Undiagnosed and Getting Sicker

[amuldoon]

I have been sick for months and up until last week everyone was telling me it  had to be my thyroid and this latest round of tests would show something useful.  I am constantly so exhausted that daily life is impossible, have spells of dizziness, nause and shaking, am constantly cold (always have body temp around 96-97), have no appetite, my hair is breaking and now coming out.  In the past few weeks I have developed severe intermittent joint pain in arms and right leg, with muscle tenderness in between and constant difficultly with small muscle movements (like picking up paper).

My TSH for the past month:   10/3: 0.813; 10/9: 0.678; 10/31: 1.254
TPO Ab:(Ref Range 0-34) 10/9: 1531; 10/31:1255
Anti-Tg Ab: 10/31: 710 (Ref Range 0-40)

They have run several metabolic pannels and blood counts and the only things anyone has noted is that my white blood cells have doubled in the past month (still not very high at 11.4) as have my lymphs (absolute) (from 2.1-4 with a ref range of 0.7-3.7).  My ESR went from 1 to 20 once the joint pain developed, but both seem to still be in the normal range.

All other thyroid results appear normal.  They have now tested T4, Free T4, T3 and Free T3 and all results are within the reference ranges.

Please give me any ideas.  I have seen an endocrinologist who wouldnot give me any information at all and kept telling me it's all in my head.  I saw an infectious disease specialist who said he believe I was sick but had no ideas.  I have a neurologists appointment tomorrow, but the one thing everyone keeps coming back to is thyroid.

Please help me.  I want my life back and I miss being able to take care of myself and do all the things I'm used to.

Sorry this was such a long post.  Thanks for your help!
-Anna

[alysmum]

Your TPO and your TgAb are way out of the reference range.  Did they tell you it could be early Hashimoto's Disease?  They probably consider you to be euthyroid (because your TSH is in the normal range right now) but with the antibodies against your thyroid your TSH might be going up and down.  More importantly, your normal TSH range may be lower than 1.0 and that is whay you are not feeling well.  You have the symptoms, and according to the labs above you have the antibodies against your thyroid-- See a new Endo and ask him/her what you can expect, how to treat, and how often you should come in to have your blood tested so that if/when your TSH goes up, you should start on thyroid hormone...keeping it around 1.0 is usually suggested.

[kitty9309]

I agree with the above completely. I have done a lot of research after my diagnosis of Hashimoto's hypothyroidism. In fact, I diagnosed myself and went to an endo after my primary doc refused to treat me unless my sTSH was over 10. My TSH was up to 6 and bounced around from 3.8-6.0 over the last several years. I had symptoms including dizziness. Every doctor tested my thyroid 1st and then said my results fell into the "normal Range" The endos I have seen say that the upper end of the normal range includes people who are hypothyroid, especially with pos. antibodies.
I don't know what they will say because your TSH looks ok, but it looks like it doubled at on point- from .6 to 1.2. There is a good explanation of an individuals normal range in this article.
http://jcem.endojournals.org/cgi/content/full/90/9/5483

Keep pushing for answers from your docs or reliable sources on the internet like the one above.
My dizziness has somehwat improved, but I am still not at my optimum dose yet, will know next month when I get retested. Dizziness can be a symptom of hypothyroidism.

Good luck

[amuldoon]

Thank you both for your help!  my GP had a fight with my endocrinologist today that ended with prescribing a trial of Levoxyl to see if it makes  a difference. Of all people, the neurologist managed to talk my GP into a temporary diagnosis of Hashimoto's and an attempt to treat it.

I'll let you know how it goes!  Hopefully this is it...

-Anna

[alysmum]

Good for you!  It may take time to feel better...you may need to do some med tweaking...and keep the doc who stood up for you.  Any others have got to go.  Best wishes---and let us know how it works.

[witchie]

omg those symptoms sounded just like me...  it was the hair falling out that hit me the worst (omg im vain)  but i had waist length silky hair til i got hashimotos lol there is life after hashimotos tho  just changed life is all ...  you will survive :)  good luck hon  

[nikgirl28]

oh my gosh! finally i found someone exactly in the same boat as me...i'm constantly going to doctors and ER to be told it's all in MY HEAD also...I'M SOOOO tired of it!!! 6 months postpardum I experienced constipation and fast heart rate and then 3 months ago BANG dizziness, jumbled thoughts, extreme tiredness, extreme coldness, large lymph nodes, muscle weakness and spasm constantly...anxiety, depression, eye weakness, facial numbness and tingling....back and forth bowel movements, hair falling out in handfuls...i diagnosed myself with what i believe to be thyroiditis...inflammation of the thyroid...my thyroid feels extremely painful and tender...i'm so depressed because no one is giving me any answers....i'm going to see a naturopath next thursday for some answers....

[kitty9309]

I also have dizziness for the last 18 months and previous dizziness 2 other times in the last 13 years. I have muscle spasms for the last 2 years. Last 3 months- anxiety and insomnia. I was finally diagnosed hypothyroid in Sept.by and endocrinologist after I diagnosed myself. An ER nurse told me in August that I needed to have my thyroid checked even before I told her my thoughts, She had also been through nearly the same thing. She told me to trust my instincts and get to an endocrinologist!!
Good luck w/ your upcoming appt. and don't give up!

[amuldoon]

My GP is the only person who believed me for a really long time and I think I finally figured out why.  She is a DO not an MD (which is mostly the same thing but with a few key differences).  She was trained to focus more on symptoms and the whole person than test results and that is definitely clear in her dealings with me.  I would keep trying doctors (and see if you can find a DO) until they listen to you!

This website http://www.osteopathic.org/index.cfm?PageID=findado_main is a great way to find a DO near you.  I have seen many GPs and specialists over the years and I really have come to believe that DOs are more committed to your well being not your numbers.

Good luck!  I hope they can find a way to make you feel better.

-Anna