# Diagnosis nightmare - almost positive its Hashi's



## carriebeary (Jan 26, 2016)

This is my first time posting and of course I am new with questions for the seasoned...This thyroid gland is a nightmare. Or at least getting a diagnosis for it is. I Started out about a year ago with hair loss and fatigue. So I went to get my thyroid checked. They checked only TSH and it was a 2.04 (ref .35-4.94). Said it's normal, must be something else. OK no worries, had my vitamin levels checked, all normal. Meanwhile, I start getting forgetful, cold all the time (my hands are like ice), muscle fatigue and some aches and pains, gaining weight. So I see a Rheumatologist thinking that maybe its some sort of Rheumatology disease. All those tests came back negative. Have my thyroid levels checked again only this time demand a Free T4 (1.19) (ref .7-1.8) and a Free T3 (2.62) (ref 1.71-3.71) along with a TSH (1.74) ref (.35-4.94) Dr. feels my neck says my thyroid feels enlarged so she sent me for an ultrasound. No nodules seen and at the time my thyroid was not enlarged. (my thyroid swells and decreases and then swells again) I haven't been tested for antibodies yet but that is the next step. My question I guess is this (ok it's a two part question and yes I realize you are not doctors) Does anyone know of people who have had Hashimotos with normal thyroid blood results and an enlargement that comes and goes?


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## creepingdeath (Apr 6, 2014)

I do not have normal thyroid function and do take replacement hormone.

But my thyroid does change size throughout the day.

larger in the morning and slowly shrinking some by bed time.

Maybe you should have lab work done when your thyroid gland is enlarged?


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## Hashi411 (Jan 25, 2016)

Hi there, I'm new to this board also. Reading your story is like reading my own. ) All my labs were in normal range for a long time, I was told my thyroid was normal too. I finally had to order my own Thyroid Antibody TPO & TAA test online.... the results were TPO 149 High and TAA low positive. It was only then I got my diagnose of Hashimoto's. I would definitely have those checked next, like you are planning on )

Blessings

Donna~


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## carriebeary (Jan 26, 2016)

Thanks for the responses ( I edited my previous post to say normal thyroid bloodwork) I am starting to feel like a hypochondriac going in all the time insisting something is wrong when everything is coming back normal. But seriously sleeping 12 hours a day cannot be considered normal.


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## Hashi411 (Jan 25, 2016)

Believe me, I completely understand. I can wake up after 7-8 hrs of sleep...drag to get my daughter to school and get home only to curl back up for 2 hours. Then after lunch, constantly long for bed. The fatigue alone is depressing. I wanted to scream in Nov 2014. I made an appt myself to see my first Endo in over 20 years. I walked in with high hopes...all my other doctors gave me none. I took in my labs ... Borderline High TSH, and normal range T4, T3. I had pictures of my hair loss, a list of all my symptoms...and ready to have this dr run more test, proper test like TPO and TAA, T3reverse or retest the TSH, T3, T4, ..(the one I brought was a couple months old)....All to treat or rule out thyroid disease once and for all. But instead I got NOTHING. I was a new patient and not ONE thyroid test was ran on me that day. He vaguely listened to my concerns, glanced at my labs, touched my throat and said...." There is absolutely nothing wrong with your thyroid, it is perfectly healthy... your just stressed. You should really consider seeing a psychotherapist for stress management." I left home in tears... another $200.00 wasted. That's when I decided to order my own labs from the internet .

After my TPO came back positive and I was diagnosed with Hashimoto's, my Internal Med dr referred me to another ENDO. She seemed nice, but I have only seen her once. I go back in 2 weeks for a follow up......I'm worried cause she only wants to draw my TSH..... and its been 6 mos since I have had all my thyroid labs drawn. So I'm going to again order a complete thyroid lab test before my appt and just take the results with me.... If she brushes them off and only is focused on my TSH.... I will begin to look again for a new dr.... possibly a Holistic or Bio Identical Hormone Specialist.... Because, I'm not seeing anything impressive with the 2 Endos I have seen. 

I would like to tell you it gets easier, but for me it hasn't. Hopefully connecting with others via this board will help us both gain a lot of info we will need to help make our journey easier and not so scary


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## patish (Jan 12, 2016)

I found my doctor who runs ft3, ft4, rt3 and a huge hormone and metabolic panel through posting online on fb. I just asked who everyone had for a doctor with thyroid issues a d then I sent messages asking for details. I got 3 very good referrals that way. I'd give that a try.


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## Aimoconnor (Feb 3, 2016)

Hi! I'm also new to these message boards, but I felt I had to write. I was finally diagnosed with hashimotos 2 days ago. I was 23 when I saw my first endocrinologist because for years I didn't feel right-very sluggish, exhausted, mental fog, weight gain,etc. Hashimotos also runs in my family. My tests come back normal and the doctor tells me my family history and symptoms are irrelevant since my tests results look fine. My vitamin d was low, so he told me to start taking that. He then tried to treat me for polycystic ovary syndrome despite having very little evidence for it and put me on metformin(which is used to treat diabetes). The medication did nothing obviously because I did not have pcos. After a year of no improvement, he pretty much told me he didn't know what to do for me. So, from there, I try a couple more doctors, which of course tell me there's nothing wrong with my thyroid because of my normal test results. So, I gave up.

Fast forward 2 years and I become pregnant. The time during my pregnancy was the most amazing I felt in years. Not that all women feel like complete crap while they're pregnant, but it's usually a stress on the body and a huge adjustment for many. When I realized how normal I felt, I told myself that after I had my baby, I had to figure this out, especially since after about 10 months since the birth of my son, my body went back to it's old ways and I felt like a mess again.

So, my journey continued and I saw about 5 different doctors who told me my thyroid was fine. One doctor even told me I need to see a psychologist...thanks for the help doc! I finally found the doctor that would help me back in October. She is an otolaryngologist. Unfortunately, she's so good and busy that she wasn't taking new patients until January, so I decided to wait and put my complete trust in her that she would be the one to finally help me.

I got full panel of blood work and an ultrasound of my thyroid done in her office on 1/23 before I even met with her. I finally see her on February 1st and she says the magical words that I have hashimotos. My thyroid is enlarged to compensate for all of the work it's trying to do while it's full of holes from antibodies attacking it. She also told me that out of the 2 types of antibodies that attack the thyroid, I have the more rare kind that other doctors probably didn't test for. My vitamin d is also still dangerously low despite taking the supplement everyday for over 5 years.

So, right now I'm taking the lowest dose of synthroid. Obviously, it's gonna be a process to figure out which dose is right for me, so that may take a little time. I'm also on 50,000 iu of vitamin d3 for 6 months, which will eventually be lowered when my levels look better. I'm hoping to start feeling better in a couple months or so.

Sorry for writing a novel, but I just want you to know that I understand your frustration. Unfortunately, there are so many doctors out there that do not understand this condition. They only rely on the standard blood tests and once those look fine, they assume that your thyroid is fine. Just please hang in there and be persistent. You know your body isn't functioning the way it should be, so don't let doctors tell you you're fine. I don't have the enlargement that comes and goes because my thyroid is just large in general, but you definitely should get the antibodies tests. Good luck!


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## Love2RunLong (Oct 21, 2014)

Just wanted to add "Normal" doesn't mean "optimal"

I feel terrible when my TSH is 2.5 even though it's in "normal range" which is why it took so long for me to get diagnosed. My TSH finally jumped up to 8 after I had my baby and then we got on the road of diagnosing.


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## toopy45 (Apr 29, 2016)

I have had normal TSH and all thyroid levels my entire life.

I had a thyroidectomy in 2011, due to a growing nodule (which I had 4 inconclusive biopsies on prior to surgery). I had zero symptoms when it was suggested by my Dr that my thyroid felt 'larger than normal'. They monitored it for 8 years before the biopsies began. Getting my thyroid out has been terrible. I have had terrible hypo symptoms ever since, but still, my TSH and all levels remain "fine".

My Naturopath is the only one that has been helping with my symptoms. But I wish the medical Dr's would do more and believe me when I don't feel right. My Naturopath now believes I have Hashimoto's, but I need to beg my endo to test for antibodies. So, to answer your one question, yes, I have hypo (and suspected Hashimoto's), with normal blood work.

Good luck with everything!!


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## WhatHappened (Nov 12, 2015)

Toopy, if you're in the states and in the right state you might be able to get the test for yourself. The antibodies test isn't the cheapest but if your Endo won't test perhaps you can find out for yourself and then present him with the evidence if you do test positive.

http://healthonelabs.com/pub/tests/category/cid/23


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## creepingdeath (Apr 6, 2014)

You should not have to beg a doctor to run a test you request.

It does not cost him or her any money.

Most doctor don't like patients challenging their medical knowledge.

It's all about their enormous egos...........

I'd find another Doctor who cares about *you *getting well....and will take your suggestions and is willing to work with you to find a treatment to alleviate you symptoms...................

Two heads are better than one...................................


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