if its not my thyriod, then what?! very confused/frustrated (suspect hashis)

[kellieann1793]

ive been having symptoms of hypo and hyper thyroid. BUT ALL MY TESTS ARE COMING BACK NORMAL! ugh! even the ultrasound on my thyroid is normal with the right slightly bigger than the left.

SYMPTOMS:
exhaustion (all day, energy later at night even if 10+ hrs sleep)
trouble sleeping
weakness
depression
loss ambition
anxiety!
mood swings
STRESS
night sweats
hives
ovarian cysts
always cold but sweat!
hyperhidrosis (massive sewatyness, hands and feet worse)
restless
easily aggravated/angered
irritable
sensitive to light
BRAIN FOG
memeroy probs
trouble concentrating
headaches
bloating
nausea
sugar and carb craving
low libido
DRY SKIN AND SCALP
brittle nails
fast heart beat
weight gain and weight loss unintentional
constipation and diarrhea
muscke weakness
body aches/ joint pain
h. pylori in past
food intolerance
right arm goes numb

TEST RESULTS:
TSH 2017: 0.926
TSH now: 1.59
reverse T3: 15.1
Thyroglobulin 21.2 ng/mL
TG Antibody Screen 19.8 IU/mL (this is high)
TPO ANTIBODY Microsomal Antibody <1.0 IU/mL
Free T4 1.1 ng/dL
Free T3 3.2 pg/mL
TSI 41 % Normal
TBI 1.6 U/L (high)
T3 150 ng/dL (2017)
T4 10.5 ug/dL (2017 high)
Vitamin B12 628 pg/mL
Vitamin D 25 Hydroxy 45.6 ng/mL

I KNOW something is wrong I just cant figure it out! I feel it in my soul that's its hashi but my results say otherwise.

[gimel]

I would argue that it is not being lazy, but realistic about treatment.  But that is just my opinion.  Please stay in touch and let us know how you are doing.

[gimel]

kellieann, I just felt the need to say to you that there are a number of supposed "cures" for Hashimoto's.  As far as I have been able to determine there is no scientific evidence supporting that possibility, only anecdotal information .  Also,  even if Hashi's could be put into remission, any prior damage to the thyroid gland cannot be recovered, requiring thyroid med to compensate for that loss of function.  

As for Marc Ryan, he is not a doctor as far as I can determine, but instead a Licensed Acupuncturist and Herbalist who has continued to do a lot of study apparently and decided to sell a book.    His plan includes diet as a foundation, herbs and supplements and, in some cases, acupuncture treatment.  He says he also tries to work on people’s thinking and default behavior because he finds that this is also really important for healing. "Mindset is absolutely critical when you are battling a chronic problem like Hashimoto’s."   And of course if it doesn't work it is always because some part was not done correctly by the patient.  To me, even it it did work  this procedure for diet, herbs, and supplements and sometimes acupuncture sounds more difficult than just taking my thyroid med every day.  Just my honest opinion.  

[kellieann1793]

well being that our bodies are intelligent and heal themselves and things don't just happen id like to get to the root cause of my disease and heal through diet and lifestyle changes and not be lazy and only rely on a med that only covers up symptoms.

[kellieann1793]

i got an update from my doc. he said even though mild positive but still positive thyriod autoantibodies which means i have autoimmune thyriod disease although it wasnt very "active" at the time of testing.he want to do a trail of armour and see how it goes. i asked if it was hashimotos and he hasnt gotten back yet but now im assuming it is and treating as such. i just got a book "how to heal hashimotos" buy a doctor mark ryan and its very good and informative so far i feel its exactly what im going through. i wanted to let all know. :)

[Jenn1302]

Your TG is high. As far as I know this means you have Hashimoto's but I'm not a doctor. You also have detectable TSI levels (most healthy people don't!). Your thyroid could be swinging between hyper and hypo.

Like you, I have Hashimoto's antibodies and measurable TSI levels. My symptoms were similar to yours when my thyroid problems started and my thyroid levels were constantly fluctuating.

Based on your tests your T4 was high in 2017. Did your doctor not treat you for that?

[kellieann1793]

nope not treated at all! I'm just going by books and what I read online as far as how I'm dealing with it. its been weeks and I haven't heard back from my doc at all. Do you know what TSI is? I'm really not sure of anything. I figures since my antibodies were low that I didn't have hasis (even tho I think I do!) how long have you been going through this?

[Jenn1302]

TSI = Thyroid Stimulating Immunoglobulin. Very high levels (over 130%) mean that you have Graves Disease. Healthy people tend to have undetectable levels of TSI. It seems like we're stuck somewhere in between (mine is 44%).

Your Tg is high (you have the H flag next to it). This antibody is usually associated with Hashimoto's. My thyroid levels tend to be less hypo when this antibody is in remission (but my TPO is always positive).

Your T4 is also high (based on the H flag next to it). It's kind of strange that your doctor didn't say anything. Doctors tend to to treat abnormal test results. You definitely want to get this looked at. If your doctor says it's nothing get a second opinion. Unlike many of us your thyroid tests are actually out of range, which means that doctors are less likely to dismiss your symptoms.

[kellieann1793]

i just saw this now. thank you for the info. now im sure its hashimotos. i got an update from my doc. he said even though mild positive but still positive thyriod autoantibodies which means i have autoimmune thyriod disease although it wasnt very "active" at the time of testing.he want to do a trail of armour and see how it goes. i asked if it was hashimotos and he hasnt gotten back yet but now im assuming it is and treating as such. i just got a book "how to heal hashimotos" buy a doctor mark ryan and its very good and informative so far i feel its exactly what im going through.

[Jenn1302]

You're really lucky.  Your doctor is putting you on thyroid medication. That's amazing. I know it's just a trial but it's a trial that could possibly help you! Many of us (myself included) have to live with the horrible symptoms and wait for years (sometimes even decades) until our doctors finally decide we're sick enough try thyroid hormones.

[Jenn1302]

Keep us posted

[gimel]

My recommendation is to forget TSH, and don't allow the doctor to make decisions about diagnosis and treatment based on TSH.  As mentioned TSH is affected by so many things that the only time it is useful for diagnosis is for an untreated hypothyroid patient,  when TSH is at extreme  values such as being suppressed below range, along with hyper symptoms indicating the possibility of Graves' , or when it is extremely high, with attendant hypo symptoms,  indicating the possibility of  Hashi's.    Either condition is then confirmed with further tests.  TSH results within the range, have almost no value for diagnosis and treatment for a thyroid patient.   All this is confirmed with extensive scientific evidence included in the full paper linked in the overview I mentioned that is in my Journal.  

If your Endo will do the recommended tests and diagnose and treat clinically, then he will be somewhat unique within the Endo group.  Most seem to have the "Immaculate TSH Belief" and erroneously only pay attention to TSH for diagnosis and treatment. If they go beyond TSH they revert to "Reference Range Endocrinology", by which they will tell you that  a thyroid test that falls anywhere within the range is adequate.  That is also very wrong.   Just logically, how can a FT4 test at the lower limit of the range be considered as good as a FT4 test result at the high limit of the range, which is about 90% higher than the lower limit.     And that doesn't even take into account the inter-individual differences in FT4 and FT3 requirements needed for a person to feel well.   Clinical diagnosis and treatment, as described above,  is what every hypothyroid patient needs.  

Assuming  that you will be discussing all this with your doctor, please let us know how it goes and if we can be of further help.  

[kellieann1793]

thank you. I'm still very confused as it could be anything. even just my HPA axis or hormones. ill post back once ive spken with my doc and know more

[gimel]

As mentioned you have lots of symptoms that are frequently related to being hypothyroid.   In addition, in the words of an excellent thyroid doctor ,"The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."    Your FT4 is only at 25% of its range, and your FT3 is higher in its range, at 50%, so I'd say that even though your FT4 and FT3 levels fall within range, they fit this description for causing hypothyroid symptoms.

Many doctors would argue with this because they consider any test results that fall within range cannot be considered as hypothyroid.   They fail to understand what the ranges represent.    Unfortunately,  the ranges for FT4 (and FT3) are not well standardized among different test machine manufacturers, generally validated, or based on large databases of healthy adults with no thyroid pathology.   Instead those ranges are locally established from test data available at any given laboratory, excluding only data from patients assumed to have thyroid issues based on the flawed TSH range.  Clinically hypothyroid patients with TSH within the reference range, people with hidden pathologies such as undiagnosed central hypothyroidism or autoimmune disease, and patients taking thyroid medication can all be included in the database.   This results in ranges that are too broad to be functional for everyone, and that are skewed to the low end.  

Further, each person has different setpoints for thyroid levels, at which they feel best.  So trying to identify abnormality by comparing individual FT4/FT3 test results to reference ranges based on a group of patients can also be misleading.  

A good thyroid doctor will diagnose a potential hypothyroid patient clinically, by evaluating for symptoms that occur more frequently with hypothyroidism.  These are then followed by biochemical testing for  FT4, FT3, Reverse T3, TSH, cortisol,  Vitamin D, B12 and ferritin.    Every tentative diagnosis of hypothyroidism is a probability theory that must be evaluated with a therapeutic trial of thyroid med adequate to raise the FT4 and FT3 levels into the upper half of their ranges.  If symptoms ease, then the theory is accepted and FT4/FT3 levels should be increased as needed to relieve hypo symptoms, without increasing to the point of creating hyper symptoms.  .  Except at extreme values, TSH  has little value as a diagnostic for thyroid status, and should never be used to determine thyroid med dosage adequacy.  

Looking at the rest of your test results, I see that the TG ab test indicated an autoimmune condition, which can be either Graves' or  Hashimoto's.  Your TSI for Graves' was negative, so that leaves Hashi's,  yet your TSH was not consistent with that, so it could be an indication of early Hashi's.   What is the TBI test for ?   Your Reverse T3 was good.  Vitamin D should be at lest 50.  B12 should be in the upper end of its range.  You should also be tested for cortisol and ferritin.  Both are very important for a hypothyroid patient.   If you want to confirm what I have said, please click on my name and then scroll down to my Journal and read the one page overview of a paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective.  

So you need to start on thyroid  med and get both your FT4 and FT3 into the upper half of their ranges, and adjusted from there as needed to relieve hypo symptoms.  You need to supplement as needed to get Vitamin D  and B12 optimal.  You also need to test for cortisol.  Your also need to test for ferritin and supplement as needed to optimize to at least 100.  Do you have a doctor that will test, diagnose, and treat clinically, as described?  If not then you will need to find one that will do so.   That does not necessitate an Endo, just a good thyroid doctor.  If you are interested, please give us your location and perhaps we can suggest doctors that have been recommended by other thyroid patients.  

[kellieann1793]

My ferritin was tested in 2016 and was 65 ng/ml. Never got the cortisol tested. I haven’t spoken to my Endo yet as he’s been on vacation and never responded when the tests came in before he left. I hope he will treat as described I’ve only seen him once and I told him I suspected hashimotos so he seems to know his stuff ( keeping my fingers crossed) they did say they treat symptoms over lab tests. the TBI test was apart of the TSH receptor an with the TSI so I’m unsure. I googled TBI and it said traumatic brain injury which has been associated with autoimmune according to what I read on google. All the tests confuse me. My TSH has fluctuated over the years but still within normal range.

[Red_Star]

"Anti TSH-receptor antibodies (TBIAb) were measured by a radioreceptor assay in 277 patients with Graves' disease, 101 with autoimmune thyroiditis, 43 with autonomous adenoma, 15 with subacute thyroiditis, 15 with euthyroid ophthalmopathy, 155 with euthyroid multinodular goiter, 10 with amiodarone-induced hyperthyroidism and 2 with tumoral TSH hypersecretion. TBIAb were present at high titers in 74% of patients with untreated or relapsed Graves' disease and, at lower titers, in only 10% of patients who had recovered from Graves' disease, in 8% of patients with autoimmune thyroiditis and in 4% of patients with euthyroid goiter. TBIAb were absent in normal subjects as well as in the other groups studied. These findings suggest that TBIAb represent a specific marker of Graves' disease, particularly of the untreated form. Their presence in non Graves' patients may be considered expression of inactive or inhibiting antibodies."

Clinical role of TSH binding inhibiting antibodies (TBIAb) assay. The Journal of nuclear medicine and allied sciences 34(1):29-33 · January 1990

[gimel]

The most important consideration should always be symptoms.  You have many of those that are frequently related to hypothyroidism, plus a few others that need further evaluation.  After symptoms, biochemical tests are useful to help confirm what the symptoms show.  Since lab results and calculated reference ranges can vary from lab to lab, we need to know the reference ranges shown on the lab report for the thyroid related tests.

[kellieann1793]

here are the lab ranges for each test: () indicate lab ranges

TSH RECEPTOR AB :
TSI 41 % Normal ( <150 % Normal )
TBI 1.6 U/L (<1.0 U/L) High

Free T3 3.2 pg/mL  (2.3 - 4.1 pg/mL )
Free T4 1.1 ng/dL  (0.9 - 1.7 ng/dL )
TPO Microsomal Antibody <1.0 IU/mL  (<5.6 IU/mL)
Thyroglobulin 21.2 ng/mL  (1.6 - 59.9 ng/mL)
TG Antibody Screen 19.8 IU/mL  (<14.4 IU/mL) H
TSH 1.590 uU/mL  (0.400 - 5.500 uU/mL )
Reverse T3 15.1 ng/dL  (9.0 - 27.0 ng/dL)
Vitamin B12 628 pg/mL  (232 - 1,245 pg/mL)
Vitamin D 25 Hydroxy 45.6 ng/mL  (31.0 - 80.0 ng/mL)
T4 10.5 ug/dL  (5.5 - 10.2 ug/dL) H  
T3 150 ng/dL  (79 - 165 ng/dL )

I assume these are for lupas all neg
Anti-SSA <0.2 AI (<1.0 AI)
NEGATIVE
Negative: 0.9 AI

Anti-SSB <0.2 AI (<1.0 AI )
NEGATIVE
Negative: 0.9 AI

and I was tested for lyme all neg except p41 which I don't know what that is

[Red_Star]

Labs can get messed up with Hashitoxicosis (both Hashimoto's thyroiditis and Graves antibodies). My labs were showing subclinical hypothyroid when I very hyperthyroid! Some people mention completely normal labs while swinging between hyper and hypo symptoms.

[kellieann1793]

its so frustrating. I want to do something but keep obsessing over what it could be and what to do about it

[Red_Star]

Treatment for Hashitoxicosis is block and replace therapy. Anti thyroid medication will prevent you from becoming hyperthyroid and then also taking  thyroid medication to stop you from becoming hypothyroid.

[Red_Star]

I should add you can have hyper symptoms on and off from excess hormone released due to the attack from Hashimoto's thyroiditis (also called Hashitoxicosis). No Graves antibodies in this case. The hyperthyroid symptoms are milder than if you have Graves antibodies.