Recently attempted another crack at taking T3 without too much success.
In between times, can’t be absolutely sure exactly when, I have developed a new symptom I would like to check to see if anyone else has experienced similar.
Two years ago after commencing with a new prescription of levo at 75mcg, I developed pulsatile tinnitus. This noise becomes pretty overwhelming when T3 not going well BUT this time, before trouble, I noted that my hearing improved. Fab! However I have also noted a ‘hardening’ or ‘tightness’ of muscles or glands under my chin, working it’s way up to the ears, sometimes painful like muscles spasming. I have so much trouble with muscles everywhere I am inclined to think it’s muscular, no matter the odd place! It could also be dryness from using a CPAP machine for sleep apnea.
Basically I am thinking if no-one has experienced similar this is a symptom I should be following up with a GP. (Yawn).
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I have had loads of problems with vagal stuff too and it definitely gets exacerbated by the T3. This is a huge problem. How do you tell the difference between ‘settling in’ symptoms which might pass and the symptoms just being ‘unhandleable’? I just wish I knew.
To some degree I was wondering if it was an overall improvement as opposed to a worsening. Tightening up flaccid muscles or at least structural bits that should be holding things together better. However they still can’t do it correctly as the muscles also do not know how to ‘relax’. Typical hypothyroid way of going about things. Thanks for picking up on the thread. I will leave it a bit longer. It’s the hardening feeling I was concerned about. Perhaps developing something on my thyroid. Oh dear no wonder we are not welcome patients!
Do you do the things some people recommend here - I am sure you do, because I know what a mission to re-align your health and treatment you are / have been on - of cutting your thyroid pills up and taking them gradually through the day?
I take one big dose in the morning now. I used to take it all at night. Little and often is my next step.
I try to reasonably take all advice onboard. However I have clearly got ‘blind spots’. I don’t always see it in the way it has been intended by the writer. Everyone so wants to help, that’s absolutely fab but I think I can’t always take it in properly. Only today SlowDragon wrote me a piece about what I look like I have been doing wrong. It’s familiar but I don’t think it’s been written to me before. In marketing don’t they say something like someone has to hear something X number of times before they actually hear it? I just hope to heck I have heard it this time - properly.
Before I added hydrocortisone in, T3 used to give me the most horrific squealing, yowling, screeching, screaming tinnitus. It would only lower in pitch if I got rid of the T3.
Mine gets louder due to aligning with my poor heart being turbo charged by the T3. Excuse my ignorance DFC but is hydrocortisone applied to the skin? I think this can be bought over the counter without a prescription. Is this the stuff?
Definitely still taking it. I complain loudly but I remember clearly what I was like before taking it. No choice. Can’t make up my mind what’s worse, the cruelty of hope brought on by diagnosis and/or the repeated crashing disappointments of treatment. I work on a system between denial and hope. It gets exhausting. Don’t mind me, just dealing with another low point. SlowDragon has explained something fundamental to me today, which I have been entirely ignorant of somehow. So I feel I still have a direction.
Just to say ….it took me two years to creep Levo up from 75mcg to 125mcg under care of endocrinologist …..and I still had to take propranolol to stop anxiety/palpitations
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Only when I cut gluten out did I manage to get off propranolol (was on propranolol 19 years )
I have pulsitile tinnitus as well . I just try to ignore it when I go to bed. I also had neck and jaw tightness when starting T3 but that has passed now since I started in February ( I think that’s when I started T3) 🙄
SarahJane that’s very interesting. That sounds enough like my neck and jaw stuff to stop me being concerned for the time being. Normally my tinnitus is drowned out by my CPAP machine at night but I had to drag out a white noise machine (I used it before the CPAP for some sort of peace) whilst the palpitations and tinnitus went bonkers. Thank you for the info/experience. Very helpful. I will highlight this reply to HowNowWhatNow so she can also see your reply.
People who take cocaine seem to do funny things with their mouth and jaw, too.
I wonder what part of the brain / other systems levothyroxine / T3 (or cocaine, but not in my case) is activating, to produce these ear and neck / jaw symptoms.
OK that’s interesting too. Re: cocaine, my cardiologist (back in the day) told me my heart symptoms were the same as cocaine users got. My fear of drugs perse, mean I would never contemplate using street drugs.
Just an aside, I was Googling for something else and I came across an instruction booklet written by my cardiologist (written 2008) for what looks like junior doctors doing their cardiac six months on the ward, or whatever. She clearly talks about heart symptoms and thyroid. Although this was six years after her attempts to help me. It’s right there in black and white. If I recall she also talks about heart attacks with no blockages in the arteries. (MINNOCA). It’s amazing what a difference six years make. Still no comprehension from GPs etc. However as the guidelines even yet, say no treatment for subclinical hypothyroidism (and we know even outrageous symptoms still get you nowhere). Even now there is a veil drawn over medics faces when this is mentioned. So like you I wonder where this pit of knowledge disappears to when it’s actually needed? E.g. A&E. In women ear neck and jaw symptoms are where they experience symptoms of heart attacks AND I am not suggesting that it is the case here. Just an observation.
Whilst I am not happy you have gone through this too, I am kind of grateful to know someone else has experienced similar. It’s Sh1t but it’s important to my sanity. Even recently I have gone through this a number of times and still nobody seems to make the connections. IT’S THYROID. Thanks.
We have a lot of well-being / not so well being overlaps, you and I. I have a reserve of latent cunning.. to use only in times of abject need. Without it, I would be on the scrap heap. I suspect you have your moments too!!
Mostly I have not been too bad until this episode of attempting T3. I have managed much longer this time but SlowDragon has fired a shot across my bows which has kind of stopped me in my tracks. A clear explanation! No doubt until the next question comes up.
The doctors always say my ears are waxy - since becoming hypo and even more since taking T3, when it became a major problem - but the wax is deep inside and olive oil etc doesn’t seem to loosen it.
Definitely TMI for some, but since we are sharing …!!
Yup, I get the pulsing tinnitus when I'm undermedicated. Rightly or wrongly, I put it down to the edema and everything being swollen. I even called out the Council's Environmental Health Officer at one point as I was convinced that it was something external. That was a little bit embarrassing and it was them who quite kindly suggested that it was, literally, all in my head. It does clear up when my levels improve.
I also get horrible jaw and face pain / numbness and associated migraines on T3, but in my case it's because I'm not on enough and I need to increase my dose. Which is proving mostly impossible due to intolerance issues.
I think you could be very right in your thinking re:oedema. I remember when I lived out in the country I used to hear what I thought was a shovel digging into stoney ground in the dead of night. Eventually it turned out to be water dripping into the loft. That was around the time my symptoms began to ramp up after I had my children. I said elsewhere that I thought my hearing has become more acute recently, as has my sense of smell. Hearing and smelling things no-one else seems to. I wonder what that could be construed as ……..?
Regarding hardening and tightness of muscles, I get this. I've had this intermittently since childhood. My muscles will tighten up, I can consciously relax them, but as soon as I stop thinking about them the muscles tighten up again.
I have found out by experiment that, for me, it is helped by taking potassium supplements when needed.
However, since potassium can be dangerous in overdose anyone trying it should try increasing their potassium levels with food first, and supplementing should be a last resort and kept to a minimum.
The supplement I take is potassium bicarbonate in powder/granule form. I take a level quarter teaspoon of it in orange juice. I will also add a few granules of rock salt i.e. less than a level quarter teaspoon. And I don't take it every day.
I developed Pulsatile Tinnitus shortly after my first Covid jab, and wasn't sure if that had caused it.
However now I think it is thyroid related.
I was referred to an ENT clinic, who couldn't find an obvious cause.
I had a facial MRI scan which revealed nothing.
During this time my health was rapidly declining, and eventually the thyroid scan I had for some nodules, revealed a 'thyroiditis', then a blood test showed I had high antibodies.
At this point I couldn't say if thyroid meds help with my tinnitus, as I still haven't started Levothyroxine, as my TSH isn't high enough. (T4 and T3 are low but GP not interested).
Anyway I have developed extra fat/water in various places on my body, and wonder if this is pressing on nerves and causing the tinnitus.
I do also have an incredibly stiff neck and shoulders plus TMJ so maybe it is that, honestly not sure, but you're not alone!
You are not kidding Justine_Case. If only some proper research was done around this unusual condition. It seems that if you are not subject to it, you can’t find anyone interested. We live in despair of our multitude of symptoms.
From your description you sound subclinical. You have my sympathies. Being considered subclinical is truly awful. I must have been subclinical for years. First test showing problems twenty years ago (ignored and not informed) but SC for so much longer. If your symptoms are bad they are supposed to consider trialling levo!
I do also have an incredibly stiff neck and shoulders plus TMJ
There have been instances on the forum of people getting benefit from vitamin B12 supplements for TMJ.
And for anyone with hypothyroidism of any kind, who can't get a diagnosis, the first self-help thing they should be doing is optimising their nutrient levels.
The ones we mention on this forum are :
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
It is not a good idea to take supplements without testing. Some nutrients can be toxic in overdose. And note that doctors think any test result within range is "fine" or "normal" which is definitely not true.
Just as an example :
There is a huge difference in how well a person will feel with a ferritin result of 15 and how well they feel with a level of 100. But we have to be careful - iron is poisonous in overdose. So testing before supplementing in many cases is essential.
Another thing to be aware of is that supplementing should be done with the correct form of supplement to maximise the chances of benefit.
So, for B12 we would usually suggest that people take methylcobalamin not cyanocobalamin.
For folate, folic acid should be avoided and instead they should take methylfolate.
I know your reply was for Justine_Case but you made me check my folate supplement again. I remembered seeing the ‘don’t get folic acid’ guidance so I specifically avoided. Anyway on checking my ingredients it says Folate (5-MTHF) but front of label says Folic Acid 400ug. Quatrofolic. So although I am thinking that’s Ok, is it?
I do not know how to link to products. It’s called Vegavero Classic. Folic Acid. 400 ug. Quatrofolic. 120 capsules.
I just checked B12 and pulsatile tinnitus and there is a connection. I think my levels have fallen (but Medichecks changed their range so not absolutely sure) so I have ordered more of that to see if that will help.
I am taking so many supplements now that it’s virtually a meal on its own.
It is very unclear, but I wonder if there is a language barrier of some kind. Or perhaps Germans aren't so aware of the issue with folic acid and folate.
I think the product is Quatrefolic which I've never tried myself, but I wouldn't put any money on it.
That’s definitely it. Thank you. My poor head at the moment. Fortunately from my blood results this one looks ok. Now on a mission with the B12 trying to tone down the pulsatile tinnitus. The more out of whack my medication, the worse it is. Luckily the CPAP machine helps to drown it out when attempting to sleep.
I had severe tinnitus some years ago, and it was so bad that it made me suicidal. I'm also very hard of hearing and will probably be completely deaf within five years or less.
I was advised by my local NHS Audiology Department to consider using a gadget called a "sound relaxer".
I bought one, and also bought some pillow speakers as well.
These are the pillow speakers I bought - they do work but they aren't high quality. I haven't found good quality pillow speakers and I'm not convinced such a thing exists.
It was very helpful but very expensive (the price has gone up a lot as well). It had lots of sounds that you can put on, and they are mostly very relaxing. Luckily my husband didn't object to the sounds it made.
One thing I did before spending a single penny was to experiment with a "proof of concept". These links might be helpful to see how you get on with sound to mask your tinnitus :
For my experiments I used an old ipod with a very cheap bluetooth or usb speaker, and when it helped I bought the fancier gadget and pillow speakers. Typical sounds people find helpful :
Rain, waves, trains, thunder, wind, a brook and others.
Also white noise or brown noise or pink noise. (Personally, I hate these but they seem to be popular.)
Please note that none of these sound devices are supposed to be loud enough to drown out your tinnitus. They are supposed to be slightly quieter than your tinnitus and you have to turn your attention to the sound you like hearing, and your brain should learn to ignore your tinnitus noises.
All of this worked for me and I no longer need to listen to these sounds, even though I still have quite severe tinnitus.
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