Has anyone heard of suffering with an internal ... - Thyroid UK

Thyroid UK
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Has anyone heard of suffering with an internal tremor/nervousness?

yveh
yveh

I feel that it is like I have permanently overdosed on very stong coffee. Some mornings I feel like I have had too much alcohol the night before when I haven't. I am struggling to get doctors to understand. Mys TSH is normal and they can find no other problems. Now getting worried and fed up with the condition

36 Replies
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That was the main symptom I had when I was hyper with Graves.

You need to get a copy of your thyroid results so you can see exactly what your levels are, "normal" doesn't really mean much without the actual numbers.

eachpeach
eachpeach
in reply to bantam12

Same with me bantam12, it was one of my Graves' symptoms and felt so strange! Agree, you need T4 and T3 results and ranges as well as TSH.

Valarian
Valarian
in reply to bantam12

Me too it was awful. Eventually the tremor became visible.

Apart from possible thyroid causes could it be caffeine - although I’m sure you’re u with use know if that was the case - do you drink a lot of coke or coffee or even. I felt like that when I had Graves’ disease but years ago when my son was a teenager he ended up at the doctor and his shakes came from overdosing on coke. I get the shakes like that with very strong coffee and I had to use my blue asthma inhaler recently and got that sort of internal tremor, it felt really shaky and awful.

Hi, no more coffee and tea than I always have and mainly in the mornings, yet still like this in the eveneings. I don't drink coke my usual drink is water during the day . Thanks

I thought you would probably have thought of that for yourself but just mentioned it in case.

I always drink de caf apart from one morning a week when I go there a class and drink regular coffee. Then one day at the hairdresser he offered me a coffee, no decaf so on the strength of the one cup a week I have not affecting me I took his coffee - I know it was made in a machine but goodness knows what sort of beans he used because my body was still buzzing at bedtime.

Hopefully someone will come along with a better suggestion

What is your normal TSH?

yveh
yveh
in reply to Lora7again

2.7 the last time

SlowDragon
SlowDragonAdministrator

Can see from profile your dose levothyroxine was reduced considerably from 150mcg to 100mcg

Just testing TSH is completely inadequate

What was last TSH test result?

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 after dose reduction and especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Internal tremors and feeling jittery can be caused by having too little or too much cortisol (which is produced by the adrenal glands).

Having adrenal problems is really, really common in people with thyroid disease of any kind.

Cortisol can be measured using saliva testing. The best saliva test is this one :

regeneruslabs.com/products/...

Depending on your results you can get this kind of information from a saliva cortisol test :

healthunlocked.com/thyroidu...

Obviously results can be too high or too low or can fluctuate. But the above link just gives you an example of what to expect.

I think you should call your Dr and request a 9am cortisol blood test to check your adrenals. Cortisol is our adrenaline hormone. It could be too high. Adrenals and thyroid are closely linked. If they refuse you can get it checked privately. There is good advise on here on how to get it done privately. I had a similar problem except my cortisol was too low.

humanbean
humanbean
in reply to McPammy

Cortisol is our adrenaline hormone

Not strictly accurate... Cortisol is one of the two main stress hormones. Adrenaline is the other. People under stress would usually produce both. Problems arise when we produce too much or too little of either.

I have never heard of anyone trying to alter their levels of adrenaline, nor do I know whether such a thing would even be desirable (I suspect it wouldn't be but I'm only guessing), but changing the amount of cortisol we produce does seem to affect adrenaline as well.

Reducing my own (high) cortisol has appeared to reduce my adrenaline too. I've never had adrenaline measured, nor have I heard of anyone else getting it measured.

McPammy
McPammy
in reply to humanbean

Adrenaline works in the short term and cortisol in the longer term. I didn’t want to be too specific and just offering some advise to get their cortisol checked. I’m not a Dr nor an expert but I do have first hand experience of cortisol issues as I’ve suffered badly with it. Your adrenals produce cortisol I do know that. Cortisol is one of our hormones. If your cortisol is too low or too high they’ll also need a synacthen test to check if adrenals are functioning correctly.

Yep Im with last 2 posts. For me that internal tuning fork, humming, jittery, anxious feeling in the morning was very low cortisol. Its awful feeling. My cortisol was very low but my endo was unsure what to do, Iv never found a dr or endo who does! I was given 10mg hydrocortisone tablets which helped but as soon as i try and wean off it comes back with a vengeance. Get cortisol tested x

Liyaelize
Liyaelize
in reply to endomad

Do you take your Hydrocortisone at the same time as your thyroid medication or 4 hours away. Did you have to reduce your thyroid dosage or increase. I am on Synthroid and T3 by Mylan.

endomad
endomad
in reply to Liyaelize

I take all my t3 at bedtime and hydrocortisone in morning. My t3 dose is high 75mcg but have been on 150mcg but no additional improvement over 75. I have just had a reply from another lady who has suggested i increase my steroids and lower my t3 so as all this is trial and error i am going to set time aside to look into that and give it a go, iv nothing to lose.

I had internal tremors for a couple of years - they are horrible. When I finally got onto T3 and all my thyroid levels (and vitamins and minerals) were optimal, those internal tremors disappeared.

As SlowDragon said, get your FULL panel of tests done and post them on here for more advice.

Cuppaofcha
Cuppaofcha
in reply to TaraJR

Hey TaraJR, same for me, I get these tremors from being hypo, I have lowered my levo and they have started. Of course, they can from overmedication too if the dose too high.

TaraJR
TaraJR
in reply to Cuppaofcha

Yes there's such a fine balance to strike. We know that. But many drs don't!

Cuppaofcha
Cuppaofcha
in reply to TaraJR

Indeed! My own dr told me doctors have no clue about thyroid and rely on bloods way too much

TaraJR
TaraJR
in reply to Cuppaofcha

I suppose at least he was honest. But where on earth does that leave many thousands of us patients?!

Cuppaofcha
Cuppaofcha
in reply to TaraJR

If he can be a good doctor, I believe others can too. I think their training needs to change along with guidelines they need to follow. And it would be a bonus if they follow newest trends, research and have a pinch of empathy!

endomad
endomad
in reply to Cuppaofcha

I was paid by NHS & teaching university to give talks to final year med students about what happened to me, how my dr nearly killed me because he forgot my thyroid had been removed and he believed i was depressed, menopausal, and it was all in my head! in 2 years i didnt meet a single student who wanted to go into endocrinology, not a single one. Some were brave enough to say thyroid training is one afternoon in 4 years and altho they understood what happened to me was negligent they would stick exactly to the diagnosing rules, deny & dismiss!! they are the future of the NHS!!!

Cuppaofcha
Cuppaofcha
in reply to endomad

Awful! So sorry you went through it, my story is similar so I really empathise!

Someone from my partners family has become a doctor because of how a relative was treated by the medical system. Endocrinology didn't advance in decades, we are stuck in 60s with the TSH mentality

yveh
yveh
in reply to TaraJR

Gloucestershire don't do anything other than TSH I have been referred to Neuro. I think this will draw a blank and then I will be back asking for another referal or tests again. They have checked the vitamin levels which are good but thanks for all the info' on here and I now have other things to work. Bless you all

I felt like that when I had low cortisol and was running on adrenaline

SlowDragon
SlowDragonAdministrator

On a correct dose of levothyroxine ....TSH is often suppressed. It irrelevant...the most important results are ALWAYS Ft3, followed by Ft4.

There’s current ludicrous and completely incorrect obsession by GP’s to reduce levothyroxine to bring TSH up into range....that frequently leaves patients extremely under medicated with dire Ft3 levels

When very under medicated this means adrenal glands trying to compensate for lack of thyroid hormones.

Never, ever agree to any dose reduction based on just TSH and Ft4

Even if, in rare instances dose reduction is required it should be done in very small steps. Down by 12.5mcg maximum and retesting after 10-12 weeks. Utter madness to reduce dose by 50mcg....surprised your still standing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

EXTREMELY important to test vitamin D, folate, ferritin and B12. When dose of levothyroxine is reduced these frequently crash right down

Always do thyroid blood test as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test

Almost certainly need to test privately to get full results Come back with new post once you get results

yveh
yveh
in reply to SlowDragon

Thanks for all your help and advice. I am pleased to know I am not alone in this as it is very difficult trying to explain to firned and even my doctor

I suffer from something I have no clue what it is. Like damage to my nervous system maybe, a nervousness inside, not the heart, I can feel it in my arms, my chest, legs, mainly and it takes me a long time to relax my body before I fall asleep. I used to get electric shocks on my arms as I was falling asleep and it would automatically wake me up or better not let me fall asleep. The heart palpitations is something entirely different which is due to overmedication of thyroid meds. It's difficult to explain, like little bubbles jumping inside, under my skin, like a nervousness, it's not anxiety, it's a physical problem, not mental.

Low b12 can also cause your symptoms but i assume you have had this tested.

yveh
yveh
in reply to sbadd

Yes that was fine thanks

SlowDragon
SlowDragonAdministrator
in reply to yveh

Always get actual results and ranges

Eg B12 range is typically 210-680

GP would say B12 was fine if result was 220 or 600

Thyroid patients often have B12 deficiency symptoms if B12 is under 500

On levothyroxine we need optimal vitamin levels

yveh
yveh
in reply to SlowDragon

Thanks, and your advice seems a recurring trend. Manay many thanks all

Mamapea1
Mamapea1
in reply to yveh

Never EVER accept 'fine' as a result...I know from experience that GP's and Endos have no idea about any of this. I was told for decades my thyroid and vitamin results were 'fine', and I believed it, and suffered terribly as a result. The internal tremours which began in the chest area as little 'flutters', spread throughout my body over time and I ended up being unable to walk unaided and had severe neurological problems...the tremours and head-nodding were so bad I couldn't use a normal cup, and had to use a baby's beaker. I was also in constant pain.

I had so many 'investigations' that yielded no answers, and I began to think I had some awful life-limiting disease. I felt like a burden to my family and as I had been diagnosed with 'ME/CFS', everything that happened was put down to that, despite my thyroid having no output due to Hashimotos...TSH was also 'fine', and I had NEVER had T3 tested in over 20 years😳 It wasn't until I found this forum and began to investigate for myself via my medical notes [where the 'fine' results were found to be anything but!] that I realised I had been suffering from serious deficiencies [very common with thyroid issues] and inappropriate thyroid treatment.

My advice would be to do a comprehensive Medichecks test, like the Thyroid Check Ultra Vit, [which shows active B12] and posts results on here for advice. You will only go round in circles otherwise. You need to nip it in the bud yourself...don't rely on Drs to understand, because they don't/won't.

I am now absolutely fine [really😊] and have none of my previous symptoms at all, thanks to the sage advice I have received from kind members on here. I take no Pharma medications of any kind, I medicate myself for thyroid and keep a close watch on my vitamins and minerals, some of which I take daily. My cortisol levels are now good and I sleep well with no pain. It's taken a while and a bit of fine tuning to come from being in such a poor state, but it feels like a miracle that I never thought possible a few years ago. Good luck🍀 x

yveh
yveh
in reply to Mamapea1

Thanks for all the info' and your story.

SlowDragon
SlowDragonAdministrator
in reply to yveh

Like Mamapea1 .....I had 26 years of hell believing medics that my results were “fine”

Joined this forum here ....got access to historic test results online....saw results were anything but fine (Eg vitamin D was 15nmol...never told or treated. Also FT3 often well below range ......NHS did actually use to test Ft3 over 20 years ago)

Got full testing via Medichecks....long story short ...now fully recover 100% well ..more on my profile

TSH is frequently unreliable on replacement thyroid medication and often extremely low/suppressed when adequately treated ...

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