Discussions By Condition: I cannot get a diagnosis.

At my whitts end

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: CourtneyS
  • January 4, 2011
  • 04:20 AM

I don't even know where to start...maybe back to 2007 when I was diagnosed with hypothyroidism and put on Levothyroxin.
I was experiencing some mild stiffness of my muscles, my hair was thinning, and I was tired and moody. after being on the medication for a few months, my pain was not going away so my doc told me the more weight I lost, the better I would feel. I continued to lose weight at a study pace (was on weight watchers before thyroid diagnosis), but my pain did not subside. In fact, it seems as though the more weight I lost, the worse I felt. Every time I went in to see my primary about pain, he would check my thyroid levels and adjust my meds accordingly. I was getting so frustrated that this was the only thing he was testing I stopped going to the doctor until this past summer when I started experiencing galactorrhea (leakage of breast fluid) headaches, vertigo, black outs (no loss of consiousness), vision disturbances, loss of balance, and extreme pain. My Primary sent me for an MRI in hopes to find a tumor on my pituitary...no tumor. However they found 10 leisions ranging from 3-6 cm in my frontal, parietal, and occipital lobes. 2 More MRIs were ordered and a spinal tap was done. the MRIs came back inconclusive and the spinal tap came back negative for infections and proteins (Multiple sclerosis). the neurologist suggested follow up MRIs and spinals for the next 4 years and left it at that. I have also had many blood tests that have all come back normal. the only thing they have found id that I am low in vitamin D, so I am now taking a supplement for that.
Today I went to see and internal medicine doctor who looked at me and said he didn't even know where to start (I have 2 pages of symptoms I have experienced, each one of them has been experienced since diagnosis of hypothyroidism with the neurological symptoms occurring only with in the last year. He said he has never had a patient with as many symptoms at I have and referred me to a rheumatologist to rule out fibromyalgia. He said he doesn't believe it is fibromyalgia (and I really don't like that diagnosis), but he didn't even know where to start. he ordered a CRP and a sed rate to see if there is any inflammation so I guess we'll have to wait and see what those results say.
I am only 28 years old, but I feel as though I am 58. Can someone PLEASE help me figure out where to start?!?!
List of symptoms from head to toe:
Headaches (mild to severe) severe began with in a year
vision disturbances (constant halo/stars when looking at lights; intermittent wavy, cloudy, blurred, and double vision) within the last year
spinal pain (cervical to sacrum) intensified within last 2 yrs
muscle spasms (Back) intensified in last 2 years
Muscle twitches through out body
shoulder, elbow, hand, hip, knee, and foot pain with swelling in knees and hands with in the last 5 years
stomach cramps when eating, "bubbles" after meal with in the last 5 years
foot in rib sensation with and without eating with in the last 2 years
irregular stools (from hard to watery with in days of each other) within the last two years
stools also range in color (from almost black to clay color) within the last 2 years
extreme cold sensitivity within the last 5 yrs
tingling in arms (to hands) and legs (to feet) within the last year
dizzy/black out spells (within the last year) within the last year

more info: I have 3 children born Jan 22 2005, March 23 2006, and February 2009.

ANY insight would be greatly appreciated, I don't know what else to do!

Reply Flag this Discussion

8 Replies:

  • I am assuming that you have had your calcium levels checked along with your vitamin D levels and that your doctor has checked your pararthyroid glands. Is your hypothryroidism under control?Are you on any other medications other than levothyroxine? I am really sorry that you are experiencing such a plethora of symptoms. I would advise you to keep after your doctor(s) to help you deal with them instead of taking advise from people without medical training. Don't lose hope, it may take some time to sort things out.
    blueempress 28 Replies
    • January 4, 2011
    • 05:55 AM
    • 0
    Flag this Response
  • My Calcium level is at a 10.0 with the higher end of normal being 10.3.
    CourtneyS 4 Replies
    • January 4, 2011
    • 11:24 PM
    • 0
    Flag this Response
  • I empathize with you. I would also have them do some of the genetic testing. Have them run the IBD genetic testing with Celiac. Before I went gluten free over 4 years ago I had alot of simular symptoms. I also have Crohn's, Reactive RA, pyoderma gangronesum, asthma. Sounds like you could definitely have an auto immune disease or syndrome. Check out WebMD under an autoimmune disorder and/disease search. There are over 100, and that sight lists some of the rarer ones as well. So far thyroid has remained healthy in me, still do not know how.
    jj4christ 6 Replies
    • January 5, 2011
    • 00:32 AM
    • 0
    Flag this Response
  • I empathize with you. I would also have them do some of the genetic testing. Have them run the IBD genetic testing with Celiac. Before I went gluten free over 4 years ago I had alot of simular symptoms. I also have Crohn's, Reactive RA, pyoderma gangronesum, asthma. Sounds like you could definitely have an auto immune disease or syndrome. Check out WebMD under an autoimmune disorder and/disease search. There are over 100, and that sight lists some of the rarer ones as well. So far thyroid has remained healthy in me, still do not know how. PS. I am in Wyoming, howdy neighbor.
    jj4christ 6 Replies
    • January 5, 2011
    • 00:35 AM
    • 0
    Flag this Response
  • Thank you for your responses! I have been to see a chiropractor and found out I have Degenerative disk disease; a normal part of aging yes, but I'm 28 years old and already have a moderate case. I also have vertebral rotation where each vertebra is rotated to the right with increasing severity in the cervical and thoracic regions. I have had a few more symptoms come up recently...I have a pain on top of my right foot (almost felt like tendonitis, but has lasted more than three months).I was walking with a limp a couple weeks ago. It almost felt as though I had sand bags in my legs.My headaches turned from painful to more of a pressure feeling. it makes my head feel mushy/fuzzy almost.Yesterday I had the fuzzy feeling and then while at work I had a very weird tingling/numb feeling on the left side of my face and down my left arm. When I looked down, I noticed goosebumps. They weren't normal at all...They were in large patchy areas, small patchy areas, and in lines. My boss said I had some on my neck, chest and lower jaw area as well. I experienced the same feeling after dinner that my husband witnessed. I have been exploring my unusual symptoms and have decided to make an appointment with my neruologist. I will update as soon as I can.
    CourtneyS 4 Replies Flag this Response
  • Keep us updated... you have an interesting health case. Hopefully as your doctors havent given up on you yet, they'll work it out. Your case sounds different to the things Im very familiar with (autonomic issues/POTS, ME/CFS which can cause multiple lesions in the brain along with many other symptoms, your lesions thou didnt quite sound like what i remember about ME ones, fibro.. all things which have some similar symptoms to what you describe. You dont really sound just like any of those from info given so far).. It may well turn out to be MS afterall... I know many with MS often face years of undiagnoses before getting a clear one. Autoimmune issues such as Thyriod issues make you more likely to get other autoimmune issues. Your irregular stools could be irritable bowel syndrome. As other suggested a test for Celiac disease would be a good idea. Celiac disease can cause all kinds of symptoms including neurological issues.When you say thou sometimes stool has been black.. that is a concern as it could mean blood in stools. I hope you've mentioned to your doctor about this colour. Vitamin D deficiency can give pain symptoms. Get your levels rechecked at some point to make sure its been fixed, dont just assume that the supplements you are taking have fixed the deficiency as many need more supplementation then the standard 2000 IU supplmentation rate. (Hospital has given me a 50000IU dosage on one occassion and Im now on 4000IU daily). Chiros can sometimes be of great help.. they have been to me. (I was diagnosed with ostero arthritis in my mid 30s.. without my physio and chiro, I'd be in pain still). Who's managing your hypothyriodism? A specialist or just your regular GP? I suggest if you havent done in the past year.. to make sure you see a specialist for it .. to make sure your meds are at right dosage etc. Good idea to see neurologist too. Fibro wouldnt be the full answer here to your symptoms so you need to keep looking... but fibro can be coexist with other issues. If you do have fibro as PART of another issue and get that diagnosed.. at least then you can target that pain symptom with fibro meds. Fibro can be better diagnosed by having so many of the fibro pressure points (specific places on body fibro patients feel pain in if pressed). Dont allow someone to flob you off with a fibro diagnoses (which could be done by doctors who just want you off their backs and want to give some kind of answer) unless they've checked these fibro trigger points out. Is your dizziness sometimes triggered by anything? eg eatting, standing, heat? etc Do you get post exertional symptoms eg a delayed reaction to exercise?
    taniaaust1 2267 Replies Flag this Response
  • Keep us updated... you have an interesting health case. Hopefully as your doctors havent given up on you yet, they'll work it out. Your case sounds different to the things Im very familiar with (autonomic issues/POTS, ME/CFS which can cause multiple lesions in the brain along with many other symptoms, your lesions thou didnt quite sound like what i remember about ME ones, fibro.. all things which have some similar symptoms to what you describe. You dont really sound just like any of those from info given so far).. It may well turn out to be MS afterall... I know many with MS often face years of undiagnoses before getting a clear one. Autoimmune issues such as Thyriod issues make you more likely to get other autoimmune issues. Your irregular stools could be irritable bowel syndrome. As other suggested a test for Celiac disease would be a good idea. Celiac disease can cause all kinds of symptoms including neurological issues.When you say thou sometimes stool has been black.. that is a concern as it could mean blood in stools. I hope you've mentioned to your doctor about this colour. Vitamin D deficiency can give pain symptoms. Get your levels rechecked at some point to make sure its been fixed, dont just assume that the supplements you are taking have fixed the deficiency as many need more supplementation then the standard 2000 IU supplmentation rate. (Hospital has given me a 50000IU dosage on one occassion and Im now on 4000IU daily). Chiros can sometimes be of great help.. they have been to me. (I was diagnosed with ostero arthritis in my mid 30s.. without my physio and chiro, I'd be in pain still). Who's managing your hypothyriodism? A specialist or just your regular GP? I suggest if you havent done in the past year.. to make sure you see a specialist for it .. to make sure your meds are at right dosage etc. Good idea to see neurologist too. Fibro wouldnt be the full answer here to your symptoms so you need to keep looking... but fibro can be coexist with other issues. If you do have fibro as PART of another issue and get that diagnosed.. at least then you can target that pain symptom with fibro meds. Fibro can be better diagnosed by having so many of the fibro pressure points (specific places on body fibro patients feel pain in if pressed). Dont allow someone to flob you off with a fibro diagnoses (which could be done by doctors who just want you off their backs and want to give some kind of answer) unless they've checked these fibro trigger points out. Is your dizziness sometimes triggered by anything? eg eatting, standing, heat? etc Do you get post exertional symptoms eg a delayed reaction to exercise?I did forget to mention that I have been tested by a rhumetologist for Celiac, and a whole load of other diseases (RA too)...all came back clear. My endocrinologist is the one who finally diagnosed me with Hashimoto's Thyroiditis. However, I am still being treated by my GP for it since my meds are the right dosage and I am still (slowly) losing weight. I REALLY feel like a hypochondriac lately...I also feel as though I have lost the support of my family in this matter.
    CourtneyS 4 Replies Flag this Response
  • Have you had tests for Lyme disease and confections? It is spreading into areas not normally considered for Lyme. Look at Igenex labs for testing, and don't just rely on an Elisa test.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.