one than I do!).

I've been taking the 10mcg T3 for just over a year now and to be honest, I'm not sure I notice much difference. I dont think I'm taking enough. Having said that, I have been able to lose weight (via dieting of course) since having the T3 which I could never do on thyroxine alone. There may also be a tiny improvement in my concentration. I've been badgering my gp/consultant for over a year to try and increase my T3, as yet the answer has always been 'no'.

I agree that taking anti-anxiety meds would just be masking the underlying issue - which is it sounds like your thyroid treatment needs sorting.

I was told my b12 was low too a few months ago, but like you I wasn't prescribed the proper loading dose of 6 either. They gave me 3 injections over a fortnight and I'll have to wait until December for the next one. I felt sick and horrible on the day of the injection too - not many people say this, they say there's no side effects. Can't say I've noticed any benefit form this either.

Fingers crossed that your doctor will help you when your ft3 result comes through.

N x

Redditch profile image
Redditch

common symptom I'm afraid...... also... if your T4 is high but so is your TSH you may not be converting your T4 to T3.. I would urgently ask your doc to try you on T3 instead.. Anxiety is also common as per Linden method expert talk yesterday at the TPA conference.. We feel very paranoid with this condition because the doctors don't listen to us and treat us on our lab tests and not how we're feeling.. You.. are feeling rubbish.. your treatment isn't working...

Try hard to express yourself at the doc and ask to try T3 instead... tell him/her you are not feeling well and some patients do better with T3..

You can always try it yourself if they refuse to prescribe it..

One reason why your T4 was high could have been that you took it just before the blood test? don't take your Thyroxine for 24 hours before a blood test, it gives the results a bit of a hike that isn't real.

Message me privately if you want .. I've been through this.. and am out the other side.. feeling Fabulous

hazeljane profile image
hazeljane in reply toRedditch

Hi redditch....apologies to you too for the late reply. Thank you, so very much for your reply I'm so grateful.

I went to my GP last week and spoke to her about my levels...long story short she is only a new to be GP so she's playing catch up so to speak.....to be fair, she agreed with me, eltroxin isn't working by itself. She said, to be safe, she will wait for my ft3 result to come back before she agrees to give me t3. I can appreciate that...but my patience is running thin, I had a crap GP previously hence the change and I'm just worn out waiting to feel "normal". Also, I hadn't taken my meds before the blood tests, I always wait now, thanks to the advice of people on here.

I got really bad palps when starting eltroxin, so I had to reduce my dose and up it very very slowly...now I am still getting them...literally some days I'm sofa bound with them....I have a holter monitor next week so fingers crossed all is good. Also my doc prescribed beta blockers for after the holter pack....just a very low dose because my Bp is low. Have you any experience with these???? If so what do you think????

As for the dreaded anxiety..thank you for your kind words of reassurance I can't tell you how much it means to have someone tell me I'm not loosing it. It's not being heard that is so difficult and hurtful....it's so wonderful to hear you feel fabulous now, I can't wait to be able to say that :) xxxxx

Redditch profile image
Redditch

Hey both of you... don't let the doc tell you it's in your head.. it's a symptom of your illness... You are poorly thyroid patients who are undertreated, both of you... Regarding palpitations.. if you're taking T3.. you can break it up into tiny pieces and spread it out during the day.. I did that and was fine...

hazeljane profile image
hazeljane

Hi everyone and thank you all im in tears here because you've all just confirmed what I thought and lately that never happens lol so thank you ;-) my gp has agreed to giving me t3 pending the results of my lab report next week. I'm just out doing my food shop lol but ill reply further when im home I just wanted to thank you all xxxxx

PinkNinja profile image
PinkNinja

I was wondering if you have had a B12 test. My vertigo is like you describe when it is mild - that spaced out kind of feeling, almost like I'm walking on the moon or something! The room doesn't actually spin until it gets bad but that only happens when I keep forgetting to take my B12.

It could well be related to the Hashimoto's but it would be a good idea to get the B12 checked too. The test isn't very accurate so you need a result of 500 AT THE VERY LEAST! If you can get an active B12 test, that is much more reliable but I'm not sure where it is available. It's something you may want to look into.

If you do have low or low-normal B12, ask to have your intrinsic factor and anti-parietal cell antibodies checked to see if you have pernicious anaemia. This is another autoimmune condition that seems to go alongside Hashimoto's in rather more patients that you would think. If you have this you will need B12 injections. It could well be at least a contributing factor to your symptoms.

If you don't have PA but have lowish B12 you probably need to take a B12 supplement (methylcobalamin - I take 1000mcg) and a B vitamin complex. It is not a bad idea to take these anyway, but wait until after any B12 or folate testing as they will skew the results.

Whatever the cause, I hope you find the answer so you can feel better soon.

Carolyn x

hazeljane profile image
hazeljane in reply toPinkNinja

Hi Carolyn and thanks girl your reply....I have pernicious anaemia :) well spotted!!!!! Although, because my levels are "within range" they refused to hive me the loading 6 doses of b12.... After fighting it (my dad has PA and suffered a lot in the beginning) I got a weekly injection for 4 weeks..my 4th one was Wednesday last...it didn't do much really. On the day of getting it I'd actually feel very sick and the numbness and tingling I get got worse...but the following day I was full of energy, still dizzy/spaced out but a lot more like myself....then the following days it'd just wear off until I was again sofa bound. My b12 was 317 my last blood test, 240 is the low end of my range.

I've since bought sublingual b12 spray so hopefully that might help???? I only got it today so I don't know how good/bad it is. But I defo do feel the b12 issue plays a huge part in how I'm feeling xxx

hazeljane profile image
hazeljane in reply tohazeljane

I ment thanks FOR your reply not girl lol this predictive text is a nightmare lol

PinkNinja profile image
PinkNinja in reply tohazeljane

I guessed that was what happened :D

PinkNinja profile image
PinkNinja in reply tohazeljane

That would explain a lot! The B12 test is inaccurate. The mere fact you have PA should be enough to get you those injections. Once you have it, you should get regular injections regardless of your B12 level. On top of that, the B12 test is wildly inaccurate.

The sublingual spray may help if it is a good strong dose. If you have PA and such low B12 level you will probably need quite a high dose. I started with 5000mcg daily. It was a while before I noticed a big difference but I noticed some difference quite quickly. Mostly it was energy levels and the nerve pain that got better, then the vertigo.

I hope the spray works for you :)

Carolyn x

hazeljane profile image
hazeljane in reply toPinkNinja

Thanks Carolyn...the spray is 1200 per spray so I was thinking of doing it twice a day....I'm going to buy the 5000mcg sublingual online because you can't buy them in Ireland....thanks a million for your advice I'm very grateful. Fingers crossed things get better soon....just wondering, where you short of breath whilst your b12 was low???? Tight chest, inability to rake a full breath....or is that a hashi's thing???? I'm so confused lol xx

PinkNinja profile image
PinkNinja in reply tohazeljane

The shortness of breath could be either or both. It might be worth checking your iron and ferritin too, just to be sure. Low or low-normal iron, or ferritin below 50 can cause breathlessness. If this doesn't improve with raising your B12 levels and iron, it is best to get it checked out as a separate thing. It probably is B12, iron or Hashimoto's but it could be something else so best to check.

Let us know how you get on :)

Carolyn x

ljn172000 profile image
ljn172000 in reply tohazeljane

I've been struggling with dizziness for as long as I can remember. I've seen neurologists, endocrinologist, neurosurgeons due to anot accidental pituitary adenoma discovered that was unrelated to my dizziness. Due to my widespread pain I was diagnosed with fibromyalgia. While I was pregnant the dizziness was so unbearable I ended up out of work. They never detected any thyroid problems until after I delivered my son. I went from 189 lbs on the day of delivery to 126 lbs in 3 months. My tahsheena.green@state.ma.us was at 0.02 the following month it was over 8. I was recently diagnosed with hypothyroidism, questioning hashimotos. I have begun to experience an interesting twist to my dizziness, not vertigo as you distinguished. My dizziness is now accompanied with a tingling/numbness in my tongue. Thinking it was signs of an is chemical stroke I had an mRA (clear). I was found to have very low B-12 and D. Is this similar to your symptoms? I do not often hear of it described like you did.

Justjess22 profile image
Justjess22 in reply toPinkNinja

I’m so excited I found this post! After suffering with a couple years of worsening fatigue, gluten and egg intolerance and exhaustion, it lead to multiple upper respiratory infections and shortness of breath that was diagnosed as asthma (NOT), finally got a blood test that said my vit D was low. Started supplementing that and it helped quite a bit but not completely. I have the classic symptoms of Hashimoto’s but normal TSH so no one has ever tested for this. However, both my sisters and my young adult daughter have been diagnosed with Hashimoto’s so tomorrow I finally go get blood tests to find out if I too have it. The newest most debilitating symptom has come upon me. The dizziness that like you both described is NOT vertigo, no spinning, no nausea for me just this constant “buzzing” sensation in my head and feeling unbalanced when walking around. Ugh, so frustrating. My PCP treated me for sinus infection with antibiotics, then a prednisone pack when that didn’t work. I’ve found a Naturopath doctor and finally think I’m on the right track! I’m also getting my B12 tomorrow and a bunch more.

Thank you sooooo much for posting! I’ll look forward to reading more and finding out some answers. Crossing my fingers!

Jess

Justjess22 profile image
Justjess22 in reply toJustjess22

I forgot to mention the anxiety. I was going through a divorce so I thought I just was too emotional and not handling it well. I’m on the anti-anxiety meds. I hope I can get off of them and handle the root problem.

hazeljane profile image
hazeljane

My ferritin is low at 37 and my folic is too so I've started to supplement them too so here's hoping that works :) I know it'll just rake time. Really appreciate your help, thank you xxx

Haze xx

PinkNinja profile image
PinkNinja in reply tohazeljane

That is rather low. Optimal is 70-90 for many people although everyone is different. Hopefully getting all these things sorted out will help :)

I've found that acupuncture helps enormously with those terrible dizzy/spaced out symptoms. I'm fortunate enough to be near a drop-in (therefore cheap) acupuncture centre so go regularly for a top-up. However, it took only 2 sessions to get rid of the worst dizziness, so it may be worth considering a couple of sessions if you're desperate.

Sue

x

mandy-white profile image
mandy-white in reply to

Hi, I have tried acupuncture for dizziness but it didn't work for me. I was just wondering where they put the needles on you as they put them in my feet for this. Which I thought was weird.

Feet did feature, but there were others too - can't remember exactly which points I'm afraid.

Toninicole profile image
Toninicole

I'm constantly suffering fatigue, dizziness & anxiety also, I'm on thyroxine 100 micrograms & taking Brazil nuts aswell, looking for any advice to help me to illuminate these symptoms, I hope you too can find some help as I know how debilitating Hashimotos can be xx

PA13 profile image
PA13

Hiya. Just did a google search of vertigo and Hashimitos as I have both and am really struggling with over a year of vertigo. Just wondering how you are now? Did you find anything to help or eliminate it? Thanks

NatalieF profile image
NatalieF

I have only just been diagnosed with Hashimoto's and have not even met with an endocrinologist yet and I am having dizziness (and sometimes vertigo) and anxiety/panic attacks. Not taking any hormones yet.

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