# Feel worse after diagnosed



## Emilychazza98 (Jul 28, 2015)

I'm 17 and around may time I was diagnosed with hashimotos after having a scan a my head for my headaches. My pituitary was seen to be enlarged (no tumours) and then I was sent to an endocrinologist who did blood tests for my thyroid. I was pretty shocked because doctors had passed my symptoms of as anxiety as I am a hypochondriac so thought I had allsorts of illnesses.

I am now on 75 micrograms of levothyroxine and my tsh is 4.9, they want to get it down to 1.0. However I feel even worse than I did before and now I'm starting to worry about thyroid cancer. My fatigue is really bad when I wake up and during most of the day. I have no goiter but haven't been tested for nodules or anything like that.

Should I ask for a scan to make sure? Or would they of noticed something in my blood test?


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## joplin1975 (Jul 21, 2011)

You should have a thyroid ultrasound, yes.

Did they say anything else about pituitary dysfunction?

They should also be testing free t4 and free t3 along with TSH. They should not be dosing based on TSH alone. Did they ever do antibodies testing?


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## Emilychazza98 (Jul 28, 2015)

They said nothing about the pituitary enlargment, apart from the fact that they will keep an eye on it by having another mri in january next year. They also said that it was only very slightly enlarged.

I forgot to add in my other results because my tsh level is the only one i can remember. i have had an antibodies test which was higher than normal (i dont know the level).

My free T4 is 13.6 and my free T3 is 7.4

Can gps send you for an ultrasound even if they cannot feel anything there and just for a piece of mind or to make sure?


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## joplin1975 (Jul 21, 2011)

Do you have the reference ranges for those results?

Your GP should send you for an ultrasound, regardless of whether or not they can feel anything. Hashimoto's patients should all have a "baseline" ultrasound and should have repeat ultrasounds every few years (assuming nothing is found on the original scan). The vast majority of Hashi's patients have nodules.

It does seem odd, though...you've not had an ultrasound and you've not have antibodies testing. I wonder what criteria the doctors used to diagnose you with Hashi's? Just because you have an elevated TSH does not mean you have Hashi's.


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## Emilychazza98 (Jul 28, 2015)

I have had an antibodies test which is how they diagnosed me with hashimotos. First of all I had a simple tsh test with the gp and he said it was borderline. Then I went to an endocrinologist who did a full thyroid test including antibodies.

i will comment the reference ranges soon after my driving lesson


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## joplin1975 (Jul 21, 2011)

Ah, ok, apologies -- I read your previous post wrong.


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## Andros (Aug 26, 2009)

Yes, you should request a scan no matter what. However, when titrating meds to get you to the 1.0 mark, you may not feel so great and there is no right place for you until you reach that "right" place for you. It may take a while.

But, meanwhile...............................a scan; definitely yes!

Welcome to the board!


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## Emilychazza98 (Jul 28, 2015)

Ok here's my results with the ranges

TSH: 4.9 (normal range 0.3-5.5)

Free T4:13.6 (normal range 8.1-22.5)

Free T3: 7.4 (normal range 4.1-7.9)

I have another blood test scheduled for the 18th August so when I go back to talk about my results I will ask about the scan.


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## joplin1975 (Jul 21, 2011)

Uh.

I think you've got something else going on other than "just" Hashimoto's.

See your free t3 number? It's flirting with the top of the range. Free t3 is the active hormone your body needs for metabolism. When it starts creeping toward the top of the range, that actually means you are leaning toward HYPER, not hypo. Which means you WOULD feel worse when taking levo. You number should be closer to 6.95 in that reference range. Once you get over that 75% of the reference range point, you will start to feel not so good.

Given your enlarged pituitary, I really think you need additional testing to figure out what's going on.


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## Emilychazza98 (Jul 28, 2015)

Now I'm starting to worry. Could it be something serious going on like cancer?

Somebody else has also said they think I've been misdiagnosed but surely not since I have antibodies involved. I'm so confused now and scared .

About my pituitary they checked it and said no tumours. So what more testing do they need to do? I asked the endocrinologist to check my adrenals and he said I don't show any signs of an adrenal problem.


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## joplin1975 (Jul 21, 2011)

I'm not sure. I know a bit about hashi's and a bit more about thyroid cancer, but I'm no doctor.

I would ask for additiona antibody testing, to include TPO again as well as TSI and Tg/TgAB. And I'd get that ultrasound.

Do you have any hyper symptoms? Like weight loss, sleeplessness etc?


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## Emilychazza98 (Jul 28, 2015)

Okay I will ask the doctor after my blood test on the 18th.

No I have no hyper symptoms that I know of. I just have really bad fatigue to the point where I just don't want to move anywhere and getting up out of bed and doing normal things is a struggle; even talking sometimes.

After suffering really bad health anxiety, thinking I had brain tumours, different cancers and ALS, it was a relieve to know it wasn't "all in my head" but now I think I wish I didn't have it since it's effecting me so much


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## ZeldaGirl712 (Mar 19, 2015)

Hello  I too have anxiety and it's usually health related and thats how I found out I had Hashimotos. I felt the same way after being diagnosed... Wondering if finding out made my anxiety worse. i just try to remind myself that a lot of people live with this disease and I just have to learn to do the same. I feel your pain, you are not alone. I wish you well


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## Vogel (Nov 2, 2014)

Hi there! I was officially diagnosed last October with Hashimoto's, but was told at age 18 I was "mildly hypothyroid." I'm going to share my experience so far with you, and some things I've learned the hard way, in hopes it helps to ease some of your stress. I hope this isn't overwhelming!

First of all, my symptoms ranged from massive anxiety, panic attacks, depression, lethargy, apathy, fatigue, muscle aches, joint aches, pain in my wrists, dry skin, constipation, dizzy sensations, headaches, migraines, brain fog, mood swings, and tooth decay (in spite of brushing and flossing and fluoride and dentists.)

In October I was already on 100mcg of Levothyroxine, but when I finally sought help from an endocrinologist my TSH was 44! Since then, I switched to Synthroid and worked my way up to 137mcg. Lesson learned: different brands of thyroid medication, specifically T4 (thyroxine), can be more effective than others. What works for me may not work for you, so don't be afraid to ask to switch brands. Also, taking your med daily on an empty stomach with a full glass of water is important.

You say you feel worse after being diagnosed - I did too! You probably aren't at a proper dosage of medication yet, but doctors can't give you a high starting dose otherwise you will shock your system. It's important to get blood tests every 6-8 weeks until you hit the right dose. I didn't start feeling anywhere near normal and healthy for about 7 months. This was the pattern I noticed each time they increased my dosage: week 1-2 = feel pretty good, noticed improvements; week 3-4 = crash, feel just as bad as I did before; week 5-8 = feel better, but can distinguish which symptoms are gone and which ones are lingering. Be honest with your doctor about what has NOT improved. Don't settle for "I feel good enough." That was my biggest mistake!

It will take some time to heal. Your body has been deprived of vital hormones, but you're taking care of it now! Stress is a monster and for me it aggravates Hashimoto's. Practice stress management, whether it is deep breathing exercises, yoga, boxing, reading, gardening, meditating... you get the picture. Exercise is healthy for obvious reasons, but I really feel it is extra important for those of us with thyroid disorders. Don't feel like you have to run marathons though. Strength training has really helped me. Not bodybuilding, just light weights to improve my muscle mass.

I know this is getting longer than I anticipated, but I wanted to touch on cancer. You should request an ultrasound. If only for a baseline image to compare against any future changes. I have a nodule on my thyroid, it is too small to biopsy, but knowing it is there means I know I need to keep on eye on it. Additionally, nodules are common with Hashimoto's and the majority of nodules are completely benign. Knowledge is power - please do not be afraid! The majority of thyroid cancers are considered to be "slow moving." That means you have time to take a DEEP breath and focus on the Hashimoto's stuff.

I hope this has helped you in some way. I apologize if it's a little all over the place.


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