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.

TSH at 5.13. Should I seek a MD for hypothyroidism?

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Hi @w4cowboy and welcome to Connect! You may have noticed I moved your post to this existing discussion about hypothyroidism so that you can connect with others who have experience with TSH levels and hypothyroidism. Simply click VIEW & REPLY in your email notification to get to your post.

@mri8191 @dorisena and @contentandwell are fellow Connect members and may be able to offer you support.

Back to you @w4cowboy, are you showing any symptoms right now that are making you think of hypothyroidism besides the TSH level?

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@contentandwell

@mri8191 Beth, are you seeing an endocrinologist? If not then please make an appointment with a really good one. Thyroid issues are very often genetic and if there are members of your family with issues then it is quite probable that you may also have them. I have heard that the TSH test is not always accurate and there are other tests that can be done. Do you know if you have other tests? I presume you have had a TSH test.
I hope you can move forward in a positive direction and get some resolution. You should not have to be dealing with this, and if you are not eating much but gaining weight, that is definitely an indication of some problem. I hope you will let us know how you are doing.
JK

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Yes, a several times. At that time, I only had 1 or 2 family members that had been diagnosed with Thyroid issues. Each time I visit with someone from endocrinology, they want to track my diet so I document it and show them and they see I am not crazy out of control with my diet. However, they start to nit pit my choices like that 1 day I had a coke instead of water. The 5 days a week, I used 1 teaspoon of honey in my coffee and not sugar but they didn't want me to use anything. The time I am invited to a pizza party and have 2 slices of pizza. I even when on a 1000 calorie diet for them and lost only 2 pounds. They concluded it must be my diet and that I also need more exercise. We never seem to go any deeper than this because the basic blood work shows that everything is normal.

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@w4cowboy

TSH at 5.13. Should I seek a MD for hypothyroidism?

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@w4cowboy I have mild hypothyroidism and also mild diabetes (no medications, A1c was 5.8 at last appointment). My PCP would be happy to manage those for me but I prefer seeing an endocrinologist. They have the most training in these conditions so know the most. I guess whether or not you see a specialist (endocrinologist) depends on how much confidence you have in your PCP. I just checked my last TSH results and they were 2.53 mIU/L, the range is 0.40 – 4.50 mIU/L so you are slightly above the range. I take a very small dose (25mcg) of levothyroxine daily.

@mri8191 Doctors are like that. When I saw my PCP in December he noted on the visit's notes that I was non-compliant because I mentioned a couple of things. This was despite my numbers being very good. Some doctors really do not understand that most people can go off the recommendations in a limited amount – keywords being limited amount. If you are not getting much exercise getting more could help for sure. If you are overweight and want to lose I highly recommend myfitnesspal.com. It really helped me to lose a lot of weight and I credit that loss with my diabetes being as controlled as it is.
JK

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Everyone who believes or has been recently diagnosed with hypothyroidism should read Dr. Mark Starr's book Hypothyroidism, Type 2, The Epidemic. He explains how common this illness really is, the many symptoms, and also the many diseases caused by low thyroid, including diabetes and heart disease. I found this wonderful doctor several years ago by chance. I had gone to my GP with all the symptoms of hypothyroidism, including no energy, hair loss, cold extremities, weight gain, etc. But, because my TSH, over a several year period, had been in the 4-5 range, she said my thyroid was normal. I asked her what else could it be…she suggested I was depressed, and we could look into treatment! I asked for a referral to an endocrinologist. You see, my own mother suffered from hypothyroidism for years….I knew what I had. And I was right. My Endo felt my neck and immediately diagnosed it…said I had several nodules. At about the same time I heard Dr. Starr on a radio talkshow. It felt so good to be validated. He stresses that symptoms are more important than any lab result. Also, many experts now believe any TSH over 2.0 is abnormal. Dr. Starr explained how the normal ranges were developed 50+ years ago. It is now believed many used in the study were assumed to be normal but really were hypothyroid, thus making the range erroneous.
To Beth…..I understand what you're going through. Please see an Endocrinologist and read Dr. Starr's book. You might also look into taking your basal temperature….it is a very easy way to check your thyroid. Good luck! Oh, and BTW, hypothyroidism CAUSES depression!

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@kat3

Everyone who believes or has been recently diagnosed with hypothyroidism should read Dr. Mark Starr's book Hypothyroidism, Type 2, The Epidemic. He explains how common this illness really is, the many symptoms, and also the many diseases caused by low thyroid, including diabetes and heart disease. I found this wonderful doctor several years ago by chance. I had gone to my GP with all the symptoms of hypothyroidism, including no energy, hair loss, cold extremities, weight gain, etc. But, because my TSH, over a several year period, had been in the 4-5 range, she said my thyroid was normal. I asked her what else could it be…she suggested I was depressed, and we could look into treatment! I asked for a referral to an endocrinologist. You see, my own mother suffered from hypothyroidism for years….I knew what I had. And I was right. My Endo felt my neck and immediately diagnosed it…said I had several nodules. At about the same time I heard Dr. Starr on a radio talkshow. It felt so good to be validated. He stresses that symptoms are more important than any lab result. Also, many experts now believe any TSH over 2.0 is abnormal. Dr. Starr explained how the normal ranges were developed 50+ years ago. It is now believed many used in the study were assumed to be normal but really were hypothyroid, thus making the range erroneous.
To Beth…..I understand what you're going through. Please see an Endocrinologist and read Dr. Starr's book. You might also look into taking your basal temperature….it is a very easy way to check your thyroid. Good luck! Oh, and BTW, hypothyroidism CAUSES depression!

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Yes, Kat 3, you are describing my life. I tried pills for my mental status, and quit them in short order when I could not quit working. I told the doctor to give the pills to my husband as he was the one with the problem. Sometimes I report to my doctor that my "lima beans" are back in my neck and he laughs and feels my neck and says nothing. Working on my diet has produced the best results of anything I have tried. My Endo says I must take low doses of thyroid to prevent cancer but the surgeon declared me cured of cancer after the thyroid removal. I know I must lose weight and exercise more. I know it takes a lot of sleep because of getting up in the night for the bathroom.
At last I can say I am feeling better in the morning when I wake up. Of course I want more. Dorisena

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Have you seen an endocrinologist?

I have a new endocrinologist that can see and diagnose things my family doctor can't.

You may want to get your blood sugar tested.

Have a great day!

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@rneedham1 I was just re-reading through this and the thought occurred to me, are you by any chance taking biotin? If so it could explain the unusual difference in your tests. Biotin does not affect your thyroid but it can cause incorrect results in the TSH tests. If you are having a TSH test my endocrinologist to stop taking biotin a few days beforehand.
JK

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@contentandwell

@rneedham1 I was just re-reading through this and the thought occurred to me, are you by any chance taking biotin? If so it could explain the unusual difference in your tests. Biotin does not affect your thyroid but it can cause incorrect results in the TSH tests. If you are having a TSH test my endocrinologist to stop taking biotin a few days beforehand.
JK

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Thanks for the info. Yes I am taking biotin as well as several vitamin B (B12, B complex, B1) for the nerve damage to my leg/foot after TKR. I also use shampoo with biotin in it. I Wiil ask at my next appointment. Thanks!

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have you eliminated the possibility of parathyroid problems? Your symptoms read like symptoms of parathyroidism. Sometimes blood work fluctuates and gives a false negative of PT, so get the imaging and see what the images show.

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