Hi im struggling with a lot of symptoms at the moment that doctors refuse to take seriously and are telling me it’s fibromyalgia or anxiety. I have had so many MRI’s and random tests for a variety of problems and seen almost every specialist in the hospital!!
My most frustrating symptom at the moment is this blocked feeling down the left side of my neck and ear, it started about 2 years ago but has gradually got more frequent. It’s now there almost every day and I can hear a whooshing of my heartbeat in the ear and my hearing has got worse as well. I’ve had a brain and neck MRI recently and a Doppler test on my neck. I have trouble swallowing sometimes as it feels like food doesn’t go down properly and I have a lot of digestive problems. Chronic constipation which I’ve had for about 6 years and nothing seems to help it.
My other symptoms are very achey and tender all over, lots of muscular type pain, shoulder pain, headaches and foggy feeling. Can’t concentrate and bad memory. Very dry skin and sometimes itchy as well. I feel tired quite a lot, it takes me so long to get going on a morning.
I’m really wanting to know if this sounds like it could be related to hormones or not. I should mention I’ve had stage 4 endometriosis as well. I have been tested for thyroid before but was told it was normal. Not sure if the left side blocked feeling could at all be related to hormones as nothing else is showing up there and it’s drivinf me mad with the heartbeat in my ear.
Thanks
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Nickster20
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Yeah I have heard this before. Had this problem with my iron levels which the GP keeps telling me are fine yet my acupuncturist says they are very low ferritin levels. My vitamin D levels were undetectable about a year ago!!
My thyroid results are still at the doctors, can’t seem to find them but it’s about 18 months since they were done. Going to the GP on Friday so I’ll ask again for them testing.
Just wondering if these symptoms sound related to thyroid at all? Not sure about this pressure feeling in the head and blocked ear and pulsating.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Frequently GP only tests TSH or TSH and FT4
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Will try and get the GP to test those when I go on Friday, although they never want to when I suggest things. Not sure the blocked ear and heartbeat sound is connected as can’t really see it on the symptom list.
Get blood tests done privately. I do Blue Horizon ordered on here. I also join the waiting for blood draw group at my doctors - they do not charge but give me the sample which I post !!
Hello I had that whooshing last year! I heard it in my left ear, it would whoosh loudly every heartbeat. I started taking B12 and it went away in about 2 weeks. I have had swallowing problems for 7 years now, I can’t swallow solids only liquids. As far as I can tell it may be caused by my thyroid, low b12 or perhaps thiamine. I haven’t been able to solve that mystery yet. Also terrible constipation I have to use laxatives, I’ve been slowly taking more thyroid hormone seeing if it will help that because I have many hypo symptoms at the moment. Good luck.
Wow learning so much and not even sure if this is my problem yet!! Funny that so many symptoms are similar though. Think the not knowing is the worrying bit, hate that nobody can ever tell me why I have all these strange things. They’ve found a catteract, swollen lymph node and a nodule in my vena cava which nobody can explain any of them.
The whooshing sound is annoying isn’t it. Did it get more noticeable in retain positions? Take it you did a blood test to discover you need the B12?
I took a urinary MMA and it was high so I knew my B12 was low. The last blood test I had was a year and a half ago and it actually showed 1600 so docs told me to stop taking but I kept having symptoms so I finally ordered myself a urinary MMA online and it showed high which confirmed my thoughts. It was most noticeable when I had my head on my pillow or when I leaned over.
Yeah that’s exactly when mine is at its worst. The doctors don’t believe me though and think it’s anxiety. The hearing is quite faint in that ear though so not sure how I’m imagining that!!
Being really naive here but what is a urinary MMA please??
Methylmalonic acid, when your B12 is low it is high in your urine. Nothing else raises it except a B12 deficiency, so it is definitive. My test cost 35$ I went to a local lab and in 2 weeks I got the results and then knew I had a b12 deficiency
Anything and everything can be - and probably is - a hypo symptom. Either directly or indirectly. Being hypo can cause you to become deficient in many nutrients, due to low stomach acid, and nutrient deficiencies cause a lot of symptoms - that's what I mean by 'indirectly'. So, nutrients need to be tested along with thyroid hormone, and supplemented if suboptimal. If they are not optimal, the body cannot use thyroid hormone correctly. So, it's a vicious circle.
Doctors think that our symptoms are 'nothing to do with your thyroid', because they do not know hypo symptoms. Oh, they may know about weight gain - sometimes - but the down-side of that is that they think all hypos should put on weight, which is not the case. So, presenting out symptoms to a GP - or even an endo - doesn't always get us very far. We have to nudge them in the right direction. And, they right direction is doing full thyroid hormone and nutrient testing.
I’m pretty good at demanding things at the doctors now as they have ignored me so many times.
Do you think it’s worth asking them to do all these tests or am I better going privately? I’m seeing a functional doctor soon so I imagine they could do it as well.
It's very unlikely that your doctor would do all those tests. I don't know what a functional doctor would do, they're a law unto themselves! And, even if the doctor did order all the tests, it's doubtful the lab would agree to do them - the lab trumps the doctor every time! So, might be better to get them done privately.
Thought they would do them so I clearly have no idea about this. You not a fan of functional doctors?! It’s not cheap so I’m a bit unsure about going but I’ve heard great things as they looks at symptoms as a whole.
No, frankly, I'm not a fan. I've never seen one myself, but I've read so much on here that puts me off seeing one!
Yes, I know they look at the body as a whole and take symptoms into account, etc. But, they do not appear to know that much about the thyroid itself. About how it works, what thyroid hormone does, how to treat, interpreting blood test results, etc. And all that is essential to successfully treat a hypo. They are likely - from what I've read - to over-load you with dubious supplements and believe that all you need to do for a thyroid problem is throw iodine at it - which couldn't be further from the truth. They may be great at some things, I don't know, but I wouldn't trust my thyroid to one.
Conventional doctors, on the other hand, don't know much either! They do not understand the necessity for all those blood tests, the results of which they don't understand, anyway. They know little about thyroid and nothing about nutrition, but rather than flood you with supplements, they tend to think that vitamins and minerals are nothing to do with anything and totally unimportant and unnecessary. We're between a rock and a hard place, really. No wonder so many of us end up self-treating!
This is so frustrating!! Really don’t know where to go next with all this. Was really positive that a functional doctor might be the way forward as every GP and endo I’ve seen have been useless and manage to make me feel so daft.
Every GP and endo I've seen have been useless, as well. Which is why I self-treat. The reason they make you feel daft is to cover up their own inadequacies. Seen it too many times to be taken in anymore.
Of course, what I've said above is just my own opinion, since you asked. Other people possibly think differently. But, I always think that people should be aware of what can go wrong, so that they are prepared - forewarned and all that - and not just blindly swallow everything the functional doctor tells them or prescribes. And, who knows, you might find one that actually knows something about the thyroid.
Without reading the other replies first, those seem to ALL be classic symptoms of hypothyroidism! There could be other causes of course, but taken all together...
Exactly! Doctors like to treat every symptom as a separate disease (because they know nothing about symptoms and have not been taught to 'join up the dots'!). Hypo symptoms are non-specific, it's true, but which is the more likely scenario, that you have 31 diseases with one symptom each? Or that you have one disease with 31 symptoms? I know which one I'd go for!
I'm not being taken seriously either. Hashi/ hypo for 2 years and currently 13 weeks pregnant. I must say, it feels like it has 'eased off now'. I feel like I've been losing my hearing in my left ear for over a year. It's not all the time, and cant work out any triggers, but I do get a gushing/ can hear myself breathing as if I'm under water or a whooshing sound which blocks everything else out. My right ear... no problems. Not good as a musician, but I've just been dismissed and told it's anxiety or in my head etc. No help at all. Hope you get a result/ answer soon. Best wishes
Thanks. Have you been diagnosed you mean? The left side of my ear and neck feels blocked constantly at the moment and the hearing has been getting worse the last month or so. There is also neck pain at the back at the same side and down my back.
Hope the pregnancy is going well. Best wishes with it all.
Have been diagnosed with Hashimoto thyroiditis. Basically hypothyroidism. Nothing been diagnosed regarding my hearing. I was sent for a hearing test, and didn't have the whooshing effect/loss at that exact time, so I came out with near perfect hearing almost 100% she said. Then I said 'until it goes down to 50% with no explanation'. I have been referred to ENT but the GP laughed at me and said there was nothing/ no reason and I was making it up. She said it could be Tinitus, but it comes and goes. Sometimes I'll have it many times a month, others I completely forget. It has to be linked to my thyroid. Strange it's the left side. I had neck pain and trouble swallowing as well. I used to say/ joke I felt like I had a 'fat neck', However, the feeling may have been due to hypothyroidism getting worse. Maybe you could get thyroid TSH and more importantly the antibodies checked? Must say, now my TSH is the lowest it's been I haven't been having these hearing issues so frequent. Best wishes
Yes, I'm on 150mg of Levothyroxine. I've just finished 3 months of predisolone (20mg steroid tablets daily) as well so maybe that has made a difference. I understand it's supposed to keep your TSH down.
See if you can get a thyroid blood test done including antibodies. I honestly couldn't figure out when/ where/ what the trigger would be or when I would just lose the hearing etc. It's been fine for 3 months. In fact, I think I've only had it once late one evening. I do have an apt with ENT at end of March I think. I'm almost certain they won't find anything or a link. Also, not sure they could do any scans whilst I'm pregnant anyhow. Hope you get an answer, or some suggestions as when it first started and was quite frequent I would get really depressed and tearful etc. Not good for a musician when you feel your hearing is failing and not just that, you have to work extra hard to concentrate etc, as you can hear whooshing and white noise which prevents other ear hearing 100%. I've had times when I've had to physically face someone and look at them when they were talking as I couldn't make out what they were saying. I wouldn't wish this on anyone. Best wishes x
I've had a few episodes recently of feeling (usually for no obvious reason) that my ears are suddenly blocked - much as you get when descending in an aeroplane or even driving down a steep hill, or if you blow your nose too hard. But it disappears quite quickly.
Hearing blood rushing in your ears is probably normal - usually hear it when you lie down. But maybe hypo makes it more noticeable? Tinnitus and hearing loss are down as a possible hypo symptom though.
Thanks. Yeah I suppose that’s how my ear feels but always the same side and it’s gradually got worse where I can’t unblock it at the moment. Got a lot of sinus pressure with it as well.
This is ridiculous isn’t it!! My trust in GP’s is pretty low at the moment. It took 5 years to get diagnosed with endometriosis after being told it was all in my head!!
Dr chaterjee is amazing. I’ve watched a few of his videos and actually tried to see him last year when I was at my wits end!!
Same here Nickster20. No trust at all. Took 7 years to reach my endometriosis diagnosis. Total hysterectomy required. I still have 'hypochondriasis' on my records from that horrific period (pardon the pun!). I blame my demise on the fact I had endo' and feel it's been a downhill slide since....I have been diagnosed with Behcet's.
I also have low end TSH Low T3 Low T4 and feel there is still more and perhaps something else amiss. My records always state 'satisfactory' (never normal) no further action re- my thyroid results. I have I read that this might indicate a pituitary problem? I requested a full thyroid panel and was point blank refused. Twice! I have since developed tachycardia, high BP and numerous other maladies. It's the Behcet's, apparently! I never ever suffered with high BP. Always low end.
I too have had trouble with ears on and off for the past couple of years. My problem it seems, a buildup of ear wax - removal (done by practice nurse at own surgery) last week. Was informed my ear canal is somewhat narrow but, it could be due to many things, allergies being one of them. The pressure in left ear and down into neck less bothersome. Hoping this is the answer. Always asking self if new symptoms that arise are autoimmune related
Frustrating isn’t it. I always put everything down to endometriosis but not sure all these random symptoms can be that!! My bowel was stuck to my womb pre-surgery and I’ve had constipation every since. Wonder if a lot of my digestive iserues are down to the endo.
Your ears don’t get the heartbeat sound and deaf at all then? Has to be hormonal in some way or another surely. My left ear is constantly blocked and feels strange.
Hope the hysterectomy worked for you and the pain has gone now, I know it doesn’t for a lot does it.
No, I don’t experience the heartbeat sound but I do get a very muffled feeling. And, it’s almost as if my ears are like speakers whereby one will suddenly go deaf, and then return to normal -only for the other to do the same. My left ear is still bothersome in spite of being syringed. I am still experiencing a funny sensation on the left side of neck. Swallowing makes it spasm. Feeling dizzy and lightheaded. Trying to get an appointment.
My hysterectomy did work out - thank you! Almost instant pain relief. I am now 20 years on - but I do feel having ovaries removed has contributed to one or two hormonal issues. Who knows?
I hope you get to the bottom of this ear problem. I will be popping by to see if you have any luck getting some answers.
I don't have fibromyalgia but Lupus. I have had problems with both of my ears being blocked. Have you seen an ENT doctor? I had to see mine and he had to suck wax out of my ear. It got really bad one time that he had to numb my ear and go in to clean it out. It can cause serious damage if not taken care of. Don't use qtips in your ears! It can make it worse by pushing wax farther into your ear. I felt so much better after the cleaning. Some people have extra wax build up. Please see a Ear, Nose, and Throat Specialist. I hope you feel better!
Thanks. I have seen an ENT last year and they said everything is fine?? There was a lot of wax so he cleaned that out and I had a hearing test which was 100% at the time but the deafness hadn’t started then. Due to getting headaches and the blocked feeling he did a brain and spine MRI as well. This was a few months ago now but surely I don’t need to have it all done again?! It’s knowing what to do next isn’t it.
The endo I saw last year was a specialist in diabetes so I would have thought he would have suggested this is a possibility?? I will mention it to the doctor though.
For learning how to cope with ordinary tinnitus (if you have it), I found sound therapy very helpful. It isn't a cure, it just makes people more able to tolerate the condition.
If you want to test it out for yourself then Youtube has lots of very long videos with relaxing sounds that you could try - search for "relaxing nature sounds".
Thanks. Hoping this isn’t a permanent feeling in my ear as it’s really not nice and makes me feel a bit funny. However, I feel look into these, thanks.
Have you been diagnosed with thyroid problems? You have exactly the same symptoms? Was extremely low on vitamin D last year so had to take a lot of supplements but I’ve just asked my GP for another blood test to check.
I can see your posts/ results were from a while ago now so hope you've managed to get a diagnosis and the ear issue has gone. But in case anyone else may benefit, I also had the same issue although mine was more like classic high pitched tinnitus but sometimes was similar to yours. I won't bore you with how I found out but I discovered guar gum that was in my coconut milk was the issue. Swapped coconut milk and the issue has all but disappeared.
Hi did you discover that was causing the problem? I eat so clean, no dairy, sugar or wheat and all natural ingredients since seeing a functional doctor. However, the last few weeks I haven’t been strict so I’m wondering if food is connected. I’d be really interested in exactly what symptoms you had before stopping the guar gum?
Symptoms too many to mention but I'm slightly hyper thyroid and have the fatigue, brain fog, aching joints, weight gain etc but also just been diagnosed with PCOS, insulin resistant, menopause (early onset) etc. The tinnitus I had disappeared when I swapped to a coconut milk that doesn't contain it. Hope that helps and you're symptoms are improving.
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