I have been twitching in a part of my body - upper right rib cage on back / under right arm - for the last 3 or 4 days.
Have been having a distinct flare of numerous health problems over the last 2 weeks. I know that I am low in ferritin (12 the last time measured, which was in June) but know nothing else that is out of whack - or nothing else that was when those blood tests were last done. I will try to dig those results out. Some of my other symptoms - rosacea in a given part of my nose / nose growth, dry eyes and floating bits in them, fatigue, tiredness, gastritis, reflux, extremely itchy scalp, hair loss and forgetfulness (you can tell how fatigued - I wrote fatigue and then wrote tiredness and only just realised they mean the same) - are really bad at the moment. These are all problems that I’ve had on-off this year and which have swollen as if to the crescendo of a full symphony orchestra now. I also have stiff fingers in one hand - the same side as the twitching / spasticity - that comes and goes. I also have a swollen salivary gland on one side. Swollen salivary glands and extreme dry mouth was a problem I had really badly at the beginning of this year, from Dec - Jan. I had a Sjogren’s biopsy, which ruled that condition out. After a few months I put the salivary issue down to Teva, because when I stopped taking Teva in March, the dry mouth went away. It’s back.
I have so many unresolved / weird medical issues but I’ve seen many specialists this year and no-one has come up with a reason for any of them. All that I’ve been suggested to do is have a Mirena coil, which I was told would stop my periods, to help with the iron levels. 3.5 months later - no real help there.
I am not able to take medical-grade iron supplements because they make me very unwell, too, so I am taking OTC iron. The kind derived from vegetables, and Sytron, which is the formulation prescribed for kids.
Sorry for the extremely long and winding message. I wanted to ask specifically about twitching - if it is a Hashimoto’s symptom - but feel certain that the old timers who know everything would want a bit more context, and of course blood results.
I am wondering whether what I have is starting to look and sound a bit like lupus or another auto-immune condition like it, as there are so many things happening at once. I had a positive speckled ANA test earlier this year, but no other AI tests.
Thanks for your patience if you’ve read this far.
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Twitching does gets mentioned, so It may have a thyroid connection, perhaps caused by a combination of nutrients deficiencies which are know to occur with abnormal thyroid.
A previously suffered from excessive twitching around one eye.
I started taking magnesium supplement as I have a number of other conditions suggesting low magnesium a common factor (migraine, type 2 diabetes, propranolol use & long term untreated hyperthyroid (nodule).
The twitching rarely happens now & I really believe taking magnesium supplement resolved it.
I initially used Bisglycinate magnesium which was good but now use powdered citrate magnesium.
I also had a swollen submandibular salivary gland. The initial referral the GP submitted was declined & she was not happy. So she perused it and I had 2 scans & 2 ENT appointments in the end.
The swelling was a new lump 3cm from a large nodule.
So for a while I was attending endocrinology appointment regarding nodule & ENT department regarding salivary gland. Neither would acknowledge the other issue.
The inflammation was never explained as no sign of blockage.
“Neither would acknowledge the other issue” I don’t know whether to laugh or cry or do both at the same time, or just nod.
This is in a nutshell and in our own medico-planetary constellation of stars EXACTLY my experience. It now amazes me that anyone is ever diagnosed with a condition that has symptoms that affect more than one part of the anatomy.
Thank you so much for your guidance.
What happened with the nodule? What treatment was needed there?
I was found to have a nodule this year but because it wasn’t what they were really looking for / had expertise in, ENT ignored it. Of course endocrinology has never seen it or been asked to advise on it.
I just laugh about it. I was also told ENT “don’t do blood tests” they only look at things from a should this be operated on?
Where as endos only look at blood test and say your in range nothing is wrong with you….
I was told RAI was my treatment as the nodule autonomously hyper function. This was at first appointment. I said I wasn’t keen.
I asked about surgery as an option and was told -RAI is your treatment- First they were going to confirm you have a hyper nodule and then discuss it further.
I saw an ENT about a swallowing issue around the same time. It was the nodule but apparently it “wasn’t too squashed in there”. Doctor said he would operate if RAI was any sort of issue. Then he wrote to me said RAI was the most straightforward option & discharged me.
Then I was sent a consent form for RAI after a 2 min phone call informing me -RAI was my treatment- Which I still have in a file 3 years later.
The GP monitors me now because the specialist said I -wasn’t wanted on her books-. Im to be referred back once Im ready to treat.
The GP arranges blood test every time I remind them it due. Then they note it’s abnormal but expected, but never call to discuss it, or you know see of I’m well?
I had to contact them them recently because the carbimazole I take was due for review & could order more.
I was hoping I could get reception & pharmacist to reinstate the prescription but I had to speak to a doctor.
I also knew I needed an increase, my TSH is always suppressed but the specialist stated FT4 should be “15” or there about (mid range) but actually never specified a range.
GP said it’s risen a “little” (still above what specialist suggested but as in range wasn’t noticed). Plus the range used has been drastically altered so in reality I’d gone from 40% to a little over 80% of range.
She agrees to adjust dose but only changed instructions - not amount of pills, so I going to run out quicker!
She even asks me when I plan to have RAI. So she CAN read that part of the notes!
I could request a referral for surgery but for now I’ll stay on medication. I think I’d be a candidate for Radio Frequently Ablation. Which is less invasive and treats nodule more directly, but it’s not offered locally and I couldn’t arrange to travel. It would likely involve a few trips.
I’ve research it a bit so know about it, but a doctor has never mentioned it to me.
The expense of it. I am several hours drive from 2 hospitals which do the procedure.
1 trip might be manageable but I’ve learned you might need many, assessment, 2 biopsies at separate times, the procedure itself then follow up. My nodule is 5cm even may need repeat treatments. Five plus trips.
My husband would drive but the cost of travelling parking ect would be on us, we would loose work or holiday time & our 2 daughters wouldn’t be able to attend. They have complex needs & so it’s difficult to arrange care for them for a whole day.
It’s why apart from not being keen on RAI the isolation from them would be a problem. I’d have to move out as they would not understand & my husband would be managing alone.
I now understand. I don’t know much about hospital transport. I can only imagine you’ve looked into it and that hospitals don’t lay on journeys for those who can’t afford to get to them, and that councils don’t have care provision to cover parents of adult children who need respite / helping hands for their own medical needs. If wishes were shuttle buses and spare carers, perhaps otherwise.
How long do you have to absent yourself from others when you have RAI? Again, I know very little.
I have checked my last (only?) magnesium blood test result. It was 1.03 in June 2021.
With the healthy range being 0.7-1.00.
Ie. My magnesium levels seemed to be too high, not low.
That was never explained or investigated or mentioned. Which is weird because I was in hospital for having electrical heart activity that was out of kilter at the time. Never fully explained. And when I checked just now, that is exactly what excess magnesium levels will do.
The only other level tested then that was peculiar was my ferritin, which was 10. Normal being 13-150.
A Magnesium bloods test is said to be a poor indicator of magnesium status as only a tiny quantity (1%) is in blood. It’s vital for energy, muscle and nerves. About half of the body’s magnesium is combined with calcium and phosphorus to form bone.
Increased levels of magnesium in blood is unusual as the body is good at regulating it in blood & excreting excess.
Luckily / life-savingly - using a work private health insurance system meant I could get an iron infusion, a year after my ferritin was first below 15/20. Even the private health insurance scheme put up lots of barriers to my having this. They only consented to act when my HB was also low - beneath 100.
A very large titanium implant holds part of my leg together. Has done for years. Your comments have given me the idea to ask for a titanium blood test when I next have bloods drawn.
Hi there, For the past 10 years I've had a positive ANA and the pattern comes back specifically for LUPUS, however I went to a rheumatologist and he thought it was my hypothyroidism and not lupus. All I know is that when my thyroid levels are optimal I don't have any of these weird symptoms. I had spasms in my neck shoulder area, vision problems, extreme fatigue, muscle weakness, no appetite, irritation, brain fog, and it also caused an iron deficiency so I had terrible dizziness and vertigo for several years. I'd suggest Thorne iron if you can get it. I've never had any side effects with it and it's formulated to not cause stomach upset and other issues. I can take 100mg of it every other day and have no issues. Being under medicated on Levothyroxine and not having high enough T3 levels caused me to have heavy periods which led to my Ferritin and serum iron dropping to the very bottom of the reference range. What would solve your symptoms would most likely be having the right amount of thyroid hormone since it affects nearly everything.
And do you ever have a rash on the back of your calves that itches like .. itching powder?!
It’s so lucky I have you to tell. Anyone else would think I make these weird symptoms up.
Heavy periods with low iron - and of course it makes the problem worse in turn. Did you ever get nudged to have a Mirena coil, too? That seems to be the only way doctors know to resolve heavy periods / increase iron these days.
Thorne iron! I will try that and magnesium.
How high did your T3 levels need to be out of interest?
I used to have painful uterine fibroids before I had those treated but they always tried to get me on birth control. Also, I get a rash on my face when my thyroid hormone is too low. It's kind of like little white things you can scratch off mixed in with some red bumps. It makes my whole body and head itch! I need my T3 to be close to the very top of the range.
My blood pressure only increases when I raise my Levo or Lio too much. Usually it's the Levo that is the culprit. At the same time it increases my heart rate into the 90s. I start sweating, getting dizzy and then my limbs get tingly as well. Suddenly everything becomes a chore, even walking. I start asking everyone if it's "hot in here or is it just me?" Since starting the iron capsules I don't wake with the panic sweats anymore and haven't had hand coldness, dizziness and vertigo. I had to make sure to eat a proper amount of carbs, fats, and proteins too. Once I did that my hand coldness went away.
Thank you JR. I have bought a BP machine after a couple of very high numbers in doctors’ surgeries recently, to get a baseline at the same time of day for a few days. B****y thyroid.
There are drugs they can give you to reduce heavy bleeding. I used mefenamic acid as a painkiller/ to reduce blood loss. I found it quite effective. I hated the Mirena coil. It caused me to develop acne and I was spotting almost constantly. I got it taken out.
There's also a procedure called endometrial ablation which cauterises the lining of the womb and reduces its thickness. Periods are usually much lighter afterwards. It's done as a day surgery I believe.
Yes - I have mefenamic and Transexamic acid. And in any case the Mirena hasn’t worked. I had an iron infusion last year and am already iron deficient again.
I think I may be following you and having it taken out.The risk of side effects is very high. Lots of legal cases being taken out against its manufacturer in the US.
I had it fitted years ago, when it was very new. The insertion was horrendous and because it was new and probably expensive they were very reluctant for me to have it removed but I insisted. I hated it.
Relentless PR continues all these years later. The gynae I saw said that it’s very successful in almost all women and didn’t mention any side effects. Her attitude suggested I was being ridiculous for even wanting to check that something she was leaving inside my body, to stay there for years, was safe / effective. I didn’t tell her that a friend of mine with a degree in pharmacology had had to take hers out because of extreme panic attacks and accompanying change in her character, and that - once she realised what was causing the problem and had it removed - she feels much better now.
Yes checked for fibroids. And I had a single polyp removed. No, not endometriosis specifically. Would that show up in a biopsy / US? I don’t get terrible pains most of the time. Ie. Rarely get them.
I think endometriosis is usually diagnosed via a laparoscopic investigation. But if you're not getting pain then maybe not. Everyone I've heard of with it has tremendous pain. It's a terrible condition. Truly disabling for many.
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