No Test For You!

[Nancy19]

I went to my doctor last week for my 4-month thyroid check up. I mentioned that I'm still having "intestinal issues" since being sick with a month-long bout of diarrhea back in March/April for which testing showed no cause (I've been having the same issues for years before my illness but not as severe, particularly after discovering I'm lactose intolerant and started taking Lactaid). I asked her - again! - if she would test me for celiac, since I have several symptoms and she refused - again! Instead, she told me that sometimes after an illness such as I had, people develop a "sensitivity to wheat" and to cut back on my ingestion of wheat products for a while and see if I feel better. Huh? Without testing me, didn't she just tell me I'm gluten intolerant?

Also, I asked her if she would test me for Hashimoto's since I still have so many hypothyroid symptoms and she said that it wasn't really necessary because the treatment is the same. Is it really, or do I have a really uninformed doctor? I also asked about taking another med along with my Synthroid and she said that the other thyroid meds are notoriously hard to regulate and have nasty side effects, so she doesn't prescribe them.

So anyway, I got my TSH test back and my level is .1, which is really low but I still feel like crap (her response? "well, sometimes if you have a wheat sensitivity it can make you feel like your thyroid is too high."). My doctor thinks it's too low (she wants it around 2.5) so she lowered my dose slightly and wants to see me in six weeks. I guess this is a small victory, given the fact that my TSH was over 100 a year and a half ago, and three years ago it was 398.

I really like my doctor and she has been absolutely wonderful and understanding when I didn't have insurance (giving me med samples and charging me 1/2 the normal office visit and lab costs), but I'm thinking she's clueless about this. I don't have great insurance and I'm not sure if I can go to a GI doctor without a referral. I'm really confused and beginning to understand the frustration many of you felt before you got diagnosed!

[pricklypear1971]

She is clueless about gluten, celiac, and thyroid.

I don't care if you have to find another doctor, get that Hashis test, try a t3/t4 combo, get a celiac panel.

And the right t3 level is the one that makes you feel good. Which may be impossible without going gluten-free.

Try a Naturapath for the testing. See what it says then get to a GI if needed. Your insurance won't pay for it but it may be a quick resolution.

[eatmeat4good]

She is tripping...telling you no to the Celiac tests and then telling you your symptoms are a result of wheat. You should tell her that you can't tell a person is gluten intolerant OR Celiac from the outside. Duh...

Yeah, I went the rounds with Dr.'s too.

I have Hashimoto's but I have no experience with the meds...my TSH still runs normal...but I have an enlarged thyroid. they said my thyroid will eventually burn out and that is when we start meds. I'm hoping being gluten free will help the symptoms.

Can you go to another Dr. for a one time deal and say you want a Full Celiac Panel.

Can you just give up all gluten?

Dr.'s are maddening...I feel for you. It is so frustrating to be ignored. But to be refused the tests when she is actually verbally giving your theory about wheat some credence...that is just ludicrous. Aren't they taught to test not just guess? I'm baffled for you.

[AVR1962]

  On 9/15/2011 at 1:36 AM, Nancy19 said:

I went to my doctor last week for my 4-month thyroid check up. I mentioned that I'm still having "intestinal issues" since being sick with a month-long bout of diarrhea back in March/April for which testing showed no cause (I've been having the same issues for years before my illness but not as severe, particularly after discovering I'm lactose intolerant and started taking Lactaid). I asked her - again! - if she would test me for celiac, since I have several symptoms and she refused - again! Instead, she told me that sometimes after an illness such as I had, people develop a "sensitivity to wheat" and to cut back on my ingestion of wheat products for a while and see if I feel better. Huh? Without testing me, didn't she just tell me I'm gluten intolerant?

Also, I asked her if she would test me for Hashimoto's since I still have so many hypothyroid symptoms and she said that it wasn't really necessary because the treatment is the same. Is it really, or do I have a really uninformed doctor? I also asked about taking another med along with my Synthroid and she said that the other thyroid meds are notoriously hard to regulate and have nasty side effects, so she doesn't prescribe them.

So anyway, I got my TSH test back and my level is .1, which is really low but I still feel like crap (her response? "well, sometimes if you have a wheat sensitivity it can make you feel like your thyroid is too high."). My doctor thinks it's too low (she wants it around 2.5) so she lowered my dose slightly and wants to see me in six weeks. I guess this is a small victory, given the fact that my TSH was over 100 a year and a half ago, and three years ago it was 398.

I really like my doctor and she has been absolutely wonderful and understanding when I didn't have insurance (giving me med samples and charging me 1/2 the normal office visit and lab costs), but I'm thinking she's clueless about this. I don't have great insurance and I'm not sure if I can go to a GI doctor without a referral. I'm really confused and beginning to understand the frustration many of you felt before you got diagnosed!

Have you thought of going to another doc? I liked mine too but some things he was saying made no sense kind of like your post. What kind of thyroid issues are you having? Are you on meds? I have a nodule on my thyroid that I take meds to try and shrink, have to go back in Nov for retesting. I too still have symptoms and wonder if my meds are not working and wonder if my original tests were accurate. I see a new doc this next week.

The best chance of having positive test results for gluten intolerance or celiac is while you are on gluten so if she is suggesting you limit glutens it makes no sense that she would run the tests. How frustrating! This is where we run into so many brick walls that we finally have to make a decision what is best for ourselves. You could do an elimination of say breads and pastas for example, there is plenty of gluten left in crackers and other snack foods without going totally gluten-free and see if that makes a difference. That is actually how I found out gluten was my problem. Doing this for 2 months in itself would probably give you your answer. I did it for 3 weeks and I knew.

Are you still consuming dairy while on the Lactaid? I take it too as I am also dairy intolerant, however, even with the pills I still cannot have any milk, not even coconut milk. I can only have aged (hard) cheese and some yogurts, anything that is aged. Could the dairy still be making you sick?

[Skylark]

With a TSH at 0.1 and still hypothyroid symptoms I think you need to ask for an endocrinologist referral. If she refuses that, insist on a second opinion within the practice group you're seeing. Ditto the celiac testing.

If all else fails, I think you can get a Canadian home celiac test kit shipped to the US.

Open Original Shared Link

[ravenwoodglass]

Without insurance it can be rough. See if there is a clinic with a sliding fee scale in your area. Your doctor may be reluctant to do more testing due to the insurance issue but some hospitals will also use a sliding fee scale with their labs. Check into that. If you don't have any options you can go gluten free without testing but that would make it very hard to get testing later.

[Nancy19]

  On 9/15/2011 at 6:05 AM, AVR1962 said:

Have you thought of going to another doc? I liked mine too but some things he was saying made no sense kind of like your post. What kind of thyroid issues are you having? Are you on meds? I have a nodule on my thyroid that I take meds to try and shrink, have to go back in Nov for retesting. I too still have symptoms and wonder if my meds are not working and wonder if my original tests were accurate. I see a new doc this next week.

The best chance of having positive test results for gluten intolerance or celiac is while you are on gluten so if she is suggesting you limit glutens it makes no sense that she would run the tests. How frustrating! This is where we run into so many brick walls that we finally have to make a decision what is best for ourselves. You could do an elimination of say breads and pastas for example, there is plenty of gluten left in crackers and other snack foods without going totally gluten-free and see if that makes a difference. That is actually how I found out gluten was my problem. Doing this for 2 months in itself would probably give you your answer. I did it for 3 weeks and I knew.

Are you still consuming dairy while on the Lactaid? I take it too as I am also dairy intolerant, however, even with the pills I still cannot have any milk, not even coconut milk. I can only have aged (hard) cheese and some yogurts, anything that is aged. Could the dairy still be making you sick?

Yes, I am on Synthroid. Currently I'm taking 225 mcg. I had been taking 250 before the latest test, but apparently that was too high. I was tested for Hashis years ago and it came back negative. I had to fight to get that test done, too.

The Lactaid really helps with milk. I love my milk and I would be devastated if I couldn't have it any longer! It has been a godsend. I can drink my milk without any issues. I take the tablets because the lactose-free milk is too sweet-tasting and too expensive!

[Nancy19]

  On 9/15/2011 at 6:15 AM, Skylark said:

With a TSH at 0.1 and still hypothyroid symptoms I think you need to ask for an endocrinologist referral. If she refuses that, insist on a second opinion within the practice group you're seeing. Ditto the celiac testing.

If all else fails, I think you can get a Canadian home celiac test kit shipped to the US.

Open Original Shared Link

Yes, I have thought of that. I'm going to check with my insurance to see if I have to get a referral. If not I may just go on my own.

Can Americans buy the celiac home test? I've seen the web site before and IIRC it says they only ship to Canadian addresses. I'm in Detroit...I wonder if I can get a Canadian PO box. LOL

[JoshB]

You can order the "home" test from Canada. But there is usually a local place that will test without a doctor's order. I would suggest that the home test would be nice if it was positive, but since it only performs one of the tests they will run in a celiac panel (IgA-TtG I think?) it might be more effective to get the full panel.

[ravenwoodglass]

  On 9/16/2011 at 3:05 AM, Nancy19 said:

Yes, I have thought of that. I'm going to check with my insurance to see if I have to get a referral. If not I may just go on my own.

Can Americans buy the celiac home test? I've seen the web site before and IIRC it says they only ship to Canadian addresses. I'm in Detroit...I wonder if I can get a Canadian PO box. LOL

You could go with Enterolab here in most US states. Just keep in mind that they don't diagnose celiac but they will tell you if you are making antibodies.

[Roda]

Your TSH is low which ususally indicates hyper. If you are still feeling hypo with it this low then you need to look further. Standard thyroid tests should include TSH, free T3, free T4 and thyroid antibody tests (I believe there are two or three). You could have a problem converting the T4 meds to the active form of T3. I presented to my current endocrinologist with a normal TSH and free T4 but low free T3 and with hypo symptoms. She lowered my T4 med (she said I didn't convert well) and added in a T3 med (cytomel) with it. It made a world of difference. Since 2009 I have been on 112 mcg of levothyroxine(T4) and 10 mcg of liothyronine (T3). I did well until this year. Last visit in June I was complaining of no energy/fatigue. Just went yesterday and complained symtoms are worse. She looked over my labs from June and they were stable. I noticed an upward trend of my TSH and lowering of my free T3. While all "normal", TSH 1.31 and free T3 3.91, I feel bad. I do so much better when my TSH is suppressed and my free T3 is elevated. Without current labs (just drawn yesterday) she upped my T3 medication to 25 mcg. It might also benefit you to get a rT3 test done. rT3 in a byproduct of the breakdown of T4. It has no benefit, but takes up the receptors that the T3 need. By occupying the receptors the T3 can not bind and be utilized by the body. There is a ratio of free T3 and rT3 and you want it at a certain level.(This is my very basic understanding of it). Your doctor should treat your symptoms not your numbers. T3 meds are stronger than T4 meds since it is the active form of the hormone. It has a relative short half life. Yes you can have symptoms with it, but because of it's short half live it is easier to adjust and feel differences a lot sooner than T4 meds. T4 meds can take anywhere from 4-6 weeks to adjust. There are a few others on here that are pretty knowledgable about thyroid stuff. BTW my endocrinologist is the one that ordered my celiac test after I asked. I would consider finding an endocrinologist because I don't think your PCP is up on all the treatment for thyroid and the relationships with other autoimmune diseases. IMHO celiac could cause you to have some sinilar symptoms due in part to vitamin/mineral deficiencies. Two test that you should consider are iron and ferritin tests. When low they both can make you feel tired/fatigued and they both influence thyroid. Vitamin D deficiency can make you feel bad too.

[Skylark]

  On 9/16/2011 at 3:05 AM, Nancy19 said:

Can Americans buy the celiac home test? I've seen the web site before and IIRC it says they only ship to Canadian addresses. I'm in Detroit...I wonder if I can get a Canadian PO box. LOL

They have always shipped to the US for personal use. If you put one in your cart on the website, you'll see the US shipping info.

[Jestgar]

  On 9/15/2011 at 1:36 AM, Nancy19 said:

I asked her - again! - if she would test me for celiac, since I have several symptoms and she refused - again!

Also, I asked her if she would test me for Hashimoto's since I still have so many hypothyroid symptoms and she said that it wasn't really necessary because the treatment is the same.

First question is, do you really want these results in your medical file?

If so, next time you ask, and she refuses, ask her to sign (your pre-prepared, dated) statement that you specifically requested these tests, based on these symptoms, and she refused.

I'm guessing that will get you your tests.....

[pricklypear1971]

  On 9/16/2011 at 9:43 PM, Jestgar said:

First question is, do you really want these results in your medical file?

If so, next time you ask, and she refuses, ask her to sign (your pre-prepared, dated) statement that you specifically requested these tests, based on these symptoms, and she refused.

I'm guessing that will get you your tests.....

I'm guessing you'll be finding another doctor.

[Jestgar]

  On 9/17/2011 at 12:17 AM, pricklypear1971 said:

I'm guessing you'll be finding another doctor.

I guess that's another possibility. Maybe it would at least open discussions.

[cahill]

Personalty I would look for a new doc if your current one will not order the blood test you are asking for or give you a referral to another doc.

I went thru this with my former primary care doctor. Last year I became increasing ill. I asked my PCP for referrals to specialist (that my insurance at the time required) at first she refused, I insisted, thing DEFINITELY got out of hand. When I left I had the referrals I asked for in my hand BUT only after a loud verbal fight with her.

I had asked for,insisted on, and received referrals to a Endocrinologist, a gastroenterologist and an allergist.

My PCP wanted to just give me anti anxiety drugs

The testing at the allergist reviled that I was allergic to eggs and almonds (both of which I was consuming on a daily basis)

The endocrinologist did many test ,the main ones were:

I had a positive ANA

I tested positive for Hashimoto antibodys (998 with normal being <10

My vitamin D level was only 8

I have reduced renal fuction.

The GI doc I saw diagnosed me with celiac's

There is a possabliy I also have Gilbert's but are rechecking and watching my liver panels to be sure

The PCP I saw last year is no longer my doctor. She was angry when she received the test results and I was right (there was something wrong) and she was wrong( she felt all I needed was anti anxiety drugs. That follow up office visit DID NOT GO WELL

Bottom line, if you dont get the test you ask for, find a new doc

[ravenwoodglass]

  On 9/17/2011 at 2:41 AM, a1956chill said:

Personalty I would look for a new doc if your current one will not order the blood test you are asking for or give you a referral to another doc.

I went thru this with my former primary care doctor. Last year I became increasing ill. I asked my PCP for referrals to specialist (that my insurance at the time required) at first she refused, I insisted, thing DEFINITELY got out of hand. When I left I had the referrals I asked for in my hand BUT only after a loud verbal fight with her.

I had asked for,insisted on, and received referrals to a Endocrinologist, a gastroenterologist and an allergist.

My PCP wanted to just give me anti anxiety drugs

The testing at the allergist reviled that I was allergic to eggs and almonds (both of which I was consuming on a daily basis)

The endocrinologist did many test ,the main ones were:

I had a positive ANA

I tested positive for Hashimoto antibodys (998 with normal being <10

My vitamin D level was only 8

I have reduced renal fuction.

The GI doc I saw diagnosed me with celiac's

There is a possabliy I also have Gilbert's but are rechecking and watching my liver panels to be sure

The PCP I saw last year is no longer my doctor. She was angry when she received the test results and I was right (there was something wrong) and she was wrong( she felt all I needed was anti anxiety drugs. That follow up office visit DID NOT GO WELL

Bottom line, if you dont get the test you ask for, find a new doc

The reason it didn't go well is because you could have sued her for malpractice if you chose to and you would have won. Glad you found a new doctor and finally got those referrals.

My ex-GI and GP were not angry when I finally got my diagnosis they apologized so many times it was ridiculus and they never refused to order a test I asked for afterwards. They also had repeatedly handed me scripts for antidepressants also prediagnosis. I refused to take them as I knew I wasn't depressed I was sick.