Hypothyroidism - hoping for answers

[britneyshea]

Hi,

My name is Britney. I have had hypothyroidism for about 7 years now - diagnosed when I was in high school. My doctor hasn't proved to be very helpful so here I am seeking answers from people who have gone through what I have. My issue is that despite the 100mcg of levothyroxine I take - I still feel exhausted. It is a chore to do just about anything and when I do, the amount of tiredness I feel is overwhelming. My family and friends think I am making it all up and it is something that I can make my mind up to not be. My doctor says my levels are fine and to continue with the current dose of medicine but I feel everything but fine. Along with the tiredness, I am depressed. I do what is absolutely necessary (work) then come home and fall asleep - QUICK. I also have experienced the weight gain - about 50 pounds in the past couple years. I have changed my diet and have exercised but it still does not come off. I also have the thinning hair (sometimes it falls out) and the dry skin. I am looking here for some suggestions on what to do.

My levels:
2/3/12 3/30/12 5/15/12 7/26/12 2/5/13 11/1/13 1/8/14
3.860 2.370 3.450 2.350 2.610 3.030 3.210

That is the most recent information I have and I do not see any T3 or T4 levels on my online information my doctor provides.

Some insight would be absolutely wonderful and greatly appreciated.

[goolarra]

Be sure to ask for FREE T3 and FREE T4.  There are two other tests, total T3 and total T4.  These are not nearly as useful, but they are the default if FREE isn't specified.

Online labs work without a doctor's order.  You decide which tests you want to have and pay them (insurance does not cover self-ordered tests).  They send you to a local lab for the draw, and the results are sent directly to you.  From what I've heard, people find them very efficient and prompt.

I personally know people who have used healthcheckusa with excellent results, but I've also heard that there are less expensive alternatives (whose names escape me at the moment).  If you google, you'll have plenty to choose from.  

[britneyshea]

Thank you for that information...I will request T3 and T4 testing at my next appointment. If not, onto a different doctor it is! It is so very difficult to find someone who will listen and take action - and unfortunately I haven't been the best advocate for my own health. As far as the online labs, how does that work?

[goolarra]

I agree completely with ahmee...it's absolutely vital that you get FT3 and FT4 tested.  TSH is very volatile and can vary a lot just by the time of day the blood is drawn.  If your doctor is reluctant to test FT3 and FT4, you might also consider getting these tests done at an online lab and bringing him the results.  Also, we can help you interpret them.  

You sound undermedicated...don't put up with that...

[ahmee]

From the sound of it, you are still very hypo. If your doctor is just testing TSH, s/he will keep you ill for a long time to come. You absolutely need to find a doctor who will test Free T3 and Free T4. I am guessing your FT3&FT4 levels are not high enough for your needs. Just being "in range" is usually not enough for these tests-- patient experience shows that most folks need to be in the upper half of range for symptoms to be relieved. This could mean raising the dose of your current medication and potentially adding in some T3 meds (name brand cytomel). Most of all, do not resign yourself to suffering! Talk to your doctor about continuing symptoms, request FT3 & FT4 testing, and if your doctor does not listen or brushes off your symptoms as normal, find another doctor! Unfortunately, not all doctors are well-versed in thyroid treatment.

P.S. With adequate treatment you may find your TSH will become suppressed below "normal" range-- especially if you add in T3 or even up your dose of T4 (levothyroxine). This is why TSH is useless as anything other than an initial diagnostic tool. At this point you need to see actual hormone levels (FT3 & FT4) to understand what is going on.

[Red_Star]

"When we have a normal population data for serum TSH we need to log-tranform the values in order to get the familiar bell-shaped curve that defines a normal distribution. The normal range is usually quoted as about 0.4 - 4mU/L (millunits per litre), but the log transformation introduces one peculiarity - it moves the mean and median values for TSH down towards the lower end of the range - at about 1mU/L.

The upwards tail between 2 and 4mU/L is rather thin, and there is room for doubt as to whether values in this range are actually normal or not. The important point is that when normalizing TSH by treatment, our target (the mean and median) TSH value should generally be around 1mU/L. If we simply aim for TSH in the middle of the range, some individuals will remain under-treated."

- Prof Jim Stockigt. "Subclinical hypothyroidism or Mild thyroid failure: How important is early diagnosis and what treatment is optimal? Sigma Pharmaceuticals, March 2001. [Thyroid Australia, Thyroid flyer. 2:3, July 2001.]

When I started my T4 medication I aimed for a TSH of 1mU/L. This was before even reading the above info. My sister's energy is off the charts and her TSH is 0.9mU/L. But I have more issues than thyroid affecting my energy levels.  But anyway, in my case at least, when my TSH behaves so does my free T4 and free T3. For some that isn't the case and an optimal TSH still could mean a not so optimal thyroid hormone level.