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Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/7/2017 3:40 PM (GMT -7)   
Hi all, this is my first post, I have several questions and am not sure if this is where I should post or if thyroid issues is where, I’m dealing with both.
Here is my background story!
For the past 13 years I have been struggling with hypothyroid issues. There have been a couple times where I have became hyperthyroid as well, but my numbers bounce around a lot. Most recently my primary finally referred me to an endocronologist due to an enlarged thyroid and had an ultrasound done that showed just enlargement no cysts etc. my meds has been increased for 6 weeks at that time and my numbers were not adjusting well at all.
The endocronologist ran blood work to check for celiac and hashimotos at that time, celiac came back very unlikely and hashimotos was positive. He increased my medication at that time and referred me to the GI doctor.
The only thing that has been checked is my tsh which I think I need the rest of the profile checked as well.
Now while I was waiting for my consultation with GI I started to have bleeding and a lot of mucus with no stool when I had a Bowel movement, I went to urgent care once who told me it was constipation and to use miralax. This really was not helpful and about a week later it was actually worse so I called my primary doctor who had me go for a colonoscopy.
The colonoscopy found inflammation which the doctor biopsies and the nurse called and said it was proctitis and started me on cortisone suppositories for 14 days. After 13 days I sent a message to my GI doctor letting him no this has produced no improvement.
Today I was sent for blood work, a CBC with differential and C-reactive protein. My results were posted in my chart and the CRP was listed as <.4 and the CBC only showed below range on the wbc and rbc other than that my numbers are within range.
I started 40mg prednisone for 7 days, tapering by 5 mg every 7 days.
I’m not 100% what my questions are other than does this sound familiar to anyone else? Will the doctor have more info to share with me when I finally have my consult on the 23rd? What are some things I can do from home to help myself?

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 140
   Posted 10/7/2017 4:41 PM (GMT -7)   
I would insure that your celiac disease was really negative. I have Hashimoto's and CD. My blood panel (complete with TTG! EMA and DGP). Only had one positive on the panel and it was the DGP which is not common. Some Doctors will say this result is negative. They expect positives on the entire panel or they just run the cheaper, but effective, but does not catch all celiacs, TTG test.

Get copies of your lab reports and check.

My bopisies revealed severe damage and my only symptom was anemia.

You can have more than one AI issue and that does include UC.

Good Luck!

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/7/2017 5:20 PM (GMT -7)   
Ok this is all my blood test results from the last month
CRP <0.40
WBC 4.4
RBC 3.87
Hemoglobin 12.3
Hematocrit 37.7
MCV 97.4
RDW 12.7
Platelets 177
Neutrophils 2.06 and 46.7%
Lymphocytes 1.69 and 38.2%
Monocytes 1.69 and 11.5%
Eosinophils 0.10 and 2.3%
Basophils 0.05 and 1.1%
Immature Grabulocytes 0.01

TSH 14.35

Thyroid autoantibodies
Thyroperoxidase >900
Thyroglobulin 6.7

Celiac
IgA 226
TTA IgA <1.2

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 140
   Posted 10/7/2017 11:10 PM (GMT -7)   
Definitely Hashi's! But inconclusive on the celiac disease test. The IgA result, in the case of CD, is just used as a control test. It can help tell if the TTG IgA test worked. But the TTG is not the only celiac test. It is a common screening test. Consider getting the rest of the panel.

I have not been able to find out why I never have had a positive on the TTG, even on follow-up tests (so it was not a fluke). This happens to the very young or the very old. I suspect that it has to do with autoimmune issues or just my genetic makeup.

Learn more about testing:

http://www.cureceliacdisease.org/screening/

You must be on a gluten diet for any celiac disease testing to be accurate.


I hope you get on thyroid replacement ASAP. Your TSH is high!

Post Edited (cyclinglady) : 10/8/2017 12:14:44 AM (GMT-6)


hypoHashimoto
Veteran Member


Date Joined Jul 2012
Total Posts : 757
   Posted 10/8/2017 6:35 AM (GMT -7)   
As you can see your TSH is extremely high, and need to consult with an Endo to start you on Levothyroxine or to adjust your dose properly if you are already on it!

I think this should be top priority for you!!!!

wishes for good health,

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/8/2017 7:02 AM (GMT -7)   
I have been on Levi for years, current dosage is 137.

I will talk with the GI doctor when I there on the 23rd about the remaining tests for celiac. I do know that when I cut celiac out of our families diet to see if it helped with some issues my son was having I was the only one to notice improvement.

Post Edited (Organicmommy) : 10/8/2017 8:12:55 AM (GMT-6)


hypoHashimoto
Veteran Member


Date Joined Jul 2012
Total Posts : 757
   Posted 10/8/2017 8:01 AM (GMT -7)   
Then with this TSH you are NOT on the proper dose for you, you still need much much more.

Do you take it early morning on an empty stomach for at least one hour? this is the key for it to work.

You need an ENDOCRINOLOGIST to adjust your dose properly and to bring your TSH to between 1-3 .


wishes for good health,

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/8/2017 9:27 AM (GMT -7)   
My dose was 88 2 months ago and then my general dr upped it to 112. When I saw the endo 3 weeks ago the number had only dropped by .2 so he increased the dosage then, I terecheck in in 3 weeks again. I take my pill at 6 am with a glass of water and then eat and take my other meds at 8-9 am

hypoHashimoto
Veteran Member


Date Joined Jul 2012
Total Posts : 757
   Posted 10/8/2017 9:53 AM (GMT -7)   
Good, this sound as the right plan, continue following up with your Endo.

Best,

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/8/2017 2:18 PM (GMT -7)   
Thanks, I do think I need to have the run the rest of the thyroid tests as well but they never seem to order them. I am also questioning if I should try a gluten free diet and not worry about an actual diagnosis first being I have ate that way in the past and felt considerable better.

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 140
   Posted 10/8/2017 4:34 PM (GMT -7)   
Please feel free to try the gluten free diet, but ONLY AFTER you have really ruled out celiac disease. It could be a reason why you might not be absorbing your thyroid medication.

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 10/8/2017 5:44 PM (GMT -7)   
I will make sure to fully get checked before starting it!

There's Always Hope
Regular Member


Date Joined Sep 2015
Total Posts : 29
   Posted 11/16/2017 9:02 AM (GMT -7)   
You do not need to see an ENDOCRINOLOGIST, you need to see a competent doctor or nurse who understands thyroid disease and Hashimoto's. That endocrinologist that you saw does not appear to be one. IF he was, he would have understood that to diagnose and treat Hashimoto's, a complete thyroid panel must be tested, not just TSH. Hashimoto's is much different than someone who is just hypo, since you are also dealing with the cause of the disease, autoimmune attack on the thyroid. It is not treated based on TSH or TPO. It is prescribed based on a combination of your symptoms, levels of FT4 and FT3, and TSH. That endocrinologist should have know this and not just increased your medication without knowing if you also need T3 supplementation, not just T4. But then again, most endocrinologists only prescribe T4 and ignore the need for T3.

Thank you for posting your test results. The laboratory range is needed to be able to interpret what your numbers mean.

In my humble opinion and my previous bad experiences with multiple endocrinologists which were similar to yours, I would not go back to that doctor. I would not waist my time or health, but this is just me. So far he's proven that he doesn't know how to properly diagnose or prescribe thyroid medication. There are nurses, primary care physician's, some medical doctors, naturopaths, functional or integrative medicine doctors who can help you. You just need to find the right one.

Your GI symptoms sound like they could be Celiac's. A blood test result saying "highly unlikely" means there is a chance of Celiac's. An endoscopic biopsy is needed to confirm whether you have Celiac's or you don't.

Autoimmune diet is recommended for Hashimoto's. This is free of gluten, dairy and soy.

Good luck!
Hashi's, low C3, H63 het, high TNF-a, low CD57 (Lyme neg), MTHFR 1298 het
Microscopic blood urine since 90's. Why?
'17-Trying to figure what's wrong w/my swollen finger joints, pains, stiffness, muscle spasms and pains elsewhere that come+go. Neg: RF, ANA, Sjogren's. Was recently told by a specialist that my hands are osteoarthritis, and fibro, but I don't have those symptoms.

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 11/17/2017 5:21 PM (GMT -7)   
I had my tsh drawn again today so I will post that as soon as I get it.
I was able to get the gi dr to test free t3 and free t4
Free t3 was 2.8 with range of 2.8-4.4
Free t4 was 1.71 with range .75-1.76

My celiac was
IgA 226 range 61-356
Tissue transglutinase Antibody <1.2 range <4.0

My Hashimoto was >900 with range of <9.0

I had a colonoscopy that they had to stop prematurely due to the pain it was causing that found ulcerative proctitis which they have only treated with suppository steroids which did nothing then prednisone which has not helped the issue either. I go back the 6th of December for a full colonoscopy and endoscopy under sedation.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3841
   Posted 11/18/2017 10:11 PM (GMT -7)   
I will second that endos are terrible at autoimmune. They dont know the tips that people here or a functional medicine MD or natural path knows. Hopefully these gastros know more about autoimmune digestive issues than you endo knows about hashimoto.

As stated above, eliminating gluten, dairy and soy from diet improves hashi antibodies, but you need to stay on this bad food for celiac testing.
Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been.

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 11/18/2017 11:29 PM (GMT -7)   
I did go see a functional medicine dr but he would not work with me unless I had 4000-6000 dollars up front to start. I am working on getting in with a different one that will take payments on a per visit basis. I’m willing to put forth the money for my health but I don’t have it all up front to start with.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3841
   Posted 11/19/2017 12:55 AM (GMT -7)   
Good move, skip that one. Money up front is a rip off. Many (not all) of the chiro wanna be Drs push the up front pay - big red flag.

Look on the website I mentioned. I have seen three functional MD's for lyme, two took ins and were also MD's. The one who didnt take insc was also still an MD, but only billed you for 300 per hour. This is upper mid west though (not high $ like the coasts).

Maybe look on stop the thyroid madness website for a good thyroid Dr in your area who will Rx pig thyroid and look at T3/T4, not just TSH. about 10% of regular inc accepting Drs will do this. Thats what I do for thyroid. I was all over the place in the past.
Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been.

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 140
   Posted 11/19/2017 8:45 AM (GMT -7)   
Any medical doctor (even your GP/PCP) can order a celiac panel, but some insurance or providers do not allow it (all about the cost). A GI can order the complete panel in that case. Ask for the DGP IGA and EMA IGA celiac tests since you are not IGA deficient based on your mid-range test result (that test, for the purposes of celiac disease testing, insures that any IGA test has a valid result).

I hope you find your answers to your current issues. Keep adocating for your health. Ask your GI if he plans on taking six or more small intestinal biopsies as Villi damage can be patchy. If all is negative, consider a pill camera. I thought my niece had CD for sure (it is the only autoimmune disorder that is documented to be genetic), but only the pill camera caught her Crohn’s well beyond the reach of both scopes. Not saying you have Crohn’s, but to keep advocating!

Remember, CD can develop at anytime in your life. So, even if all negative now, keep that in mind somewhere down the road.

Organicmommy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted Yesterday 10:11 PM (GMT -7)   
I just got my tsh back today and it was .01 with a range of .35-4.9 so now I’m on the opposite spectrum. With the celiac tests that I had done showing unlikely but still having the hashimotos come back positive the functional medicine dr I saw took me off gluten 2 weeks ago, what is the chance this affected this?
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