Anyone else suffer random all over body involuntary jerks/movements & tremors?
Have been referred to a neurologist but no appointment yet.
Wondering what it could be ?
Have been on 75 Levothyroxine since Dec 2021 and blood test in February within parameters . Diagnosed Hashimotos 18 months ago.
I also have Fibromyalgia.
Any thoughts would be gratefully received.
Thanks in advance.
When were thyroid and vitamin levels last tested
Which brand of levothyroxine are you currently taking
Teva is the only brand that makes 75mcg tablets
Teva upsets many people
What vitamin supplements are you currently taking
When were vitamin levels last tested
Do you do your thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
75mcg levothyroxine is only one step up from starter dose.
Likely to need further increase in levothyroxine after next test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Please add most recent results
Or come back with new post once you get full testing
Thank you SlowDragon. Recent results (Feb 2022) taken before 09:00 were: Serum Free T4 - 19pmol/L
TSH - 0.6 miu/L
FT3 - not tested
Vit D - 35.6 nmol/L
Vitamin B12 - 348ng/L
Magnesium or Folate have not been tested. I am not on Vit D or any other supplements currently.
I am not due another TFT anytime soon as results were in range. Wondering whether to self trial increase to 125mcg anyway?
Thanks
Vitamin D is insufficient
Low vitamin D
GP should prescribe 1600iu everyday for 6 months
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Suggest you start with 3000iu or 4000iu and retest in 3-4 months
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
Request GP test folate and ferritin
B12 is too low but not low enough for GP to prescribe
What’s the range on Ft4 result of 19
Never increase dose levothyroxine without getting FULL Thyroid test
Ft4 looks high in range
TSH, Ft4 and ft3
Monitor My Health Is cheapest at £26.10
Or test via Medichecks or Blue horizon to get folate and ferritin tested too
Improving low vitamin levels is first step
How low was vitamin D
How much vitamin D has GP prescribed
Are you taking any magnesium supplements as well
Muscles twitching or cramps can be linked to low magnesium
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Great article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Check your vitamin D, B12 and folate levels. I had this and it got really bad...mine was a B12 deficiency, although B12 levels looked 'fine', folate had been consistently low (I was unaware) and B12 couldn't work properly in the body. My cortisol was also low, due to poor thyroid treatment, but a methyl B complex and B12 supplement definitely stopped the tremors. Worth a try?
Same here, with me it was low B12. 
It's diabolical, what we go through. I discovered my folate had been below range for over 20 years! What was the woman thinking? 😳My B12 had always hovered at the bottom of the range, along with iron.
I thought I had MS, but it was just that my GP had decided to completely ignore all the exclamation marks on my blood tests, of which there were many ☹️
Judging by symptoms, my B12 had been low for over forty years, but I don't think anyone ever tested it - like my thyroid. I'm lucky I haven't got worse nerve damage than I have.
I feel lucky to be alive at all, and it's only thanks to this forum. I still have roaring tinnitus, but I've got used to it. Tapping the vagus nerve helps if it gets annoying, and my spine never quite got back to normal, but yes, like you, I feel lucky.
They don't test anything of any value, and even when they do, they can't interpret it properly, or choose not to. I consistently begged to have my Vit D tested, and was mocked relentlessly for it.
I felt like a hypochondriac, and she said I was clutching at straws. When she finally caved in and tested, it was 4!
No idea how long it was like that, but I couldn't walk! No T3, the most important thyroid hormone, ever tested. What a complete waste of time and life 😕
That's very true, they never test anything of value, just the same old tests that they take no notice of, anyway. And, they have no idea how to interpret the results!
I think it's so unprofessional to laugh at patients when they express their concerns. We are not supposed to know as much as they do - except we do about thyroid - so how are we supposed to know what is important and what isn't? One doctor said to me, 'when I graduaded, I swore to myself to take all my patients questions seriously, no matter how stupid they were'!!!!!!! Instantly put me off the man!
Yes, they're a condescending bunch in the main. I was incredulous when I read the comments that had been made about me in my medical notes. It was shocking. And the letters to and fro between her and the assorted specialists were worse! Have they all forgotten why they joined the profession, or did they join for some other reason rather than to help people?
Finding a Dr that actually knows how the body works seems to be like searching for unicorns. I'm done with them. I avoid them like the plague. In fact, that should be the collective noun for them...a plague of Dr's. I lament the retirement of my old GP...'you don't know what you've got till its gone' as the song goes.
I learnt more about my health and how to fix it in one day on here, than in the 25 years that I dragged myself around GP surgeries and hospitals, being gaslighted and dismissed. I must have cost the NHS and taxpayers a fortune in that time. And there we have it. Follow the money.....💰
Hi Mamapea,
When I got online access last year I found my results for the past 13yrs were just like yours. I was at least prescribed 5mg folic acid for a few months every couple of years.
Are you coeliac?
"The main cause of folate malabsorption is gluten-induced enteropathy."
cks.nice.org.uk/topics/anae...
Hi Maynan17,
I don't have experience of the body jerks I'm afraid, but I imagine it must drive you nuts. I hope that you find the answers soonest.
Hi Nellie ~ I don't know if I'm coeliac, as I never had a test (surprise surprise) but I had long suspected gluten was a problem for me, so I gave it up long ago. Thank you for the link. The tremors were a nightmare, especially when I didn't know what was causing them. My GP never made the connection, just told me to 'pop out and get some folic acid' after I'd asked her why she had ignored below range results for years on end.
I wouldn't have taken the folic acid anyway, as I prefer the more absorbable methyl folate. I had dreadful gut issues!
Oh thank you for your kind wishes, but my tremors are long gone, thanks to advice from here and the B12 forum...wonderful people giving up their time and knowledge to help others, and not even getting paid for it. 🌟
i think Alejandrita17 has this issue , or similar ?
Tremors
Tremors
Hyperthyroid and tremors
Tremors again!
Body temperature
