Suspect thyroid issue, but regular panels never indicate problem

[Stacy500]

I am hoping someone can advise me on what tests I should request when I see my gynocologist on Thursday (April 22).  

The following is a list of symptoms and tests I have had over the past 10 months:  I was last tested for my thyroid in July of last year, when I went through a period of intense hair shedding, including the lower part of my eyebrow only on the left side.  The tests run by a dermatologist (CBC, Thyroid panel of T3 and T4 free, and lupus) came back negative, or within acceptable ranges.  

Since then, I have noticed the following symptoms:  (1) occassionally (not every month) I have a light (not soaking) night sweat around the neck/collar when my period is about to start (which I suspect is the shift in hormones); (2) my periods have gotten much lighter for the past three months (I am used to heavy bleeding with clots and pain); (3) my hands and feet are always cold and they turn blue (and my forearms get a reddish mottling when I am chilled); (4) I had an early (5 week) miscarriage in early October; (5) my last period (this month) was seven days late and I had similar symptoms to the previous preganancy (a home pregnancy test was faintly positive; blood test was negative and then I got my period - a light period).

When I had the miscarriage, my gynocologist recommended the day 3 estradiol test.  The test was slightly elevated (9).  The test was repeated the next month and was within acceptable range (5).  This month, the day 3 test was again elevated (10).  My doctor thinks that my ovaries may be in the early stages of failing.

QUESTION:  Could this be a thyroid issue?  I ask because on my mother's side (both paternal and maternal) all of the women have thyroid issues and the men, too.  Additionally, my sister had trouble getting pregnant and was diagnosed with PCOS and Hashimoto's.  If her thyroid is not under control, she experiences low progesterone and borderline gestational diabetes when pregnant.  My mother and her two sisters both are on medicine for hypothryoid.  At 36, I am the only female in my family not to be on thryoid medication.  Is there another thyroid test that I should look into getting beyond the standard thyroid panel?      

Finally, I should also mention that five years ago I was diagnosed with Celiac Disease, which is under control.  When I went to my gastroenterologiest, she would periodically test my thyroid (not the T3/T4 free) and it was always within acceptable ranges.      

Any advice would be appreciated.  Thank you for reading this lengthy description

[Stacy500]

Thanks, again, gimel.  Will keep this in mind as I proceed here.  

[gimel]

I strongly suggest that you convince the doctor to test for free T3, not total T3, since only the free (unbound by protein) portion is active.  In fact, I would insist on FT3 testing.  It tells a lot more about your thyroid status.  With advancements in testing for the Frees, total T3 and total T4 tests have become somewhat obsolete and not very useful any more.  There is absolutely no good reason to refuse to test for FT3.  After all, you are the customer.

Notice there was a little discrepancy between what the nurse said would be tested (FT3/FT4) and what the doctor actually ordered.  When you get the okay for FT3 test, I would even go so far as to double check in the lab when blood is being drawn to make sure they know it is FT3, not total T3.  You'd be amazed how many times they routinely send it off as total T3, and you have to go through the aggravation again.

[Stacy500]

MANmom, thanks for the encouragement in checking out my familial history of thyroid issues.

gimel, the doctor has ordered the T3, Total; T4, Unbound (Free); TSH; Anti-thyroglobulin; and Anti-(TPO, thyroid peroxidase) tests.  I am off to get blood drawn next and understand I won't get my test results until my May 4th follow-up appointment.  As a side note, he felt my thyroid, and now the right side is sore again.  Every once and a while I get a tight, sore feeling on the right of my thryoid, especially if I rub it.  Personally, I feel a little bump on that side.  The doctor kept concetrating on that side while he palpitated the thyroid, but did not say anything at that point.  Guess I am in a waiting pattern now.

[MANmom]

Stacy, just in my family, my dad, two of my brothers and I have hashimotos.  I had thyroid cancer, my sister had the same, and another sister has graves and nodules that are being watched.  Out of my eight siblings, 5 of us have thyroid trouble...if you ask me, it does run in families.

[Stacy500]

gimel, thanks.  That really does read like my symptoms.  FYI, I cancelled my gynocologist appointment (despite him being an endocrinologist who specializes in reproduction.  I will note here that despite knowing my family history of thyroid problems my gynocologist has never tested me for thyroid issues, even when I raised it...he sent me to a dermatologist) and scheduled an endocrinologist appointment for tomorrow.  

As for how I picked the endocrinologist, I spoke with the nurse over the phone first.  One of her first questions was whether I had ever had an ultrasound of my thyroid (to which I responded no).  I did ask her if the doctor will run a comprehensive thyroid test (free T3/T4 included, as well as testing for antibodies).  Since she said, yes, I thought I would schedule the appointment and at least talk in detail about my concerns with the doctor tomorrow.  I will definitely probe the doctor with respect to his medicating philosophy.  Thanks for the tip.  

I really do appreciate your assistance here.  You appear to be very knowlegeable on this topic and most likely assist an number of people here.  

Will circle back with details as they are forthcoming from my new doctor experience.

[gimel]

I was doing some reading to fill in the gaps in my knowledge of some of the things you mentioned and I ran across a link that I thought you might find interesting.
__________________________________________________
I have a theory I thought I'd post, and get your reactions. One of the main problems Gilberts sufferers seem to have is that doctors don't believe it causes any problems. I discovered I had Gilberts over 18 months ago, and I am still suffering badly - but not with Gilberts, rather chronic fatigue, or rather hypothyroidism and hypoadrenalism. In standard blood tests, Gilberts shows up, and is often casually dismissed by the doctor as a benign condition. Yet many of us suffer and cannot understand why Gilberts is ignored by the medical profession. I personally am devastated by this - I am a 39 year old female, struggling to bring up 3 small children with severe chronic fatigue, and have been dismissed as just having Gilberts. After much research, I understand Gilberts to be due to an enzyme shortage in the phase 2 pathway, which operates sluggishly. I believe this sluggishness also affects other processes that are performed in the phase 2 pathway, including the conversion of the thryoid hormones T4 to T3. Low thyroid levels will affect the phase 2 pathway efficacy, as well as the adrenals. Anecdotal evidence from these boards leads me to believe that many Gilberts people suffer hypothyroidism, ie, the rate of T4 to T3 conversion is slow, and so we are cold and fatigued, have anxiety, possible hypoadrenalism (don't produce enough cortisol) and hypoglycaemia. Sound familiar to anyone? Heavy metals also burden the phase 2 pathway (got any mercury fillings? they won't help your Gilberts or your thyroid).Some of us may end up on thyroid treatment (Synthroid, Euthyrox etc etc) but this does not solve the problem. As most of us have problems converting T4 to T3, giving us T4 alone will not help us much, and will possibly cause us to become hyper on a low dose. This happened to me at Christmas with a total adrenal crash. I believe a combination of T4 / T3 like Armour or Thyroid S will be much more helpful. I am about to start this treatment myself, and I will be reporting back on progress.

My theory is that so-called Gilberts symptoms - cold, fatigue, brain fog, anxiety, digestive problems, feeling lousy in the mornings, better in the evenings, headaches - are actually undiagnosed, and untreated thyroid problems. And we can try all we like to improve our liver function with juicing, milk thistle, liver diet, etc etc, and doubtless these will do no harm, but the real issue here may be hypothyroidism that may not show up on standard blood tests. Low thyroid levels affect the efficacy of the phase 2 pathway of the liver, and thus the bilirubin levels in GS sufferers.
__________________________________________


In looking at your lab test data, other than TSH the tests are somewhat obsolete and don't really reveal much.  From your symptoms, I think it is likely that you are hypo, but at your Endo appointment you need to insist on being tested for free T3 and free T4, along with TSH and the thyroid antibodies tests, TPO ab and TG ab.  If you will get that done and post the results and their reference ranges, then members can provide the best response.  

How did you pick the Endo?  Are you sure he/she will be a good thyroid doctor?  If not, you may be wasting valuable time.  Before making an appointment I have started calling in advance and telling them I am looking for a good thyroid doctor and asking if I could ask one of the nurses a few questions first.  Then ask if the doctor is willing to treat a thyroid patient by testing and adjusting free T3 and free T4 levels with whatever medication is necessary to relieve symptoms, without being constrained by resultant TSH levels.  If the answer is yes, then ask if the doctor is willing to prescribe meds other than T4 types.  If the answer to either is no, then you may as well keep looking.

[Stacy500]

With respect to the August test above, the dermatologist also ran a CBC and I am not sure whether mentioning that I had one abnormal reading - elevated total bilirubin - is pertinent to a thryoid discussion here.  Just in case, here are the numbers from the Quest Lab report:

Total Bilirubin:  1.8 MG/DL (range:  0.2 - 1.2)
AST:  14 U/L (range: 10 - 20)
ALT:  10 U/L (range:  6-40)

The dermatologist stated that since my AST/ALT results were normal, he concluded I had Gilbert's Syndrome.  

I am scheduling an appointment with an endocrinologist to follow-up on the thyroid symptoms.  Let me know if either of the above postings with my test results sheds any additional light on my suspect thyroid issues.  Much appreciated!

P.S.  I had a typo on the T3 Uptake above.  Should read:  29.7%.  :-)

[Stacy500]

Just wanted to add my August thyroid test results here, now that I have a copy of the results in front of me.  Feel free to comment and further direct me here, as I try to figure out whether I may have a thyroid issue:

T4, Total:  7.7 UG/DL (range:  4.5 - 12.5)
T3 Uptake:  29/7% (range:  27.8 - 40.7)
T4, Free, Calculated:  2.3 UG/DL (range:  1.6 - 3.7)
TSH:  1.53 mIU/L (range:  0.40 - 4.50)

Testing Lab:  Quest Diagnostics

gimel, thank you for the additional read and insight.  Very helpful!

[gimel]

I forgot to mention that one of the reasons for not relying on TSH is that studies have shown that TSH doesn't correlate very well at all with hypo symptoms.  As I said above, FT3 correlates best.

Frequently we hear from members that symptom relief required that their FT3 was adjusted into the upper part of its range and FT4 was adjusted to at least the midpoint of its range.  

For your next doctor appointment I think you will also find this to be a good reference.

http://www.hormonerestoration.com/Thyroid.html

[Stacy500]

Thank you, gimel.  I will print this off and memorize it before my doctor's appointment.  

I realized after I posted the above, I had neglected to mention other symptoms, such as waking up in the middle of the night for no reason (restless sleep) and feeling chronically tired (which is not ususal for me) for the past 3 months.  I hope it is my thyroid and I can begin to move forward with treatment that will alleviate these "pesky" symptoms.  

[gimel]

Based on what you have mentioned, you definitely should go for thyroid testing.  I imagine the previous testing was only for TSH, and probably used the old reference range.  Over 7 years ago the old range of .5 - 5.0 was recommended by the AACE to be revised to .3 - 3.0.

For the future you should also be aware that TSH is a pituitary hormone that is inadequate as a diagnostic for thyroid problems.  At best it is only an indicator, to be considered along with more important indicators, which are symptoms and the levels of the actual, biologically active thyroid hormones, free T3 and free T4 (FT3 and FT4, not total T3 and total T4).  FT3 is four times as active as FT4 and FT3 correlates best with hypo symptoms, such as the ones you've mentioned.

So when you go back for testing, insist that they test for FT3 and FT4, along with TSH, and don't take no for an answer.  In addition it would be a good idea to test for thyroid antibodies, by testing for TPO ab and TG ab.  This will tell you if you have Hashimoto's.

Another thing I strongly suggest is to find out if your doctor is willing to treat your symptoms by testing and adjusting FT3 and FT4 levels, with whatever type of medication is required to alleviate symptoms, without being constrained by resultant TSH levels.  If not, then you may as well start looking for a good thyroid doctor.