Confused/frustrated about lab results - Still very fatigued.

[atalanta934]

Back again and could use some help.

I firmly believe I have central hypothyroidism though no doctor has ever said as much.  Just had a terrible experience with an endo who only looked at TSH and basically said I should get off all meds.  I know she is wrong and I'm not going back.  Went to my regular doc to get re-tested and see what's up.  I did have vitamin D and reverse T3 tested (and DHEA-S tested again) but don't have those results yet.

What I don't understand is why my T3 levels are back to where they were when I was only on 75 mg of erfa.  I know these things change a lot but I'm not sure what to do now.  Should I raise my desiccated dosage again?  

The B12 number is crazy high because I had been supplementing, hoping that was the issue.

Ongoing symptoms: fatigue.  Heavy limbs.  Cold temperature (like 96.5 before going to bed).  I know my numbers now are obvious that I'm not getting enough thyroid because T4 is below 50% of the range and T3 is well below the upper one-third.  I'm just not sure if it makes any difference anymore.  :(

I would love some help and some advice.  I will post the new numbers when I get them but for now, I'm just feeling lost and very frustrated.  

(One more thing...my cholesterol levels (all of them) are really low too.  I know many hormones come from cholesterol and have been trying to figure out where that fits in with all of this.)


Here are the list of test results.  (I never take meds before the blood draw.)

May 2015  no meds TSH 1.21 (0.20-4) FT4 11.3 (10-25)  FT3 3.3 (3.5-6.5) TPO 13 (0-34)
July 15 30 synthroid     TSH 1.1                 FT4 11.9          FT3 3.5
Sept. 2015, 75 mg erfa    TSH 0.05                 FT4 15.7           FT3 4.6
October 25, 2015 DHEA-S 2.4 (1.5-13)
Nov. 25 120 erfa           TSH<0.01         FT4 6.9           FT3 20.9
Jan 6 2016 120 erfa TSH   0.01         FT4 18.8           FT3 6 Ferritin 130 (13-375)
March 2 120 erfa           TSH0.01                 FT4 17.3           FT3 5
CORTISOL AM 454 (200 - 690 nmol/L)
Cortisol PM 212 ((60 - 450 nmol/L)
April 18 180 erfa          TSH <0.01          FT4 18.6           FT3 6.1
June 9 150 erfa                TSH <0.01          FT4 16.4         FT3 4.9

Latest Results:
June 23 150 erfa              TSH <0.01               FT4 14.8          FT3 4.7  Ferritin 103 (13-375)
VITAMIN B12 886  (155 - 700 pmol/L)              

[gimel]

On one site I was reading about cortisol, I found this:

"The most common signs of adrenal fatigue include: continued fatigue, exhaustion, trouble sleeping, trouble getting out of bed, depression, anxiety, sugar and/or salt cravings, weight gain and inability to lose weight, increased effort to do everyday tasks, decreased sex drive, decreased ability to handle stress, light headed when standing up, low body temperature, more prone to colds and flu and less tolerance to stress."

So, can you get a doctor to raise your thyroid med dosage and get back close to the FT4 and FT3 levels of that time?  Also can you arrange to get a diurnal saliva cortisol panel of 4 tests done.  If not by a doctor, then I suggest ZRT labs.  They will send a kit and you take the samples and return.  Cost is about $140.  I think we would know a lot more from those tests.  

[telus2]

This may be an unpopular question, but I would ask - do you really need to be taking thyroid hormones at all?  You only report one lab test (May 2015) as the basis for the hypothyroid diagnosis. But what if your thyroid was low because your cortisol (or something else) was out-of-whack; then if you resolved that, maybe your thyroid hormones would be normal. In fact some doctors advocate addressing adrenal issues before starting to take thyroid hormones.

Regarding saliva tests. Are you aware of the DUTCH test? It will give you a very comprehensive look at all your hormones. Cost is higher though, $400US in US. Easier than saliva test.

Seems to me like you need to look around for a new doctor if he/she is not helping...

[atalanta934]

Thanks so much Gimel. I do think it's a cortisol issue. I wake up tired and am really sluggish throughout the whole day. I feel more alert in the evening after 7. I sleep decently through the night but the fatigue doesn't seem to abate even after 9 hours. I definitely feel much more energized after I exercise. During the day, it feels like I am always ready to nap. Then I make myself go to bed at night (though fall asleep easily these days).

I have more mental during the day when I feel more energy but I'm generally tired and slogging through the whole day. I'd say activity energizes me though too much and I crash.

I am so grateful for your help. I feel like my doctor has no more to offer so I thank you in advance for your thoughts.

[gimel]

It is unfortunate your doctor did not understand about suppressed TSH not indicating hyperthyroidism unless there are accompanying hyper symptoms due to excessive levels of Free T4 and Free T3.  Your April results looked really good and I would not expect you to have hypo symptoms with that unless your RT3 was also high, or your cortisol was low or high, or ferritin was low.    Since you stated that you still had symptoms at those levels, then I have to suspect one of the above.  Your RT3 result was mid-range, and your ferritin is good, so I think we have to rule those out.  That leaves the possible issue with cortisol.  

Your cortisol test results were about mid-range.  I am not very familiar with serum (total) cortisol test results.  If it were saliva (free) cortisol I would want to see the morning result right at the top end of the range.   To help with this assessment, please describe your feeling in the morning when awakening.  Do you awake refreshed, or do you struggle to wake up and still feel tired?  How do you feel as the day goes on?  Do you tire, or do you feel better?  Does activity during the day energize you or tire you?  

[atalanta934]

Again, not sure where to post this.  Following up from my last lab results, we were waiting on my RT3 result.  I finally have it.  My RT3 was 18 (range is 8-25 ng/dl).   All of the other results are posted above.  Can anyone help me shed light on what's going on?  Ongoing symptoms include fatigue, cold hands, low temperature, and heavy limbs.  I have raised my erfa dosage but still feel the same.  Would love any advice.  Thank you in advance.

[flyingfool]

One other question.

Did you take your NDT dose before having the blood labs drawn?

Since NDT has a lot of T3 which ramps up in your bloodstream within hours, peaking in about 4 hours after taking it. If you take your dose before you test it can result in a false high reading.  

Your Dr freaking out about 3 greains of NDT is a bit of a red flag.  3 grains is not all that unusual at all.

My wife is on 3 grains of Armour and is also had just began taking Synthroid (T4) to help get her FT4 numbers up.  This is not at all that uncommon.

Your latest test show your Free T3 to only be 40% of the range. and your FT4 to be only 32% of the range.

I think with your symptoms and if you can correlate increased symptoms with the decrease in dosage AND your blood labs. I think it is a convincing case to go at least back to the 180 mg (3 grains) of NDT and possibly further increase if you were still symptomatic at the 180 grains.

I think the real reason for your Dr's "freak out" was due to your suppressed TSH.  Which is almost completely expected when on the amount of NDT you are on.  The fact that the Dr was not expecting the TSH to be suppressed is another red flag to me and maybe exploring another Dr would make sense.  But I would say first see if you can talk  your Dr in to going back to the 180 mg and re-test in a few weeks and report if you feel better.  If so then you know that you are on the right track.  If the Dr resists, I would recommend looking for a new Dr as the Dr will have proven they are more worried about the TSH number than about if you feel well or not!

[atalanta934]

Thanks so much flyingfool.  You are right, the doctor only really looked at TSH and then just scared me about the dosage and horrible side effects. She really didn't know anything about desiccated thyroid and just kept comparing it to her conversion chart for synthroid. Not the right Dr. for me, for certain.  I was still symptomatic at 180 but I looked at the numbers and thought they looked optimal so am thinking that thyroid isn't the full cause of my fatigue.  

I am slowly increasing my dosage and will see how I feel and what the new tests say.  I was just hoping that these latest results would offer more answers...not more questions!

To answer your other question, I always take my meds after the blood draw.  Learned that from reading these posts.  ;)

[atalanta934]

I finally got the results from my RT3 (the result got lost and needed to be tracked down).  My RT3 last month (when I had everything else tested) was 18 (range is 8-25 ng/dl).  Hopefully that sheds some more light on the overall picture.

I have since raised my desiccated thyroid dosage but it doesn't really seem to make much of a difference.  I don't know where else to look for answers.  If anyone has any ideas about this, I would love some help.  Thank you.

[Barb135]

Sorry...Did you type the folate, exactly, as it's typed on the lab report?  It looks like the > 45 would be the reference range and the 12 would be your result.  This means you're deficient and should be supplementing, but don't get just a synthetic folic acid; you need 5-MTHF, which is body ready folate.  I don't have the exact ingredient in front of me, but I'll post it for you tomorrow.

Your vitamin D looks good.  If you're supplementing, you could go to a maintenance dose.

Your DHEA-S is on the low side... I'm not well versed in that, but I do know that DHEA is precursor to testosterone.  I did take it for a while, but my testosterone levels tend to be on the high side, and I had some unwanted symptoms, so I stopped.

[atalanta934]

Thanks Barb.  Yes, I typed the folate result exactly as I got it.  I think the <45 is my result because the result/range set-up is consistent with all of my other results.  Weird that they didn't put a range though.  

[atalanta934]

I left this as a comment too but not sure which is the right spot.  

I got a few more results today.  Still missing Reverse T3.  The folate range (or lack thereof) seems strange. It did say  that folate deficiency could only be tested when fasting.  

- DHEA-S 3.5 (1.5 - 13.0 umol/L)
Vtiamin D (25-Hydroxy) 175 (80-200 nmol/L)
- Folate, Serum >45.4 >=12.1 nmol/L

I will post the RT3 when I get it.  Thank you.

[Barb135]

Quite often, there's more than one thing causing symptoms, but I agree with gimel; I'd like to see the rest of the blood test results before commenting further.

[atalanta934]

I got a few more results today.  Still missing Reverse T3.  I don't know what the folate number means.  

- DHEA-S 3.5 (1.5 - 13.0 umol/L)
Vtiamin D (25-Hydroxy) 175 (80-200 nmol/L)
- Folate, Serum >45.4 >=12.1 nmol/L

[gimel]

Before commenting further I'd like to see your additional test results when they  are available.  

[atalanta934]

Barb,
Thank you so much for all of this information.  I had really no idea what to do with that B12 result.  I wonder if that means I should keep supplementing like I was.  It didn't feel like it was making much of a difference but maybe I wasn't actually supplementing enough?  I wonder...
Yes, I am splitting my dose.  One half first thing in the morning and the other partway through the day.  I was thinking of playing around with trying it sublingually though I know the jury is out on that.
My doctor actually did test me for folate in this latest round.  That's one of the results I am waiting for so hopefully it will tell something.  
I'm just feeling so frustrated.  It feels like the thyroid isn't the whole answer but I have no clue what is.  
Thank you for your help.  I will post the next results when I get them.  

[atalanta934]

Thanks Gimel.
I reduced because the endo I saw really freaked me out.  She told me all sorts of horrible things (that I mostly know aren't true) about how I was on a dangerously high amount of the medication and I was at risk of all sorts of things.  She specifically said that if I got pregnant, the baby would have serious birth defects.  
I was worried that the levels were too high so I lowered the dosage.  I kept raising it thinking that I just needed to get a higher dose in order to stop feeling symptoms but didn't realize my numbers were so high.
Continued symptoms include: fatigue, heavy limbs, cold temperatures, brain fog.  The fatigue is really the biggest thing for me.  I am tired so much of the time.  The only thing that seems to give me energy is working out which I still do religiously and it makes me feel good (though sometimes it takes all my willpower to make myself do it).
With my latest results, I am thinking I should raise again but it still doesn't feel like it's the whole answer.
Any thoughts?  Thank you so much for your help.

[Barb135]

Not everyone has to have FT3 in the upper third of its range... yours is at 40% so I agree that it's probably a bit low.

It's not unusual for some on desiccated hormones to have low FT4, such as yours.  Many end up taking additional T4 medication, such as Synthroid, levothyroxine, Levoxyl, etc to bring the FT4 up to the mid range point.  Once FT4 is at the mid range point, you could see if your FT3 tracks up and if not, you could consider a higher dose of desiccated...

Another thing I'd have to wonder is how you're taking your desiccated medication... Are you taking it all at once in the morning or are you splitting it into 2 equal doses - one in the morning and one around mid day, which is what we recommend when one takes a med with T3, such as the desiccated hormones.

Your B-12 isn't "crazy high"... your lab is using an odd reference range!!  Most labs use a range of something like 200-900 or 200-1100.  My lab uses the 200-1100 and I, personally, find that I have to keep my level at/above the 1100 mark in order to keep symptoms of deficiency from being present.  Fatigue is major symptom of non-optimal B-12; however, with your B-12 where it is, you shouldn't be having symptoms of deficiency...

It might be worth your while to ask your doctor to test your folate level.  Folate deficiency can cause similar symptoms as B-12 deficiency.  

Vitamin D deficiency can also cause hypo-like symptoms, so it will be interesting to see what your vitamin D level is.

[gimel]

Your April 18 test results on 180 Erfa looked really good to me.  What symptoms, if any, did you have at that time and why was the dosage reduced?