Pins and needles on left side of head

[danie17075rm]

A while back I sent a post to this forum. I have not had pituitary testing because my docs have basically told me I do not have problems there.  I am not so sure… still.  I had my thyroid removed in August and am still trying to find the correct dosage of meds.  My last visit to the endo found that I was still very hypo.  I increased from 112mcg of synthroid to 125.  I have started having some hyper symptoms which is not uncommon for me any time I increase.  My hands are trembling and I have had a headache.  I know the typical symptoms which do not concern me too much.  I have an appointment with the endo tomorrow to know what it is doing for sure.  Anyway, what I never had was a tingling/ pins and needle type feeling in the left side of my head above my eyebrow and on the side there.  At times it is so severe it makes me feel nauseous.  I don't know if this could be something like calcium or a vitamin.  I called my endo (I have a VERY BAD endo, but he is all I can get right now).  He said this would not be a symptom of thyroid regardless of what my levels are.  I had anxiety during hyperthyroid (who wouldn't), so he kind of said it might be because I am anxious.  I am NOT anxious.  I have not been anxious at all.  I hate when doctors just tell me something is in my head.  I know my body, and this is not normal. I am on the fence about going into the ER now. Has anyone else experienced anything like this?  The following is my old post which will give you some background on my symptoms.  It is long, so you can just skim it to get an idea.  This new symptoms is making me scared that it was never my thyroid and maybe I have a pituitary tumor or something.  


OLD POST FOLLOWS:

I will try to make this as brief as possible even though the story is long.  I am 32.  When I was 21 I tore a ligament in my knee and in an accidental finding in the xray it showed spots on my bones.  The docs worried about bone cancer so I was given a bone scan which showed it was calcium deposits.  I was young, and they told me I was fine so I never though about it again.  A few years after that (a few years before ever getting pregnant) I started to lactate out of one breast.  Again the docs thought it was abnormal so they sent me for a mammogram and ductogram.  Both came out fine. They noticed I might have some hormonal issues, but again no one was concerned or recommended tests so I never even thought to ask more.  My hair was falling out, but my hair is thick, so I didn't think about that either.  I got pregnant when I was 25.  I also was 5 ft 6 and somehow in my 20's I grew to 5ft8.  I had extreme edema and pregnancy induced hypertension.  After having my son I started having heart palps and my hair was falling out in globs.  I found out I had a multinodular goiter.  I was placed on a very low dose of levothyroixin (1/2 of the lowest dose every other day).  When I took more than that it was too much.  Without it, my tsh started to spike.  I was okay on this dose although extremely fatigued.  10 months ago I went hyper for no reason and ended up in the ER because I couldn't breathe and my heart was racing.  I was taken off meds and went hypo.  (When I go hypo though, my free t3 and t4 always seem to stay pretty normal). For the last 10 months I have bounced around between hypo and hyper.  There is no happy medium for me and I can't tolerate drugs.  When my tsh was 3.4 I was given an uptake that showed I took in way too much iodine and my thyroid was hyper (odd since my tsh was 3.4).  Basically I keep feeling hyper although my tsh is opposite of what I feel.  I have periods of heart racing and heart palps. I get hot.  I start shaking.  I have became gluten intolerant in this time.  I have IBS.  I think I am becoming hypoglycemic.  I am on a beta blocker and a recent test showed my calcium at 10 (normal to 10.1) pth 55 and vitamin d was only 11.  This was kind of inappropriate for parathyroid but docs believe it is just a deficiency in D.  I can't take the D without heart racing however.  I have HORRIBLE headaches above my eye brows and the top of my nose now.  I recently developed oral thrush.  My whole body is falling apart.  My endo thinks I have hashimotos toxicosis (I do have high antibodies) and that I need my thyroid out.  I am meeting with a surgeon on May 10.  He told me today that if surgery didn't help my symptoms we would talk about other things.  UMMM that is too late.  My recent test results were:

TSH- 2.84 norm (.3-5.5)
Free T3 2.78   norm (1.9-3.9)
Free t4  .96   norm .76-1.7

I can't sleep at all.  I slept 1 hour last night.  I honestly feel as if I'm dying.  My bp has went up, but the beta blocker does help. Also, all my symptoms are HORRIBLE before my period.  In fact I have had my tsh tested right before my period and it shot up to 17.  I have very bad shortness of breath as well.  Sometimes before I even get out of bed I have to do so slowly.  I get dizzy and if I rush out of bed my heart rate shoots up.  In the hospital while hyper my heart rate was 147.  The beta blocker helps this, but it still has periods of shooting up.  Food seems to make me sick.  I feel nauseous a lot.  My digestive system is a wreck.  I think I have too much hair or a female.  I know I have hormonal issues, but does this seem like thyroid or pituitary?  I don't know anymore.  No one seems to no for sure on anything. Thanks for any help and reading all of this.

[rumpled]

I had a heartbeat issue for a while and some SVTs and DVTs - it did resolve. I think my t waves were ok. The stress test is a pain - I did several.
At least if you know - you can address it.

[danie17075rm]

I did read that hypothyroidism can possibly cause it and anemia and I have both.  I was severely hypo at the time.  I am kind of wondering about dysautonomia or something!  It's like everything in my body is going wrong.  Everything they test on me is bad!  Did you have problems with the t-waves on your holter?  I know you said you had electrical issues and that is what mine is apparently.  I am worried about even making it through the stress test at this point.  My whole body is falling apart =(.

[rumpled]

I did the holter monitor as well a couple times - sometimes wacky and sometimes ok - the stress test will show more.
It can be something simple so don't freak out just yet! I am still here! Hang in there and let us know how it goes.

[danie17075rm]

I am freaking out now.  I had severe chest pains and went to the ER.  Everything was fine there, but the chest pains lasted for several days.  I still get them.  I was placed on a 24 hour holter monitor and they just called me and said it was abnormal.  I think she said t wave changes but I was freaking out and didn't pay attention well.  She now wants me to get a stress test.  AHHHHH.  I haven't even made it to pituitary testing because something else always goes wrong.  I can't find much about these changes online other than horrible things here and here =(.

[rumpled]

Sodium and potassium tend to run in tandem - do you know what the potassium was when the sodium was low? Were you also drinking a lot of water (just doing that can wash away needed electrolytes and not be a pituitary issue, just a habit).

There are a lot of hormones to be tested when it comes to pituitary - so... it is hard to say. There are some sites I gave in the health pages (lower right) so you can read up there - and then you need to get to a good doctor to get several sets of testing as one set is not good enough.

If the GP is a bust - try a rheumy - auto-immune issues can do a lot of this too...

[danie17075rm]

Another thing I just thought of... I did have one blood test which showed low sodium, and my sodium levels always tend to run on the low side of normal since then.  I wonder if this is also related.  

[danie17075rm]

Wow  I did not know the pituitary caused the low iron, low D and sugar issues too.  I wonder if my cortisol levels are doing something similar?  I have not been referred to a cardiologist.  I need to see one though because my heart is acting REALLY weird in the last few weeks.  That is scary.  I think I will call my family doctor on Monday and just beg her to give me the blood tests.  What kind of blood tests should I ask for regarding the pituitary?

[rumpled]

I used to just take beta blockers when I spiked high (but I am typically low) and I use, in my case, salt to keep my pulse lowered as I just cannot keep a BP - I have POTS though. I also use florinef. Have they looked at electrical issues with your heart? Do you see the cardiologist regularly? Mine said my cortisol fluctuations was making fluid changes and my heart was having a hard time keeping up, hence BP and pulse changes.

Many of us with pit issues have low iron, low D and weird sugar issues - so that fits.

[danie17075rm]

I have been on a beta blocker since I went hyper.  I take a small amount that I have to increase and decrease at different times.  Right now I am super hypo (despite increasing meds, I keep getting MORE hypo).  My heart rate is low so I have had to decrease as it gets TOO low.  I notice things go really sour right around my menstrual cycle (to the point of basically leaving me not able to do anything).  Interestingly enough this is when I had my blood tests drawn this time and everything came back bad.  I have a normal heart rate but get periods in which my heart rate will just shoot up for no reason.  After thyroid surgery I was in recovery for hours because they just injected me with everything they could think of to bring down my heart rate and nothing helped.  They finally wheeled me to my room when it reached 120 after all the meds.  That was the LOW rate.  I was hyper during surgery though.  I don't seem to have the problem too much unless I am increasing thyroid meds or hyper.

I have had several EKG's which have always been normal.  My doctor has just ordered a stress test and a holter monitor. X-rays of my heart were also normal.  My PTH and calcium were abnormal before surgery, but I was also very deficient in vitamin D.  I told the surgeon to MAKE sure the parathyroid were okay while in there, and he said they looked fine and there were no problems.  I have not had an issue with calcium since August, and now all of a sudden it is going low.  I started taking a supplement, but that is kind of worrisome that i might have a problem there as well.  My vitamin D is extremely low as well.

I have never been anemic before, but this latest test showed that and low blood sugar too.  What a mess.  I have so many things wrong with me, the docs never know where to start.  I still believe I need pituitary testing as well.  They can at least run some blood work!  I have had too many symptoms not to just check and make sure.

[rumpled]

If you want an enlightening experience, search for the impact of pituitary tumors on emotions or mental health.

Low calcium should not happen - are they looking at your PTH as well? That is a parathyroid issue. I happen to know as I have a similar issue. Ionized calcium and urine calcium should be run as well.

High heart rate can be POTS, issues with sodium and potassium, renin and aldosterone, need for beta blockers, etc etc. so the doc should run an EKG and see if you need to see a cardiologist for a haltor monitor and all that jazz just to make sure all is well. Plus the low calcium is not good for the heart.

Hang in there...

[danie17075rm]

I went to my family doctor and she thinks it might all be related to the fact that I am extremely hypo, anemic, I have low calcium and low blood sugar. YIKES. My labs were HORRIBLE.  I still have the head tingly feeling though and it won't go away.  I have been taking calcium and iron for a few days, but still now change.  It is driving me crazy. I don't have ANY anxiety at the moment. I am about to receive my master's degree in mental health (I am more qualified than my endo in THIS area).  I only have anxiety when my thyroid is doing something weird.  As you said, it is a symptom of the disease. I don't know, there is something scary about your heart rate going up to 150 while you are completely at rest.  That was what happened to me for the last year all the time while hyper.  I think that would give anyone anxiety!  I don't know where to go if the ER can't do it.  My insurance is not very good. I guess I could try to get my family doctor to give me a referral, but my old one moved and I just found a new one and she doesn't know me very well yet.

[rumpled]

Usually, but not always, there is changes around the jaw, the cheeks and the head can become larger. The changes can be subtle (which is why people cannot notice really) or the dentist may notice with spacing of the teeth changing.

I don't think an ER is a good option frankly - they simply are not equipped to diagnose and treat endocrine disease. To get a good MRI - you need a pituitary MRI and that needs a good script for dynamic MRI on a 3T machine if possible for the best possible outcome read by a radiologist who knows how to read pituitary. BTW anxiety is a symptom - not just a stand alone disorder so I totally agree with your assessment on your endo.

[danie17075rm]

What kind of changes would I look for in my face?

[danie17075rm]

Thanks for your reply.  I'm considering just going to the ER so I can get an MRI or whatever they do there.  It is 6 days now and I still have the weird tingle/pins and needles AND a horrible headache.  Since it is localized only above my left eyebrow and side of head there, it worries me.  My endo is HORRIBLE but he is my only option at this point.  At least this way I could get answers sooner if they would test for it.  I have suspected a pituitary problem for a long time.  I have an endo appointment today so I will run it by him although I know I will just hear the same "it's only anxiety" crap I hear from him.  At least I can get my blood results though and know if I am hyper or not. I don't think this feeling is going away anytime soon.

[rumpled]

You grew 2 inches and the doctor did NOT test your growth hormone? Wow... he is a lousy endo.

Have you noticed changes in your face from old picture to new ones? Can your GP order a pituitary MRI? or at least IGF-1 and GH?

You sound like you need another endo - then you need a pituitary center - but they won't take you until you have the testing to show that you have the pituitary issue. But if I was a bettin's man... doc's tend to think anything pituitary is rare therefore they will never see it and your doc is blind as a bat.

[danie17075rm]

Oh by the way... it wasn't oral thrush that I had.  It was a new rare autoimmune disease I developed during this mess called oral lichen planus.