More Questions...

[Brit1612]

Sorry that I ask so many questions!  And thanks to all of you who are always so helpful!

 

By the way, my sons endoscopy / colonoscopy got cancelled because he was put on a long regiment of antibiotics for a sinus infections.  So now, we have to wait and wait some more.  It is re-scheduled for the 24th of this month.  He is happily eating gluten and seems "fine".  I don't know what to think anymore.  I was convinced he had it, now I just don't know.....

 

 

But I am wanting to ask about TSH results.  I read a response to another thread the other day where someone mentioned that the TSH level should be close to a 1.  Out of curiosity I went back and checked what my level was....  I had recently been told by my gyno that I needed to have my thyroid checked due to my heavy periods (which caused me to be very anemic).  She said that heavy periods can sometimes be related to thyroid issues.  I said ok, and didn't think much about it.  She called a week later and said my thyroid was "fine".  

 

When I curiously went and looked up my level it was a 2.56, and did not have a reference range listed.  Sooo, I googled TSH levels and was surprised to see how conflicting all the thyroid info was.  I read all about the fact that the T3 and T4 should be tested as well, but before I had no clue and didn't know to ask for these test.  I don't really have any symptoms other than the heavy bleeding (which is now controlled with birth control) and I have gained some unwanted weight lately.  Not a lot, but I am at my heaviest despite chasing two little boys around all the time.

 

Before discovering I was anemic this year, and before I started researching about my little ones problems, I was never concerned about my health at all.  I am a healthy 30 year old woman, who NEVER went to the doctor before going in and requesting to have my blood levels checked.  

 

Now I feel like I am starting to doubt everything.  I was told the heavy periods were the cause of the anemia, and that a small fibroid was the cause of the heavy bleeding.  Should I just stick with that and move on, or should I be considering underlying issues?  My hemoglobin is back up to almost normal now (after having two iron infusions).  Sorry for the long post. Thanks!

[cyclinglady]

Yep, heavy periods can be attributed to being hypothyroid. I have some fibroids too. Three years ago, I was having 30 day periods, I did not know that I was in my last year of perimenopause. Got my thyroid meds adjusted, but it was difficult because I was swinging between being hypo to hyper wich was driving my doc nuts. My GYN kept pushing for a hysterectomy but I got two other opinions and decided to ride it out. My hemoglobin was a 7 and I was getting out of breath. I also have Thaalseemia (a genetic anemia) so I am never really in range on hemoglobin.

Then I asked for my 50+ colonoscopy that all my friends were getting. The GI took one look at my file and told me he thought I had celiac disease. What? I had no tummy issues unless I consumed milk, eggs and garlic. I had those intolerances/allergies all my life. I was anemic because of the heavy periods and I have Thals. But, it had been four months since my last period and though my hemoglobin imposed, my ferritin levels did not. (Iron stores).

Blood test and biopsy confirmed that I had celiac disease.

Ask for a complete thyroid panel. Check your ferritin levels. Are they holding after the iron infusions or dropping? I was processing iron well -- just not storing it despite supplementation.

I guess I am saying that you need to be your own advocate!

[nvsmom]

I was probably the one who said the TSH should be near a 1.  That is generally true for those with a hypothyroid problem (meaning those with low Free T3 and free T4).  People without low hormones (euthroid) seem to often be okay with a higher TSH than those with problems... Keep in mind I'm not a doctor and this is just info I've researched and interpreted for myself.

 

I think I had hypothyroidism since my early 20's looking back on my "normal" TSH's (which were between 2 and 6.5). I too had heavy periods lasting over a week, but they had always been like that so I thought nothing of it.  Now that my thyroid is being treated, my period is much lighter (it's not crucial to find a bathroom every couple of hours for two days, day or night) and of shorter duration.

 

2.56 could be a little high for a TSH, or it could be fine.  Upper normal limits seem to be between 1.5 and 6, with 2-3 being a pretty common upper limit.  My lab uses 6, which I think is just idiotic but I digress... I would get more testing if possible, especially since thyroiditis is so common in celiacs.   I would ask for these:

• TSH - should be near that 1.  I am treated with T3 and T4 and usually have a TSH between 0.01 and 0.1; those treated with just T4 will have a higher TSH.  This lab is just a test of your pituitary's interpretaion of your thyroid hormone levels - it isn't very useful in my opinion.
• Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range.  The free T's are the most important tests. They will tell you the available hormone levels in your body; T4, T3, total T4, and total T3 will not give you as good of a picture.  Skip them and get the free T's run.  Even if these come back as a low normal, you should be suspicious.  For example: When my TSH was in the teens my FT3 was at about 10% of normal.  When my TSH was a 2.6, my FT3 was at about 15%.  I once took too many thyroid meds and my TSH was 0.22 but my FT3 was above the normal upper limit - I felt weird!  At my last check, my TSH was around 0.01 but my FT3 was at 70%, and I felt right.
• TPO Ab - should be low.  I am fairly sure I have hashimoto's but my TPO Ab was still barely in the normal range... Funnily enough it dropped when I went gluten-free.
• Reverse T3 - get this if your other hormones were off.  

You might as well check it out, and recheck it again if still concerned.  These labs can change quickly for no real reason.  I remember having that TSH of about 6.5 and then being retested two weeks later because my doctor was a tad concerned.  It came back at a normal 4 something so my doctor did nothing with it.  Sigh.  If you suspect something is wrong there, keep getting it checked every year.

 

Best wishes.

[Brit1612]

Thank you ladies!  You are so helpful.  I called my clinic to re-schedule my hematology follow up that I was supposed to be having in March.  I asked if I could just have everything re-checked instead of going in to talk to him again, and they said that would be fine.  So they ordered the CBC, ferratin level and something else.  I asked the nurse if there was anyway she could also go ahead and order a complete thyroid panel, and she said she would.  So, next week I go in to have the anemia and the thyroid checked.  Maybe this will give me a larger picture of what is or is not going on.  Thanks!

 

Also, one of you mentioned celiacs being more likely to have thyroid problems.....  I am not celiac, I am on the board because we think my son might be celiac.  (He is not biological, so no genetics being passed down - from us anyway)  Thanks!

[cyclinglady]

Guess what? I am not genetically related to my husband, but we both have celiac disease. Well, pretty sure. Hubby went gluten-free 14 years ago per the poor advice of his GP and my allergist. All his health problems resolved and we know when he gets glutened. At this point he refuses to do a gluten challenge. I can not blame him. His family, like mine, is riddled with autoimmune disorders. So, we are pretty sure he has celiac disease or at the very least he has Non-Celiac Gluten Intolerance (NCGI).

So, you can not rule out anything.

[Brit1612]

I understand what you are saying.  I know it is possible; at this time I don't have any reason to think I do.  Although I know the anemia can be a symptom in itself.  I guess with the heavy bleeding, it seems like the anemia is not really "unexplained".  That is what seems so hard about it, how do you know when you should say "test me for celiac".  Since my mom and I have learned so much about it while researching for my little one she jokingly said maybe we should test Dad for it (his stomach is always hurting with gas).  No other issues and as far as I know noone in our family has any autoimmune disorders, everyone is actually pretty healthy.  Thanks.

[bartfull]

It is recommended that all first degree relatives of a celiac should be tested.

[Brit1612]

It is recommended that all first degree relatives of a celiac should be tested.

 

My son is not biological to me.  So we do not have any members with celiac.  If he does have it, we will for sure have his brother tested (they are biological).