Hypothyroidism Diagnosis: Not sure what to do at this point

Posted by rneedham1 @rneedham1, Jan 14, 2020

Hello. For reference I am a 27 y/o female. I recently had some blood tests done that showed my TSH levels at an 8.26 so my Dr. reordered the blood tests. I had the same tests done the next day as well as additional tests for T4 and T3 and everything showed normal the second time around with my TSH levels at a 4.12. I don't understand what would cause this fluctuation and additionally my doctor seems to think I am fine. However, I have been having the following symptoms for at least the past year and feel like they might be related to a thyroid issue. I don't know what to do at this point…My symptoms include:

-Shakiness, dizziness, sweating, weakness, light headedness whenever I start to feel hungry
-Severe lack of sex drive
-Overly emotional, feeling tearful, almost crying for no reason
-Feelings of being lost, hopelessness that seemingly come out of nowhere
-Brittle, breaking nails and hair breakage
-Feelings of anxiety
-Feeling cold often even when others feel warm or hot
-Decreased Appetite
-Mood swings, snapping at my SO
-Random loss of desire to do things I enjoy

I'm not sure what to do at this point. I am frustrated and I am tired of having these symptoms and being told I am fine.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

It is important to note that living with those you love and getting out and about helps make your body work much better and feel better. This pandemic has isolated us and then we pretend we are not depressed because we don't want to be complainers. It is a tough spell for us.
Dorisena

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Find a good endocrinologist. They will listen to your symptoms and adjust based on them along with all of your thyroid test, and they should be testing tsh, t4, .and t3. All are important.
Your TSH could be high for you. Even at 4.0 you could be hyperthyroid and you could be hypothyroid… A lot of the symptoms crossover with each other. But they all definitely sound like a thyroid disorder. I have hashimoto's thyroiditis myself. It's really complicated, and even a lot of endocrinologists mistreat it.

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@olivesn

Find a good endocrinologist. They will listen to your symptoms and adjust based on them along with all of your thyroid test, and they should be testing tsh, t4, .and t3. All are important.
Your TSH could be high for you. Even at 4.0 you could be hyperthyroid and you could be hypothyroid… A lot of the symptoms crossover with each other. But they all definitely sound like a thyroid disorder. I have hashimoto's thyroiditis myself. It's really complicated, and even a lot of endocrinologists mistreat it.

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They should test Free T3 and Free T4 not T3 and T4 that don't tell what is circulating in your body, the other test it's what is stored, not much use

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Hi. I have a question for the moderator, in order to be directed to the proper group, because I am unsure. I am wondering if there are any discussions going on in the area of adrenal insufficiency from CAH-21 with digestive, energy, cognitive and other fluctuations, cardiac fluctuations, and strategies of dosing the hydrocortisone. I take thyroid and it has been steady. Thank you for any guidance.

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Did you test your thyroid levels under the same conditions i.e. same time of day? I have read recommendations thyroid labs are best drawn first thing in the morning before your thyroid medication & any breakfast.

I recently participated in the American Thyroid Association Patient Education Forum. I specifically asked (in a break out group) why FT3 (Free T3) was not tested. I recall the doctors saying something to the effect it was difficult to register a accurate FT3 blood level. That the body has FT3 located in multiple sites. A good doctor will work with a symptomatic patient to understand why.

My limited general understanding is that when one has a “Hashi flare” thyroid hormones may be spilled into the blood stream & consequently spike the blood level afterwards. Many thyroid patients test for any gluten issues & make other dietary changes to try & reduce these flare ups.

You are very smart to start so young troubleshooting your thyroid signs & symptoms. A Pharmacist by the name of Dr. Izabella Wentz was afflicted by Hashimoto’s at a young age too & she has chronicled her early struggles in books as well as online. She has turned her thyroid journey into a life long career passion seeking to help others struggling with this diagnose.

If you haven’t read her story you might cull helpful pointers you can discuss with your doctor from viewing online how she mastered her thyroid setback. She has published much & continues to be a source of inspiration to those trying to sort all this out!

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@linh

Did you test your thyroid levels under the same conditions i.e. same time of day? I have read recommendations thyroid labs are best drawn first thing in the morning before your thyroid medication & any breakfast.

I recently participated in the American Thyroid Association Patient Education Forum. I specifically asked (in a break out group) why FT3 (Free T3) was not tested. I recall the doctors saying something to the effect it was difficult to register a accurate FT3 blood level. That the body has FT3 located in multiple sites. A good doctor will work with a symptomatic patient to understand why.

My limited general understanding is that when one has a “Hashi flare” thyroid hormones may be spilled into the blood stream & consequently spike the blood level afterwards. Many thyroid patients test for any gluten issues & make other dietary changes to try & reduce these flare ups.

You are very smart to start so young troubleshooting your thyroid signs & symptoms. A Pharmacist by the name of Dr. Izabella Wentz was afflicted by Hashimoto’s at a young age too & she has chronicled her early struggles in books as well as online. She has turned her thyroid journey into a life long career passion seeking to help others struggling with this diagnose.

If you haven’t read her story you might cull helpful pointers you can discuss with your doctor from viewing online how she mastered her thyroid setback. She has published much & continues to be a source of inspiration to those trying to sort all this out!

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2 thoughts:

I believe, after years of taking thyroid meds, that women and maybe men are often diagnosed as " fine" after thyroid testing when, in fact, they are being impacted by the thyroid. No doctor told me that but I have a suspicion based on anecdotal evidence. I have no idea how to move forward on that premise.

My health has been full of symptoms without diagnosed conditions There are blissful times when a group of symptoms are diagnosed and can be treated. As I read your post I thought I would offer a wild card diagnosis that I experienced and was cured from by a ridiculously simple procedure.

Parathyroidism – I had never heard of the parathyroid glands. To make it more confusing these tiny little glands located behind the thyroid have no common function with the thyroid. But, if they are a problem, they are a big problem because of the symptoms which seem to come out of the blue and there are many of them and they do feel related to the thyroid. I know it sounds crazy but once you are cured you cannot remember the symptoms.

As a point of reference, my memory began to suck. SUCK! I was hot or cold or hot or cold, mood swings…many symptoms. Wanna know the bizarre thing, today I am literally searching my brain to remember a thing about all those symptoms and they were intense and challenging.

I will say no more because I have no clue about the source of your symptoms. There are many possibilities. I pray you find a diagnosis soon. At the least this post may have taught you a new medical condition.

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Congratulations on your parathyroid discovery/treatment. Thank you for sharing.

Hopefully you have delved into the following which I will mention just as a reminder: It is said that thyroid hormones require optimum vitamin D, vitamin B-12, folate & ferritin levels to function properly. Those are said to be the four bases one must keep covered (optimal) at all times. If you haven’t checked them in a while you might consider doing so just to rule them out as a contributing factors to current concerns.

You have the will, I trust you will find the way to gain comfort with your health again.

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@linh

Congratulations on your parathyroid discovery/treatment. Thank you for sharing.

Hopefully you have delved into the following which I will mention just as a reminder: It is said that thyroid hormones require optimum vitamin D, vitamin B-12, folate & ferritin levels to function properly. Those are said to be the four bases one must keep covered (optimal) at all times. If you haven’t checked them in a while you might consider doing so just to rule them out as a contributing factors to current concerns.

You have the will, I trust you will find the way to gain comfort with your health again.

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Thank you Linh! I realize your comments/information were not directed to me, but they happen to be quite relevant. So I intend to follow up. I have been taking thyroid for 45 years, since before much of the technology/ info existed. While hypothyroidism is not my primary diagnosis, as I now know, my thyroid function, or symptoms that mimmick it, continue to fluctuate and can be challenging to manage. So I will check out your recommended pearls of specific vitamins and the author you mentioned. Thank you!

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@linh

Congratulations on your parathyroid discovery/treatment. Thank you for sharing.

Hopefully you have delved into the following which I will mention just as a reminder: It is said that thyroid hormones require optimum vitamin D, vitamin B-12, folate & ferritin levels to function properly. Those are said to be the four bases one must keep covered (optimal) at all times. If you haven’t checked them in a while you might consider doing so just to rule them out as a contributing factors to current concerns.

You have the will, I trust you will find the way to gain comfort with your health again.

Jump to this post

I am going to check into these levels myself. Thank you for sharing.

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