Ringing in my ears

[peskygnat]

What makes this STOP! It’s getting to me!

[SeasideSusie Remembering]

peskygnat

Tinnitus is one of the neurological symptoms of B12 deficiency and b12deficiency.info says it must be treated with B12 injections every other day until the symptoms stop improving.

[peskygnat in reply to SeasideSusie]

My B12 level is over 1000 now, & I asked about the benefit of perhaps more B12 injections. Hematologist said it will likely do nothing. Had low ferritin which could cause ringing. 8 IV iron infusions & while the levels all improved on the iron profile & are in the normal range, the ringing continues. Thyroid labs are also in the normal range. The endocrinologist is agreeable to trying a different form of medication. I currently take Synthroid & Cytomel. I did ask if perhaps I needed to be on the higher end of the normal range. He knows of the severe fatigue as well. He says my numbers are in a good place! Other suggestions?????

[overnighthearingloss]

I would also suggest that you don't hold your mobile phone close to your ears. But that's me being precautionary these days after total hearing loss in my regular phone ear overnight. As my username reveals.

[peskygnat in reply to overnighthearingloss]

I am noise sensitive. Rarely put my near my ears. Use speaker & make my family crazy.,

[Saya85]

Magensium (oxide ) for tinnitus

And b12 if pulsatile tinnitus

Two of the easiest things to try and fix. Both worked for me, my brother and a few family friends

Obviously if its an actual inner ear problem then it won't help but many of us feel these two things help

A few other things people have suggested is no caffeine, no dairy

Hope you get some relief

[islandlass in reply to Saya85]

Could you tell the difference between tinnitus and pulsatile tinnitus please. Thank you.

[humanbean in reply to islandlass]

Tinnitus is a ringing sound in the ears.

Pulsatile tinnitus is where you hear noises in your head that pulse in time with your heartbeat. It can get so loud that doing anything which makes your heart beat slightly louder or faster e.g. walking upstairs, walking up a slight hill, carrying shopping, may be enough to make you temporarily deaf because the pulsing noise gets so loud.

[busterboy in reply to humanbean]

I never new that one, many thanks indeed, PC playing up this end, had trouble getting back on the forum. Now to figure out which one I have!!!

[Saya85 in reply to humanbean]

I used to feel it more as a vibration - if I hoovered or drove i would feel a constant vibration and tuning fork type of ringing/vibration throughout my whole body

It would be enough to make me feel giddy as well as the typical noises and ringing of tinnitus

[piovanelli in reply to humanbean]

I have both!?

[humanbean in reply to piovanelli]

Me too.

[holyshedballs in reply to islandlass]

Tinnitus is a term for any noise that is heard by a person that is not generated outside the body. It can manifest as a tone usually around the 1,000Hz frequency. It can also manifest as a washing machine like sounds, crashing waves or Christmas Carols or other songs. The patient hears songs because the brain rationalises unusual stimuli as familiar sounds.

It is not a disease but a symptom of an underlying condition such as hypothyroidism , side effects of certain drugs or from damaged hearing.

Pulsatile tinnitus is usually the sound of the patients blood as it pulses through the veins and arteries normally in time with heartbeat, hence the name pulsatile.

[helvella Administrator in reply to holyshedballs]

As a child, I would frequently find the sound of my own blood pumping very disturbing. I hated it.

But I also had high pitched tinnitus.

At some time, and I really don't remember when but a very long time ago, the pulsatile tinnitus disappeared, but the high pitched tinnitus didn't. It varies, and has at times temporarily abated, but it always comes back.

[peskygnat in reply to Saya85]

Have pretty much eliminated dairy. I could try to rlinste caffeine. Already on B12 shots. Take magnesium malate. Don’t know what the other form of magnesium is. Will investigate. Thanks.,

[SlowDragon Administrator]

As you are already diagnosed with PA, you should be given loading doses of B12 injections

Has this happened?

Are you also diagnosed with thyroid disease?

Loading doses of B12

healthunlocked.com/pasoc/po...

Official Guidelines on B12 and folate

hey.nhs.uk/wp/wp-content/up...

Also Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

B vitamins best taken in the morning after breakfast

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Also need vitamin D and ferritin tested

[peskygnat in reply to SlowDragon]

I’ve been doing B12 shots for years! Had to switch drs. New dr said B12 levels are good, you can stop the shots. I was up around 2000, but was feeling like crap. Exhausted 24x7x365. So I started 5000mcg sublingual just to see if it helped. It did not.

I am hypothyroid. Not Hashimotos. Take Synthroid & Cytomel. Brand name on both. Genetic was making my hair fall out like crazy! Endocrinologist tells me he is very pleased with my numbers. I tell him I have ZERO energy but he says my meds are fine.

I’ve had this ringing for awhile now. Most of the time I can ignore it, but done days I feel like I’m gonna go mad!

I had an endoscopy that turned up the parietal cells. Next came the labwork. Antiparietal antibodies and elevated serum gastrin. Definitely PA. So back on 1000 mcg IM monthly. I stopped shots in Aug/Sept. My last B12 was 917. Pharmacist thought I’d be ok going back to monthly IMs in Nov as I hadn’t stopped for very long & my level was still above the normal range. Dr didn’t say anything about loading doses. BUT THIS FATIGUE IS RUINING MY LIFE! So I asked for the rest of the labwork. The ferritin, folate, TIBC, & Vit D weren’t done. Dr said I wasn’t iron deficient! She needs to read up on PA! She sent me to a hematologist. My ferritin & TIBC are low. Vit D was good. Folate was good. Rest of CBC was ok, but MCV, MCH, & MCHC we’re down in the very lowest “ normal” part of the range.

So I had to start iron infusions. 2xs a week for 4 weeks. Wait 2 weeks & labs will be repeated.

Nothing is turning up rheumatology wise. Endocrine considering some atypical polyglandular syndrome. I’m working with a holistic nutrition person. Taking lots of supplements, avoiding gluten, dairy & lectin. Want to stay away from antibiotics too but had grossly swollen glands & had to be on Sugmentin. Now have another UTI! Had to start Macrobid. I do have an elevated ANA. ?? med induced? It’s been elevated for awhile now. But this ringing is just aboutcthe last straw!!!

Thank scto all for the tips & advice! Appreciated tremendously!!!

[DotLeeds in reply to peskygnat]

The elevated ANA needs investigating. Did you also have an ANCA test? Vasculitis autoimmune conditions cause extreme exhaustion and GPA (formerly known as Wegener’s Granulomatosis) often involves ear problems.

[peskygnat in reply to DotLeeds]

I have had SOOOO MANY lab tests & these big assays, I’m not sure about that particular one! I will definitely inquire. Thank you. I stumbled upon a website for rare & unusual disease. There are SOOO MANY listed! It was frightening. I’m thinking most drs don’t know how to piece all of the complaints so many people have together! I’m seeing this with the drs I am using!

[ceramo in reply to peskygnat]

Chronic fatigue/ME - go to drmyhill.co.uk and/or read her books. Sarah Myhill seems to find her way round these endless problems better than anyone else.

Immensely helpful

[Hidden in reply to peskygnat]

Hi, you should go to stop the Thyroid madness site. They have this lab result page and one of the labs talks about Iron levels it was very interesting and might benefit you to read.

[peskygnat in reply to Hidden]

have had that book since I was first diagnosed.

[Portia1974 in reply to peskygnat]

Tinnitus is also a symptom of iron deficiency. So may resolve once your infusions have kicked in. (Takes approx 120 days for full effect of infusion to manifest)

[SlowDragon Administrator in reply to Portia1974]

That's interesting, never knew that

[SlowDragon Administrator in reply to peskygnat]

Ignorant GP.

B12 injections should never be stopped if diagnosed as PA

What level is vitamin D?

It needs to be optimal, around 100nmol (40ng/ml)

Magnesium supplements help many on here too

If trying gluten free diet it does need to be absolutely, strictly gluten free

[peskygnat in reply to SlowDragon]

Vit D is good. Take supplement for that too. I will NEVER stop B12 shots now that I officially have PA.

I know if gluten is the issue must be 100% GF. It’s sneaky thing, this gluten. When I say 75% GF, I mean I have eliminated the obvious, well known culprits. I’m still learning the variety of labeling words that probably mean GF. And it was not easy sticking to it over the holidays. I have eliminated a LOT! But I can do better & Im working on that. Rather than read labels & figure it out I’m finding it’s just easier, for me anyway, to eat while food, nothing in a bag or box. Solves the GF issue. But I love to bake. So experimenting with different flours & recipes hoping to find some type of bread that is yummy & GF. I’ll get there! No worries.

Thanks to all for advice & support. Very helpful. Good to know that others have had to search for knowledgeable drs & are trying to hang in there.

[Tequ in reply to peskygnat]

I have been reading a book called the 'Magnesium Miracle' by Dr. Carolyn Dean. It is amazing what Magnesium is required for in our bodies including heart, brain, neurological impulses, bone formation, calcium uptake. I have started taking supplements in December just before christmas, I have noticed a great imrovement in my fatigue levels, my breathing, my sleeping has improved, my brain function with recall and retention. Have a read you can get it on Amazon it really has helped me.

[helvella Administrator in reply to peskygnat]

Please post your B12 story on the Pernicious Anaemia Society forum.

healthunlocked.com/pasoc

It is wholly inappropriate to test B12 serum levels once established on B12, especially by injection. They will give you chapter and verse of current recommendations.

[Trigger88 in reply to peskygnat]

You will never have any energy taking any Synthroid. Change to NDT and you will notice a huge difference.

[peskygnat in reply to Trigger88]

Can you elaborate on that? I take Synthroid AND Cytomel. My understanding is that Synthroid alone is often not sufficient for some people. I asked about switching to the liquid form of Synthroid thinking with malabsorption issues it might be better for me. Dr said labs are good now. Leave things alone! I have also inquired about desiccated thyroid. He has pts would insist on it so he does prescribe it. He seems to think I’m good with the 2 meds I’m on. I tell ALL of these drs I have ZERO energy. Feels like they don’t get it or don’t care!

[holyshedballs in reply to peskygnat]

My current advice is that tinnitus is not normally curable but can be managed. Most sufferers I come in to contact with are advised to get a thyroid panel test and a Vit B12 test. I haven't heard of anybody being cured - yet. Most sufferers find that diversion therapy works best i.e. listening to something else to divert attention away from the tinnitus.

If anybody has found magnesium as one poster has said or anything else to work, please let me know.

[holyshedballs in reply to holyshedballs]

Tinnitus can be a side effect of certain medication such as

•loop diuretics (furosemide, ethacrynic acid),

•platinum containing medicines (such as Nedaplatin, Satraplatin and Triplatin),

•aspirin,

•Non Steroidal Anti Inflammatory Drugs (such as Ibuprofen or naproxin) and

•Aminoglycosides (such as streptomycin, tobramycin , and apramycin).

Tinnitus can be a symptom of the following medical conditions

1.Anaemia,

2.Hyperthyroidism,

3.Hypothyroidism,

4.Elevated cholesterol,

5.Diabetes,

6.Syphilis,

7.High-riding jugular vein,

8.Stenotic carotid artery,

9.Arterio Venous Malformations,

10.Aberrant carotid artery,

11.Arterio Venous Fistulars

12.Fibromuscular dysplasia.

13.Middle ear or inner ear abnormality,

14.Glomus tumour,

[peskygnat in reply to SlowDragon]

I told my primary all of the supplements the nutritionist suggested I take. Biotin is in the multivitamin. My hairdresser noticed how thin my hair was getting & said many of her clients my age take biotin & it seems to work. I tried it. It DID work. I wasn’t aware I should stop it prior to my thyroid labs. My TSH was elevated. I was told to skip my Synthroid on Sundays. Then I read something about the biotin! I mentioned it to the endocrine dr & he wasn’t phased by it at all! Again, he said my labs were great, no change in meds. My primary was the one who said skip the Sun dose of Synthroid!

It’s soo frustrating!

[JaninaWalker in reply to peskygnat]

Are you taking any Tylenol products for pain as that is a potential cause. I had that years ago but it went away when I was able to stop the pain medications as soon as I solved the neuropathy with supplements.. So look up natural cures for tinnitus in google and they also mention stopping whatever medication that may be the cause, if that is possible. It does require lots of study, so keep up the search. Don't expect miracles in only a week as healing anything takes time and consistent effort.

Are you taking any such medications that could be causing eardrum problems? Go to the Dr Oz site and look up tinnitus to find the video slip I saw many years ago.

Here is one article on his site

doctoroz.com/article/link-b...

[peskygnat in reply to JaninaWalker]

Thanks for the info. I do not take Tylenol. If I take 4-6 tabs a year that is it. I don’t think any of my meds cause tinnitus but I will look every single thing up!

[peskygnat in reply to SlowDragon]

Already do all of these things.

[Marz]

PA treatment is for life and should not be stopped. Another GP who is ignorant - remind him of the Guidelines sitting on his desk unread no doubt ... 😊

[Violetta25]

I've had tinnitus for about 38 years through damage caused by a virus. Gave me some hearing loss too. I haven't found anything to rid me of the ringing but have learned to zone it out so I don't notice it much.

[Hashihouseman]

I had this while I was increasing levothyroxine dose and I suspect it was something to do with an imbalance of thyroid hormone activity in the brain which has now cleared and I haven’t done anything different regarding vitamin B12! All supposition of course!.

[Hidden]

I have had tintinutis for over 20 years and it stinks...I found this product called "Lipo-flavonois Plus" I seen it advertised on TV decided to give it a try and for me it worked however some people said it didnt but I was desperate I would try anything once and I never used the amount they suggested I only took 2 a day....

[2122anne]

Hi i get a droning noise have had it a few years I moved a year ago and thought it went but no I don't think it will ever go away x

[sonship_quality1029]

My husband and I both have Tinnitus. We think it is environmental because we don't notice it very much or at all when we aren't in the area we live in. We have just learned to live with it.

We have different sounds. Like right now, I have a high pitch hissing that sounds like it's right in my head, not just one or both ears. Some times, I hear what sounds like crickets and then I also get the ringing or what we call pinging.

The more I pay attention to it, the more I hear it. We always have back ground sounds, such as our TV to drown it out some. A silent area really brings it about.

There is a web site that is for Tinnitus sufferers that has a lot of help for us. Check it out. Hopefully, there will be some information there that can help you. At the very least, there is all kinds of support.

[islandlass]

Ditto here - started months ago and it really is annoying but will try the 2 tips given below. Had been reasonably good before this but had dropped magnesium and replaced it with a combination of zinc, copper and magnesium. Dose may be too little so back to the drawing board. Hope you find something that works for you as it is debilitating and gets one down.

God bless.

[humanbean]

I've had tinnitus for decades. About 6 - 8 years ago it suddenly got substantially worse and it was driving me mad. I even considered suicide. I read up about the subject and found this site :

actiononhearingloss.org.uk/...

I tried sound therapy and bought a "tinnitus relaxer" and some pillow speakers. When I was in bed trying to sleep I could use the sound gadget I bought to distract me from the tinnitus.

actiononhearingloss.org.uk/...

The important thing to note is that the sounds coming from the tinnitus relaxer must not be used to drown out the tinnitus. They should be used at a slightly lower volume to the tinnitus you hear. Then you have to listen to the tinnitus relaxer and not your tinnitus. It takes practice but your brain learns to ignore the tinnitus.

I haven't used my tinnitus relaxer for several years now, because I'm rarely bothered by my tinnitus, at least while I am trying to sleep. You can use sound therapy in the background during the day too.

You can try sound therapy for free by using this site to create your own sounds :

naturesoundsfor.me/

Or you can listen to youtube videos of nature, wind, water and birdsong sounds that play for 8 - 12 hours.

[Eddie83]

Dr. Mark Starr discussed this in his book "Hypothyroidism Type 2". One of the things that causes tinnitus is long-term hypothyroidism. After you have been hypothyroid for 10+ years or so, the tinnitus will become permanent; return to euthyroid status after that will not stop the tinnitus.

[SAUK]

Definitely look into the cause of the tinnitus and if anything organic.

To manage mine I was referred to an Audiologist who provided me with a Audimed- white noise generator. It essentially plays white noise and teaches your brain to ignore the ringing. It is used only in waking hours. Did the trick for me, hardly use the aid or hear the noise now. Good luck!

[Trigger88]

Try Magnesium and B12. Also, add Liposomal Vitamin C for better absorption.

[Jas100]

Try a good quality sublingual Viamin B supplement. Works for me within 30 minutes. Make sure it’s good quality though. Good luck.

[Trigger88]

In my experience, any kind of Synthroid has horrible side effects. The only lasting solution is NDT with B12, Magnesium and whatever shows up in your blood tests. Change diet to organic and plant-based. Find an exercise regime that suits and you can change everything. The first thing you need to get comfortable with is owning the solutions and outcome.I can walk you through it if you are interested.

[Trigger88]

As I said, any kind of Synthroid has side effects. You need NDT which is balanced and natural. Then get the dose right. That would be the beginning of a solution.