Help!

[Kray8795]

Thyroid tested last September 2015 normal. Gained a lot of weight, started losing my hair, tired(sleeping 28 hrs in 32 hr period) muscle and joint aches, irritable.

Fast forward to Dec 1 2015 at reg doc. Had thyroid tested again and again it came back normal, talked him in to putting me on levothyroxin 100mcg. I feel better, not tired or sleeping all the time. Muscle and joint aches come and go. I can tell if I'm going to have a "hurt all over day" if I feet hurt the day before. I won't be able to walk or I walk like a 90 year old.

Now fast forward again to 1/14/16. Go to Endocrinoglist, tested tsh, thyroid antibodies, reverse t3 and t4 levels. All came back normal. Mind you I have been on Levo for a little over a month. If taking Levo when it's not needed wouldn't I test hyperthyroid. I'm so confused and at my wits end. I'm still losing my hair by the handfuls but everyone I go to says " you're normal" Endocrinoglist told me to stay on Levo and test again in two months.

Here are the test results from red doc on 12/1

Tsh reflex free t4 5.1 mg range is 1.8-7.8

Free t3 is 3.9 range pg/ml range of 211-911

The attached image is what the Endocrinoglist tested for and all came back normal. I don't have results in front of me right now.

Still having hard time losing weight and I'm still losing hair by the handfuls. Any idea where to go from here?

[shaws Administrator]

'Normal' blood tests do not mean you don't have hypothyroid clinical symptoms. That's the biggest mistake when they refer only to the blood tests alone without talking to and taking notice of the patient's symptoms or how they 'look'.

Before the blood tests were introduced as the 'ultimate' way to diagnose, we were given a trial of NDT upon our clinical symptoms alone.

Taking T4 will obviously show your bloods as not being hypo.

Someone will respond re your blood tests.

What dose of levothyroxine do you take?

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

Do you have a record of your first blood test results, with the ranges you can post too.

[greygoose]

Hi Cray, I'm afraid none of the above is very clear - at least, I can't make head nor tail of it. If your TT3 is really 3.9 with a range of 211 to 911, you really ought to be dead! I think you must have made a mistake there somewhere. And, where's the TSH reading?

I think you really ought to post again when you have the results in front of you, if you want helpful replies.

Are you still on 100 mcg Levo? That was a huge starting dose! Normally, one starts on 50. Are you still on 100? How do you take your Levo? Early morning with a large glass of water, leaving one hour before eating or drinking anything else?

And, on the day of the test, was it an early test (before 9 am)? And did you leave a gap of 24 hours between your last dose of Levo and the test? And did you fast (water only)?

All these things will make a huge difference. So, best to be clear on that.

It certainly sounds as if you are very hypo. But we need more detail before being able to help you.

[Kray8795 in reply to greygoose]

Thank you for the replies. I am working right now and will post again this afternoon.

[greygoose in reply to Kray8795]

[Kray8795]

Ok, let's see if I can get this right.

Regular doctor thyroid test results are:

Labeled as: tsh reflex free t4

Tsh 1.766 iu/ml units are 4.780 iu/ml

Ref range 0.55-??? (Cut off)

Free T3 result is 3.9 pg/ml with a ref range of 2.3-4.2

I have been on Levo 100 mcg since Dec 8th 2015. My regular doctor put me on this at my request. I have felt better (not as tired or sleeping all the time) my joint and muscle aches come and go. My hair is still falling out by the handfuls.

Moving on to Endocrinoglist thyroid test:

Triiodothyronine T3: value 112

Ref range is 71-180 ng/dl

Thyroid peroxidase (TPO) Ab

Value is 11

Range is 0-34

Tsh value is 0.518

Range is 0.450-4.500

T4, free (direct) 1.76

Range is 0.82-1.77

Thyroglobulin antibody is <1.0

range of 0.0-0.9

So, Endocrinoglist says: " you maybe hyperthyroid due to taking Levo at 100mcg since your thyroid levels are good"

I reply: " but I feel better. Not jittery, no heart palaptaions, shortness of breath etc" my tiredness is gone. I just have days where I hurt all over and my hair is still falling out.

She puts me on a medicine to stop the hair from falling out, keep taking 100mcg of Levo and retest in 2 months. she also want me to see a doc and make sure I don't have fibromyalgia! I have researched this until I'm sick of researching. My symtoms mimic so many things but when you look for " losing hair" it all points back to the thyroid. But my tests are "normal" so I'm FINE! I have told them I'm not fine. I know how I am supposed to feel and this is NOT it. All they want to do is shove another pill down my throat and send me on my way without giving an explanation as to why it's happening.

So, there you go! That's all the info I have. Maybe you all can makes sense of this better than I can. I really don't know what to do from here. Am I crazy? Could it be thyroid related when I test "normal"

as far as taking my meds, I take Levo at night before bed. The reg doc thyroid test...I was fasting and not on Levo. The Endocrinoglist, I wasn't fasting and had taken the Levo the night before and I had blood drawn at 11:00 a.m They never told me to fast.

One more thing. Since Endocrinoglist was so worried about me being hyperthyroid and since I have been on Levo for a while (5weeks) shouldn't it show up on the tests?

Thanks again😊

[LAHs in reply to Kray8795]

If I were you I would take your meds first thing in the morning one hour before breakfast to ensure an empty stomach (for adequate absorption). This way you have a clear 8 hours to empty your stomach. Do you really have an empty stomach just before you go to bed?

You really need 24 hours without medication before a blood test, not the 12 you had between just-before-bed and the 11 o clock test. See if you can get that blood test retaken.

Endocrinologists are always worried about you slipping into hypo, that's because they only look at the TSH, which is often unreliable if your thyroid isn't working. Mine (TSH) is almost zero but I have classic hypo symptoms. Regardless of whether I am under medicated or over medicated my TSH is about zero.

The thing about TSH is that it represents a protocol between your hypothalamus, your pituitary, your thyroid and your blood serum. If all of these items are working well then the TSH is a very good indication of what is going on with this system. If any one of these components is in default (like your thyroid packs up or you had a thyroidectomy) then that protocol is unreliable. This is true for any system you can think of. If any 4 units need to "talk" to each other and pass along information about their status and you remove one of them, you cannot rely upon the "conversation". But endocrinologists don't seem to understand this, so be careful and read up as much as you can on this topic, your well being will depend upon it.

[LAHs in reply to LAHs]

Oh dear, that should read "slipping into hyper", hot hypo