I have had internal vibrations which started about 8 years ago and my partner noticed me vibrating at night, I went to the doctors who made me feel stupid and did evetually do an MRI scan to see if I had MS, which came back negative, this took months and I was really worried, anyway the trembling seemed to go, at that time I was also being regularly checked for thyroid issues as was boardeline underactive, this seemed to go away for years and then a few years ago I was diagnosed as underactive and put on levoroxine (spelling might be wrong) I lost weight and my heart beat stopped fluttering and I stopped getting cramps and everything seemed a lot better, then around April last year I started vibrating at night again, again my partner noticed it a lot and found it woke him up, I only noticed it when I was suddenly woken up or had had a bad dream, I went back to the doctors and got fobbed off and made to feel stupid a lot! Then got put forward for another MRI to check my spine in case of damaged disks, this was negative which I thought it would be. A bit more information on my internal vibrations/ tremours they feel like they're coming from around my hips and vagina area but not at all in a sexual way! Just weird, they then seem to make my legs feel shaky like your arms do after carrying heavy bags for too long! These symptoms seem to be getting stronger and I can feel it in my legs more often, also very strongly when in a stressful situation, which has made the doctors say they think it's a mental health and anxiety issue and again fobb me off with that, it's causing anxiety not because of it.I am going to the doctors today to say I think it's either because of my thyroid issue, ie. A symptom or a side affect of the medication! And ask if there is anything I can be given to minimise it, a bit more info. My partner of 25 years has taken to sleeping on the sofa as he says he struggles to sleep next to me, he also does on and off night shifts and has other medical issues stopping him sleep but this is obviously causing relationship breakdown now. Especially as he thinks I am not doing anything to stop it.
Internal vibrations: I have had internal... - Thyroid UK
Internal vibrations
welcome to the forum
How much levothyroxine are you taking
Which brand of levothyroxine
What are your most recent thyroid results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
When were vitamin levels last tested
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Hi, I will check the levlevothyroxine amount when back home, I take a multivitamin every day mainly because I am a veggie! I also take starflower oil for my joints as can't have cod liver oil. I will have a good read through all those things you posted, a lot I need a bit of research on as don't understand! Have had B12 checked end of last year and lots of other tests done, I am also 46 so there have been a few mentions of perry menopause from the doctors, translated into, your a woman, we don't know what your weird symptoms are but your getting on a bit so it's probably menopause and we know F all about that! I have read a few mentions on here of low calcium levels and also adrenaline responses causing the tremours, so will read up a bit more on this! Do feel I am wasting my time on my day off going to the doctors again!
On levothyroxine and vegetarian you will have to work hard and continuously to maintain GOOD vitamin levels
Multivitamins never recommended on here. Cheap poorly absorbed ingredients. Only for the worried well. Not suitable for improving low /deficient vitamin levels
Stop ALL supplements that contain biotin 5-7 days before all blood tests as biotin can falsely affect test results
as a vegetarian you should be taking a separate B12 daily and separate vitamin B complex
But test now BEFORE starting
academic.oup.com/nutritionr...
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 at least few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Hello I’m a new member and I’d like to show you some results of blood tests I’ve had over the past year mostly private that you could possibly help me with please.Firstly my b12 active a year ago was 56 lower end of normal I was advised to have a MMA which came back at 28.3 told that was ok.A year later still having issues so decided to have a full panel done again privately. This time they red flagged my thyroid,cholesterol,mcv large blood cells.Ive always thought I may have a thyroid issue but always came back normal till now my mom had a under active issue.Twelve months ago it was 2.7 now it’s 4.76 which I understand is slightly high.My free3 is 3.9 and F4 is 13.6. My folate a year ago was 15.9 now it’s 7.17 b12 active is 60 vitamin D 77 mcv 102 (large blood cells )and Ferritin 86.4 .Took my results to my doctor quickly looked through them and said we will have to do these blood tests again for our own records.Now I have to wait two weeks to have them done any feedback you can give me on what I have put down feeling so depressed about it all I’m 69 thank you.
Bluenose 69
Please start a new post with your results.
Ok will do thanks
Please write a new post of your own
Then members can advise
Sounds like you could do with a full thyroid panel and request cortisol (better if 9am appointment) alongside B12, folate, ferritin and Vit D
This is possibly your adrenals struggling due to thyroid and peri-meno, well worth having a read up about HRT and concentrate on the body identical form as the GP would rather just give you the cheapest so a bit of knowledge is necessary 🤗
It sounds like undermedication. I'm sure I've read about this before ...will have a search
If T3, the active thyroid hormone, is low almost any part of the body can be affected...and we are all different.
Do you have any other symptoms on this list
thyroiduk.org/signs-and-sym...
If you can answer SlowDragon's questions that will help us to help you
It's horrid having your life turned upside down when you have a hidden condition especially when you are not being lisened to
It's no comfort but medics lack knowledge of thyroid disease as most of us here have experienced....they try to hide this by brushing off one's concerns....and by prescribing antidepressants!
Your partner is just trying to get a good night's sleep. I often move to another bed to stop disturbing my husband if I have a restless night...our relationship is not in any danger and we are both more rested as a result.
Without lab results we can only make an educated guess...and that won't solve your problem. So, give us more information and we'll try to be more helpful
PS Found it
healthunlocked.com/thyroidu...
Lots of good advice/ info here
Also, you have added this quote..
your a woman, we don't know what your weird symptoms are but your getting on a bit so it's probably menopause
That is a patronising, unprofessional, sexist, ageist response which has no part in a diagnosis....he's clueless!
Can you see another doctor
Good luck!
Low iron and ferritin highly likely on vegetarian diet
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
stop any iron supplements 5-7 days before test
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
I have been on multivitamins with iron when having all my blood tests, so this could have effected them! There has also been talk of pelvic floor issues but I don't think it's that, I assume mainly because of where the symptoms come from! Oh I have also been taking CBD gummies to help me sleep since the Autumn and although they don't change the vibrations at all I definitely get back to sleep more easily.
I do feel a lot better knowing it is very likely to be thyroid related and that there is an actual reason for it, been made to feel abnormal and just weird by doctors for ages
AdventureAbi,
Welcome to our forum.
I used to suffer from internal vibrations They started after being medicated on Levothyroxine, carried on for several years and you've just made me realise I now haven’t experienced any for a long time.
Mine were felt slightly higher, around my chest area, usually started very suddenly during the night waking me up, and would stop just as suddenly as they started. I felt like I was plugged into a fridge, although my husband said he could never feel them.
Because my adrenals were poor I used to think it was the Levo that ramped up metabolism faster than my adrenal health could cope with, but after research have come to the conclusion its associated more to the autonomic nervous system. Mine were always more pronounced during periods of rest or sleep so wonder if perhaps the parasympathetic nervous system becomes up-regulated by the vast dysfunctions caused by years of inadequate thyroid hormone/autoimmune conditions.
I'm sorry to hear yours are impacting your life and relationship so much. Conventional medicine hasn't caught up with this phenomenon yet but be hopeful the internals vibrations should eventually improve once you are optimally medicated.
More of others experiences here .... healthunlocked.com/search/p...
And here .... google.com/search?client=sa...
You need to post your latest results with their reference ranges, as others have said.
But just a thought.. I was on levothyroxine for nearly 25 years and I was pretty well on it. But then I went downhill bigtime. I was mostly housebound, often chair bound, with many bad symptoms for nearly 2 years. I also had internal vibrations. I hated them and they were really unnerving. I don't know if others noticed them. They stopped when I started taking T3 alongside thyroxine. It may not be the same in your case, but see if your T3 has been tested.
My doctor said my thyroid was well medicated and it couldn't be from that but had no other answers really, he asked me loads of questions and decided I had got restless leg syndrome, which I possibly also do! He gave me medication for that and said it might help with the vibrations, I tried the first dose of that, you have to build it up in your system gradually taking more, the first smaller dose just made me feel spaced out so decided against that. So basically not got anywhere, it was a different doctor and he was at least friendly and listened.
I just get the overall feeling that it is something I just need to deal with, and try not to talk about as get looked at like I am a bit crazy
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