Menieres disease making me ill or suppresses tsh

[JBL312]

Re my last post, all indications are that I have menieres disease; dizzy, tinnitus, nausea, vomiting etc, but my gp can't understand why I'm so exhausted too and has suggested it's because of my suppressed tsh. I have had a blood test and will attach them (can't upload more than one so will put the rest in comments) and I would really appreciate any feedback. Many thanks as always.

[JBL312]

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[Sparklingsunshine in reply to JBL312]

Vestibular issues are exhausting, being dizzy and trying to maintain your balance and naturally being anxious because dizziness is very anxiety inducing, tax your brain massively. I have vestibular migraines and these are extremely draining.

Balance is something we all take completely for granted until it becomes an issue. Something that you never had to think about, ie being able to walk, now requires a lot of concentration and effort. Fatigue is extremely common across the vestibular disorders spectrum.

[JBL312 in reply to Sparklingsunshine]

Thank you that makes sense.

[greygoose]

TSH itself does not cause symptoms. It is a chemical messanger between the pituitary and the thyroid to tell it to make more or less thyroid hormone. That's about all it does. It's the thyroid hormones - T4 and T3 - that cause symptoms when too high or too low - especially the T3. Your T3 is not too high, but could be a bit on the low-side for your needs.

Have you had ferritin tested? I can't see a result. If that is low that will cause fatigue.

[JBL312 in reply to greygoose]

I don't think ferritin was done.

[greygoose in reply to JBL312]

Well, you really do need it done. It could very well be low.

[cabro2]

Unfortunately, it’s both (the voice of experience), and it’s a double whammy. I’m so sorry you have Meniere’s. It’s wicked and exhausting. A suppressed TSH with today’s endocrinologists means your FREE T4 is high, which revs up your metabolism in an unnatural system-wide way, which includes even your heart and your bones. That’s also exhausting. I would want to know not only my FREE T4, but also FREE T3 (with reference ranges) for starters. Hopefully, with time you will be able to better balance those FREES and even get beyond the need for suppression, particularly suppression with only high FREE T4. Thankfully I was able to, with time and DTE’s, like Armour Thyroid and NP Thyroid.

I recently saw a specialist for vestibular rehab. It has helped, and it was not tedious or time consuming. Maybe that’s something to consider.

Wishing you all the best.

[Sheryl5013]

vestibular issues can make you really fatigued …I have an AN and can feel completely drained at times and on top of thyroid issues it can be a nightmare.Good luck with everything and hope you start to feel better soon 🤞

[Brightness14]

Have you had many various tests for your diagnosis, if not it could be low FT3. do you get dizzy for hours or are you falling because you are sleepy.

[JBL312 in reply to Brightness14]

It's the dizziness.

[am111]

Your MCV is high and haemoglobin in on the low side. Generally, this happens when you have low B12 (and your symptoms are consistent with a B12 deficiency), but your serum B12 test shows a high value. Are you supplementing or were on supplementation recently? You could do an active B12 test, homocysteine or MMA test to confirm a functional B12 deficiency, but these will cost money.

[JBL312 in reply to am111]

I have monthly shots of B12.

[am111 in reply to JBL312]

Monthly shots would explain the high serum B12. If you have had these symptoms for some time, a monthly shot might not resolve all these symptoms, or take some time to resolve. May be you can try a daily B12 supplement, like 500mcg or 1000mcg/day alongside. In some studies, cyanocobalamin tablets have been found to be better than methylcobalamin tablets, so you can try those and see if they help. Note, however, that they might take a few weeks to start having an effect. Best wishes.

[JBL312 in reply to am111]

My gp has now said my B12 is too high and to stop supplenting. What do you think?

[am111 in reply to JBL312]

how soon after the shot was your B12 taken? B12 can be high after a shot. And are you on hydroxy, cyano or methyl shots? Generally, hydroxy and methyl will lead to an elevated serum B12 for a longer time than cyano.

There is no such thing as too much supplementation of B12. I still suggest 1000mcg/day of cyanocobalamin. In fact, given your problems, you can take 2000mcg/day of cyanocobalamin as it will act faster. With such daily supplementation, you won't need the shots anymore, which your GP is anyway not giving! Although there is no need to decrease, if you do want to decrease later on, note that many people aren't able to give up cold turkey and it is better to gradually reduce, for instance, from 2000mcg/day to 1500mcg/day for a few weeks and then to 1000mcg/day etc. Both me and my wife takes these and it resolves our B12 problems. A high MCV is a clear sign of B12 deficiency, so I do believe that you are B12 deficient, but even if you aren't it won't hurt.

[Batty1]

Exhaustion with Meinere's disease is not uncommon when your having and attack and I doubt a low TSH would be a cause for Exhaustion….. I have both Meinere’s and Low TSH due to thyroid cancer.

[Gilbo72]

Hi there,

I’m just going to add my twopence worth. Have you ever had covid?

I’m the same age as you, and last year I had covid. Got over that all ok. 6 months later, I was working at my computer, suddenly felt a wave of nausea, (I had been feeling very fatigued for several days), stood up and immediately fell over. I could not get off the floor for two hours. The room was spinning the nausea was atrocious. I was so scared I managed to ring 111 who got my GP to ring me back who prescribed anti nausea medicine, but it lasted for a week.

Since then, I have had two more episodes. They seem to coincide with very mild colds that I don’t even realise I am fighting. My GP said it was most probably some lingering damage from the covid virus in the inner ear which has now left me more susceptible to ear/balance problems with colds. He gave me some antihistamine type nasal spray to open up the sinuses and ear canal and sinuses and anti nausea tablets for any other attacks.

The last two episodes seem to be diminishing in severity. Although I do experience some ringing and weird helicopter noises/ butterfly sensations now and again.

As for suppressed TSH, mine is too. I am on combo T4/T3 yet both my free ranges are low and T4 is out of range, but TSH is suppressed. Before combo when I was on levo only my TSH was always suppressed, my T4 over range and my T3 under range.

I wouldn’t think the TSH or, more importantly, the T4 and T3 have anything to do with Meneieres It is more likely a virus / immune system thing.

Don't let the GP even entertain that idea! It is easy to think a thyroid problem is the root of everything, but you can get other illnesses too.

If you Google inner ear problems and covid, there is a lot of incidences out there. They say they don’t know what causes Menieres,, but again it could be any virus that causes inner ear damage.

I would be tempted to say to GP, I’m not here about my thyroid I’m here about my ear problem that is making me tired!

Hope you feel better soon. Good luck. It’s not nice I know. X

[JBL312 in reply to Gilbo72]

Thank you for your response. Yes I have had covid 3 times. It's interesting to hear your experiences x

[Cornwaller]

migraineagain.com/take-b2-f...

Have you considered riboflavin? It is, if I remember correctly, suggested in the NICE protocols and is thought to be safe.

[Cornwaller]

Also the Australian migraine hack. It is somewhat irreverent but worth looking at.

migraine.org.au/our_top_mig...

The sports drinks suggestion is thought by some to be effective through the taurine content of the drinks.