Hypothyroidism Diagnosis

Posted by rneedham1 @rneedham1, Jan 14 10:32am

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.

@rneedham1 You sure have a host of symptoms. You will need a really good diagnostician to add them all up and come up with an answer. I know before I was diagnosed with diabetes I would have this:
"-Shakiness, dizziness, sweating, weakness, light headedness whenever I start to feel hungry"

I think that being cold can also be a diabetes symptom but I think that must be something that your doctor would have tested for so presumably your sugars numbers are OK.

I have hypothyroidism but don't really remember what my symptoms were except feeling tired a lot and lacking energy. Many of your other symptoms also sound like they could be thyroid-related. If your doctor thinks you are fine then you can accept that for now but keep a diary of your symptoms so you can have a very specific list of symptoms and when they occurred. The other option is to get a second opinion. If you feel very strongly that your thyroid is having a problem then I would do that. I have had times when I went through a period of being somewhat hyper and I had my endocrinologist order some tests but the numbers were fine. Apparently it was something else in my life that was causing that. Right now I am going through the opposite, I am always tired, but I don't think it's my thyroid. I am thinking it may just be the winter doldrums.
JK

Liked by flyboy383

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Have the test again. Some foods induce the elevated levels on the TSH test. First look up the foods that would elevate it, and look at those that lower it and examine your diet. Perhaps you inadvertently made the correction with your diet and then you were very close to borderline.

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@contentandwell

@rneedham1 You sure have a host of symptoms. You will need a really good diagnostician to add them all up and come up with an answer. I know before I was diagnosed with diabetes I would have this:
"-Shakiness, dizziness, sweating, weakness, light headedness whenever I start to feel hungry"

I think that being cold can also be a diabetes symptom but I think that must be something that your doctor would have tested for so presumably your sugars numbers are OK.

I have hypothyroidism but don't really remember what my symptoms were except feeling tired a lot and lacking energy. Many of your other symptoms also sound like they could be thyroid-related. If your doctor thinks you are fine then you can accept that for now but keep a diary of your symptoms so you can have a very specific list of symptoms and when they occurred. The other option is to get a second opinion. If you feel very strongly that your thyroid is having a problem then I would do that. I have had times when I went through a period of being somewhat hyper and I had my endocrinologist order some tests but the numbers were fine. Apparently it was something else in my life that was causing that. Right now I am going through the opposite, I am always tired, but I don't think it's my thyroid. I am thinking it may just be the winter doldrums.
JK

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Has you doctor ordered the micro albumin test to ensure your kidneys are not leaking proteins?
If you are on Levothyroxine it is possible the stuff is harming your kidneys and your other organs.

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Hi there. I know this is long but hope its worth the read. I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds or thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endocrinologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endocrinologist and a neurosurgeon soon.

In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. (in my own research, I believe) my body pain is a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, and overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me.

And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. It basically sates, patients need to listen to their bodies and not just go by what blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results.

What time of day was your blood work done? Mine had to be done before 8:30am every time. Maybe that is a reason yours was not consistent. ??

I would get a second opinion from a different endocrinologist. I had and still have some of every single symptom you listed besides shakiness. And to add to the list: heart palpitations, thinning hair, hot flashes (tho i feel you may have described), dry skin, swollen fingers. I believe my synthroid (thyroid medication) needs to be increased.

I know this was lengthy, but I hope it helps. I hope you get the answers you are looking for. My next research is going to be nerve damage and how/if/when it will heal. I hope I will be pain free once my tumor is removed and my thyroid gets back to normal!

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I am with you in thinking about every detail and how it affects you day after day. You know best what is happening and you study the matter as best you can.
Unless doctors have seen patients just like you and helped them, they may be at a loss to go forward at times. My thyroid was low for years and I took pills which didn't do much. Finally another doctor said I didn't need medication. I spent years with marital stress and worked too hard for my abilities, and suffered damage from arthritis as well. I learned to not be sick in my stomach and to get some sleep, even though it was interrupted deliberately. Then I had surgeries to correct arthritis damage and now am learning to live on Synthroid after removal of my cancerous thyroid, and nerve damage from back surgery. Actually I feel better than most people for my age and condition. I am a happy, blessed grandmother looking forward to a few new ventures before I die. I can still sew, play the piano, and teach children how to make projects. I don't have pain most days. Keep searching for answers until life is better. Dorisena

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Your systems sound like what I had years ago after I missed carried and had hysterectomy. I was 27. Was told nothing was wrong with me even though I felt I could die. Just go home and take some asprin. They too checked my thyroid and was told in normal range. Finally I told him I wanted 2nd opinion. It took that Dr only minutes to tell me I had a terrible shock to my body and had moderate to severe depression. Finally an answer. Once I was on the right antidepressant, my life turned around!
I also had a coworker who had her thyroid removed and told me just because you are in the normal range doesn't mean that it's normal for you!
Good luck in finding the right answer.

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Go to thyroidpharmacist.com. This woman has eye opening information!

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Thanks for sharing your story and to all of you that have replied. I have been having similar issues and have felt for years it is related to my Thyroid. Then after I had a child I developed several cysts around my thyroid. I am told this is not causing any issues they are not growing and my blood work is not showing anything wrong. Early on (prior to having my child and after) they wanted to diagnose me with depression. I really didn't feel this was the issue but tried this route for a while with no resolution. I kept gaining wait and now they seem to only focus on my weight issue. I even saw in my doctor notes that I seem to have an issue controlling my food intake even though I told them repeatedly I eat a normal diet and sometimes less than my child. I even charted what I eat on several occasions to prove to them my diet is not so bad as to warrant all this weight gain. My hair is now so thin, that my pony tail is close to the size of a new born babies with some hair (not the babies with a full head of hair). Now I have family members (aunts & cousins) getting diagnosed with Hypothyroidism and after treatment feel much better. I have shared this with my doctors but they still do not feel like I have a thyroid issue just a lack of exercise and need to go on a diet or they want to treat me for depression. I hope to find the right terms to use when speaking to my physicians to convince them to dig deeper and take a closer look.

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There is nothing wrong with seeking out an endocrinologist or another doctor for a second opinion. I have had similar experiences. One doctor who was subbing for my regular doctor, threatened to have me involuntarily committed to the psych ward because I complained of pain. I later was diagnosed with a pinched nerve in my back and had much therapy to heal. Then my doctor continued to diagnose me so insurance would pay for the patient visit. I called him on that because I wanted my health report to be clean for my insurance premiums. You don't always know what is behind the treatment or lack of. Dorisena

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@mri8191

Thanks for sharing your story and to all of you that have replied. I have been having similar issues and have felt for years it is related to my Thyroid. Then after I had a child I developed several cysts around my thyroid. I am told this is not causing any issues they are not growing and my blood work is not showing anything wrong. Early on (prior to having my child and after) they wanted to diagnose me with depression. I really didn't feel this was the issue but tried this route for a while with no resolution. I kept gaining wait and now they seem to only focus on my weight issue. I even saw in my doctor notes that I seem to have an issue controlling my food intake even though I told them repeatedly I eat a normal diet and sometimes less than my child. I even charted what I eat on several occasions to prove to them my diet is not so bad as to warrant all this weight gain. My hair is now so thin, that my pony tail is close to the size of a new born babies with some hair (not the babies with a full head of hair). Now I have family members (aunts & cousins) getting diagnosed with Hypothyroidism and after treatment feel much better. I have shared this with my doctors but they still do not feel like I have a thyroid issue just a lack of exercise and need to go on a diet or they want to treat me for depression. I hope to find the right terms to use when speaking to my physicians to convince them to dig deeper and take a closer look.

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@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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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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