Avatar universal

What is going on!! (PLEASE HELP)

Hello everyone,  I am a 22 year old male and I have been experiencing some of the STRANGEST symptoms over the past 5 months. Let me disclose that a lot of what im saying sounds like anxiety HOWEVER I can genuinely say that i do not feel anxious about anything and i am at a great spot in my life currently. I strongly feel as if the only reason i may have anxiety now is because of everything i have been experiencing (thinking its something serious)  But prior to these experiences i had ZERO anxiety.  All of the symptoms seem to have appeared out of no where and i'm just trying to find an answer

  It started with me beginning to just feel more fatigued than usual.  Went to the doc had some blood work and my tsh tested ( I have a strong family history of thyroid disorders).  My TSH came back at about 1.2. doctor said everything was good but my vitamin d was low.  He told me to take 1000IU of vitamin D for a couple of weeks and come back.  I took the vitamin D as told for a few weeks  yet i was still feeling tired and  now my body started to feel a bit strange.  

Something was just very "off" and my body felt (for lack of a better word) "Heavy".  To elaborate i felt as if it took way more effort to move my body than usual! I was moving but my legs felt like cinderblocks and it felt like gravity was just pulling me down. ( Very strange i know but this is EXACTLY how i felt)  This feeling seemed to come in waves, even though it came in waves it never completely subsided.  in fact things seemed to be progressively getting worse.  I went back to the doctor and told him about this feeling.  He did a strength test and i guess all the other neurological things doctors do, but he came up with nothing.  So he suggested that i see a neurologist.  

While waiting for neuro  this is when things got bad.  In combination with the "heavy" feeling I developed a new symptom.  I was now experiencing a "pins and needles feeling" all over my body when exposed to heat.  For example If i were to leave an air conditioned place and step outside on a hot day it would feel like someone was poking me with needles or something and they hurt! and start to itch.  This would occur in my chest and back mostly but it also extended to my hands and legs. I would get this sensation just even briskly walking to class on a warm day.

The heavy feeling was steadily becoming more intense and the "pins and needles" seemed to as well. Just when i thought things couldn't get worse i started getting some very strong muscle twitches all over my body (in very odd places)  EXTREME brain fog   an extreme feeling of it feeling as if my body was going to shut down at any moment and my appetite was non exsistant. ( I never have a clue when im hungry or when im full its like my body has shutdown whatever tells me that im hungry and full  so I eat on a schedule)

At this point im EXTREMELY concerned because everything that was happening was extremely real and my body felt extremely strange.  It got so bad that i actually panicked and had a panic attack and had to go to hospital.  When the panic attack happen i just remember being extremely confused and i thought i was going to die. I told the doctor at the emergency room about all the things i was experiencing prior to the panic attack and I told him "the only reason i panicked was because I have no clue whats going on with my body".  He suggested to get thyroid checked again ( i have no clue what test they did i am assuming just TSH).  The doctor even started asking if i was hearing voices -_-. The doctor said my thyroid was good and it was just anxiety.

I left the emergency room still feeling strange and the description of "just anxiety" was crap to me.  I in absolutely in  no way shape or form felt anxious or stressed about anything.  After the emergency room visit things did not get any better over the next week or so Everything was so much worse.. "The brain fog, the heaviness, the twitching and the pins and needles"

BUT WAIT THERES MORE... At this point i felt like absolute crap. I was tired,  My mood was fluctuating ( I would feel ok for periods of time but then it would come right back)   the heaviness was at an all time high, i was having times of feeling extremly confused, pins and needles etc then i decided to do something.

THIS IS THE MOST IMPORTANT PART  I said to myself take your temperature! I dont know what made me do it because i didnt feel like i was running a fever but i just did.  To my surprise my temperature was at an all time low!  It was in the low 96s..  My normal temp is 98.6 F.  The thing that was concerning to me about my temperature was that it was fluctuating heavily on the low side.  I would take my temperature at times and it would be 95.8 in the mid afternoon.. I would then take my temp about 20 minutes later and it would jump to 97 or so. This was  not normal and i still do not believe it is normal. As of now my temperature seems to be more stable but it is still low at 97.7 and it seems as if my body REFUSES to go anywhere near 98.6 no matter what i do including excercise.  Finally in regards to temperature i have noticed that my body temperature drops significantly AFTER exercise (not strenous). This morning I took my temperature before leaving the house to walk  around the neighborhood and it was 97.2 ..When i got back home about 15 minutes later i took my temperature and it was 94.9!  and from what i know that is hypothermia.  It was pretty cold but i had more than enough clothes on. after sitting in the house for about 15 minutes my temp jumped back to 97.0!.. Its like my body is not regulating temperature correctly

To anyone still reading i just want to know what the hell my body is doing.  up until this point i have to say that the intensity of my symptoms has gone down but i still EVERYTHING  Brain fog, Pins and Needles, Muscle twitching and a low body temp and no appetite.  I will also say that some days are better than others.  The twitching can be really bad some days and others its not.  I am currently waiting for a full thyroid panel TSH T3, T4 and TPO and test for lyme disease  I did see nerologist and doesnt seem to think it is anything like MS he said it sounded more endocrine to him.  I see an endo in december!

SO what do YOU think is going on??
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Avatar universal
Another test for Lyme disease is called a PCR test, short for polymerase chain reaction.  The PCR test looks in your blood for the DNA (genetic material) of Lyme bacteria.  This test is often used by Lyme-specialist MDs, because it is highly accurate:  PCR testing does not rely on your body's immune system to determine whether you have Lyme bacteria in your blood, as the older Western blot and ELISA tests do; instead, PCR tests look for genetic material of the Lyme bacteria present in your bloodstream.  PCR is a highly accurate test, so I read, because it does not rely on your immune system's reaction to the presence of Lyme bacteria in your bloodstream.  Lyme bacteria can and do *suppress* your immune system, so you can have a huge case of Lyme but the immune system may not recognize it and therefore the Western blot and ELISA tests don't recognize it either.  As a result, there are no antibodies made by your immune system to signal that you have a Lyme infection.  For those of us who do not show positive results on W.blot or ELISA tests, the PCR test (created by IGeneX Labs) is a more accurate test.  

My Lyme doc tested me using both the old standby tests (Western blot and ELISA), and because my immune system was still up and fighting, I had positive W.blot and ELISA tests, but not everyone does.  The doc also tested me with the PCR test, and I was positive there too.  So:  if you are tested only by W.blot/ELISA tests, you can have Lyme even if the test says you don't.  If your doc doesn't use the PCR test as a second level to confirm the negative W.blot/ELISA tests, then I would find another Lyme doc who will use the PCR test as a failsafe.  If you are negative on all three tests, then from what I read, it's likely you don't have Lyme, but something else entirely.  

I'm not medically trained, but I had Lyme and have now been fully well for several years after diagnosis and treatment, so fwiw, and all good wishes to you.  Let us know what you do and how it goes, okay?
Helpful - 0
1809955 tn?1448537077
There are many false negatives with both Elisa and Western blot.  If you already have a positive Elisa, the Western blot is just verifying that it is lyme.  You have two specific band numbers for Lyme - 41 and 58.  

" Currently among Lyme literate doctors, significance is associated with 41 kDa band, which appear the earliest but can cross-react with other spirochetes.  In addition, there should be at least one of the following:

18 kDa,              23-25 (Osp C),    31 kDa (Osp A),

34 kDa (Osp B), 37 kDa,              39 kDa,

83 kDa               93 kDa  

(These are all species-specific, but may or may not

appear during the course of the disease.

The 58 kDa band, on the other hand, is considered to be

highly specific in Scotland and other European laboratories.(4)"

I would find another doctor or at least a lyme literate doctor.
Helpful - 0
1809955 tn?1448537077
excellent post Jackie - I searched for a Lyme literate doc in my area... but didn't need one, as my pcp treated me.  Lyme is rampant in my area.  Both my husbands having had it (one with stage 3 lyme who went years undiagnosed and who can hardly walk now); my next-door neighbors (both sides) have it too.  When I got my prescription filled, the pharmacist said that he has filled about 10 a day for the past couple of months.  

Trying not to sound like a nut, I swear that Lyme is sexually transmitted.  I only say this because when my first husband came down with it in 1993 (he had the bulls eye rash, fevers, shaking, body aches, swelling, neurological ticks, anxiety, panic attacks, etc.) he went years going to various doctors until one finally treated him; I never had any symptoms or issues.  My second husband developed it in 2014 (he had the bulls eye rash and remembers a tick being on him);  I developed the symptoms that summer also (never had the bulls eye rash and did not have a tick that I know of); my Lyme test (western blot) showed both old lyme and new lyme according to the things that were reactive (hence the supposition that I swear I had it from my first hubby and the new lyme was from my second).  I truly don't understand how they claim that it couldn't be transmitted the same way that syphilis could, because it is a spirochete, correct?  
Helpful - 0
I agree with your comments about Lyme being transmissible from person to person in the same way as syphilis, since the bacteria causing Lyme and syphilis are similar.  It's also possible you got bitten by a Lyme tick without realizing it ... I never saw the tick that got me, and never had a bullseye rash, but I sure had Lyme and babesiosis ... and no, I wasn't 'dating' anyone.  :)  Many of us never know how we were infected, so don't lose any sleep over it.  Just find a Lyme doc and get well!
Avatar universal
Just stumbled across your post -- I have had Lyme disease, and its symptoms are many and sly, looking like other ailments that docs can readily identify (often due to their narrow focus on one or two areas of medicine).  The era of medical specialization is a wonderful thing, except when a particular ailment has myriad symptoms that could be one of many illnesses, and the docs are prone to home in on their own specialty.  I personally went through 20 well-trained and highly experienced MDs who could find nothing wrong with me except that I was ill, though some even doubted that.  
-- Docs in general will usually give a name to your condition that fits the doc's own particular area of medicine -- it is human nature to tag something closest to one's one experience or focus.  One exception in the parade of docs I went through was a doc who, with genuine compassion, looked me straight in the eye and said, "I know you are ill; I just don't know what it is."
That gave me the focus to keep going, and by chance and luck, another doc tested me for the only remaining thing she could think of:  Lyme disease.
-- The Lyme test came back positive!! ... but the kindly doc then said soothingly, "but you could not possibly have Lyme; I have patients with Lyme, and they are ...  all near death."
-- That was all I needed:  a clue!  An old college friend of mine had had Lyme years before I was ill, so I had a frame of reference and knew that Lyme was real and needed attention from a knowledgeable doc who *believes* in Lyme.
-- I took the test copies and after a little digging on the 'net, I found a Lyme doc practically in my backyard ....  Lyme is such an odd and discounted ailment that many docs do not take it seriously, so the Lyme docs, to avoid ostracism, will often keep a very low profile about their practice, with the result that Lyme docs seem to be non-existent in a particular area, when it may be that they are simply discrete ... and also have a busy schedule because Lyme is real and is in many places, so the docs aren't out giving speeches, but instead are on overload with patients.  
-- I made some quick notes from your post above, and the following jumped out at me:  sudden anxiety; some thyroid problems; pins and needles sensation; brain fog; panic attacks; moody; low body temp; and twitching, among others.  All of those symptoms are classic Lyme.
(In addition, the brush off you got from the neurologist?  That is also a 'symptom' of Lyme:  neurologists as a group tend not to believe that Lyme is real.)
-- Lyme disease is caused by a bacterium, in the same bacterial family as syphilis, so I read.  As such, it can burrow into the body and do its quiet damage over time.  Lyme is definitely treatable and curable, and it will not go away by itself.  The most important aspect is to find a good Lyme doc who really does understand Lyme and how to treat it.  The current split in the medical community is awful, due to the fact that the early discoverers of Lyme are still around, and their views are stuck in the past on the early discovers' initial understandings of Lyme and how to treat it, rather than update their own early thoughts as more is learned in the Lyme field.  It is simple but sad human nature to cling pridefully to one's own discovery while rejecting additional data and developments which other docs make.  
-- There is much that can be said, but here are some closing notes:
----- testing for Lyme:  a comment above suggests testing for Lyme antibodies and taking the Western blot test.  These tests may be useful if positive, but if these tests are negative, you may well still have Lyme because of Lyme's ability to suppress the human immune system, thus also suppressing any positive result on the Western blot test.  There are other tests which are more accurate, but many docs who do not 'believe' in Lyme (except as rare, hard to get and easy to cure) will cling to these tests, which are not defective, but are often NOT accurate.  A Lyme specialist will know how to approach testing for maximum accuracy.
------ Neurologists believe they know everything there is to know about Lyme.  Don't believe it.  Look for an MD who is a member of ILADS, the International Lyme and and Associated Diseases Society.  Check their website and review Dr Burrascano's guidelines for information about Lyme generally.  ILADS also has a referral function to locate a Lyme doc near you, but given that Lyme is in its early stages of human understanding, don't assume all Lyme docs are equally wise and helpful.
----- You will see the term LLMD:  it is patient shorthand for 'Lyme-literate medical doctor', not a degree or title, but our way of signifying a doc who really does understand how to test, diagnose and treat Lyme.
----- If not mentioned above, twitching and anxiety may be due to low magnesium (Mg) levels, since the Lyme bacteria use up Mg in their reproductive process.  
-----  *** Lyme is very treatable, with the right docs and the right meds for the right length of time. *** I am now more than five years past Lyme, and am entirely healthy.
----- There is a Lyme section on MedHelp, and I recommend it to you.  I have spent many hours there, and it helped me a great deal. I wish the same for you!
Helpful - 0
Jackie! thank you so much.. I actually did get tested for lyme! but of course i have run into some problems.  I got my results back and apparently my ELISA test came back positive but according to the western blot i was negative.  However i had bands IgG 41 and igG58 come back present on the western blot.  According to the CDC apparently you need 5 bands to be diagnosed so my doctor said i was negative..  I STRONGLY think I will keep pursing this because obviously the test show something is going on but just not enough to diagnose.. What do you think?
Good for you!  I would definitely find a Lyme specialist for a second opinion.  Some thoughts:    
-- The standards your doc uses to diagnose a Lyme infection are likely the standards set up years ago by the CDC (Centers for Disease Control) and the IDSA (Infectious Disease Society of America, which is an organization of MDs who specialize in ... yes, infectious diseases).  The CDC and IDSA docs have very fixed views that Lyme is not particularly serious nor widespread, so they tend to blow off the whole idea of Lyme when a patient consults them.
     You say, "I got my results back and apparently my ELISA test came back positive but according to the western blot i was negative."  Why docs ignore a positive ELISA test puzzles me.  If it's not Lyme, then what the heck is it?!
     You also say, "However i had bands IgG 41 and igG58 come back present on the western blot."  According to the CDC (Centers for Disease Control), you need five positive bands to be diagnosed with Lyme -- BUT the problem is that these CDC standards for diagnosing Lyme disease set the bar *very* high to be sure that the test data (among the patient population that was studied) was absolutely Lyme ... but applying the very high scientific research standards to everyday clinical patients leaves many patients out in the cold, because they do not reach the way-high research standards.  It would be like saying that if you get an 85% grade on your test in school, you flunked because you didn't get a 98%.

Bottom line:  using research standards to diagnose and treat patients just doesn't work.  You say, "my doctor said i was negative..  I STRONGLY think I will keep pursing this because obviously the test show something is going on but just not enough to diagnose.."  I agree absolutely, but would add at the end of your sentence "something is going on but just not enough to diagnose NOT TO CLINICAL STANDARDS FOR DIAGNOSING PATIENTS, BUT FOR PURE AND VERY HIGH TEST STANDARDS TO BE SURE THAT ONLY LYME DISEASE IS PRESENT."  

Bottom line:  Using only 100% pure data makes sense for scientific work, but not for treating everyday human illnesses. So yeah, I'm with you!
16508544 tn?1448649854
1000IU of vit D is relatively low...
Helpful - 0
1809955 tn?1448537077
I think for you it is important to get those antibodies back, which might make things a bit more clearer with regards to autoimmune thyroid disease.  I am hoping that you have also had a complete metabolic panel run (complete blood count with BUN/Creat, and many of the electrolytes);  Have you had a thyroid ultrasound - this might be helpful.

One other thing that I thought of.... have you ever been tested for Lyme's Disease - many of the neuro symptoms that you describe are consistent with Lyme.  Ask your doc to run the Lyme antibody test and the Western Blot.  

Even if you do not remember ever having a tick bite.... you can still have Lyme's disease - it happened to me.  My biggest symptom was tingling and a weird pins and needles sensation in my knees.  

No matter what, the most important thing for you to do now... is try not to worry or bring yourself to a panic attack.  Keeping calm goes a long way.  
Helpful - 0
1756321 tn?1547095325
As you mention your symptoms showed up after taking vitamin D you might be having symptoms of magnesium deficiency.  I had a severe magnesium deficiency, with over 50 symptoms, due to a combination of insulin resistance, high doses of vitamin D and surgery.

Helpful - 0
Avatar universal
With those symptoms it sure sounds like central hypothyroidism to me.  Central is a dysfunction in the hypothalamus/pituitary system that results in TSH levels that do not adequately stimulate the thyroid gland, so the biologically active thyroid hormones Free T4 and Free T3 are too low in their ranges.  

Central hypothyroidism occurs less than primary hypothyroidism (characterized by high TSH, but low levels of Free T4 and Free T3 due to the thyroid gland being attacked and destroyed by the antibodies of Hashimoto's Thyroiditis.  Most doctors pay attention only to TSH and miss the possibility of central hypothyroidism.  

So when you are tested, request tests for both Free T4 and Free T3 (not the same as Total T4 and T3).  They always want to test for TSH.  If the doctor resists just insist and don't take no for an answer.  

Be aware that being an Endo does not automatically mean a good thyroid doctor.   Many have the "Immaculate TSH Belief" and only pay attention to that.  That doesn't work.  Also many use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the range is adequate.  That is also wrong.  Based on all of our experience, my optimism for the Endo being a good thyroid doctor is low.  A good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T4 and free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  You can get some good insight from this link written by a good thyroid doctor.


Also, since hypo patients are so frequently low in the ranges for Vitamin D, B12 and ferritin, those need to be tested as well.  Insist if you have to.  Low levels can cause symptoms that mimic some of those of hypothyroidism.  Also low D and low ferritin can adversely affect metabolism of thyroid hormone.  D should be about 55-60, B12 n the upper end of its range, and ferritin about 70 minimum.  After testing you can supplement as needed to optimize.  

If you will tell us your location, perhaps we can suggest a doctor that has been recommended by other thyroid patients.  

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