Just because lab tests point to hypothyroidism, can that be that person’s norm?

[bizzylizzy06]

* heads up in advance- sorry if it seems like there’s too much detail but I promise you need details to understand the full picture*

Some years past, drs would run CMP’s and every once in a while labs would show an elevated tsh levels. I could go months & months or a even as much as a year or so before my labs would show another elevated tsh level (never above 7)...

So this would happen on/off so we just decided to watch & keep our eyes on it...In the meantime, I would on/off again experience “typical” hypo symptoms but the “typical” symptoms related to hypothyroidism is also present in Multiple Sclerosis, Dysautonomia (specifically POTS with mast cell involvement) Basically, my entire autonomic nervous system’s wiring is screwed up & VERY catywompus & Immunoglobulinemia (the components of my immune system was almost non-existent).

I was diagnosed with MS & immunoglobulinemia in 2009 & dysautonomia in 2012. The MS & immunoglobulinemia treatment is the same & it’s an infusion of human donated immunoglobulins.  I’ve never taken any medicine or underwent any type of treatment for the dysautonomia. The treatment for that is to drink LOADS of water & increase salt intake...

But having multiple immune system malfunctions (including occasional elevated tsh readings) that all share near similar or identical symptoms, trying to pinpoint exactly what’s causing what & treating it appropriately gets not only tricky but hairy & sticky...it’s a winding & slippery slope my friends...

So, fast forward to Feb 2016 & I’m still not feeling well...AT ALL. I was still feeling the typical hypo symptoms but what was just not getting better was the incredible amount of fatigue. I just felt like GARBAGE...So I set out to see an endocrinologist & shoot down this tsh rabbit hole & see what we come up with...When he did the tests, it showed the following:
Tsh- 5.390 (0.450-4.500)
Ft3– 4.3 (2.0- 4.4)
FT4- 1.42 (0.82- 1.77)
TPO ab- 36 (0-34)
Thyroglobulin Ab- 7.3 (0.0- 0.9)

So he immediately started me on Armour Thyroid & also suspected I had adrenal fatigue (even though my serum cortisol was within normal limits) so he also started me out with oral hydrocortisone. (Hindsight is 20/20 cos had I known what I know now I would not have started 2 meds like this at once & would’ve never have even done the hydrocortisone without proper testing, but anywho...)

I’ll spare you the tedious details & try to make this long story shorter...ever since February 2016, I feel like I’m in a football game where all I’m doing is moving the ball (Armour Thyroid) to another yard line. Alls I want to do is just cross this ball over the goal line & that’s not happening. The higher I’ve gotten is 109mg & depression kicks in BAD & I have horrible signs of hyper. I back it down & feel better but he says looking at the numbers we need to add more. He just can’t seem to find the sweet spot & all I want is to feel better. I mean when it’s at 90, 109, my symptoms are so bad I typically can go without a shower for a week & not brush my teeth for a few days because I feel SOOOO fatigued & drained. Have heart palps, anxiety...the works.  

So, I’m backing down right now & I take my 90mg tablet, break it in half, take that & half the other half& take that.  So I’m thinking around 65-70mg and I’ve been doing this for about a week and I feel SOOOO much better!!!!

So my question is, with all the immune system disorders I have, can I have my labs show typical hypothyroidism but in reality, those numbers are MY normal numbers & screwing with it makes it worse or do you think I probably do have hypothyroidism & it’s just my dose has been too high?

Thank you SO MUCH for anyone just willing to read this & THANK YOU THANK YOU THANK YOU for anyone willing to respond back

[flyingfool]

I tend to agree with Barb135.

YOur FT4 and FT3 levels would suggest ample if not high thyroid levels.  The fact that your TSH is also high would suggest that something is definately amiss.  As it should be expected to be normal if not low to suppressed with your FT3 levels you have.  So clearly there is something broken with the Pituitary axis.

If the pituitary is not sensing and signaling correctly, this migh suggest that it is also sending out other improper homone signaling.

Question:  Have you in your past ever have had a head trauma injury, concussions etc.  This is often what can lead to pituitary problems.

Just my thought on the strange matter.

[Red_Star]

Your TPOAb is slightly elevated but TgAb is significantly higher.  Along with subclinical hypothyroidism (elevated TSH with free hormones still in range) the diagnosis points to early stage "subclinical" Hashimoto's thyroiditis.  I started thyroxine with a TSH of 6 and take 50 mcg daily.  Your original dose was too high based on labwork.

The following info is from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer.

"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.

Type 1 diabetes
Pernicious Anaemia
Addison's Disease
Vitiligo
Celiac Disease
Alopecia Areta
Systematic Lupus Erthematosus (SLE)
Rheumatoid Arthritis
Sjogren's Syndrome
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"

[bizzylizzy06]

Thanks Red for responding to my post!  Lemme ask you this...Do you concur with Barb & based on my labs I was more than likely in a hyper state vs hypo? And can you elaborate on what you mean by “early stage subclinical Hashimoto’s Thyroiditis?

[Red_Star]

Your TSH is rising in response to free T4 decreasing.  Free T3 is higher in the range as the body increases conversion of free T4 to free T3 in the early stages of Hashimoto's thyroiditis.  As time goes on and more damage is done the TSH rises further as free T4 keeps going down and free T3 levels start to go down as well.  So no I do not see labs indicating hyperthyroidism. The term subclinical hypothyroidism is used when only TSH is above the range. Generally speaking subclinical hypothyroidism can cause no symptoms to mild symptoms.

Labs need to be looked at along with symptoms. For example, I was VERY hyperthyroid with subclinical hypothyroid labs when Graves antibodies showed up (combined Graves and Hashimoto's antibodies is called Hashitoxicosis).  My thyroglobulin serum (not antibodies) was high due to hyperthyroidism however. I also has severe hypothyroid symptoms with subclinical hypothyroidism (have cellular inflammation also causing hypothyroid symptoms).

[Barb135]

I'm sorry, but your lab tests didn't necessarily point to hypothyroidism.  Only the TSH pointed to hypothyroidism and that's only an indicator.  It should be used to make the diagnosis.  

It looks like your endocrinologist, completely ignored your Free T4 and Free T3 results, which leaned toward the hyper side, not hypo.  Although we're all different, most of us feel best with Free T4 at about the mid-range point; yours was at 63% of range, which is on the hyper side  In addition, most of us do feel best with Free T3 in the upper half to upper third of range; however, yours was at 95% of range.  Your levels indicated that your thyroid was producing plenty of hormones and your conversion process was working just fine. It's shocking to see you were prescribed additional hormones when your body was already making adequate or higher, amounts.

In addition to that, a single morning cortisol blood test tells next to nothing.  Prescribing hydrocortisone based on a "normal" blood test boggles my mind.  Your endo should have had you do a 24 hr saliva test, which shows cortisol levels over a 24 hr period, not just what's in your blood at one given time.  

Your antibody levels are not very high and it's been shown that TPOab and TgAb can be present with other autoimmune conditions, including Graves Disease, MS, Pernicious Anemia, Rheumatoid Arthritis and others, so it's possible that the fact that you have MS is the reason you have those antibodies.  In your case, Graves may be a distinct possibility for you.  You should ask to have Thyroid Stimulating Immunoglobulin (TSI) test.  That's the definitive test for Graves and since you didn't really tell us exactly what hypo symptoms you have,  other than fatigue, perhaps you're looking the wrong direction.

It's important to note that fatigue (and others) is a hallmark of almost every autoimmune condition there is.  One of the main ones I'd have to wonder about is Pernicious Anemia, so I'll turn in an entirely different direction now.  

Have you ever had vitamin B-12 levels tested?  Vitamin B-12 deficiency can cause the most debilitating fatigue you can imagine and nothing, short of adequate vitamin B-12 can alleviate that fatigue.  There are a variety of causes for B-12 deficiency - one of the main ones is veganism or vegetarianism since B-12 is only derived from animal products such as meat, eggs, dairy, etc.  Although some foods might be "fortified" with B-12, there isn't enough or it's not the right form and we can't use it.  Pernicious Anemia is another reason for B-12 deficiency.  Pernicious Anemia is the inability to absorb vitamin B-12 via the gut.  For those of us with PA, regular injections are necessary, though some of us have found that a nasal spray or a spray that's absorbed into the mouth works, also.  

PA is an autoimmune condition and once we have one autoimmune condition, the chances of getting another are more likely...

I'd suggest, if you haven't already, that you have Ferritin, vitamin D,  B-12 and Folate levels tested.  Ferritin is the iron storage hormone; low iron can cause fatigue, as well as low vitamin B-12 can. In addition, high Ferritin can be a marker for inflammation so if Ferritin levels are really high that's an indication that body inflammation is high.  We, often, don't make the connection, but inflammation causes fatigue.  Folate goes hand in hand with vitamin B-12 low levels of one can cause low levels of the other.   Vitamin D is also necessary for energy production and proper synthesis of thyroid hormones - even if you have plenty, they may not be used properly.

There are certain types of vitamins with most of us should supplement, but I'll go into that once you let me know if you've had any of these things tested.

There are other nutrients we need for energy production - I'm learning this myself because I, too, suffer from never-ending fatigue and I'm also finding that I'm deficient in some of the things that are necessary for energy production.  

[Barb135]

Oops... I made a goof.  "It should be used to make the diagnosis."  should read:  It should NEVER be used to make the final diagnosis...

[bizzylizzy06]

Thanks Barb for your response. My symptoms all along have been extreme debilitating fatigue, muscle weakness/spasms, heart palpitations, increased heart rate, BAD anxiety (like I’m soooo sped up), bad edema in face, hands, legs & feet, cannot lose weight to save my life, extreme inflammation only in left eye causing everything to be blurry & muscle contraction so bad it causes my eye to be forced to be pulled to the outside aspect of the socket, sweating unnecessarily, high diastolic blood pressure (systolic is almost always ok), extremely dry skin & hair, brittle & cracked nails, hair falling out, much below average temp, shortness of breath, absolutely no appetite...

I do have chronic low vitamins b12 & d-lowest was 200’s on b12 & 16 on Vit d- take 1cc IM of b12 every other week & take (2) 50k u of D every week. Have had ferritin checked once back in feb 2016 & was normal. Hemoglobin & hematocrit have always been fine. I will say when I miss, skip or put more distance between my ivig infusions the TPO & thyroglobulin Ab start going up, up, up...

Ever since I’ve  been decreasing my Armour Thyroid, I’ve felt even more sped up. Does this make sense to you? I’ve been feeling like a Tasmanian Devil...worsening palps, shortness of breath...but when I check my heart rate it’s anywhere from low to normal...the other day it was 51 but my BP was 122/106

[bizzylizzy06]

Last time my ferritin level was checked (feb ‘16) it was 81 (15-150)

[bizzylizzy06]

And lastly, can you be experiencing DEBILITATING fatigue, have increased tsh and still be hyper &/or Graves?

[Barb135]

"can you be experiencing DEBILITATING fatigue, have increased TSH and still be hyper &/or Graves?"  As I noted, low B-12 can cause the most debilitating fatigue ever...I used to have to stop on my way home from work because I couldn't stay awake to drive.  How long have you been doing the B-12 injections and taking the mega doses of D?  Have you been tested since the original tests?  Do you know what your current levels of B-12 and vitamin D are?  If your levels aren't coming up, fatigue won't be alleviated.

Not all hyper is Graves Disease and I wasn't implying you have it; I was merely pointing out that TPOab and TgAb can be present in other autoimmune conditions.   TSH is affected by so many variables, other than thyroid hormones that it's hard to say why it was elevated; perhaps one of your other conditions affected it or perhaps it was due to high cortisol, etc.   You said your doctor suspected adrenal fatigue and adrenal issues should be treated before thyroid, if possible.  Since your thyroid hormones were more than adequate, other things should/could have been looked into first, such as proper adrenal testing.  Any doctor that treats by TSH leaves a lot to be desired.

I did a bit of research on the IVIG infusion. Side effects include, but aren't limited to: drowsiness/tiredness, weight gain, feeling short of breath, rapid breathing, flushing (warmth, redness, or tingly feeling), sudden numbness or weakness, loss of appetite, unusual bleeding (nose, mouth, vagina, or rectum), variations in heart rate and blood pressure.  

In your original post, you said "The higher I’ve gotten is 109mg & depression kicks in BAD & I have horrible signs of hyper. I back it down & feel better but he says looking at the numbers we need to add more"  What numbers is he talking about?  I'm assuming you've had additional labs since the ones you posted.  Can you please post some of the others so we can see where you've been?  Like maybe a set of which you say you felt better and where you say you feel horrible.  Be sure to tell us what dosage you were on with each set.  Just because the numbers are "right" doesn't mean it's right for you.  We had a member of the forum whose TSH stayed at about 18-20 all the time and their FT levels were in the low normal ranges, but they felt very good... Not everyone has to have thyroid levels in the top of the ranges and not everyone has to have low TSH.

There are some possibilities that need to be taken into consideration:  
1) you may be resistant to the thyroid hormones
2) you may be producing more Reverse T3, which is inactive and blocks Free T3 from entering cells, causing tissue hypothyroidism.
4) I read on one forum that IVIG, itself, can cause TSH levels to fluctuate, but I haven't been able to substantiate that.  If that's the case, some/many of your symptoms could be caused by the IVIG infusions and may have nothing to do with the elevated TSH.
5) you may have a "normally" higher TSH

If you can post other thyroid labs that might have been done while your medication was being adjusted it would be helpful.