Hypothyroidism Diagnosis

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.

@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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@contentandwell

@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

Jump to this post

@jk, Volunteer Mentor Thanks for the supportive words. When most of this started I was exercising a great deal. I used to play indoor soccer, completive volleyball 1 to 2 night per week, then Dancefit or jazzercise 1 to 2 nights per week. The doctor said my cholesterol was as good as an athletes. At that time, the reason for my weight gain by any provider was because my diet must have too many calories. However, I have never been a big eater or a binge eater. After my daughter was born, I would get exercise but just not in the Gym kind. I love gardening and would spend a great deal of time working in my yard. Of course chasing after a child and house work. As my child got older we would pick an activity to do together each year, like racquetball, off road bike riding, and ice skating. The interesting part is the more I worked in the yard the more I would gain weight which seemed very off to me ~ not sure with those other activities. Even water weight gain should come back off again rather easily but this weight did not. Many people told me it was probably muscle weight since that weighs more than fat but I read that muscle weight gain should only be about 10%. I was gaining more than that each summer. I have worked with dieticians and we make some minor adjustments here and there. It takes me a while but I will loose 10 pounds but eventually it will come back on again. I did try the 'Fit for Life' diet that utilized Medifast products. I did start loosing some weight but started having serious issues with constipation. They told me to keep drinking more water which I did but that did not stop the constipation issue. As this problem keeps progressing of course I keep loose energy to keep doing these things and I start to do less and less. Now I have a slipped disk that is pressing on my spine and for the last 2 years have been barely able to do anything in the yard or much house work. By this time though, the weight has already accumulated.

I did read some of these articles / authors that have been suggested in these comments ~ thank you to those that shares this information. I had already been taking a Kelp supplement per my sister's suggestion. However, from this information I have added a few more supplements like B1 & B2 & Ashwagandha. I am feeling a little less sluggish. Not where I would like to be but every little bit helps.

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@mri8191

@jk, Volunteer Mentor Thanks for the supportive words. When most of this started I was exercising a great deal. I used to play indoor soccer, completive volleyball 1 to 2 night per week, then Dancefit or jazzercise 1 to 2 nights per week. The doctor said my cholesterol was as good as an athletes. At that time, the reason for my weight gain by any provider was because my diet must have too many calories. However, I have never been a big eater or a binge eater. After my daughter was born, I would get exercise but just not in the Gym kind. I love gardening and would spend a great deal of time working in my yard. Of course chasing after a child and house work. As my child got older we would pick an activity to do together each year, like racquetball, off road bike riding, and ice skating. The interesting part is the more I worked in the yard the more I would gain weight which seemed very off to me ~ not sure with those other activities. Even water weight gain should come back off again rather easily but this weight did not. Many people told me it was probably muscle weight since that weighs more than fat but I read that muscle weight gain should only be about 10%. I was gaining more than that each summer. I have worked with dieticians and we make some minor adjustments here and there. It takes me a while but I will loose 10 pounds but eventually it will come back on again. I did try the 'Fit for Life' diet that utilized Medifast products. I did start loosing some weight but started having serious issues with constipation. They told me to keep drinking more water which I did but that did not stop the constipation issue. As this problem keeps progressing of course I keep loose energy to keep doing these things and I start to do less and less. Now I have a slipped disk that is pressing on my spine and for the last 2 years have been barely able to do anything in the yard or much house work. By this time though, the weight has already accumulated.

I did read some of these articles / authors that have been suggested in these comments ~ thank you to those that shares this information. I had already been taking a Kelp supplement per my sister's suggestion. However, from this information I have added a few more supplements like B1 & B2 & Ashwagandha. I am feeling a little less sluggish. Not where I would like to be but every little bit helps.

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@mri8191 Have you tried something like Miralax or Metamucil for your constipation problem? These seem to be the first things that doctors suggest. Here is a link to some of the things recommended for relief.
https://www.webmd.com/digestive-disorders/prescription-medications-to-treat-constipation#1
I lost a lot of weight prior to my liver transplant and had kept it off for quite a while but I have gained about 10 pounds since the summer and it too is being very stubborn. I am trying but maybe not hard enough. I am back to recording what I eat on MyFitnessPal, that helps to keep me honest. You can also put your exercise in there and they offset your calories with how much energy you expended.
At least you are feeling less sluggish, that's probably the first step to getting active once again. I too have been very sluggish recently. this morning was especially difficult. At this point I am wondering about SAD (Seasonal affective disorder) and wondering if the full spectrum lights might help.
I would really be interested in hearing how you are doing and if you are having good or any results from anything you are trying. I think there are many of us with similar problems.
JK

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Yes, I have tried Miralax and Metamucil and Citrucel. Those worked when I was younger (20s & 30s) but when I got into my late 40s those just make matters worse. The Smooth Move tea is now helpful and if that is not enough then I move on to use Healthforce Superfoods Intestinal Movement Formula or Irwin Naturals Daily Gentle Cleanse. I am no doctor and cannot say this would work for everybody but it works for me. I do know that one of the symptoms of Hypothyroidism is constipation and not having enough energy as well as hair loss. I am really feeling like that is the direction I need to concentrate on because without fixing that problem anything else will just be a Band-Aid without getting to the root of the problem. I really do feel I have spent too many years agreeing to the Band-Aid fixes. Would prefer to move forward with my PCP but if I cannot bring them on board to finding the root cause then I will have to work on my own. Hate to say that but I already feel I have lost way to many years.

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@mri8191

Yes, I have tried Miralax and Metamucil and Citrucel. Those worked when I was younger (20s & 30s) but when I got into my late 40s those just make matters worse. The Smooth Move tea is now helpful and if that is not enough then I move on to use Healthforce Superfoods Intestinal Movement Formula or Irwin Naturals Daily Gentle Cleanse. I am no doctor and cannot say this would work for everybody but it works for me. I do know that one of the symptoms of Hypothyroidism is constipation and not having enough energy as well as hair loss. I am really feeling like that is the direction I need to concentrate on because without fixing that problem anything else will just be a Band-Aid without getting to the root of the problem. I really do feel I have spent too many years agreeing to the Band-Aid fixes. Would prefer to move forward with my PCP but if I cannot bring them on board to finding the root cause then I will have to work on my own. Hate to say that but I already feel I have lost way to many years.

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@mri8191 have other tests been done besides the TSH? If not you should ask to have them done. The tests are explained here:
https://www.niddk.nih.gov/health-information/diagnostic-tests/thyroid
If I recall, you have gone to an endocrinologist. Maybe you need to find a better one. Sometimes symptoms tell more than tests. I just read that within the last few days in an article about osteoporosis. I know it was true when I had cirrhosis. I had many symptoms but my liver tests were not too far out of range so it was assumed it was not my liver. You definitely have some symptoms that sound like hypothyroidism.
JK

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