Has anyone done any ultrasound of your thyroid? I went to a thyroid/parathyroid specialist who thought outside the box and did one even though I didn't have the labs to justify it. He discovered that I have benign colloid nodules on my thyroid (<1 centimeter). However, presently 3 doctors -- 2 endos, thyroid specialist, PCP -- tell me I'm not hyperthyroid. I'm having more labs run in October. Yes, it's a good idea to tell them what you want done -- I've told them to test of celiac disease. Interestingly, the thyroid specialist told me I must get my vitamin D levels up. Who knows? maybe my symptoms relate to my back problems (pinched nerve, DDD, stenosis, osteoporosis) and vitamin D deficiency.
Thanks Phyllis, just talking to people that know what I'm going through helps.
I've decided to give my doctor all the labs i want done and a list of things i want ruled out and see where I get with that! I've wondered about a goiter before, but never thought any more about it when my TSH's come back normal. Have you ask the Doctor on this forum about your situation and if so, what did he come up with?
Stella, here are my most recent labs, collected August 9 2010 are as follows:
Thyroxine 7.6 ug/dL range 4.5-10.9
T3-Uptake 38.4% (H) range 22.5-37.0 (seems hyperthyroid to me)
TSH 3rd generation ultra 1.73 uIL/mL range 0.55-4.78
Vitamine D 24 ng/mL
Calcium 10.0 mg/dL range 8.6-10.4
PTH-Intact 30 range 14-72
Thyroid peroxidase antibody 26.4 U/mL range <60
Huge history of thyroid disease in my family -- hyper on Dad's side, hypo on Mom's
To Im3713 I have a history of migraine headache, worsening with menopause, and TMJ since adolescence. During my migraines I've always experienced pain in back of my right eye. No problems with my neck though a friend of mine with goiter does feel sometimes that shirts are choking her. Hope this helps. Phyllis
Not putting aside the parathyroid concerns , but can you post any thyroid labs that you had done Phyllis?
You have some complex issues going on for sure.
I forgot an important question for you or anyone else who this might have had happen to them. Does your neck ever feel tight or like when you wear a t-shirt that's close to neck, does it feel like it's choking you. I have had this problem for some time now but is getting worse. I can't lay on my pillow and have it touch my neck or same feeling happens. Hard to sleep on the edge of a pillow? lol Thanks for any comments.
I feel for you just having to live with your symptoms and all. I don't think my doctor is ever going to take me serious about the parathyroid, but I will try one more time before
going somewhere else. Sorry it took so long getting back here but I got some sort of rash last week on my arms, fingers and legs first, then went to my face and neck.
I looked up poison ivy rash, but it really didn't look like that to me or my husband. It's kind of hard to tell. I've never been allergic before! Doc gave me steroids and said it was poison ivy. I'm almost done with the meds and still having some rash problems! Any ideas? Can parathyroid problems cause rashes? Hope they figure out something for you soon and for me. I've had Fibromyalgia for about 20 years and certainly do not need any more added to it! Do you get headaches alot or pain in jaw to ears or sharp pains in your eyes at times? Just curious if any one else has this! I pray that everyone on this forum gets the help and answers they need quickly.
No one knows why my vitamin d is low or for that matter why my calcium is fluctuating. I started with a baseline vitamin d of 20 reached 27 and then fell back to 24 -- having failed to tolerate megadoses I'm now on 3400 IUs d daily and hoping my d goes up. Here are my calcium levels: 11/14/05 9.5; 1/3/08 9.6; 3/2510 9.9; 5/21/10 10.4; 6/24/10 9.8; 7/6/10 9.7; 7/8/10 9.8; 7/28/10 10.0. None of the docs, including dr norman, feel my calcium is significantly elevated -- once a point outside of range (10.4) but generally high side of normal.My ionized calcium was high normal at 1.29 on 7/6/10. My PTH is as follows: 6/24/10 32; 7/6/10 26; 7/28/10 30. So, I have low PTH values.My bone density is terrible I have osteoporosis.
Colloid nodules are benign overgrowth of normal thyroid tissue -- mine are 1 centimeter or less so I'm to be monitored on a yearly basis. Again, no one seems overly concerned about this and my thyroid labs are normal except for one value on the hyper side but no one feels I have hyperthyroidism -- yet. I go back to the endocrinologist at the end of October and I guess I just have to live with my symptoms and try to get my vitamin d levels up.
Thank you for your response. So if Dr. Norman thinks you have no chance of having parathyroid disease and your specialist just having you stay on vitamin d, do they know
why your vit d is low? or are they trying to find out? Are your calcium levels ever gotten
high out of range or are they on the high side of normal? Can you post some of your levels of ca+, PTH, and Vit d, just so I can compare? Sorry for all the questions, but I have so many? What are colloid nodules? Thanks again. lm
I sent a letter to Dr Norman at parathyroid.com and included a chart of my lab values (Ca, PTH, vitamin D, weight) for 4 months. Amazingly, he got back to me immediately to say that there was a near zero chance of my having parathyroid disease. That got me on track to refer myself to a thyroid/parathyroid specialist in my area -- he thought creatively and did an ultrasound of my thyroid which revealed multiple benign colloid nodules. My labs simply don't match my symptoms, nodules and family history -- at least not yet. (My Ca levels were fluctuating within normal range). The thyroid/parathyroid specialist I saw feels it's very important that I get my vitamin d levels up. This is just my experience -- Good Luck to you, Phyllis
Thank you both for your comments and questions? I'm so glad to have someone to talk with. I feel like my family and doctor are just tired of listening to me or maybe because they just don't get it. I am due to see the doctor again in Nov for a reck on labs. I am afraid of the vit d elevating my calcium, but really don't know what else to do. I tried talking to my doctor about the parathyroid thing but got nowhere. I also called an endo
before taking the vit d because of what I read on Parathyroid.com reguarding having a stroke. But the nurse told me to just take the Vitamin D and I should be fine. I just took my 4th pill on thursday and still not doing well. Does it take a long time for Vit d to start helping if it's going to? I had a whole body bone scan done about 3 months ago and it came back neg. I took it that it meant my bones and bone density were all ok? Does
the scan show bone density also? This is my first time being on any forum so bare with me if i'm going on and on. My brain doesn't work very well anymore so if I sound a little crazy that's because I AM! lol It really is rough dealing with this. I went back and checked thru the years and of the copies I have of my labs my calcium has been on the high side for years. It was 10.1 back in Feb of 1992, 10.5 in April of 2001 and alot of years that I don't have the results for. Alot of the results were anywhere from 9.1 to 9.9 from 1992 thru 2001. So having just a couple of higher results thru these years mean anything or just maybe normal for a few times to be in the 10's? I'm going to get off here
before you kick me off the forum! Really, Thanks again for all the help and info. It's muchly appreciated. I would love to hear of any symptoms either of you or anyone else has had or has with this. lm
I went through THREE years of horror before referring myself to the Norman Parathyroid Clinic. VARIABLE calcium levels are a sign of parathyroid disease! Please check out the Parathyroid Education Foundation. There are a lot of videos that may answer some of your questions. It is entirely possible to have parathyroid disease with calcium levels that are high one test and normal the next! Believe me, I went through this for years. My PTH was NEVER high. The highest it ever got was 33. Be careful supplementing with the Vitamin D. My Endo also had me do that and my Calcium eventually got as high as 11.4! Taking the megadoses of Vitamin D if you have hyperparathyroidism can cause a stroke. This is a horrible disease and so under diagnosed! Send me a private message if you like. sophie
Can you have your Vit D levels rechecked?
Very low vit D levels can also be a compensatory reaction to hyperparathyroid.
If you're in the US, you might want to see if you can contact the doctors at parathyroid(dot)com.
Have they checked your bone density?