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.

@abeera

helo I am abera my TSH level in report is 6.2 is it very much high?

Jump to this post

In 1988, When my TSH was like that, it was because I had a thyroid nodule. It was biopsied, not cancer and I have taken Synthroid ever since, with numbers just fine. Nodule shrinks with meds.

REPLY
@dorisena

I am not able to help because I have not really learned the details about TSH. My thyroid was removed because of cancerous nodules and I am on throid medicine for the rest of my life. My endocrinologist kept saying my one number must remain low so I don't get more cancer, but I know I can't get more cancer in a thyroid that has been removed. Keep asking your doctor your questions. I have low energy and fight it daily but doctors insist it is because of the diabetes which I manage quite well. My blood sugar is between 100 and 115 every morning. I only take one metformin at night and I am thinking I can quit that if I am more active, depending on my bad back. Basically I do not "doctor" my chronic issues but concentrate on diet and exercise. I wish I slept better at age 86. I am working on it.
Dorisena

Jump to this post

the metformin can lower your B12 you should check it and if it is low supplement. Look for info about TSH also maybe it will help you.

REPLY
@khali

the metformin can lower your B12 you should check it and if it is low supplement. Look for info about TSH also maybe it will help you.

Jump to this post

My endocrinologist says I am perfect, has dismissed me to my primary doctor and that is the end of the discussion. Now my doctor checks my blood pressure, congratulates me on my low blood sugar numbers, and does nothing about my other chronic problems, because of my age which is 86. My garden is almost gone for the year, but I still have fresh tomatoes and sweet peppers, as well as stored onions and kidney beans. Dorisena

REPLY

First the Dr should send Free T3 and Free T4 instead of t4, t3 alone since they don't show what is circulating in your body just how much is stored. Have test for antibodies to see if you might have Hashimotos, the tests are TPO and TGab and if you do this is an autoimmune condition that it is different than hypothyroidism. I have all those symptoms you mentioned and mostly the shakiness in my head that is making me crazy and frustrated. I have gone to nine (9) endocrinologists and none knows how to treat Hashimotos, i will recommend the book " Stop the Thyroid Madness" by Janie A. Bowthorpe and don't mind if she is not a doctor, she knows more than any ot them. There is also a group in FB called STTM you should join and tell them how bad you feel. This is where i have found all the things that this brings like you adrenals, if your Iron is good, your B12 etc. Open your mind and don't listen to ones that said you should not find things in FB, Now i have been treating in LA since i could not find help here where i live. Good luck

REPLY

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

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY

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!

REPLY
@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!

Jump to this post

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.

REPLY

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.

REPLY
@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

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!

REPLY
Please sign in or register to post a reply.
  Request Appointment