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

BethanyOxe
BethanyOxe

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.

243 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.

BethanyOxe
BethanyOxe
in reply to Jazzw

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

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

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. :)

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??

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...

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

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.

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

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

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.

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

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.

Im sorry that was typo its bcomplex

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

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

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

Batty1
Batty1
in reply to BethanyOxe

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).

BethanyOxe
BethanyOxe
in reply to Batty1

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

BethanyOxe
BethanyOxe
in reply to Batty1

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...

BethanyOxe
BethanyOxe
in reply to Batty1

please read comments below by jacylnb she can related to my issue

If I"ve picked up your Frees correctly then it looks as if you are not adequately converting T4 to T3....your FT3 is far too low in relation to your FT4 result

You are undermedicated...symptoms indicate this

There may be various reasons for this but it is likely, with poor conversion, that you need T3.

Also optimise your nutrient levels

FT3 - 2.16 (2.18 - 3.98)

FT4 - 1.16 (0.76 - 1.46)

I understand it point thank u for responding...they have added t3 I didnt take the t3 or synthroid that day and I done labs in evening...

im on armour 3 weeks now still no changes

no changes on the t3 either

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.

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..

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

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

Im gonna check BP soon

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

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!

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

My pulse pressure was 53

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.

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

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!

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

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.

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

Best of luck to you!

Thank u

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

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

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

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

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...

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

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.

JAmanda
JAmanda
in reply to BethanyOxe

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).

BethanyOxe
BethanyOxe
in reply to JAmanda

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

JAmanda
JAmanda
in reply to BethanyOxe

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.

BethanyOxe
BethanyOxe
in reply to JAmanda

Im already on t4 😢😢😢i have no thyroid

JaclynB
JaclynB
in reply to BethanyOxe

Hi there. I am going threw exactly what you are going through. I had my thyroid a ablated back in 2012 and it took me about 3 years to find a doctor that took synthroid herself and told me I was over medicated with all those symptoms. I reduced my meds and now I take only 88 mcg a day of t4 only and I am finally getting more energy and less pain and pin prick sensations. Too much thyroid medicine will cause wasting of the muscles and tendon pain can be excruciating. Hope this helps. Anytime my tsh gets under 2.50. I get so achy like I have the flu. Oh and desicated thyroid is tricky because it comes from a pig thyroid and pigs require 10 times more t3 than humans so some people it can make worse. I ran a low grade fever for 2 months when I tried it. Just remember that thyroid meds of any kind too much can overstimulate the nerves. Hence more pain everywhere

BethanyOxe
BethanyOxe
in reply to JaclynB

Hi Jaclyn...thanks for responding. What kind of symptoms did u have???I have electric shock sensations all over as well..that is constant...and shooting pain in fingers and toes and etc...the shooting pain feels like a bone pain...

JaclynB
JaclynB
in reply to BethanyOxe

Yes I have deep bone pain and just yesterday I was sitting down and I got an electric shock feeling go through my neck and head. I’m in the process of backing off my thyroid meds just a little. Only 5 mcg less a day of my synthroid can ease the Ben pain tremendously. T4 is such a very narrow range of what is right for your body and not necessarily how high or low the TSH runs. It’s all about how you feel. I think anytime my meds are too much for me I have really bad anxiety. I don’t want to go anywhere. I cannot exercise because I get short of breath and my heart rate goes too fast. Then my legs get weak and also my arms. They will feel like dead weights on them. That’s a really good indicator that my dosage is too high. Sometimes you can have symptoms of too much thyroid for 3-4 months before your tsh ever reflects a problem. Oh and if you are having to go to the bathroom too much then you need to decrease meds

JaclynB
JaclynB
in reply to BethanyOxe

I have a question. Do you ever feel like all of your tendons ache and do you ever feel really bad joint pains?

BethanyOxe
BethanyOxe
in reply to JaclynB

I have most aches on one side of body. but shooting pain in both hips at back...and the shooting bone pain does fill deep...i have aches as well...muscle twitching at rest. thinking about seeing a 3rd neurologist ive completely devastated. I dont feel like my tendons ace...but i do have sharp joint pain which I explain as shooting pains....i was symptom free completely before thyroid removed except a pin prick occasional

JaclynB
JaclynB
in reply to BethanyOxe

I saw a Neurologist before who tested everything imaginable. Finally after having those symptoms for 5 months. My tsh showed I was overmedicated with a tsh of 0.24. The neurologist immediately called my Endo doc and said that I needed to decrease my meds and bring my tsh between 1.50-3.00. He said he had a lot of patients have pain subside when the reduced there meds. That was 4 years ago and after 2 months on the lower dose the pain stopped. Now fast forward to now and I had been increasing my synthroid for the past year slowly because my tsh got up to 6.57. I wasn’t having shooting pains then I was just tired. When my tsh got below 2.40. All heck broke loose and I’m devastated like you. So now I need to lower med again.

BethanyOxe
BethanyOxe
in reply to JaclynB

wow this is amazing to hear...where are your pins and needles at??

Batty1
Batty1
in reply to BethanyOxe

I have pins and needles too random places at random times like my big toe, shin and recently hands. I just had my lab results and my numbers are lousy TSH 150, FT4 below level and T3 super low Now as well.

I agree too much can be problematic but so can too little medication.

Anyone experience weight gain after thyroidectomy?

BethanyOxe
BethanyOxe
in reply to Batty1

I haven't had weight gain. but a tsh of 150 or 1.50...?

BethanyOxe
BethanyOxe
in reply to JaclynB

also I thought if u was over medicated u have palpation and diarrhea...see I dont have those issues which would of made me think I was hyperthyroid

JaclynB
JaclynB
in reply to BethanyOxe

My pins and needles are all over. Especially whenever I would take a deep breath the tips of my fingers would tingle fr a brief second. My heart didn’t palpitate all the time and I didn’t always have diarreah. Whenever you back off your meds it takes at least a month for you to feel a lot of improvement. To me being overmedicated is a lot worse than undermedicated. Do you ever feel a vibration inside your body. If so that was always a definite overmedicated sign.

BethanyOxe
BethanyOxe
in reply to JaclynB

like an international trembling??

JaclynB
JaclynB
in reply to BethanyOxe

Yes. It’s a horrible feeling. That is overmedicated feeling always for me.

BethanyOxe
BethanyOxe
in reply to JaclynB

does ur legs and arms fell like tgey going to sleep in positions like putting more pressure on other or barely bending legs??

JaclynB
JaclynB
in reply to BethanyOxe

Yes my arms and legs feel like that too. Lately I’ve been having a really wierd feeling in my legs like they are going to sleep whenever I’m walking. I’m at my wits end with all my symptoms. I have a 7 year old boy in cub scouts and I couldn’t even go on a 1 mile hike with him because it feels like my hips were going to explode with pain. It sucks to say the least. It’s also hard to think that all of theses crazy symptoms r all thyroid med related. I had a doc tell me that she couldn’t ever say one of my crazy symptoms weren’t thyroid related because it effects everything in the body.

BethanyOxe
BethanyOxe
in reply to JaclynB

im sorry you couldnt hike with your son. do the pins and needles hurt ? do u have any other co morbidities like diabetes etc and your b12 is good??

JaclynB
JaclynB
in reply to BethanyOxe

B12 is fine and no comorbidities. Just my dose of synthroid is too high and it has effected my nerves.

BethanyOxe
BethanyOxe
in reply to JaclynB

JaclynB...thank u for being patient with me asking questions. Do u also feel like u are being bite or somebody flickering water on you?? Does your tailbone ache?? do u have dizziness like somebody is pushing head forward??

JaclynB
JaclynB
in reply to BethanyOxe

No problem. Because I understand because I’m going thru it also. Yes it feels like I have a bull ant sometimes stuck in my pant legs and it bites me periodically. The tailbone pain comes and goes. Right now my whole spine is achy and all of my joints have been sore when I move them. It all started back in the beginning of the year when I told myself I was gonna stick with the higher dose of meds no matter what and the needle pricks was my very first symptom. Then I started to get weakness in my hands and thigh and upper arm muscles. I kept telling myself there was no way I was taking too much medicine. But when I started decreasing my meds is when I started to get more energy. If your meds r too high for your body to handle then it’s like a whole body nervous system burn out. If you started taking t3 and your symptoms didn’t lift drastically then you need to go the other way and lower them. Another indicator that your dosage is too high is if your symptoms get way worse a few days before your period. And the reason why that is is because estrogen levels drop and estrogen competes with thyroid in the blood so when estrogen decreases then thyroid levels get more potent in the blood. Last night I couldn’t sleep because my legs were so hot and sweating. That’s another sign for me. And dizziness is definitely a hyper symptom for me. When my dose is too much I stumble around and I feel like I have episodes of falling

BethanyOxe
BethanyOxe
in reply to JaclynB

oh wow! I dont have a period because of IUD so not sure how that would be! I dont have heart palpations...no diarrhea...no weight losswithout trying so i went into thinking it was nerve related which why i seen neurologist...ive had 2 mri a lumbar puncture emg and nerve conduction test...thinking of seeing 3rd neurogist...pth was just tested was in normal range ...waiting of lyme to her which will be normal...the other thing is the floaters that appeared during all this crap....if I had an enemy I wouldn't wish it on anybody. my ears pop all the time like ive been under water and got off plane...i can't think straight a lot of times and in a total blank...forgetful and brain fog

JaclynB
JaclynB
in reply to BethanyOxe

Before I had an ablation on my thyroid I lived in a hyperthyroid state for 10 years. I am very familiar with the symptoms of hyperthyroidism. I felt like I had plugged up ears all the time severe dizziness instant eye floaters and that’s because too much thyroid causes the tissue behind the eyeball itself to kinda swell The ears feel like that because you are overstimulating every nerve in your body. Even your vestibular nerve in the inner ear that controls balance gets over stimulated and you get my ringing pressure and dizziness. Hypothyroid and hyperthyroidism share some very similar symptoms but needle pricks and dizziness weakness ear ringing is always overmedicated. If I were you I would stop the t3. And see if you get any improvement. Then if not I would start dropping the dose of your t4 until your tsh runs between 2.50 -3.00. Just to see for a few months if you don’t improve drastically. I know so many people say the opposite. But some people can’t tolerate having a tsh under 2.00. My Endo always told me if you don’t feel better raising the dose then you need to go the other way. It took about 4 years to understand this journey. I was grasping at every straw I could in the beginning thinking it had to be MS or Lyme disease or even a full body fungal infection. And all it was was that my body likes to run a little higher in the TSH.

BethanyOxe
BethanyOxe
in reply to JaclynB

what do u mean by instant eye floaters?

JaclynB
JaclynB
in reply to BethanyOxe

I mean that when I was at my worse hyperthyroid state I developed so many floaters it was crazy. And the neurologist said it was because hyperthyroidism causes so many eye problems I don’t have the autoimmune type but it doesn’t matter. Anytime your overmedicated or in a hyperthyroid state of any kind it will cause dry gritty feeling eyes pressure sensation around and behind eyes. And floaters. Once I got my tsh between 2-3 my eye symptoms stopped completely. Whenever I look up at the sky they look like little specks. They will never go away but as long as I don’t take too much synthroid it will not do it. I have ever symptom of ms and Lyme and all kinds of nerve problems when my dose is too high. If this all started after thyroid removal then you started taking thyroid replacement and it’s aggravating your nervous system even if your tsh is below 2. Some people’s nerves and body’s can’t tolerate thyroid hormone because it’s so stimulating. I have lived 10 years being hyperthyroid and then had my thyroid killed and started taking synthroid. And all of my crazy nerve and ms like symptoms stopped. Until periodically when my dose of meds are a lil too much for me and it start back up. Like plugged feeling in ears ringing in ears shooting pains pricks everywhere and more eye floaters. Then I decrease my meds and after a month it starts to settle down. You could go to every neurologist in the world and they will not have the experience to tell you if it’s related to your med dosage because you would have to go through this journey like I have to understand how much thyroid medicine being overdosed could ruin your life. I know it’s hard to grasp that it’s all thyroid related but it is. I just wish when I first started taking thyroid meds it wouldn’t of taken me 4 years to find a doc who takes it herself to tell me I needed to be between 2-3 with tsh to feel better

BethanyOxe
BethanyOxe
in reply to JaclynB

yes I have electric shocks in my face and back legs everywhere...my left side is stiff...feels like a pulling sensation under left rib ...sharp pricks in my butt....i even have numb inner lip cheek and it burns like burning mouth syndrome....thats thyroid too numbness...this is so extreme....i have fasted and pray to jesus for relief...i have wanted to not wake up lately...cause of all this....this has to be rare...i don't hear of other ppl having issue...why tightness mainly one side of body...

BethanyOxe
BethanyOxe
in reply to JaclynB

Thank u for ur reply. so if u didn't gave the autoimmune kind what kind did u have?? my symptoms started as they increased my dose i just got worser and worser...and there's for few months no dosage increase but symptoms worse...these electric shocks and pins and needles feel like real nerve pain...and the left side of body is most affected predominantly do u have that issue??? do u also have twitching all over...my vision bluffs up real fast but goes right away. for months I don't wanna wake up cause i feel like im in hell...and caise this isn't a common thing doctors dont know how to treat...neurontin only helps a lil bit...and endocrinologist declares she has took care of many patients with no thyroid and she never heard of paresthesia...shecsaid her gut tells her its something else. I get sharp pain in left rib and left butt check and left ab...everyday...never in the right...how can medicine choose a side...this is a mental battle...im not questioning u ...i need understanding...ur personal experience has helped me...and I can testify that as they increased dose and tsh lowered it all got worse...but when symptoms got soo bad I was like ok this cant be thyroid...so I go to doctor to doctor to doctor and to doctor...and just my lp after insurance $1000 and I cant pay that right now...im not a year out from csection and total thyroidectomy...i feel defeated

JaclynB
JaclynB
in reply to BethanyOxe

Everybody’s nerves are more sensitive in some parts of there body’s then the other. Yes I have been just like you before and I’m back to that now because I thought I would raise my medicine and my life absolutely fell apart. I’m in so much muscle bone pain I can hardly walk. But I know after a month or two on a decreased dose I will be better. I have no functioning thyroid and I need a dose between 75-88. So I have to break tablets apart and add to another to get around 82 mcg daily. Because 88 cause hyper and 75 cause hypo. Yes it’s that narrow of a window. If you got worse after increasing your meds then there’s your answer. It’s the dose is still to high. Oh and I had a hyper functioning nodule that had to be killed

BethanyOxe
BethanyOxe
in reply to JaclynB

do u ever get sensations like something crawling on arm or feet...

JaclynB
JaclynB
in reply to BethanyOxe

Absolutely. That’s your nerves being overstimulated.

BethanyOxe
BethanyOxe
in reply to JaclynB

I get this stuff every minute or every day...theres no break....i feel like im being invisibly attacked

BethanyOxe
BethanyOxe
in reply to JaclynB

I have developed acne breakout which I thought was stress

BethanyOxe
BethanyOxe
in reply to JaclynB

that is a very narrow window...that pretty serious

JaclynB
JaclynB
in reply to BethanyOxe

That’s how sensitive the body reacts to thyroid. And you were taking t3 as well for a lil while and t3 is a lot more potent than t4. If you were taking 5 mcg in am than that’s like adding 20 mcg of t4 to the 100 mcg dose totaling 120 mcg a day not counting your nightly dose. If I took that high of a dose I would be so sick I would be in the hospital

BethanyOxe
BethanyOxe
in reply to JaclynB

and it took u 4 years to figure all this out...did ur family and coworkers think u was going crazy???

JaclynB
JaclynB
in reply to BethanyOxe

Yep. 4 years. Because everyone kept telling me that tsh needs to be lower for you to feel better and I didn’t realize how bad thyroid could effect someone.

BethanyOxe
BethanyOxe
in reply to JaclynB

I don't fell that bad when I first wake up and as day goes by everything gets worser

JaclynB
JaclynB
in reply to BethanyOxe

So basically it all kinda starts about 1-2 hours after you take your thyroid meds. I know that’s how it starts for me

BethanyOxe
BethanyOxe
in reply to JaclynB

I wake up feeling the pins and needles slighty and a lil twitch her and there...but all the pains get worser later in day...i take medicine and as day goes by everything just gets worser. did ur symptoms ever get worser without increasing dose

JaclynB
JaclynB
in reply to BethanyOxe

You might have always been on too much thyroid meds from day one. Have you ever had your tsh in the higher end of the normal range just to see if things will calm down after awhile?

BethanyOxe
BethanyOxe
in reply to JaclynB

when I first went to endo in Feb 2 months after surgery tsh 5 something...i only had ear popping a,lil far as I remember...the ent said that was side effect of synthroid

JaclynB
JaclynB
in reply to BethanyOxe

It would be worth a trial run for a few months to take maybe the 88 mcg for awhile and see if you start improving.

BethanyOxe
BethanyOxe
in reply to JaclynB

I hope soo...do u know others with same situation as u and it helped them or this is rare.

BethanyOxe
BethanyOxe
in reply to JaclynB

do u ever experience numbness anywhere?

JaclynB
JaclynB
in reply to BethanyOxe

Yes when I’m overmedicated. I can almost garentee if you decreased your meds for at least 5-6 weeks you would see a huge improvement. All your symptoms r from overmedicated. When you take too much of that stuff it’s like scraping your nails on a chalkboard for your nerves. They go haywire. I remember after I had my son the endocrinologist forgot to tell me to decrease my synthroid from 112 to 88 for 4 months after I had him. I became so overmedicated I will never forget how sick I was. I couldn’t drive my car because the dizziness was so bad. All my nerves went nuts. They sent me to neurologist and all kinds of docs. They finally checked my tsh and it was 0.40 and the endocrinologist called to apologize for not telling me to decrease my meds. When your pregnant your body needs a lot more thyoid replacement. I’ve been in your shoes many times to know what is wrong with you based on your symptoms.

BethanyOxe
BethanyOxe
in reply to JaclynB

So on Sept 13 my TSH 0.2 down from 0.5 ...this was after taking me off synthroid 125 to synthroid 100 and t3 5mcg x2 day...my free t3 has always been at low range...free t3 2.1 on synthroid 125 when tsh was 0.5 ....and free t3 2.3 on synthroid 100 and t3 2x day and mind u I took no synthroid or t3 that day...nothing...and lab work 4pm later that day...they didn't tell me how to do labs since I took t3 2xday so I took nothing

JaclynB
JaclynB
in reply to BethanyOxe

I would feel absolutely awful with a tsh of 0.20. I would take 88mcg a day for awhile to see if you improve. The highest my free t3 has ever been in my life was 3.1 and that was when I had my ablation for hyperthyroid. I know a lot of people say ignore the tsh and look at the frees but tsh is very sensitive when it comes to what your body needs and doesn’t. If raising your med made you worse than that’s your body telling you your overmedicated.

BethanyOxe
BethanyOxe
in reply to JaclynB

soo did u ever get twitching and did you gain weight when hyperthyroid..if that's dumb question im sorry

JaclynB
JaclynB
in reply to BethanyOxe

I always gained wait when I was hyperthyroid. Because for some people it stimulates an appetite. When my tsh is above 2.00 my appetite decreases because the thyroid hormone is what controls are hormone that tells you when your hungry. So more thyroid hormone more appetite. But sometimes it’s the other way too. Twitching was one of my most obvious symptoms that it’s time to lower my dosage. I remember one time my dose was too much and I saw a neurologist because I thought I was getting ALS. Which is Lou Gehrig’s disease. It was so scary. I lowered my dose down from 100 to 82.5 and all twitching went away and I started losing wait. There’s no dumb question or too many questions.

BethanyOxe
BethanyOxe
in reply to JaclynB

wow...this is weight docs cant figure stuff out cause u go look at hyperthyroid list it will say weight loss ...i have gained 5lb recently but I haven't been watching what I eat either. but I do notice I am less hungrier. twitches are my last symptom to get ...a lot of all my symptoms on left side..as if someone drew a line straight thru me. I know what u mean ALS scare...im going see new endo Oct 29 i pray she can relate to my story and willing try lower dose..ill try anything..if they told me to eat Dookie I do it to be cured...i have thought to stop the meds to see a change but I said no that would mess up my labs ...😂😂wonk wonk

JaclynB
JaclynB
in reply to BethanyOxe

You could always just call your doc and see if they would call in the 88 mcg dosage for you. My doc has never given me an issue about it. Just tell them that you want to at least give it a try.

BethanyOxe
BethanyOxe
in reply to JaclynB

I will see

BethanyOxe
BethanyOxe
in reply to JaclynB

I just read this message im sorry...i get multiple and missed it...where was the areas u got numbness?? Did u get electric shocks and pricks in face too??

JaclynB
JaclynB
in reply to BethanyOxe

I got them around my eyes near my temples a lot. My tongue would even go numb. But that has now stopped now that my meds are lowered

BethanyOxe
BethanyOxe
in reply to JaclynB

Wow and was it constant everyday...throughout the day...u are only person ive encountered with soo many similar symptoms to me and that's why I'm asking soo many questions...ive convinced myself almost I still have MS because these serious neurologic manifestations...they have become painful...i even get in hips toes eyes...these sharp pin pricks are hideous...feels like serious nerve damage. I even have burning mouth syndrome....my inner cheek and left inner roof of mouth has been numb and burning since May around same time my TSH dropped to 0.5 vs 1.0

even stomach gets electric shocks..litetally everywhere

JaclynB
JaclynB
in reply to BethanyOxe

Yes that’s good ol overmedication. Basically your nerves are being fried. My nerve manifestations become constant when my tsh gets below 2.50. And if it’s below 1.00. I’m in serious trouble. I was in your shoes and thought for sure it was ms or als. There’s no Endo or doc that will know this unless you go through it yourself or have lived hyperthyroid for as many years as I did. T4 has a half life of 7 days so that means it’s gonna take at least 5-6 weeks for your body to calm down. Some docs will have people stopped their meds for a few days to help with the symptoms and then restart the lower dose. That’s all it is that’s going on with u. Simple dose change is all you need. I know it’s hard to believe that the thyroid hormone can do that much to a person but it controls the speed of which every cell in the human body functions including nerve cells.

BethanyOxe
BethanyOxe
in reply to JaclynB

How many endos did u have to go through??Did u feel like one side of ur body normal and the other not??

JaclynB
JaclynB
in reply to BethanyOxe

I probably went through 6 endos. And yes be side of my body would feel so strange with all the nerve problems.

BethanyOxe
BethanyOxe
in reply to JaclynB

what was they all telling u....am I bothering u???

JaclynB
JaclynB
in reply to BethanyOxe

No your not bothering me. They all kept saying it wasn’t my medicine to see a neurologist and they kept blaming it on other things. Until I met a doc who took the medicine herself and saw my tsh below 1.00 and told me that all of my symptoms were from taking too much thyroid hormone. She said most people feel better when they run a little higher on the tsh. And boy was she right. She had me lower my dose from 100 to 88. Then again to around 82.5 mcg. That’s where I feel my best.

BethanyOxe
BethanyOxe
in reply to JaclynB

Wow it took 6...i think i would have cried after the 3rd cause it leads us to think yes it must be neurologic then....soo I read somewhere that if ur TSH is low and ur free t3 isnt optimized then it does make u feel horrible which is why i suggest freet3 to my endocrinologist..

for 1 week i got lil more energy but that's it ....i have a stiffness in left side...did u have something similar to sciatica or tightness in butt area and or even an muscle area like u had worked out?

JaclynB
JaclynB
in reply to BethanyOxe

Yes you described it perfectly about the stiff feeling. When I try walking I get shooting pains like sciatica and the backs of my legs want to cramp on me. When my dosage is too high then I ache really bad above my knees too.It’s getting a lot better since I decreased my dose though. Nerves can get so jumbled up when we are not on the right dosage of thyroid. Especially too much.

BethanyOxe
BethanyOxe
in reply to JaclynB

I guess what I'm asking is was ur stiffness on one side....mine is all left which is weird ...most of pins and needles and even twitching left side...tight left upper back...left side..left ab..left outer hip and left buttock

JaclynB
JaclynB
in reply to BethanyOxe

Sometimes it was only left side but sometimes it is all over. Everyone’s different on how there nerves react to thyroid replacement. But twitching is definitely overmedicated. 88mcg for at least 2-3 months and reevaluate your symptoms. If it’s a huge improvement then you will know. But with a tsh of 0.20. I would be just like you. Oh and t3 will really make you twitch like crazy. I tried it once and I would never take again. Thought I was dying

BethanyOxe
BethanyOxe
in reply to JaclynB

I had small twitch here and there but after she put me on t3 it did get worser...soo u tried armour too?? I thought when she agreed let me try it it was gonna fix everything but no...no changes I have no idea what labs will be next few weeks

BethanyOxe
BethanyOxe
in reply to JaclynB

nevermind I remember u said u did try it

JaclynB
JaclynB
in reply to BethanyOxe

Please keep in touch and let me know if you find relief or not

BethanyOxe
BethanyOxe
in reply to JaclynB

I remember everything u have said....did ur muscle pain or soreness get slowly worser over time in the same location. like slightly noticeable and then as weeks and months went by got worser and worser ?? its just been a stead progression my left butt and hip thigj/hamstring feels super tight as if I have pulled it

BethanyOxe
BethanyOxe
in reply to JaclynB

Did u get nauseous with eating sometimes

JaclynB
JaclynB
in reply to BethanyOxe

Yes because thyroid controls the speed of your digestive system so the more thyroid medicine you take the quicker your intestines and stomach churns. I get so nauseous when my medicine dose is too much for me I won’t eat much

BethanyOxe
BethanyOxe
in reply to JaclynB

Did u get electric shocks in butt and back?

JaclynB
JaclynB
in reply to BethanyOxe

Yes I’m dealing with that now because my dose of thyroid med was too high for me.

BethanyOxe
BethanyOxe
in reply to JaclynB

I'm soo glad I got talk to u cause it makes me hope...its a mental battle. my life was soo happy before all of this...even my daughter says mom I want you back...i thought i would cry....soo how long u been on the new lower dose??

JaclynB
JaclynB
in reply to BethanyOxe

I’ve been on the lower dose now for about 6 weeks. I’m sooo much better health wise than I was two months ago. When I wake up in the morning I don’t feel the strange pulling sensations in my legs anymore. I completely stopped feeling the pin prick sensations as of now. I still get shooting pains off and on but they keep improving every week now on the lowered dosage. I’m getting my strength back slowly as well. So many people in the beginning think it’s all because their dosage is too low when it’s the opposite.

BethanyOxe
BethanyOxe
in reply to JaclynB

I'm happy for u. what does the shooting pains feel like to you?

JaclynB
JaclynB
in reply to BethanyOxe

Just random bone pains. Sometimes there in my forearms other times it’s a dull toothache feeling in my legs. It’s horrible.

BethanyOxe
BethanyOxe
in reply to JaclynB

I think that's what I get in my hands and wrist..somtimes it shoots in my elbow or shoulder or toes ...the electric shocks feel like a burst of nerves shooting off. when I press gas pettle my foot or leg wants to tremble I have fine tremor. i even a buzzing feeling in certain areas like my temple. or arm or leg?? Do u get a buzzing feeling??

JaclynB
JaclynB
in reply to BethanyOxe

What you describe is pure classic overmedicated for sure. If I feel buzzing anywhere then that is when I know. You described it exactly. The buzzing sensation in my chest and arms were so bad it caused so much anxiety. Reducing your meds to 88 mcg and no t3 will get rid of all that for you

BethanyOxe
BethanyOxe
in reply to JaclynB

I pray thats all it is. I'm really concerned. The twitching is worser now. Mentally I feel like a person morphed out my body...my mind even feels out of space 90% of the time. and if im hyperthyroid why am I sleepy all the time?? i just turned 34 and feel almost 80 years old sometimes from pain and stiffness. I have been on armour 60mg for almost 1 month this Friday. I go see a new endo Oct 29 i get my labs drawn 5-6 days prior 2...do I just not take day of just like with synthroid. I dont get labs in morning I get afternoon cause of work!?!?

JaclynB
JaclynB
in reply to BethanyOxe

you will be more sleepy because your metabolism is running to fast and is burning out causing complete exhaustion. Hyperthyroid causes so much fatigue. I would definitely wouldn’t stop meds before testing. If you are getting worse with armour that definitely tells me that you are very sensitive to thyroid replacement meds and you would feel so much better once your nervous system calms down with a smaller dose of meds.

BethanyOxe
BethanyOxe
in reply to JaclynB

have u encountered other people like u that have same symptoms or did ur endocrinologist say yes she seen it but not common??

JaclynB
JaclynB
in reply to BethanyOxe

Yes there is a lady that draws blood at my doctors lab that deals with the same condition. Which is becoming hypothyroid after losing your thyroid and she feels the same symptoms if her tsh runs to low. And my endocrinologist says that everyone is different and that a lot of her patients feel better with a higher tsh.

BethanyOxe
BethanyOxe
in reply to JaclynB

Thank u for helping me! im glad ur getting relief.

JaclynB
JaclynB
in reply to BethanyOxe

No problem. Just keep in touch and let me know.

BethanyOxe
BethanyOxe
in reply to JaclynB

I will

BethanyOxe
BethanyOxe
in reply to JaclynB

I forgot to ask..was nerve pain soo bad u took nerve medication

JaclynB
JaclynB
in reply to BethanyOxe

Yes. It’s still really bad. But slowly getting better. It can take awhile after you lower your dose because it takes awhile to get that way. The pain gets so bad sometimes that I’m afraid for the future but I just keep reminding myself that it will get better. Sometimes my doctors will prescribe lorazepam to calm my nerves down because the thyroid has them basically over firing so to speak. Nerves are the most sensitive to fluctuations in thyroid levels. And when it’s to much for them to handle the basically scream out to signal a problem. Thyroid hormone is the gas pedal for which every cell in the human body functions. This includes nerve cells brain cells stomach cells and so on and on. Took many years for me to out smart this thing. Thyroid truly is the motherboard of the human body. If your dose is too much for your body to handle then it’s like taking adrenaline nonstop at high levels After awhile your nerves start to misfire and that’s when you get all the wierd sensations. Don’t listen to someone that tells you that they take thyroid meds and don’t feel those symptoms because they are probably on a dose that’s low enough for their body not to create those symptoms.

BethanyOxe
BethanyOxe
in reply to JaclynB

I mean like neurotinin...i have sharp nerve pain in back and hip and mouth and even stomach muscle...shooting pain down left buttock and thigh...actual nerve pain ...on top that a burning sensation. it hasn't affected my digestion but sometimes bad internal tremor ...makrs me wanna scream. I wish I could see doc that recognizes this

BethanyOxe
BethanyOxe
in reply to JaclynB

yes I know other ppl take synthroid no thyroid no issues...which is why it's soo hard to believe...im tired living like this..i can say dizziness is better.

JaclynB
JaclynB
in reply to BethanyOxe

What have you done differently that you think is making the dizziness better. I know it’s sooo hard to believe

BethanyOxe
BethanyOxe
in reply to JaclynB

idk been on armour 4weeks thats all thing different...everything else the same

JaclynB
JaclynB
in reply to BethanyOxe

I felt like death on armour. It was awful. Made me run low grade fevers all the time and made me feel so listless. I couldn’t hardly get out of bed. I live in Kincaid Illinois. I don’t know many people that have lost their thyroid I wish they had support groups

BethanyOxe
BethanyOxe
in reply to JaclynB

no fevers here...more hot flashes though but dont break out in sweat. oh wow I thought u was from UK im from US too. I guess ppl that have thyroid s but on medicine might not have as extreme issues idk...did u have numbness in stomach muscle and buttock or other places too???

JaclynB
JaclynB
in reply to BethanyOxe

Yes I did have numbness in various places. Sometimes I wonder if it’s that are body’s are just absolutely rebelling against us after removing the thyroid or killing it. Either way the thyroid makes like 7 or so hormones T0-T7 I think. They say we only need the t4. Because the others are useless. And I think that’s where the medical world is sooo wrong. Those other hormones do something or they wouldn’t exist. And most endocrinologists focus more on diabetes then thyroid anyway. And unless you can find one who takes thyroid meds to know better then it sucks. And you go years living in desperation gripping at straws to find answers. My joints and muscle pain is my biggest issue right now. But if I raise my meds then it just gets worse.

BethanyOxe
BethanyOxe
in reply to JaclynB

So when ur TSH increased the numbness went away? Just completely disappeared. Yes I read somewhere about all the hormones which is why i thought armour would help me cause it has all those hormones. my endocrinologist said she's managed many pts with thay had thyroid cancer and never seen parathesia. the new endo I see Oct 29 im only going to her cause my aunt sees her and said her endo said the electric shocks was relayed to thyroid but afterward I think my aunt was referring to electric shocks going through body not like electric shocks in small places like face arms legs back chest toes heaad and etc. I'm desperate....theres no relief right now im typing and have pins and sharp needles through my hands arms legs and heas all at same time. And it's constant...sometimes I go 5-8min and feel 1 or 2 but that's rare. it's like my nervous system has been highjacked....where is your muscle pain? if u told me already im sorry.

BethanyOxe
BethanyOxe
in reply to JaclynB

I talk to my mom about this and her answer is run to doctor and I'm tired of running to doctors with no answer and no help...and it's like im in a bad dream I cant wake up from everyday. I'm depressed and I'm not a depressed person...i usually lead worship in church and this has changed a lot in my life...maybe it's a test idk

JaclynB
JaclynB
in reply to BethanyOxe

It’s no test and the muscle aches are all over the electric shock needle pricks are finally gone. Took about 8weeks on lowered dose. Your nerves are being high jacked by too much medicine. Armour is great but it has 10 times the amount of t3 than a human body need. Take 88 mcg of synthroid name brand and wait two months and I promise you will feel so much better

BethanyOxe
BethanyOxe
in reply to JaclynB

do u get pulling sensation under ur ribs??

JaclynB
JaclynB
in reply to BethanyOxe

Yes I get that too. You will get the wierdest symptoms ever. Just think about the fact that our nerves are the reason we can even feel pulling sensations. Thyroid hormone is what controls the speed at which your nerves communicate. When your tsh gets low signaling too much thyroid medicine then your nerves will go absolutely haywire. I have been in your shoes enough times to know.

BethanyOxe
BethanyOxe
in reply to JaclynB

even my stomach feels numb...or the muscles...thats why i thought it was ms...my toes get numb feeling too

JaclynB
JaclynB
in reply to BethanyOxe

Yep. That’s because overmedication causes nerve damage in the same way as high blood sugar.

JaclynB
JaclynB
in reply to JaclynB

I was wondering if you have ever googled hyperthyroidisms effect on the nervous system and read about the symptoms. It might help ease your mind. I am 38 years old and yes I feel like I’m 80 too!! Thyroid problems are terrible for me to emotionally and mentally deal with. Sometimes I feel like I have lost myself and who I am.

BethanyOxe
BethanyOxe
in reply to JaclynB

I have googled hyperthyroidism in multiple places . and no where is numbness and tingling and paresthesia...i have found palpations...diarrhea...i have none that...not really insomnia...i do wake up sometimes. I think another reason I struggle believing is cause ur only person I found with very similar issue and in the community u don't see this either...seems rare. maybe they deal with it in jusr some ways but not larger degree...example pins and needles every where...and in the back of my mind they did find 1 or 2 spots on brain which could of been ms and I seen 2 neurologist and the 2nd one said no ms...i guess he thought i was stressed out...but the progression of symptoms yes causes anxiety. 95% problems started after thyroid removed and they started going up on dose..i mentally feel fogged and out of it. I hear yeh about emotional and mental...i have broke down and cried many times...its overwhelming...

JaclynB
JaclynB
in reply to BethanyOxe

if raising your thyroid meds makes your symptoms worse than that’s probably what’s causing your symptoms. If you’ve never tried backing down on your dosage. It would be worth a try. I lived over 10 years with severe hyperthyroid and I’ve lived 8 years hypothyroid now on synthroid. I can always base if my dose is too much for me by how many pin pricks I get in my hands and especially around my eyes and cheeks. If I’m having hot flash sensations that’s my other clue Sometimes I just have to go by my symptoms verses the tsh. Another thing that always bothers me when my dose it too high is dry eyes and blurry vision. Tremors are another sure thing that it’s time to lower dose.

JaclynB
JaclynB
in reply to BethanyOxe

Oh and something else to consider is when they started you first on theyroid meds did your symptoms start to peak around 6-8 weeks and you probably thought that it was because you weren’t on enough meds so you probably kept increasing the dose and slowly getting more symptoms.

BethanyOxe
BethanyOxe
in reply to JaclynB

my initial dose after surgery was 75 levothyroxine then 88 then 100 then 112 then 125...after 100 I started feeling bad at 100 us where the tingling came in hands and feet...

JaclynB
JaclynB
in reply to BethanyOxe

Yep that to me explains what is causing your issues. Same thing happened to me. My tingling and symptoms started after just 88 mcg. My dose I feel best on is taking one 75 mcg tablet and breaking a 50mcg tablets into 1/4th then breaking the 1/4 in half which is 81.5 mcg. 88 mcg puts me over edge but 75 mcg isn’t enough either and yes it’s that narrow of a dose that you will have to find

BethanyOxe
BethanyOxe
in reply to JaclynB

they dose off of body weight...rhats what endo told me

JaclynB
JaclynB
in reply to BethanyOxe

If I were dosed by my body weight I would be taking 125 mcg. And at that dose my tsh would run 0.01. Maybe even undetectable. And I would feel like I’m dying.

BethanyOxe
BethanyOxe
in reply to JaclynB

well the initial doses and they want my TSH 0.5 that theyre goal for me cause i had cancer and they want tsh suppressed to keep cancer from growing back.

BethanyOxe
BethanyOxe
in reply to JaclynB

how am I ever gonna persuade an endo to let my TSH go up??

JaclynB
JaclynB
in reply to BethanyOxe

Well if the medicine is making you feel this way than ask your doc if you can do a trial for awhile just to see if it gets rid of your symptoms. At least it would give you a peace of mind

BethanyOxe
BethanyOxe
in reply to JaclynB

I have a burning in my left shoulder and left back thigh and hip...its progressing

BethanyOxe
BethanyOxe
in reply to JaclynB

I'm gonna ask...not demand but ask. I'm desperate

JaclynB
JaclynB
in reply to BethanyOxe

I hope this will help you. If anything if after awhile on the lower dose your symptoms start to get a lot better it will help you deal with the symptoms of living with a lower TSH in the future. Keep in touch and ask as many questions as you want.

BethanyOxe
BethanyOxe
in reply to JaclynB

so u felt like you literally had nerve damage..stinging burning pain in areas

JaclynB
JaclynB
in reply to BethanyOxe

Yep I sure did. That’s because my nerves are very sensitive to thyroid hormone. It’s basically overactive nerves from an overactive metabolism

BethanyOxe
BethanyOxe
in reply to JaclynB

Thank u

JaclynB
JaclynB
in reply to BethanyOxe

Your welcome. I sure hope I have helped you. It helps me too knowing I’m not the only person dealing with the same cruel outcome of this crazy journey.

BethanyOxe
BethanyOxe
in reply to JaclynB

Yes you have certainly helped me! Thank u soo much! im afraid.....tgis is life changing

BethanyOxe
BethanyOxe
in reply to JaclynB

I went today and got my labs drawn...i get my labs drawn in evening due to work. I did not take my armour today! I go see new endo next week Oct 29....they will have new set of labs. I'm tired of living like this and I'm going to cut my armour 60mg in half and start taking it that way...the sensations are worser and I feel worser...the pain is worser. and i know that's not best but it will be 1st time I've not followed medical advice but im suffering

JaclynB
JaclynB
in reply to BethanyOxe

Well I definitely understand. You will slowly have to be your own boss when it comes to medicine dosages because it’s so hard for a doctor to know what dosage will be best for you. If your symptoms start improving just a little with decreasing your dose then you will know that your on the right track. Armour has a very high dose of t3 that it’s so hard for the human body to tolerate it even at small doses. So even if you decrease the dose it’s still gonna be hard on your system.

BethanyOxe
BethanyOxe
in reply to JaclynB

u would not believe my TSH is 23.4 free t3 1.6 free t4 0.51...and I'm crying

JaclynB
JaclynB
in reply to BethanyOxe

Omg. No wonder you feel bad. You need to see if that new Endo will get you in sooner. You are definitely hypothyroid. Wow.

BethanyOxe
BethanyOxe
in reply to JaclynB

but my symptoms didnt get better with high tsh...but nerve pain worser

JaclynB
JaclynB
in reply to BethanyOxe

Wow! you’ve taught me something I think.

JaclynB
JaclynB
in reply to JaclynB

did you have constipation or fluid retention?

BethanyOxe
BethanyOxe
in reply to JaclynB

no I didn't.... I literally went from TSH 0.2 to 23.4. it's like im not taking the medication. i wasnt expecting this

JaclynB
JaclynB
in reply to BethanyOxe

Hi there! Did you ever see your new endo? I’m curious how it went and what they said

BethanyOxe
BethanyOxe
in reply to JaclynB

Hi! oh she suggested I get nerve biopsy. she said its just coincidentally I have these problems when thyroid removed and still possible I have MS. She said this wouldnt be related to thyroid because as u can see its progressive...those her words. she recommends I follow up with neurologist...she did however say the armour 60mg I was taking wasnt enough and uped to 90mg and redraw in 3 weeks vs 6 weeks to see if helping. she drew 19 labs...tested cortisiol...lupus...celiac all kinds stuff...im at a complete loss...she said t3 was been constantly low and hopefully raising armour will help

JaclynB
JaclynB
in reply to BethanyOxe

Well the next time I have an endocrinologist say it’s not thyroid related I’m just gonna ask them if they have thyroid problems or not. I bet she doesn’t. I hope you get relief from the increase in dosage. I’m thinking your nerves can go haywire at both hyper or hypo. I’m surprised that she can say that the nerve problems aren’t from thyroid. Because the thyroid effects everything in the human body. Even nerve cell have thyroid receptors. I know the doctor that I had that has hypothyroidism herself said that she could never dismiss any symptom I had being related to the thyroid because it effect everything. Only doctors that take the meds themselves and live this journey would know. If it starts getting better please keep me updated.

BethanyOxe
BethanyOxe
in reply to JaclynB

I will. i sense u genuinely care. How are u doing??

JaclynB
JaclynB
in reply to BethanyOxe

I do care. It comforts me knowing I’m not alone in this mess. I have the hardest time finding my optimal dose. Right now I think I’m going in the hypo direction really bad. I feel very drowsy and out of it. I feel like I’m in slow motion. I either go from twitching like crazing and stinging to weak and drowsy. I guess that’s the depression that comes with hypo. I wish I knew why I can’t handle getting my tsh to the optimal range

BethanyOxe
BethanyOxe
in reply to JaclynB

How do u feel out of it?? How do u feel twitching I thought u got that only when hyper for u?? At what place do u have no symptoms??

BethanyOxe
BethanyOxe
in reply to JaclynB

Sorry soo many questions?

JaclynB
JaclynB
in reply to BethanyOxe

I don’t have anymore twitching now that my tsh is rising. I only get the twitching and needle pricks when I take more than 81.5 mcg a day. Now that is gone and I’m just weak and drowsy. When I feel out of it I mean it’s like taking Benadryl during the day. Like fuzzy headed. I just read on here today someone else talk about having the water droplet feeling ang prickly feeling when overmedicated.

BethanyOxe
BethanyOxe
in reply to JaclynB

oh really..i understand ur message now u are referring to two extremes. yes I can related to the out of it feeling. oh really I have a hard time reading finding ppl with thar sensation...usually it's ppl hypo...im glad ur doing better. I wish I could say same...i feel defeated. my vitamin d is low soo im gonna take 5000 a day vs 3000.

Sweenco
Sweenco
in reply to JaclynB

That’s funny because I have these symptoms and I’m hypo/hashimotos and not over medicated.

JaclynB
JaclynB
in reply to Sweenco

All I know is when I take too much of any thyroid med and my tsh gets below 2.50 I get all of those symptoms. Some people just feel better when their tsh runs a little higher. It took a doctor that takes synthroid to make me realize that. I kept fighting with the thought that it must be that I needed more thyroid but it was the opposite

BethanyOxe
BethanyOxe
in reply to JaclynB

yes the dizziness feels almost constant ....

Your the very same as me even the brain scan ❤️ I only have thyroid antibodies t3 t4 tsh all normal

keep me updated take a look at my posts and profile xx

is your antibodies high? Do u have Hadhimotos??

Hashimotos

Apparently no according to my neurologist it just indicates there is autoimmune activity going on xxx

Yes they are raised they believe I have uctd

If your lumber puncture is negative it’s unlikely to be ms

I was first diagnosed with ms my mum had it x

u can still have ms with negative lumbar puncture chances are 5-10% how many lesions you have? what is utcd...did they mri ur spine and tspine

i really want you to not have ms I just know there is small chance im facing same battle

Yes I know but it’s unlikely

I have multiple lesions and none on my spine

Apparently wrong area for ms

Have you seen a ms specialist ?

Uctd is undifferentiated cognitive tissue disorder

Xx

I seen a neurologist and then seen I a ms specialist...first scan was brain mri and I have 1 obvious lesion so they really say i have ms cause need multiple and only have the 1 its periventricular

Even with multiple they have to be in right place many things can mimic ms x

yes and that's scary cause i think periventricular is one those areas

Have you looked into lupus? X

I wanted to tell u that the ms specialist says he seees patient all the time with my similar symptoms and they never develop neurologic disease and they just treat the symptoms

95 % my symptoms happened after thyroid removed

I don’t think you have ms I think your immune system is miss firing and it’s causing you a lot of symptoms similar to me maybe look into uctd and have bloods for other autoimmune like lupus ect

Also stress and anxiety can cause some of these symptoms I am definitely not saying it’s anxiety but it would make you worse I lost my mum last year and then told I had ms two months later and my symptoms went through the roof

I also have muscle twitching all over but my nerve test was fine so it’s irritated nerves instead of damage ms would be damage

A lot of immune disorders can mimic ms in the brain

That have a lot better treatment.

Please do remember if it is ms which I don’t think it is

It’s not the end ms is so close to cure and so much better treatment and understanding xx

Thank u soo much. Most my stiffness and pain and pins and needles on one side than other which is another reason why I thought it was

Yeah me too I’m worse on the left but I think to a point we all are more one sided so maybe that’s why I know it sounds like I’m talking rubbish but I’ve been where you are thinking there is no other explanation but here I am and there is I don’t want you to get yourself all upset it will make you worse xxx

so u have talked to ppl and there's are more on one side than other?? these electric shocks are starting to hurt

Yeah I get electric shocks too runs down my neck xx

so that's not Lhermitt sign

Lots of illnesses and I mean a lot I’ve done my research can cause all your symptoms and mimic ms.

What symptoms do you have that isn’t ms like bone or joint pain? Xx

yes like shooting bone pain

I get this also x

That’s not really ms

Have you been tested for lupus ? Sarcoidosis uctd have you seen a rheumatologist as well as a neurologist c

If other illness are hard to tell the difference brain wise then you will get the same neurological symptoms.

I would stay alway from google I’m a fine one to talk but trust me it won’t do you any good xx

not been tested ...but she said no those aren't it

With no tests that’s silly

Have you googled illness that mimic ms xx

yes I have ...i don't have butterly rash or sensitive to sun

Not me but you don’t have to have every symptom x ask for the test you know then xx

And im really sorry about your mom....may the Lord help u in your loss

Thanks mate xx

your welcome...i will ask for the test

Please do xx

Batty1
Batty1
in reply to BethanyOxe

According to Endo ive been over medicated pretty much entire 3 yrs after thyroidectomy (I had cancer) and I had not one single symptom of being hyper in 3 yrs actually many hypo symptoms...I'm a Autoimmune nightmare... so my issues could actually be related to both hypo and Autoimmune.

BethanyOxe
BethanyOxe
in reply to Batty1

Thank u for sharing....this hasnt been an easy journey...i pray it something fixable and not incurable

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.

BethanyOxe
BethanyOxe
in reply to hdm46

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

BethanyOxe
BethanyOxe
in reply to hdm46

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

BethanyOxe
BethanyOxe
in reply to hdm46

My b12 levels are good

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.

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

Update my C spine and Tspine is normal

I have a lot of these- always feel a little lightheaded, ringing in ears, blurry vision occasionally versus floaters, fatigue and numbness. I will say the numbness/pins and needles has seemed to improve. I was b12 deficient and now that I supplement I am not. I’m no doctor but I feel like any autoimmune disease can cause many of these symptoms, including the tingling.

I've had b12 tested and iron and ferritin its all good ...and I supplement

I did see that your b12 was normal- I feel like I have improved but symptoms are definitely still there. Part of me has started to think these weird things go hand in hand with my Hashimoto’s, even though they aren’t the “traditional symptoms.”

Hey

SNAP I have almost every symptom you have mentioned right down to the pulling sensation under left rib.

I was diagnosed with hashimotos about 17 months ago with antibodies in the thousands. I had periods of illness for years and some ongoing symptoms but my thyroid levels were always just out of range so no action was taken and I was told to retest in 6 months. I became ill again about 17 months ago with all your symptoms listed and major bloating trapped wind and the left pulling thing. My tsh was 11.9 and my doctor again wanted to test again in 3 months even tho I thought I was dying so I made him do I full panel and that’s when my antibodies came back 1798>6. I was started on 50 levothyroxine and referred for and abdominal ultrasound all clear also a colonoscopy also clear and then a rheumatologist who did a barrage of blood tests and finally came to the conclusion that all my symptoms were caused by hashimotos. Anyway my symptoms continued and I found out my b12 was and has been under 300 for years and my folate was 4.5(3-20) but because I was in range my doctor wouldn’t treat. My Levo was raised to 100 then 125 and 150 some of my symptoms got a bit less noticeable but never left I could just about manage back to work but not a lot more the brain fog, sense of being detached,dizziness remained along with not having much energy or desire to do anything. This continued up until about 4 weeks ago when all my original symptoms came back ie twitches, aches , bones joint cracking feeling horrible,bloating trapped wind and the pulling under left side. Got my Levo upto 175 after being on 150 for 4 months my tsh had come up slightly 2.57(0.09-4.6).

I’ve finally been referred to an endocrinologist.

So I totally know how you feel,I’m sick of feeling like crap.

BethanyOxe
BethanyOxe
in reply to Sweenco

OMG. you have been going through a lot. Soo its is probably the hashimotos..i dont have thyroid at all. and was seen by 2 neurologist and told no to MS. U have pins and needles as well? you said all yoyr symptoms came back was that after they kept increasing meds.? did they retest your antibodies

Sweenco
Sweenco
in reply to BethanyOxe

I get pins and needles a lot and my left thigh goes numb occasionally. I also wake up a lot at night with my two outside fingers numb another symptom that has came back. As I said my symptoms became more manageable when on Levo for awhile, still there but manageable. The rheumatologist done a whole load of test but I’ve never seen the results even tho I asked for them, but she put all my symptoms down to hashimotos. I still think my low b12 and folate have something to do with it. Hopefully I’ll get some answers when I see an Endo.

BethanyOxe
BethanyOxe
in reply to Sweenco

it's your right to receive copy of results! I hope they figure out something soon too...i didn't have hashimotos but thyroid is attacking itself right?? it could cause all kinda weird stuff...i wake up and my arms are numb too..sometimes my toes go numb. I have burning and numbness in mouth. let me know what ur emo says..hope they are very knowledgeable and kind! God bless

I got postpartum thyroiditis 2 years ago and I haven't been well since. When I was really hypo I had swelling, a burning mouth, and bad body aches. Then my eyes got irritated and gritty. I was put on Synthroid and then added armour. I was never well despite normalized levels. I still had burning mouth sometimes and eye irritation, fatigue, depression and body aches intermittently. Then came the itching and the pins and needles/electric current sensation in my arms and hands and now in my entire groin area burns too. I had a totally normal nerve conduction test. My tsh just came back as 0.2 I wonder if I need to back down my medication. I have no palps, but I am a little on the warm side. However, my TPO antibodies have come down to 65. (0-34) I don't know, the pins and needles started when my tsh was 14 and now I have them even worse with a tsh of 0.2. It seems like it doesn't matter what my levels say, I always feel like garbage. I also have bad jaw pain all the time and sinus pressure sometimes and also a little urgency in my bowels. Im going back to the endo tomorrow and I have a follow up at the rheumatologist. He ran a bunch of tests on me a year and a half ago and said I had a positive ANA and nothing else to say. So, I never went back, but the burning sensations, especially in my groin are terrible. I'm looking for answers too. Considering Sjogrens or Fibromyalgia. Or maybe it's still the thyroid, I don't know.

My friend's husband has been having immunotherapy and woke up to find his face was paralyzed and he could not feel his feet (pins and needles) He had move into his mums house because he could not get up and down stairs. My friend has just informed me his thyroid has stopped working because of this treatment and this had caused the loss of feeling in his feet and his face to become paralyzed .... it just shows how the thyroid can affect your nervous system.

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