Creepy crawly feelings, vibrating, tingling FEELINGS?

[mjacobs1973]

I have hypothyroidism.  Does anybody have feelings like there are bugs crawling all over your body?  This is absolutely maddening!  It has other sensations as well.....sometimes tingling, sometimes a "buzzing" or "vibrating" type of feeling.  Sometimes it feels like a pinprick as well, but mostly an "itchy" feeling like bugs are crawling on me.  It occurs EVERYWHERE, not just the hands and feet......my face, scalp, legs, absolutely EVERYWHERE!  Does anybody else have this?  Thank you.

[Jomama120]

Yes. I experience this daily. I have found correlation to low potassium and vit D levels and often notice as I raise my potassium level the itching improves.
I take Benadryl to cope.
I have kidney issues too and have read that kidney disease can cause this itching too.

[Jomama120]

FYI: I’m also a hashimotos patient

[gimel]

Have you ever been tested for ferritin, the storage form of iron that readily available for use?

[Jenn1302]

I do. They started around the time my thyroid problems started (I have Hashimoto's).

[Snowdrop11]

Have you looked into Benign fasciculation Syndrome? I  think this would fit with what you are describing. Do you ever get muscle twitches as well?

[VTaylor69]

Yes, I was diagnosed with hypothyroidism last November  and the bug crawling/pin prick/stings started about 3 months ago. They are worse now that it is Summer. Also, I swear stress makes it worse. What is the cure?

[Heavenlyharris88]

Yes I do.. An at night its worsening.. But never told I had anything.. What can I do about it.???

[7am]

me also have that symtoms. by yoga i detained this problems for years. but now yoga also fails on this .  

[Brigee]

There are several possibilities as to what could be causing the buzzing and vibrating.  I was diagnosed in 1993 with Hashi's and hypothyroidism, and I have had several episodes of the buzzing and vibrating you are describing, although I have never had the itching.  The first time was right after I was diagnosed and put on Synthroid.  Since my TSH was actually in the "normal" range at the time I started having these symptoms, my endo dismissed my thyroid as the cause.  However, when I stopped taking Synthroid, all the symptoms went away.  It was only after I demanded (he put up quite a fight!) that he let me try another thyroid med that all this went away.  

The second time I started having the buzzing and vibrating came completely out of the blue after a long period of time when my TSH, FT4's and FT3's had been normal and stable.  When I described my symptoms to the doctor, she looked at me as if I had grown another head.  Since I was also experiencing heart palpitations, she thought it might be my heart.  Huh?  When the EKG, echocardiogram and Holter monitor results all came back as normal, I finally managed to convince her to check my thyroid again, which I had been asking her to do all along.  Sure enough, my TSH was 76, when only six weeks earlier it had been 2.18.  Apparently, the Hashi's was causing a wild fluctuation in my thyroid function, which is not unusual, although mine was rather extreme.  It was only after my medication was adjusted that the symptoms went away, although it took several weeks.  BTW, I also asked her to check my B12, and I was found to be severely deficient.  I started taking sublingual B12 tablets, which are much easier than the shots, and it was back to normal within about six weeks.  

This last time when the buzzing and vibrating started, it took a whole different turn.  All my numbers were normal, except my FT4's had been slightly elevated for quite a while, and I had been feeling fine.  And this time the buzzing and vibrating were much worse than what I had experienced before.  The only time I got complete relief was when I stopped taking my thyroid meds altogether.  I tried this three times and each time, within about four days, the symptoms would stop.  I asked my doctor to order up new blood work, just in case it was one of those weird Hashi's fluctuations, but it all came back normal.  So, I asked my doctor to change my medication.  I had been on Levoxyl for about eight years, but we both thought it was worth trying.  Over a period of several months, I tried Thyrolar, Armour and Synthroid again.  No change.  It didn't seem to matter which thyroid med I took.  And my TSH was all over the chart.  

About this time, I decided it was time to look for a new doctor.  My new endo did NOT look at me like I had two heads.  After hearing my story, he suggested I go completely off thyroid meds until I started feeling hypo symptoms (I had been having hyPER symptoms for months).  He gave me standing orders for the lab so I could go in when I started to feel hypo.  (He actually gives me credit for knowing my own body!)  Then, he gave me a prescription for 5 mcg of Cytomel, which is T3, which I was to start taking after I had my blood drawn.  I was instructed to call him when I did this so he could monitor me and my test results.  It took about two weeks before I started feeling really hypo, so I went for blood work, called the endo and started the Cytomel.  Over the last few weeks, we have been slowly and steadily increasing my Cytomel dosage.  The buzzing and vibrating are gone, my TSH is almost back to normal, and I'm feeling better than I have in over a year.  

I haven't had another appointment yet to really discuss all this with my new endo, but the research I have done leads me to something called pituitary resistance to thyroid hormone.  Apparently, the only way to deal with this is with T3 only meds.  I'm thinking that my endo suspected this was my problem, but he wanted to see how I did on the T3 (Cytomel) medication first.  

So, that's my story.  You should probably see if you can get new blood work done to see what your TSH, FT4's and FT3's are, because you could just need a dosage adjustment.  You should also request they check your B12.  If those come back okay, you could try coming off your thyroid meds for a couple of days and see if that makes any difference in your symptoms.  Maybe you have developed a sensitivity or allergy to some ingredient or filler in the thyroid meds, and just need a different medication.  According to my new endo, that happens more than most doctors think.  Finally, although it is fairly rare, you could have developed a pituitary resistance to thyroid hormone, which is what I think I have.  I get new blood work done next week, so I'll be talking to the doctor about this then.  

I hope I've been of some help.  Let me know if you have any questions, and I will do my best to answer them.  

[mjacobs1973]

thank you everyone.....like I said, this is so maddening!!!  I'm tired of itching at these "mysterious" bugs!!!!

[Barb135]

I have some of these feelings, but my doctor said it was from undx'd pernicious anemia.  Since being on B12 shots, it's gotten some better but not gone away.  I also have something which makes my feet and legs feel like something is crawling INSIDE near the bone. They tell me this is restless leg syndrome - I wonder??  

[bic3]

Hi Terri, Had a complete thyroid removal May 2007. Had another RAI and scan Feb 2008 (neg) but was still feeling extremely tired, non-recuperative sleep, irritable, most of the hypo stuff and alot of the adrenal symptoms, also my thyroid numbers were all over the place.  Doc said it could be another autoimmune, so I was tested for RA, MS, adrenals (make sure cortisol is tested in early AM while under min stress), and diabetis.  All were neg. Also, have your vit D checked, mine was at ground 0.  All tests were neg so she blew me off as a complaining nutcase, so I changed endos.  New endo immediately did a thyroglobulin (came back as .3).  Did another RAI and scan (neg), but he still had a feeling something was there, so he did an ultrasound of my neck and bingo the papillary cancer had spread to my cervical lymph nodes.  I am scheduled for a radical neck dissection on the left side to remove ALL nodes on the 19th. The cancer has been there all along, but never showed up after the RAI (this is not uncommon, ergo the need for more testing).  Had I not changed endo's I would be sitting here fat dumb and happy thinking I was cancer free, while all along the cancer was spreading.  Hope this helps.  Bonnie

[Terri627]

Hi, I posted a question meant for you to mjacobs 1973. Just wondering if you can tell
me about the recurrence. I'm afraid I'm heading there, but I haven't seen the doctor yet. It's mostly a feeling I have, feeling as poorly as I do lately.

[Terri627]

sorry. scrolled up and entered the wrong name! I'm glad to hear you didn't or don't have cancer :) I'm sure hashimoto's is bad enough ..

[mjacobs1973]

Hi Terri.....I didn't personally have ANY cancer, but other responders on here seem to have had it.....

[Terri627]

What type of cancer did you have? I am very afraid right now that mine (follicular) may be recurring. How did you know it did? My tsh is currently 0.02, but my tg antibodies have gone up very slightly since last year's test. Do you remember any signals your body gave you that concerned you?

[Dave0272]

I am 37 year old male w/ Hashimoto''s and have the exact same symtoms you all describe:  buzzing, vibrations, twitching, muscle tightness, pain and sometimes numbness sensations.  It drives me nuts to the point that I get super anxious and get the shakes.

Been by neuro that it is Benign Fasciculation Syndrome (BFS).  Also told that it may be fibromyalgia.

I say thyroid is the culprit.  Endocrinologists look at me like I have 2 heads when I say it.

I was extremely hypo for many years, did not have these symptoms. Only the other issues w/ hypothyroidism.  Now health is great but have this sh..t.

(175 mcg Levoxyl, TSH=0.74, T3 in high end of range, T4 mid range)

[mjacobs1973]

Thank you everybody so far!

[bic3]

Hi, yep its thyroid.  I have thyroid cancer and the TSH has to be kept at sub-clinical numbers to keep the cancer at bay.  I take 175 Levoxyl to keep the TSH at .05 which makes me jittery and vibrating most of the time.  When they lowered the dose the feeling went away but the cancer returned.  Now, back on 175, I an scheduled for a radical neck dissection next week...I wish the old endo had had known this might happen...or maybe she did?

Bonnie

[Smilerdeb]

I have had those symptoms while Hypo.
I assure you they are most definately related to the thyroid.

[ellesan]

Hi, I have the same buzzing or vibrating feeling in my groin area along with swollen lymph nodes there. I also have numbness, tingling and burning sensations over other parts of my body (arms, hands, feet, legs, scalp and neck). I haven't had the feeling like bugs are crawling on me but I can empathize with your other symptoms.

I'm recently diagnosed with Hashimoto's but my GP and Endo don't think these symptoms are related to the hypothyroid...I just don't know. The alternatives are not pretty and they are doing neuro workup on me now, had a brain MRI yesterday. Hang in there, I know this is really hard and frustrating. You are not alone. :)

Sandra