Anyone suffer with vertigo followed by days of being totally out of balance when hypothyroid or on levothyroxine? An ENT specialist refused to diagnosed any inner ear problems after doing an MRI but all symptoms point to possibly Ménière's or its being under medicated on levo?? It's so horrible though, it's getting worse by the day and today I was woken up at 4am with it when not even moving?! 😰

31 Replies

  • PJ,

    After diagnosis with a TSH of over 45, I was immediately prescribed 100mcg Levothyroxine. For the next month I felt continually sea sick and had to hold onto the walls even to go from my bed to the toilet ! ! ..... I also experienced the common "air hunger' and "internal vibrations" and other whooshing and weird head sensations.

    Everything gradually decreased to a point during the following four years and didn't improve drastically until I added T3 last June. Now I actually feel well.. I think it to do with our bodies hormones//homeostasis being so out of synch caused by years of low thyroid hormone.

    You only started medicating Levothyroxine 3 months ago and switched to NDT. You advise of ...[ .. gallstone, gut issues, and adrenal problems ...] .. all commonly seen with low thyroid hormone and known to possibly effect the tolerance of medicating thyroid hormone replacement in some ..

    I read there can be a reluctance for NDT to be readily accepted by a body deficient in thyroid hormone if iron//nutrients are low and//or thyroid antibodies are elevated as raising the dose high enough to suppress becomes difficult and so may encourage a hashi attack ....

    Your previous post states ...[ ... Flu, swollen lymph nodes back of neck, raging headache, dizziness & fast pulse - Hashimoto's & all since trying to switch to NDT! ... ] ...

    You have now had major knee surgery that will have further compromised the adrenals .... and switched back to Levo ! ! .

    If your iron levels are low, they need replacing as apart from carrying oxygen and assisting in digestion (enzymes), iron containing enzyme thyroid peroxidase is required to produce the thyroid hormones. Low levels will also slow down the conversion of T4 to T3 (deiodinase activity). I don't supplement iron so can't comment on supplement side effects but you could repost your question.

    What are your Vit B12 and Vit D levels ? ? ... What is cortisol levels like ? Are you managing a possible high antibody count ? ? ...

    Somethings the very things we are chronically deficient in are the ones our bodies react most violently to for this very reason. I believe synthetic T4 & T3 to be more sympathetic to severe deficiencies and illness caused by thyroid hormone deficiency and other meds should be investigated once levels and nutrients are regulated.

  • "I also experienced the common "air hunger' and "internal vibrations" and other whooshing and weird head sensations." << thats exactly me at the moment too :(

    i'm waiting for a saliva cortisol test to come back which will help me treat my adrenals appropriately as i was guessing and making it work (Holy basil made the internal shakes worse at night!)

    i've been taking food state iron for over a month now and seen an improvement in levels, my GP wouldn't test my B12 but I'm going to ask another DR next week (I've been supplementing anyway)

    My vit D level is above optimal as i supplement through the winter months.

    I take a good female multi vit daily, 200mcg of selenium to help lower antibodies, extra strong probiotic, tiger nut four for prebiotics, super green powder in morning smoothies, digestive enzymes with HCL & ox bile, AVC with apple juice when taking my supps to aid absorption, 6g of vitamin C a day, sometimes more when feeling really rough. 400mg of magnesium every night and 15mg of zinc to help convert T4 to T3. don't think i can take much more than that!!

    i'm going to beg for FT3 & FT4 tests next week along with up to date iron, folate and B12 to see where i am and then possibly adding T3? i don't like levothyroxine and would love to try NDT again one day but as you say, lots of trauma in my life recently which is probably why my body couldn't tolerate it the first time around. taking my time this time but this vertigo/dizziness is intense and just hope it passes and i get optimal soon! no help from the DR though as they're all only interested in TSH and levothyroxine. no room for budging. thats why i bought the T3 myself.

    did you follow a protocol when adding T3 or do you have support from your GP?

    thanks for your detailed reply - seems what i experience is just another nasty symptom of this poorly understood condition.

  • PJ,

    I was left on T4 alone under an incompetent endo for four years and by then was so brain foggy I was incompetent myself of going forward.

    A visit to Dr P, a supportive GP, a second supportive endo, a nutritionist, much genetic testing and ridiculously copious amounts of supplementing (and of course T3) finally bought results.

    I think the internal vibes & air hunger are to do with insufficient adrenals. Your sups are good but dietary iron won't be enough to address a deficiency. Be aware that "super green powder" might be great for anti-oxidants but probably contains iodine.

    Vit B12 is not worth testing if supplementing as will just give elevated results.

    Once deficiencies are addressed thyroid hormone should work better and you will hopefully see improvements but it can be a long road.

  • this is what worries me about levothyroxine and knowing when the right time to introduce T3 will be as i don't have any professional support. thats a whole different topic though i guess....

    i think my cytoplan whole food iron is doing the job as I've been retested and it's tripled so it obviously does work. it's a great brand i trust (learnt a lot during my diploma in nutritional therapy)

    thank you for the info on the super green powder, you're right - it does have 3% kelp in AND my female multi has iodine and folic acid in :( will stop them straight away! such a minefield!

    i really need to look into this MTHRF gene and see how i can test it as i really don't know anything about it yet it comes up a lot on these groups. thanks again

  • PJ,

    You don't have to have the test if you are prepared to assume. Many Hashi sufferers have MTHFR impairments (meaning a reduction in their ability to methylate.)

    Methylating is a multi step chemical breakdown using the MTHFR enzyme that works with the folate vitamins (B9, folic acid).

    By supplementing methylcobalamin and methylfolate, you are covered as these are easy to absorb. These sups can be taken whether you have the impairment or not. I guess the only difference is if you have the impairment you might supplement higher amounts as your absorption and utilisation rate might be reduced.

    If you need T3 adding to T4, the sooner the better as it will help with all the health conditions caused by low thyroid hormone..


  • ok assuming i have it is much cheaper and if supplementing these safe forms are ok then i will continue. i've checked my B12 and it's 1200mcg of methylcobalamin by better you which i know has been recommended on the thyroid groups. and i found cytoplan do a whole food 400mcg of methylfolate so i will order these instead of taking the multi vit. so both B12 & folic acid in these safe forms are essential in hashimoto's?

    i have checked out the T3 protocol on STTM already but i keep being told i should test my thyroid levels first to see where i'm at and make a judgment on safe dosing as I'm self medicating. you agree?

  • PJ,

    Experienced users can tell by temps and pulse but because you are having weird reactions in response to thyroid meds and have already changed meds once, I think it imperative to test thyroid hormone levels before adding T3 because you won't have a clue what your levels are.

    Yes methylcobalamin and methylfolate can be supplemented by anyone who requires extra of Vit B12 & folate. They are just already converted to the next stage in the methylation process so saves your body having to do it when it struggles due to impairment.

    The two work together and Vit B12 is water soluble so excess is pee'd out but folate will need testing after 6 month as elevated levels can be dangerous.

    Your sups are good but are you getting rest//down time and good sleep to restore adrenal health ? ? I do loads of yoga and meditation.


    Private labs testing

  • PJ,

    Actually that is not quite true as there are other active Vit B12 supplements such as adenosylcobalamin.

    Hydroxocobalamin is not directly active but unlike cyanocobalamin which consists of cobalamin attached to a cyanide molecule, hydroxocobalamin readily converts to methylcobalamin.

    I think most in this forum who supplement an active coenzyme form of B12 do so with methylcobalamin as suggested above.

    Hope I haven't confused. Just stating facts.

  • i thought this so i started supplementing even though my dr wouldn't test it. going to be more stern next week when i ask for it again

  • Once you are supplementing B12 - the tests are of little or no value. This is laid down in the Guidelines your GP should have read.

  • surely theres no harm in testing it to see where levels are anyway? could help me see if i need to continue supplementing or not?

  • So you didn't read the Guidelines I posted for you in the above link. It does state that further testing once supplementing is of no value.

    The results will be skewed. Only 20% of a blood test result for B12 is available to be transported to the cells where it is needed - so it is only a guide. When you have been supplementing - the levels in your blood will be artificially raised - but that does NOT tell you what is happening at a cellular level. That is why it is often suggested both on this forum and the PAS forum not to start supplementing until AFTER the blood test.

    It is rather like thyroid - go by the symptoms :-) You cannot overdose as B12 is water soluble. Are you also taking a good B Complex to keep all the B's in balance ? Folic Acid v Folate ? Maybe worth researching ....

    I posted a list of Signs and Symptoms in an earlier post - perhaps you would find that helpful.

    As you have Hashimotos I would assume you will always need to supplement B12 along with other vitals. How much are you taking at the moment ?

    I am not a Medic - but a fellow Hashi's girl with a b12 issue. You can click onto my name and read my Profile :-) So yes the knowledge has come from experience and the hedgerows of life .....

  • ah right i see. scrap that then...would it be the case of me stopping supplementing for 3 months then testing for a accurate result? sorry, no i didn't have time to read through that link right now.

    i take the better you spray of b12, and my female multi vit has all the b vitamins in too so should be in balance. i have a feeling it has iodine in though?? maybe not such a good idea as per radd's comment above :/

    thanks for your knowledge and info

  • PJ,

    C677T MTHRF (genetic) impairments are common in Hashi sufferers.

    B12 (methylcobalamin) & L-5-MTHF (folate) supplements are easier for the body to utilise.

    Do not supplement folic acid (commonly found in multi-vit combos) as failure to utilise this (turn into 5-MTHF) results in a built up encouraging elevated homocysteine levels. High levels of free folic acid in the blood can also bind with receptor proteins reducing their number and their absorption rate.

    Methycobalamin & Methylfolate are formulated by brands such as Solgar and Jarrows, etc.

    Supplementing iodine can alter thyroid function and unless matched with selenium can encourage elevated thyroid antibodies as thyroid activity increases..

  • Hi radd - this was a link posted on the PAS forum by fbirder. It was in response to a topic I posted - Folic Acid v Folate :-)

  • Oooh thank you M,

    I love reading//listening about all this. I get most of my info from

    There is interesting topics listed in the sidebar.

    Thank you for posting.

    Om shanti ... ;o)))) ...

  • Me too - :-)

    Will take a look st the side bar ....

  • M,

    Wow... you've taxed my brain with this alternative view point.

    We are not molecular scientists but I see the basis what Dr Chaney is saying and it is probably true and may be applied to most of the population but I still maintain we must be that tiny weeny percentage who need methylfolate.

    We are on this forum for a reason and anything that might help has to be tried.

    At least he agrees we need to supplement something when we have a MTHFR mutation to get that small amount of working enzyme to convert.

    He said that methylfolate is involved with the B12 independent reaction in converting homocysteine to methionine and we see//read about elevated homocysteine in Hashi sufferers.

    He also answered my question about what Tetrahydrofolic-acid is as this is in some sups I was looking at. Think I will stick with the methylfolate to be on the safe side ... ;o)))) ...... .

    Thank you for posting.

  • Phew - thanks for the precis :-) The same topic is currently being discussed on the PAS forum :-)

  • purplejuicy - I once spoke to Martyn Hooper - he is the Chairman of the PAS and has written books about B12. He informed me that one would have to give up B12 for many months before re-testing - apparently it can hang around for simply ages. Most people do not consider the risk worth it.

    Reading the links and learning is the only way you can become well informed and know more than your GP.

    Multi-vits are often not a good idea - again mentioned often here - as you do not get enough of some Vitamins and Minerals - and on increasing the dose then you may overdose on some of them.

  • Purplejuicy,

    If you want a baseline B12 result you need to stop supplementing for 4 months which is the time it takes for red blood cells to die off and renew.

    I disagree with Marz about the value of testing after supplementing. Levels will usually be high after supplementing but I think there is value in seeing what the level is so you can judge whether the dose you are taking is sufficient.

  • The problem then being a GP will declare B12 to be fine and the patient will be told to stop supplementing. I have seen it happen - even to PA patients . There are additional tests to confirm B12D which is why I post the link to signs and symptoms where there is the relevant information.

  • Marz,

    Well most GPs will think B12 anywhere in range is fine and there is no need to supplement anyway. If I hadn't retested after supplementing 8 weeks I wouldn't have known that the dose I was taking was sufficient.

  • hi clutter, it turns out i have had B12 tested and it was 492 before starting my b12 spray. going from the STTM site, optimal is above 800 so will continue with spray and have bought a good b-complex for when that runs out.

  • I know not to trust the 'normal' response from GP's now. I ALWAYS ask for a printout of the results and post them/research for myself whether o need to continue supplementing and optimal ranges

  • i'm currently looking at a b-complex to take and found this one:




    Stabilized Rice Bran 250mg

    Rhodiola Root Extract [Rhodiola rosea] (freeze dried aqueous extract) 50mg

    Siberian Ginseng [Eleutherococcus senticosus] 50mg

    Ashwagandha Root [Withania somnifera] 50mg

    Green Oat Seed [Avena sativa] (fresh freeze dried – ORGANIC) 25mg

    Alfalfa Flower & Leaf [Medicago sativa] (fresh freeze dried – ORGANIC) 25mg

    Parsley Leaf [Petroselinum crispum] (fresh freeze dried – ORGANIC) 25mg

    Dandelion Leaf [Taraxacum officinale] (fresh freeze dried – ORGANIC) 25mg

    Beet Root & Greens Juice [Beta vulgaris] (fresh freeze dried – ORGANIC) 20mg

    Pumpkin Seed [Cucurbita pepo] 20mg

    Vitamin C (as Ca, Mg ascorbate) 250mg

    Magnesium (as oxide, citrate, ascorbate) 50mg

    Pantothenic Acid (as calcium pantothenate) 30mg

    Inositol 30mg

    Niacin (as niacinamide) 25mg

    Calcium (as carbonate, citrate, ascorbate) 25mg

    Vitamin B6 (as pyridoxine hydrochloride) 20mg

    Vitamin B1 (as thiamin mononitrate) 20mg

    Vitamin B2 (riboflavin) 20mg

    Choline (as bitartrate) 15mg

    Folate (as calcium L-methylfolate) 200ug

    Vitamin B12 (as methylcobalamin) 50ug

    Biotin (as prep.) 50ug

    both the b12 and folate are in the good forms right? thanks in advanced

  • Google the "Epley manoeuvre" and give it a go

  • Have you adopted absolutely 100% gluten free diet? You say you have gut issues anyway. But you can have leaky gut without any obviously symptoms. If gluten crosses from gut into blood stream then body can attack both gluten and thyroid molecules (they apparently look very similar) keeping TPO and/or TG antibodies high.

    Many Hashi people find Selenium supplements can help reduce antibodies and vitamin c with zinc can help support adrenals.

    Chopping and changing doses doesn't help. (I tried that for years, also tried t3 and NDT - but as I had not resolved low vitamins and adrenals first I found these didn't work. Personally doing better just in Levo, having gone gluten free - this is improving vitamin levels, but also supplementing where neccessary )

    Have your vitamin D, b 12, folate and ferritin levels been checked recently.

    Feeling drunk/seasick can be low B12, or even gluten ataxia.

  • yes, ^^ my reply to radd lists what i have been taking and doing all the recommended things BUT i have glutened myself in the last 4 days! I'm not coeliac but went gluten free 3 weeks ago after reading loads into the link with autoimmunity and gluten but i failed miserably after making a friend a birthday cake and me eating lots of it even though i knew it had flour in :( so stupid and i didn't put the 2 together but it totally adds up thinking about it! like you ay, it's not always obvious because i don't get chronic diarrhoea or cramps but this intense vertigo has been since gluten. tut!

    i have been supplementing B12 for a few weeks now so would hope my levels are improving.

    back to strict AIP diet and gut repair then. poor gut!

  • Hi purple juicy I also have vertigo it started about six years ago and have been hypo for 20 years now, mine would come on me out of the blue and they would last 6-7hours, could I make a suggestion I stopped drinking caffeinne altogether and thank God I haven't had an attack in over 2 years good luck it's a horrible experience I wouldn't wish on anybody

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