I need some help with these blood test results I recieved today. I had been feeling sick, outside of my usual Dys symptoms, so I saw my general care dr and he ran some blood, urine, and CT scan. I had been having unexplained weight gain, extreme stomach bloating that made me look almost pregnant at times, paleness, and dry mouth.

The CT and urine came back fine, but shockingly, my thyroid came back low! My thyroid was tested 6 months ago and was fine. It's always been fine, and God knows I've had it tested many times over the years, with no problems. That's why I was shocked by hearing it is "low." Also, my white blood cell count is high. Of course I'm also a bit concerned about that one since I know that could indicate infection somewhere in the body. My sodium is low, too, but I always run a bit borderline low on sodium, so I'm not overly concerned about that one.

I've been doing some reading about low thyroid, and wanted to ask those of you who may know more about this if having a blood test reading of your thyroid being low means you automatically have "hypothyroidism", and what that means. I'm hoping it doesn't lead to a dx of Hashimoto's Disease or anything else huge that I'll have to deal with right now. Has anyone here ever heard this result from their blood test, and how did you proceed? At this point my Dr simply said he wants me back in his office in 3 to 4 weeks to run the blood work again, to see if the levels are the same and if that could be what's making me sick recently.

Gillian

Gillian,
Autoimmune thyroid problems seem to go along with celiac disease. It can either be low -Hashimoto's or Graves - high. By the way the TSH test goes high when it's Hashimotos and low when it's Graves.

I also have Hashimoto's along with my celiac disease and type 1 diabetes. All three are autoimmune problems and related to a genetic problem with environmental triggers.

Hang in there with your doctor's help and this will get sorted out. Now that I have gotten to the bottom of all my autoimmune diseases I feel so much better. So much of my low blood pressure problems seemed to have been autoimmune related. With medication I almost feel healthy once again and can stay on my feet much longer with out syncope symptoms. There is hope!

I am not sure if one blood test showing low thyroid means that you are hypothyroid. The symptoms that you described, except maybe the bloating, can be related to thyroid issues. Do you know if your doctor tested for T3, T4, TSH and free T3, free T4? All of these play a part in determining what is going on with the thyroid. I would not worry about Hashimoto's at this point. I was hypothyroid for years and did not have the immune component. The treatment for hypothyroid is easy - just another pill. The only way to determine Hashimoto's is through a blood test for anti-thyroid antibodies. I was recently diagnosed with Hashimoto's and am still trying to work out treatment (still just a pill) but it seems that Hashimoto's makes treatment a bit more difficult to figure out. My advice is for you to try to find out what your levels were. Getting thyroid medication could make you feel better. You can always decrease and/or stop the meds if your thyroid levels improve. DId your doc say why he didn't want to treat now?

My Dr's nurse called with the results and said the thyroid "is a little low." The weight gain definitely got my attention since I eat like a bird and if anything should be losing weight. The nurse said I need to return in one month for another blood draw and that at this time we're just sort of keeping an eye on things to see if the levels are any different in 3 to 4 weeks. I'm only 35 so this kind of surprised me, and I'd hate to think of adding yet another new pill. I'm just recently getting used to the Mestinon!

Gillian

It's always a good idea to get lab copies of all tests. And learn what the results mean. With the way doctor offices are so busy now, I find it best to keep track of everything and remind them when I need to be tested again.

I had several different antibodies for Hashimoto's long before my TSH went above normal. I got very puffy looking and slowly put on weight before I was put on synthroid. One symptom for Hashimoto' is low blood pressure. Synthroid is easy to take and has helped so much. If this is your problem you just need to be monitored with lab work until everything stablizes.

I've been battling high BP in recent years, and I'm wondering if my bb is what could have caused the thyroid to go all out of whack. Don't know if bb meds are associated with possible thyroid probs or not. I originally started with low BP when I first started dealing with Dysautonomia, but over the years that has morphed into high BP instead. I'm a little concerned that the new medication I may have to end up taking for this new problem will cause my BP to go even higher.

I almost always get copies of the lab results, but I figured if this is being repeated in 3 weeks I'll wait it out till then and get copies of both test results at once. I definitely don't want to medicate (especially for life, which seems to be the case with these meds) unless I've seen the results myself and feel this is out of control enough to warrant it. I have a friend whose thyroid was low, and she took Levothyroxine for 18 months, then stopped the treatment after her thyroid levels normalized. Is it the experience of others here that one can get off these meds after a time, or is it, as I've read, that this is a lifetime of meds?

Gillian

Elsa - what were your environmental triggers? I was diagnosed with Hashimotos years ago and the only elevated thyroid level was the antibody level. I was told that I did not have celiac disease yet I am so symptomatic. My endocrinologist decided to remove my thyroid in 2003 and it has been such an adjustment. Everything works but there is always a hormone level out of whack. My blood sugar level has always been normal to low but recently it has been shooting up. Even with synthroid replacement, my weight keeps climbing. Like others, I eat "like a bird" but keep gaining.Do you follow any particular type of diet. I've tried every kind of diet there is and nothing helps with the bloating.

Gillian - with POTS, your TSH can fluctuate rapidly - that's why they have a problem treating the hypothyroidism. In one week, on the same dose of synthroid, my TSH went from 0.05 to 36.7. I don't have a thyroid so none of this should be happening. It's supposed to be controlled by meds. I went from a size 10 pants to a 14 in one week. My endocrinologist told me that my POTS was causing problems with my pituitary gland. I hate this illness and I have a spouse that doesn't understand any of it and doesn't want to learn. I fight not to isolate myself from others so believe me you are not alone with this.

Deb K,
Medical researchers aren't really sure what the environmental triggers are for autoimmune thyroid disease or type 1 diabetes. The research behind this speculation is that identical twins obvisously have the same genes but many times only one of the twins gets diabetes or autoimmune thyroiditis. I haven't really read much about other autoimmune diseases.

Of course for celiac disease the trigger is gluten. But celiac disease can appear at anytime in life. So what sets it off at a particular time, would be a good thing to find out. And there are also people who have gluten intolerance and the cause has not been isolated. I know that Hashimoto's thyroiditis can fluctuate and kick on and off. Your situation sounds like it's the pits to deal with.

Feeling isolated with these diseases is a common problem. I sure pick and choose who I spend time with. It's really hard to find emotionally supportive people to be around if you have a chronic disease - especially one in which people don't know anything about. And the other isolating problem is lack of medical professionals who know a thing about dysautonomia. I know that I often have dreams of being lost in a desert when the isolation starts to get to me. Thank goodness for pets.

I agree with both of you. The isolation and lack of sympathy can be startling and infuriating. My Mom, whom I live with and depend on so much, can be a lifesaver at times but isn't very soft and understanding about some of this stuff, and showed no sympathy whatsoever about this new thyroid issue. I'm really worried about this and I feel I have no one who will take it seriously except on these message boards.

Elsa, is it your experience that a mild thyroid condition must be medicated, and does it have to be forever? I can understand that if a person has had their thyroid removed, but what if it's simply a little low?

Gillian

gillian, what is your tsh level?

have you had the antibody test done?

i was told by my first endo that i had hashimoto's, but since leaving her (she was oh, so bad) and getting my full chart, i can't ever see where she tested me for it. Also, she started me on synthroid when my thyroid was "normal, but on the low side of normal". I didn't check into things then like I do now and just took her word for it..., so she eventually killed my thyroid by putting me on it..

But anyway to get to you Gillian -- have them also do a 24 hour urine for Cortison and ACTH too, this could be a source of high BP if your pituitary is getting out of wack. Bren is right they have to test all of your thyroid levels too.

I don't have celiac, but possibly a intolerance. Think of it this way GLUEten, that is what is doing, gluing up your insides..

I'm having my blood tests re-checked in 3 weeks and will request that all these suggestions be put to good use. I don't know my exact numbers on my readings yet; I'll be requesting my blood work copies be sent out to me on Monday.

I'm not sure if my Celiac would have anything to do with this, considering I've been strictly gluten-free for 5 years now, and my CD is currently very well managed. I just saw my Celiac Dr and all my antibodies for CD are currently within normal limits so the disease is definitely well controlled, for a number of years now. My Dr tells me as long as I stay GF, I'm "just like everybody else", basically (and I know he knows his stuff, since he's the leading CD expert in the country and this is all he does.) Of course I suppose I'll always be more prone to these issues than the average person.

One thing that baffles me is this hypothyroid stuff seems to almost exclusively affect women over 50. I'm not even close! Why would this happen to a person in their child bearing years, only in their 30s? Makes no sense to me.

Gillian

Gillian,
Thyroid problems can start at any age. I was diagnosed with type 1 diabetes at age 11 and have been on multiple shots ever since. I was put on synthroid at age 14 and was on the medication for years when a HMO doctor (1976)decided to wean me off it. Then my thyroid started working over time but eventually setteled down to normal for a while. I was off for twenty years when all the symptoms started slowly coming back. I feel so much better on synthroid I see it as a blessing and wished my endo had not been so slow to put me back on it.

The usual medical protocol is to stay on thyroid medication once you are diagnosed. But I have read on a forum of some people who have fluctuating thyroid hormones.

Being sick most of my life (I'm now 60) I find you have to develop a mind set to see medications as a blessing to help you feel better and to live longer. I've gone through my share of bad side effects from medications and doctors who didn't know what was wrong but I have presisted until I found a good combination of medications to handle my dysautonomia. I take four to five shots a day for the diabetes, synthroid, mestinon, clondine and need florinef in the hot summer months. I am just thankful theres been research and medications to treat all my many problems. I am feeling so much better than I was a year ago.

When you develop chronic illnesses there is a grief process you go through as you learn to adjut to a different life situation than you had hoped for. It doesn't sound like your mom is all that supportive. Mine wasn't either. That's why this forum is great. At least we an share and understand each other's frustrations with dysautonomia.

Gillian -- i almost forgot - a friend of mine who is healthy as a horse (brat) had her thyroid tested one time and it was low..., of course, she came to me on what to do, etc. When she saw her doc later she told her that 1. she was on her period when she tested her and 2. she also had a small cold, so the doc felt that threw off the results. She was retested and was normal... just a thought.