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.
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.
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.
1000IU of vit D is relatively low...
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!
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?
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.
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?