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Thyroid Disorders Community
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Avatar universal

Thyroid Issue or keep researching?

I am jumping through hoops trying to determine the cause of my fatigue.  The more I research I would almost put money on it that I am hypo.  Fatigue is not even the word to describe it, there are no words.  I feel so out of my body.  I cannot focus, can barely drive myself home from work, zero libido, hair falling out..ect Here are some of the test results, I have had 50 + done but thought these were relevant. Aparently total t3 is the only test available.

TSH 1.49 0.10 - 5.50 uIU/mL
TPO AB <10 <=35 IU/mL
Thyroglobulin 9.1 0.0 - 55.0 ng/mL
Thyroglobulin AB <20.0 <=20.0 IU/mL
T3, Total 67 50 - 170 ng/dL
CK 604 <=200 U/L
TPO AB <10 <=35 IU/mL
Free T4 0.8 0.8 - 1.7 ng/dL

67 Responses
Avatar universal
"normal" means just about absolutely nothing.

This is because the "normal" ranges are established poorly or just plain incorectly.

the "normal" ranges are established by taking the data of all the people in the area of the lab that takes the tests. Then they throw out the Highest 2.5% and the lowest 2.5% and call the remaining 95% as "normal".

The problem with that is the only people likely to get tested for Free T4 and Free T3 are people that are likely showing signs of being at least suspected of having INCORRECT thyroid levels.

So the population of the data they are using are LIKELY people who have ABNORMAL thyroid.  So the ranges are simply messed up.

As has been found here over and over again that most people who have symptoms need to have their ranges well up into the range. That is 50% or higher of the range in order to feel well.

Same is true with something line B-12.  Which has a tremendously wide range.  Many people need to be way up towards the top end of the range to feel well.  And they were told by their Dr that simply because they were near the bottom end but still within the range that they were "normal".  What a load of dung!

You will find that you need to be your own best advocate in this journey you are on. You cannot just accept the Dr telling you the tests were normal.  Ask for a copy of the tests,  In the USA they are leagally required to give them to you if you ask for them.  I would recommend that you do that and keep a record of the tests. Write down on them how you are feeling and what medications you are taking and at what dosages.

This medical record associating symptoms and dosages with lab results is absolutely invaluable.  Especially if you have to find a new Dr due to a retirement or moving out of the area etc.

The rule of thumb that has proven to work for many people here is to have BOTH of the following.

1) Free T4 to be in the MIDDLE of the range (50%) or slightly higher.

AND- that means in addition to

2) Free T3 to be in the UPPER 1/3 (66.7%) of the range

Notice that these are both WELL up into the range and not simply "somewhere" within the range.

This is a rule of thumb and each person feels well at a different level.  It is best to start slow and low dosages and work up to a point where you feel well.

But that all assumes you can convince a Dr to at least start you out on medication in the first place.
Avatar universal
Did you get some other vitamin levels as well tested?

In particular:

Vit D3
Vit B-12
Iron
Ferritin

These also all contribute to fatigue.

Your tests show you do NOT have Hashimoto's.

Your Free T4 is at the VERY bottom of the range which many if not most people will feel Hypo.

You have only been tested for TOTAL T3 which is an outdated test of little value.  However it shows that you are only 14% of the range which is also very low.

So both of the thyroid hormone tests show that you are low and are consistent with being Hypo as well as are all your symptoms.

The problem you have is that your TSH which is a virtually useless test that is a screening test at best shows what most Dr's would consider about PERFECT.  Therefore I would not be suprised if your Dr is telling you that "youre normal". and that it isn't your thyroid and is refusing to treat you.  Am I right?

If so I would HIGHLY recommend that you find another Dr.  Any Dr that goes only by TSH will keep you feeling like crap!

Just my opinions!
Avatar universal
All of the tests you mentioned came back normal also.  I have just recently started pushing for additional testing and waiting to hear back.  I am guessing it’s going to be a battle, but I am ready.  I read on Wikipedia that the ck is useful in determining hypo and has an adverse relationship with T3.  Maybe with the ck being of the chart, they will do it.  I am also testing for acth tomorrow.  I have crazy low blood pressure and pulse.  I was given a clean bill of health from the cardiologist.
Avatar universal
Just want to say, some of the stuff I've seen, indicates that thyroid antibody tests aren't the end all be all for diagnosing autoimmune thyroid disease, since a significant fraction of normal people have elevated levels, and a very high percentage of especially hypothyroid patients have normal thyroid antibodies.

There is also central (pituitary related) hypothyroidism, not just autoimmune. In Central you have low or _normal_ TSH and low T3/T4.

Another suggestion is to get an ultrasound of your thyroid. Beware an US may show nodules, when then might need a biopsy.

Finally, what is important is for the doctor to fully investigate what's going on, so that you get the correct treatment. You don't want to prematurely focus on just the thyroid, since other conditions might be the real cause.

If everything else they check shows up okay, you might ask for a trial of a small dose of thyroid meds, and see if that helps and how your labs respond to that.
Avatar universal
Doctors are generally more receptive to printed material, plus scientific studies, than they are to just verbal information from the patient.  So I suggest that you take a copy of this link and mark on there which hypo symptoms you have.  There are many others besides the 26 listed, but those are typical symptoms.  Then you can give a copy to the doctor and show him all the hypo symptoms you have.  

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

When he tells you that your thyroid test results are "normal", you can then explain that with secondary hypothyroidism, the TSH remains low and thus thyroid hormone levels are also low.  If the doctor reminds you that your thyroid hormone levels are within the ranges, you can give him a copy of the following link that is a scientific study from which they concluded:

"High individuality causes laboratory reference ranges to be insensitive to changes in test results that are significant for the individual.

The width of the individual 95% confidence intervals were approximately half that of the group for all variables.

Our data indicate that each individual had a unique thyroid function. The individual reference ranges for test results were narrow, compared with group reference ranges used to develop laboratory reference ranges. Accordingly, a test result within laboratory reference limits is not necessarily normal for an individual."

Andersen S, Pedersen KM, Bruun NH, Laurberg P. Narrow individual variations in serum T(4) and T(3) in normal subjects: a clue to the understanding of subclinical thyroid disease. J Clin Endocrinol Metab. 2002 Mar;87(3):1068-72.

Then you can tell him that from what you've learned, the best way to treat a hypo patient is clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can also give the doctor a copy of this letter, written by a good thyroid doctor, for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

You can also give the doctor a copy of this scientific study which concluded that the only thyroid test that correlates well with hypothyroid symptoms was Free T3.  Free T4 and TSH did not correlate at all.


http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

If all this fails to get through to your doctor and get you a prescription for thyroid meds, then obviously you need to find a good thyroid doctor that will treat clinically, as described.  



Avatar universal
Thank you for all the great information.  I just did an acth test this morning and waiting for results.  If that doesnt pan out I will start pushing the thyroid issue.  I really hope this is an adrenal issue because I can already tell its going to be a battle.  The nurse said my thyroid levels look great.
649848 tn?1534637300
COMMUNITY LEADER
Can you please post the actual results, and reference ranges, for the B12, D, Ferritin and iron?
Avatar universal
Vitamin B12 >1000 > 200 pg/mL
VITAMIN D, 25-HYDROXY 43 20 - 79 ng/mL
Ferritin 44 22 - 291 ng/mL

WBC COUNT 7.3 3.5 - 12.5 K/uL
Red blood cells count 4.47 3.60 - 5.70 M/uL
Hgb 13.3 11.5 - 15.0 g/dL
Hematocrit 40.0 34.0 - 46.0 %
MCV 90 80 - 100 fL
RDW, RBC 13.1 12.0 - 16.5 %
Platelets count 281 140 - 400 K/uL

Neutrophils %, automated count 66 41 - 81 %
Lymphocytes %, automated count 28 13 - 46 %
Monos %, auto 6 4 - 12 %
Eosinophils %, automated count 0 0 - 4 %
Basophils %, automated count 0 0 - 1 %
Neutrophils auto count 4.8 2.1 - 7.7 K/uL
Iron 61 50 - 212 ug/dL
Iron binding capacity, unsaturated 357 110 - 370 ug/dL
Total iron binding capacity 418 228 - 428 ug/dL
Transferrin % saturation 15 14 - 57 %

649848 tn?1534637300
COMMUNITY LEADER
Hmmm - your B12 is WAY up there, but it's not toxic, so shouldn't be an issue.  Do you take a B12 supplement?

Your vitamin D is relatively low in the range; are you supplementing that? Low Vitamin D can cause many hypo like symptoms.  It's recommended to keep vitamin D near the higher end of the range.

Your ferritin is also lower in the range, as is your actual iron. Do you take an iron supplement?

"Aparently total t3 is the only test available."  No, all major labs in the U.S can run Free T3....... It's most likely that your doctor is not "up" on current protocol and is still ordering the Total T3, which is considered obsolete and of little value.  Ask for another set of thyroid (TSH, FT3/FT4) labs and specify that you want Free T3, not total.  If your doctor refuses, find another, asap.  
Avatar universal
I think at the time I took the test I was drinking a lot of zip fizz to get by.  That is loaded with b vitamins..  I do not supplement either iron or vit D.  I take a pre natal multi vitamin.  According to my fitness pal I am meeting my iron needs.

Now that I am working with the endocrinology department directly, I am guessing I will have better luck.
Avatar universal
I am on a fitness facebook group and they keep telling me to go gluten free yadda yadda.  I did for 2 weeks a while bag and it did nothing.  At this point I am willing to consider anything.  Its just a lot of work and planning and I am not sure I have the energy for it.  Thoughts?
649848 tn?1534637300
COMMUNITY LEADER
Aahh, well if you were doing the zip fizz, it's understandable that your B-12 would be high; apparently, you absorb it well, so that's not an issue.

"I take a pre natal multi vitamin."  Are you pregnant?

How did you determine your iron needs on my fitness pal?  While you may taking in enough iron to  meet your goal, you may not be absorbing enough, which would tend to keep your levels lower.  Additionally, ferritin is a a storage hormone for iron and yours is relatively low, meaning you don't have much in reserve, which is just as important and having enough circulating iron.

Low vitamin D levels can cause many hypo-like symptoms; if you don't treat it (supplement), you'll never know if symptoms are thyroid related or vitamin D related.

Gluten free is very controversial.  There are groups that think g/f is almost a cure-all for thyroid disorders; however, there is no scientific evidence to prove that it does anything to improve thyroid function or reduce antibody levels.  The only time people really need to go g/f is if they have a real intolerance or allergy to gluten (aka celiac).  Of course, if a food bothers you, you'd stop eating it; however, why go to all that trouble if you don't have to?  Embarking on a g/f diet is very difficult and can be expensive; *I* certainly wouldn't do it without a darn good reason.

Did you hear back on the ACTH test yet?
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