Pins needles..twitching...low t3..need help ..a... - Thyroid UK

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Pins needles..twitching...low t3..need help ..any testimonial relating to this

Hello im not from the UK. But ive searched high and low for answers. Anyone please help and thank u in advance! I had thyroid removed dec 2018 d/t PTC no RAI needed. U knoe the drill they slowly started increasing dose with goal TSH 0.5 . I started off 75mcg levothyroxine and then 88...i first noticed ringing in ears and fullness in ear with popping noises...these things wasnt there before except i was pregnant and delivered nov18....i found lump on neck during pregnancy...it was ectopic thyroid tissue and fna said thyroid cancer...my ears rang. Anyways back to time line...by feb/ march i seen endo who then put me on synthroid. She put me on 100mcg synthroid and next symptom still tired but got a newborn ...stiffness in neck..lot stiffness. Ringing in ears worse. I had random pin pricks before i got pregnant but rare and ramdom in feet. Well i started feeling random electric shock pins pricks more often in arms and feet..i ignored it cause i read ppl post amd assumed it was thyroid adjusting...next see took me to synthroid 112 and more stiffness noted in neck upper left back and left hip some...random tailbone pain but rare...i was kinda dreading if she wnt up...next synthroid 125 i get tingling in hands and feet her nurse said it could be levels leveling out ...now pin prickly more often in arms and legs...out bad cold dudnt finish antibiotics..cause breastfeeding and baby got sick...she didnt go up on dose. I got sick again ans 3days into abx developed burning mouth that ending up settling to left in jaw numbness and left inner roof mouth burning....still present today and started in may or june...a week after this went up into my face and eyes.i went to ED and calcium in upper range normal and Vit d good...and also had extreme fatigue ...so current day they are all through my body and are constant...i will tell more later...tingling in mouth too. I got neurologist referral...mri showed 2 punctuate nonspecific white matter lesion...which could be MS. I got lumbar puncture...all normal...not nerve conduction test and EMG all normal. Then i noticed left side of adbomen muscle sore or felt tight and left area in butt and got shooting pain down it. I have pulling sensation under left rib too .

All these things happen slowly from feb til july. Then i noticed small twitching under belly button at random. And then one night under left side of sternum twitching. In August i developed dizziness almost occuring everyday like somebody pushing head forward and 1 week later constant floaters with occassional blurry vision. Over 2 weeks ago now the twitches are everywhere.

I have pain that feels like bone and /or muscle pain that shoots through my hands and fingers forerams mostly but also in a toe or hip or back. Over a month ago my endocrinologist check several labs for me sge said never heard of thyroid causing pins and needles but lowered synthroid 100mcg and t3 5mcg 2x a day cause due to fatigue.

Labs Aug 2 2019

First TSH is only this high cause i was playing around with time taking medicine to see if it would make change in symptoms before TSH 0.6 2 months prior

TSH 1.670

Free T3 2.16

Free T4 1.16

B12 693....vit d 41.3...iron 85....ferritin 68.5...thyroglobin ab less than 1.0. Sodium 143 and potassium 4.3..magnesium 2.3

I get levels rechecked after starting t3 next week but i can tell u it only help slight difference with energy.

I saw a 2nd neurologist who is a MS specialist 3 days ago and he said based off my mri it doesnt look a person mri with ms and said he will do mri of neck and thoracic since i do have pop neck a lot and pulled muscle in back and not had mri and if i have ms lesions could be in that mri too

So current day

1Legs and arms easily go numb or sleep when bent

2. Extreme fatigue

3. Constant wide spreadpins and needles. Mostly on left side of body but everywhere..also feels like ant bite or flicking water on me

4. All over twitching

5. Hip pain neck pain joint pain ...mostly left side but is on both

6. Floaters

7 dizziness

8. Brain fog ..cant concentrate at times.

9. Ear ringing and popping..

10 sometimes eye pain

Any advice welcome.

54 Replies
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Poor you—sounds like it’s been a very difficult few months!

First things first, do you have laboratory reference ranges for those blood test results? They vary massively so we can’t interpret results without them.

And when you have blood tests, are you doing what we advise here—not taking levothyroxine the morning of the test?

Once on levothyroxine (Synthroid is a brand name) TSH starts to become pretty meaningless and what you often need to feel well is an FT3 that’s high in its range.

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Yes and thank u for replying

Tsh 0.358-3.740

Ft4 0.76-1.46

Ft3 2.18-3.98

B12 193-986

VitD 30.0-100.0

Iron 50-170

Ferritin 8.0- 252.0

Another question is can u possibly have high reverse t3 with within range TSH and no weight gain...or problems losing weight

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Oh to answer other part of question with all of my test from beginning yes i havw taken morning of. My endo never told me not talk morning pill day of. I always have and cause of job i can not do labs after work somewhere until 2-3pm. Only this last test results after i told her i heard u should fast morning of she told me i could eat breakfast and just not lunch since i get test results in afternoon...i take my pill somewhere 5am...full glass of water..i have coffee about more 1hr later and take all my vitamins and calcium pills at night before bed

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rT3 has nothing to do with the TSH. If your FT4 is at the top of the range, it could be converting to more rT3 than T3, but excess rT3 does not cause symptoms.

The time of day you do the test only really affects the TSH. But, taking your levo and/or T3 too close to the test will affect the FT4/3. You should arrange the time you take your last doses so that there is a gap of 24 hours between your last dose of levo and the blood draw. And a 12 hour gap for the T3. :)

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So i havent been doing this. Could these symptoms be caused by lowt3 or is any of this possible with thyroid imbalance...ive cried soo much i desperately need answers??

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Low T3 could possibly be causing all these symptoms, yes. As it is needed by every single cell in the body to function correctly, low levels can cause all sorts of weird and wonderful symptoms.

But, we can't know your actual level of FT3 because, it appears, you haven't been doing the test correctly. How long did you leave between your last dose of T3 and the blood draw?

A lot of them, though, sound very much like low B12, to me. Yet your B12 is good. Has it been low in the past, and have you been supplementing? Have a look at this list of symptoms and see if it rings any bells with you:

b12deficiency.info/signs-an...

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Never had low b12. And i was supplementing but hadnt taken none 2 days before test.. and i wasnt taking the t3 5mcg 2x a day yet when labs was drawn. Have u ever heard of ppl having pins and needles constant all over from low t3...thats highest 2.1 its ever been it was for longest time trailing at 1.8

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Not taking B12 for two days before a test won't change anything. To get a base-line, you have to be off it for 5 months.

So, how long have you been on 5 mcg x 2 T3?

No, I can't say I have heard of that, but that doesn't mean it can't happen.

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Ive been on t3 5mcg x2 for lil over a month. Off 5months wow...no i hadnt been even taking it for 5months

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You think its possible i need another thyroid medicine? Im looking for hope...ive read ppl having these symptoms but theyre tsh was off or b12 was low

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TSH has nothing to do with symptoms. It doesn't cause them. But, yes, these are usually low B12 symptoms. Perhaps you need higher B12.

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I take methocyan b12 sublinguinal everyday and b6 and still have this. I dont understand.

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Well, as far as I know, all the B vits work together. So to get full benefit from B12, you need to take all the others, not just B6. So, you'd probably be better off getting a B complex, rather than just B6.

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Im sorry that was typo its bcomplex

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OK. Well, I don't know, then. Sorry.

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Thank u soo much for ur help. Just to see somebody respond touches me cause u took the time to help and respond vs not saying anything. God bless u

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You're more than welcome. I'm only sorry I can't find a solution for you.

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I have almost every bullet point you have if you find the answer as to why please,please,please post it. I'm desperate too I can not live like this.

I think I might have developed Fibromyalgia on top of Psoriatic Arthritis but I'm not sure I'm desperate. (Thyroidectomy 2016 pap cancer).

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Im sorry Batty1..maybe these other members can help more than i. I will let u know i wont forget u ...

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I have lot symptoms of fibromyoalgia and other neuro disease but i wont stop until i get a resolution theres no way im normal and 9 months later got multi issues like this...

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I have experienced something similar and yes thyroid can cause twitching and oins needles....but turns out I was severely overmedicated -- blood didnt show it for a long time. How is your pulse and blood pressure? Take your blood pressure (check morning and evening) ... get a good cuff if you dont have one... subtract the bottom number from the top number to give you your pulse pressure. For example if your blood pressure is 135 / 75 your press pressure is 60. A wide or high pulse pressure indicates over medicated or hyper and a low or narrow pulse pressure indicates undermedicated or hypo. When I was really sick for many many months I was feeling many of your symptoms my pulse pressure was routinely 60 or more. You can Google and find more info on this. Also my temperatures were extremely low during the time I was sickest from over medication routinely around 96.8 or so. my heart goes out to you because I know what it feels like to feel horrible day after day for many many months in a row. You can private message me if you find your pulse pressure is running high and want to chat about that.

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I havent checked blood pressure but i know my systolic is higher than used to be ....like 125 vs 105-110. I have cuff here at work i can use everyday. So what worked for u if u dont mind me asking...my levels are off just lowt3..

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Well long story short almost two years ago I went gluten-free because I found out I was highly sensitive to gluten. My gut healed and unbeknownst to me I started absorbing more thyroid medicine which I had been on for six years. I kept feeling sicker and sicker and unfortunately had a doctor put me on even more medicine adding T3 to T4 I was already taking. That was last summer and I got so sick I could hardly stand and talk at the same time some days it was beyond horrible. Head pressure light headed and exhaustion I can't put into words, twitching high heart rate higher blood pressure, acne (I'm 58!) pain on and off everywhere but the head pressure and head Sensations was the worst. My labs all showed normal for many months until I added the T3 then it showed way over medicated. So we finally figured out I was taking too much medicine and I slowly started stepping down off the medicine. January of this year I step down to zero medicine and in the last 8 months and things were really horrible for about five or six months but then slowly most of the hyper symptoms have resolved and I am dealing now with some hypo symptoms but nothing NOTHING like I was feeling last year. My thyroid has kicked back in and is working and my labs are good now. The specialist I work with tells me I was over-medicated also called iatrogenic hyperthyroidism and it literally takes 6 to 16 months for your system to get back to normal. I have read millions of forums about this and I read having a baby can launch you into hyper and then hypo mode. Perhaps that's all related for you? So my solution was to come down off the medicine and just monitor everything. Very very very slowly my symptoms have improved drastically but I am only on month number 8. Does this make sense? There were very few things that were visible on my body letting me know something was very wrong one was the pulse pressure another was the temperature and yet another was a toenail coming away from the bed this is called onycholysis and is caused by thyroid dysfunction. Keep an eye on your nails! I'm glad to talk with you further because I know how I have suffered trying to get through this. I think we all have a narrow window of where we feel okay and some of us if we're outside of that window can feel horrible every day. Sandy

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Im glad things are getting better for you! Its hard believe thyroid pill or thyroid stuff causing this type of imbalance. I had papillary thyroid cancer and removed all my thyroid. As they went up on dose i slowly manifested these symptoms...very slowly...i would love try natural dessicate but might be hard to find endo that will let me try it since i had cancer...they check thyroglobin to monitor reoccurrence and the pig thyroid would alter those labs...i have acne too thats gotten really bad past few months i thought maybe it was stress related

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Im gonna check BP soon

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Also did ur pain be mostly on one side...im had previous multiple injuries on that side...like upper back muscle strain...small left inguinal hernia that resolved after pregnancy. I broke other leg years ago and soo i do use more left leg to walk without noticing it...i just wonder

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I would say that most of my pain has been in areas that were in one way or another damaged over the years for example I twisted a knee 20 years ago and that is one area the pain wood set in a lot. I also should mention not sure if you checked your reverse T3 ratio showed I had too much reverse T3 in my blood and that is when I was the sickest. These last few months the T3 to reverse T3 ratio has gotten back into range. I don't know how it all works I just know that I felt worst when that ratio was off. So things to look for would-be temperature pulse pressure toenails and reverse T3!

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Yes i have more pain from old injuries. Lots of aches and stiffness...ive never had reverse t3 checked....im not sure if endo will test for this

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My pulse pressure was 53

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My pulse pressure used to run anywhere between 45 and 60 when I was coming through the worst of it now my pulse pressure is generally around 35 to 40. There is more to that trick... An old intern told me that before the days of blood test like in World War II doctors could figure out if people needed to cut back on thyroid medicine if there pulse pressure times their pulse was 3200 or more. So if your pulse pressure is 53 and let's say for example your pulse is 70 you multiply those two numbers and you get 3710 which as he explained show's over medication and they would cut back medicine in half. Back when I was feeling so sick that number was always 3400 sometimes as high as 5500. It took a long long time 4 things to adjust and I'm still not a hundred percent after 8 months of no medicine. The specialist said after it all levels out I may end up needing to take just a little bit of t4 but for now I'm riding this out. I think there are a lot of people suffering because they're taking too much medicine and they don't realize it.

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Yes i know what ur saying . My heart rate was 54. So 53×54 is 2862. So maybe im not in that category? Idk 😢😢

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Yes I see what you mean but nevertheless you still have what they call a wide pulse pressure which goes along with hyperthyroidism or too much medicine. 54 is pretty low for a resting heart rate!

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I havent worked out in almost 2months ...was doing crossfit which helps with lower hr due to metabolic conditioning

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I went just over a year without working out and I have just in the last few weeks gotten back to the gym taking easy classes. I was the 58 year-old in the CrossFit classes doing as good as a 20 and 30 year olds in excellent shape all my life. This thyroid thing brought me to my knees! You may not be over medicated I'm not sure but to me your symptoms sound very thyroid related as mine were. Like you I had all the blood tests all the scans all the test EMG nerve conduction test chest scan head scan heart testing inside and out all of it and I am very very thankful it all turned out normal. Then I finally had a specialist not an endocrinologist tell me I was over-medicated and just needed to ride it out. I hope you can pin down what's going on but I do know from reading so much that women who have babies can struggle with the hyper then hypo thyroid issues I'm not sure how that relates to you since your has been removed. Let's stay in touch.

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Im soo glad to hear u do crossfit...irs so versatile u wont get tired doing same movements. Yes all my test normal except one spot on mri was a nonspecific lesion but lumbar puncture normal and now gonma get mri of spine this coming thursday. Thank u soo much

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Best of luck to you!

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Thank u

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Hi BethanyOxe

I just wanted to let you know that while I have no idea what is happening to you I do want you to know that I’ll be thinking and praying for you to get some answers. Have you been to a neurologist? I have many of these symptoms in my feet because of CRPS. Lyrica has helped my symptoms tremendously but I’m not a doctor and only offering a suggestion. Good luck to you. xxx

Teresamarie

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Thank u for your prayers...ive been asking god to reveal it...i need answers. I know the doctors think im crazy

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Don’t let anyone make you crazy! You know you! But I will say your symptoms could drive you crazy 😳 can you walk/stand?

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Yes i can walk normal. Before thyroid got removed i was fine no arthritis no pain...i had a random pins in feet felt it once or twice a day and 1-2 week and that was right before getting pregnant

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Just a possibility if you're taking only t3. Take tiny amounts across the day - like 2.5 mg - 5mg several times across the day? I could be wrong but i don't think it's as crucial that you take T3 hours before and after food and vits etc so its not too restrictive. Anyway, that's what I;m doing for now as 10mg (is it mcg?) gives me head and ear pain. But plenty T3 definitely helps my hips and pains and eyes...

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Ok thank im on synthroid 100mcg and t3 5mcg x2 day

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Hi i take t3 5mcg x2 a day and synthroid 100mcg daily. I was just started on t3 a month ago. And its not made difference at all.

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It was only when I switched to t3 only that I could see t3 working really. With t4 I always felt overmedicated but no improvement in symptoms (hip leg feet pain).

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Did u have any other issues like pins and needles and twitching

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Endless symptoms. Leg twitch fixed fairly early in as soon as I had t4. Still get pins and needles. Shower of eye floaters but better now... enormous tiredness coldness and pain after any exercise... but I suggested t3 only as it’s wirth a go as it’s fast acting so you can quickly tell if you feel better. Really I’m no expert! I’m just experimenting in myself. I’m trying to get all my vitamins levels up (low folate currently) and just seeing what works. It’s not easy is it? All best regards.

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Im already on t4 😢😢😢i have no thyroid

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Your symptoms are most likely due to inadequate thyroid hormone replacement after thyroid surgery. Your low T3 is the key to many of your symptoms. I would strongly recommend changing to a natural desiccated thyroid medication rather than a synthetic, because it provides natural T3. Your neurological symptoms most likely come from low vitamin B12. Taken by injection every week or two works much better than oral or sublingual forms.

Finally, find a physician who listens to your symptoms and does not determine dose of medication by TsH levels.

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Soo u think low t3 causing twitching and pins and needles they are literally everywhere

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My endo did add t3 5mcg x2 day month ago to help me but no improvement

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My b12 levels are good

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Hi

I am quite sure that you need to try NDT and B12 injections. See web sites Hypothyroid Mom and stop the Thyroid madness. Reverse T3 is not an issue at the low dose of T4 that you are taking.

Usually people who have had a total thyroidectomy need at least 175 mg T4 or higher to get rid of symptoms. Also note that people who have had their thyroid removed are very difficult to get on the optimimal medication and dosage.

I hope that this information is helpful.

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Yes i have been on those websites but not found complete answers. I have a co worker on synthroid with no thyroid and has no issues whatsoever. Thats why ive been soo torn about whats going on with me...im about get mri of spine 😢 to help rule out ms...i dont know a doctor that would give me b12 injections with normal b12. I would love try NDT but dont know if endo will since i had PTC and they use thyroglobubin to monitor reoccurrence

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