Major Thyroid Symptoms Normal TSH. Doc won't refer to Endocrinologist for antibody test. Now what?

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First, thank you to anyone taking the time to read my story. lol My symptoms started 10 years ago. Intolerance to cold/heat, unexplained weight gain (although nothing has changed in my diet and I eat a lean, low calorie diet), hair loss, difficulty swallowing, hoarse voice, lethargy, chronic fatigue, muscle/joint aches/cramping (was dx w/ fibromyalgia), constipation, shortness of breath, loss of appetite, memory issues/brain fog, excessive thirst, weakness, lightheaded, dizziness, dry hair, skin, lips and eyes, loss of appetite and many more...  Incidentally, I also have an 8mm thyroid nodule since 2008.  I have been fighting with several doctors over the past 10 years and not one has referred me to an endocrinologist.  I also just found an old U/S report from 2013 with findings of thyroid echogenicity being mildly heterogeneous. I looked that up and several doctors agree that a heterogeneous thyroid usually means thyroid disease and is usually Hashimotos hypothyroid, which is what I believe I have.  I know it only says mild, but with my all of my symptoms, I should have been referred to an endocrinologist for a SIMPLE antibody blood test to at least rule out thyroid disease. But because my regular TSH blood labs always come back normal, all the docs say my thyroid is fine! neutral  They blame all my symptoms on Fibromyalgia, but I know that is not what this is.  Every year, when the seasons change from Summer to Fall and the cold air arrives, my symptoms are very severe and this year they are so bad that I am barely able to function to even do the simplest of things, like shower. I am single and live alone and I recently had to move away from my family and friends, so I have no help. BTW, several of my other specialists agree that I need to see an endo, but they are unable to give me a referral. It has to come from my PCP and he said no. I have been suffering and incapacitated for a month now and already had to cancel Thanksgiving and Christmas plans to go see my family because of this. sad  Has anyone gone through this?  Does anyone have any advice?  I'd really appreciate any input anyone might have to help me in any way.  

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  • Posted

    I don't really have answers for you because I go through the same kind of stuff.

    But I was just wondering why your pcp will not give a referral. Nothing out of his pocket. So what could be his problem. Unless he just doesn't want to be proven wrong by anyone. Kind of an ego problem. Thats where I run into problems. .

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    • Posted

      Hi Jessie, I'm so sorry you are going through this same kind of ordeal. Do you also have severe symptoms and no one is listening?  As far as my doctor, unfortunately, the doctor I have been treating with for the past 2 years left and this was the only guy in the area who had an appointment open within a month (all others were a 6 month wait) and with me being unable to function with all my symptoms, I can't wait 6 months to be seen, so I went to see him.  He said that he won't refer me because there is nothing that warrants him to refer me to an endocrinologist. He said that the wait list to see an endo is 6 months and that if he referred me without warrant, the endo would be upset and then wouldn't take me seriously later down the road should I truly need one. I can almost assure you that I will be saying to him "I TOLD YOU SO!" when I do eventually get to the bottom of this.  But I am barely making it from one day to the next like this. And what all these doctors, who have ignored my symptoms and tests results over the past 10 years, don't realize is, all the damage done by their negligence. 

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    • Posted

      I'm pretty sure sweetmelissa is correct Tammy. I was was making an observation I've noticed through the years. Many doctors are aflicted with with ego problems. I do feel for you and know your frustrations all to well.

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  • Posted

    Well.. it's just not that simple.  You do most likely have Hashimoto's because of your ultrasound results, BUT..  even if the doctor did give you a referral to an endocrinologist, that would not change anything.  There is no treatment for Hashimoto's.. only for hypothyroidism, which is just a symptom of Hashimoto's, and not everyone will go on to develop hypothyroidism.  So.. being your TSH results are good and in normal range, no doctor would give you a T4 replacement med, like levothyrixine anyway.  So, really it makes no difference.  Do you happen to know what your TSH came back at?   Anyway.. there are things that you can do yourself, to help stop the progression of damage to your thyroid and hopefully to stop yourself from developing hypothyroidism.  These are to eat healthy, no processed foods and sugars, some say to stay away from gluten also.  Also, get daily exercise, and develop a healthy sleeping patter.  Also.. stay away from pesticides and herbicides too.   A good selenium supplement and mutli-vitamin would be beneficial also...

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  • Posted

    Melissa is correct. Hashimoto’s is a common variety of hypothyroidism caused by the immune system. However, if you get tested for Hashimoto’s and it came out that you have it, that would be collateral evidence for Hypothyroidism. 

    Can you tell us what your TSH level is? Your doctor is obliged to share that if you don’t know it.

    As well there is a non prescription thyroid supplement called ThyroGold that many people find works for them. In your shoes I might be inclined to try it. You purchase it online.

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  • Posted

    I really appreciate all of your replies.  I am severely depressed at this point and was reaching out here for some hope.  Unfortunately, from what you are all telling me is that there is no hope?  I can't even function.  I can't survive like this.  I don't even know how I am going to make it to my next doctor appointment.  Keep in mind that I have been dealing with these terrible symptoms for the past 10 years, but since my move to a colder climate 2 years ago, they have gotten even more debilitating.  So what you are all telling me is that people with Hashimoto's hypothyroid are left completely disabled and reliant on others to care for them?  I just have a hard time believing this. And if it's true, the suicide rate must be very high amongst the Hasimoto's population. For those asking if I know my TSH levels, the doctor said they were within normal range as my original post states.  I researched it and that does NOT mean I do not have hypothyroid. I have ALL of the symptoms, not to mention evidence of thyroid disease on my ultrasound from 2013. I do not know the values.  I saw the doctor on Tuesday, was seen in the hospital ER Wednesday (my cardiologist urged me to go) hoping for someone to help me and they referred me back to my doctor (PCP).  I called his office Thursday and Friday and have not gotten a return call yet. I have been in bed for the past MONTH and have not been able to do anything. This is so scary. cry

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  • Posted

    I really appreciate all of your replies.  I am feeling hopeless at this point and was reaching out here for some hope.  Unfortunately, from what you are all telling me is that there is no hope?  I can't even function.  I can't survive like this.  I don't even know how I am going to make it to my next doctor appointment.  Keep in mind that I have been dealing with these terrible symptoms for the past 10 years, but since my move to a colder climate 2 years ago, they have gotten even more debilitating.  So what you are all telling me is that people with Hashimoto's hypothyroid are left completely disabled and reliant on others to care for them?  I just have a hard time believing this. For those asking if I know my TSH levels, the doctor said they were within normal range as my original post states.  I researched it and that does NOT mean I do not have hypothyroid. I have ALL of the symptoms, not to mention evidence of thyroid disease on my ultrasound from 2013. I do not know the values.  I saw the doctor on Tuesday, was seen in the hospital ER Wednesday (my cardiologist urged me to go) hoping for someone to help me and they referred me back to my doctor (PCP).  I called his office Thursday and Friday and have not gotten a return call yet. I have been in bed for the past MONTH and have not been able to do anything. This is so scary. cry 

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  • Posted

    Tammy..  I'm going to be honest here.  It may not be what you want to hear, and I'm sorry about that.  I just wanted to mention that perhaps it's time to start looking for something else that may be causing your symptoms. Now.. this is just my opinion, and hopefully others will chime in and see what they think.  By the way you are describing your symptoms and how you are pretty much home bound and unable to care for yourself, then it cannot be from hypothyroidism, as your TSH is normal.  Lets just say that your TSH was closer to the top range of normal.. that would not leave you unable to care for yourself either. Your TSH would have to be skyrocketed, in order to feel as bad as your saying.  I honestly think that you have some other medical issues going on that need to be investigated.  I think your next step would be to find another doctor to run more test and find out the cause of your suffering.  There are many, many other conditions that can mimic symptoms of hypothyroidism. Of course.. I may be wrong, I'm not sure.  It's just a thought...

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    • Posted

      Hi Melissa lol I always like honesty, even if it is hard to hear.  I do appreciate you taking the time to reply to me.  I understand what you are saying about my TSH levels being normal and the way I am feeling.  I'm not sure what is going on, but have been told for 10 years this is all from Fibromyalgia.  I happened to read a thread one day in a Fibro forum where they were all talking about being misdiagnosed because their TSH was normal. Then researched it and found many medical documents backing it up.  Then realized all of my symptoms point to hypothyroid.  I didn't even list all of them, but I have every single one! One I just read is your temperature being below 97.8.  Well, guess what?  About 8 years ago my body temp suddenly changed to 97.5...consistently when my temp was always 98.6.  I questioned the doc about it and she just shrugged her shoulders and blew it off.  I also read where medical experts say if you go for a long period of time of being undiagnosed with hypothyroid, the symptoms can become so severe you can end up becoming disabled from them. The thing is that my symptoms are so severe that they are debilitating.  Like the cold intolerance and the fatigue and weakness. This is why I need the TSH antibody test.  That would show if I am suffering from tissue level hypothyroid, which would show TSH in my tissue and would explain a normal TSH blood test. I know you are trying to help and you obviously don't know the numerous doctors I've seen and tests I have been through over the years, such as RA, Lyme and even HIV. I am also a cancer survivor, so have had several PET scans, which rule out a multitude of other illnesses. When I called my GYN a few days ago to schedule an appointment, the nurse asked me my symptoms.  When I told her, and I did not mention anything other than my symptoms, she said I need to be evaluated by an endocrinologist and that it sounds to her like hypothyroid.  My cardiologist also said the same thing.  I mean, maybe it's not hypothyroid, but to have 20+ symptoms of it and not have it would be pretty shocking to me.  I guess time will tell.  What makes me upset is that a simple antibody blood test would either confirm it or rule it out and I have to fight, in my condition, to try to get it, and who knows how long that will take. sad  Thank you so much, again, for your thoughts, Melissa! I am still keeping an open mind. cheesygrin  Oh, and btw, the GYN wants me to come in Tuesday and is going to see what she can do to help me.  She said I need to find a new PCP.

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    • Posted

      Yes.. it's true that when experts say that you go so long with hypothyroidism that it can become disabling.  This is because untreated hypothyroidism over many years will just raise your TSH higher and higher to the point where you can go into myxedema coma.  You can actually die from this.  But.. it's very rare, as people would seek treatment by this time.  I also want to mention that your TSH is normal, so again, it will not cause you the need to be cared for by other people.  It's all in the TSH level.  Now.. you may very well have Hashimoto's, but there is no symptoms from the autoimmune disease itself.  Hashimoto's can cause flares, which can cause symptoms of hyperthyroidism or hypothyroidism, but this in itself, will cause an increase or decrease in your TSH levels.  Hashimoto's itself is not a disabling disease, which is why doctors do not treat it.  With a normal TSH, you cannot have hypothyroidism.  Now.. if it is at the top range of normal, there is a possibility of a very mild hypothyroidism, but that will cause mild, subtle symptoms.  Also.. the temperature thing is not accurate.  My temp is always 97.0 or lower and I have treated hypothyroidism and feel great.  I would also like to mention.. try to do your research from actual research papers on the net.  Stay away from websites that sell vitamins, supplements and books, as they are very inaccurate and are just trying to make a profit.  I cannot name good ones, nor a list of the ones to stay away from, as this forum does not allow it.  Just remember.. if they are selling anything at all.. stay away.  Anyway.. I feel for you, I really do.  I'm not trying to sound harsh.. but it does not sound to me like your symptoms are from hypothyroidism, as your TSH is normal.  Also.. say if you have Hashimoto's.. they don't treat you for it.  Only some people actually go on to develop hypothyroidism.  So, you looking for that diagnosis of Hashimoto's, will not get any doctor to give you thyroid medication.  I'm sorry you are suffering.  Now again.. this is all just my opinion.. maybe your right and it's your fibro that's amplifying your symptoms of would be mild hypothyroid, to debilitating?  Not sure.. I do know that something is not right and you just need to keep seeking treatment and answers.  If a doctor will not run the test you want.. then find another one.. and keep pushing.  You should not have to suffer the way you are, so just don't give up..

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    • Posted

      Hi Melissa,  First, I don't think you are sounding harsh at all.  I really appreciate all of your candidness, input and advice!  As far as my research, I do get my info from sites such as national health institutes and uni versities. So what I am understanding from what I have researched is that you absolutely CAN have hypothyroid and your TSH blood test come back within normal range, because you could be hypothyroid at tissue level for one, which I think is my case.  And this is not mild, this is seveve at this point. But here is just one thing I found right from a reputable medical site: "a normal TSH may be recorded in patients with profound hypothyroidism secondary to pituitary or hypothalamic disease, a remediable condition that may have serious consequences if not recognized; hyperthyroidism may also be associated with a normal TSH due to pituitary tumour, thyroid hormone resistance, or assay interference."   Also, I want to mention that you said most people would have sought treatment if there symptoms became very severe.  I have been seeking help for years!  I have been to dozens of doctors and many hospitals many, many times with severe symptoms.  It all gets so tiring. This has been such a nightmare. I also want to mention that I didn't set out for a diagnosis of Hashimoto's or hypothyroid to get on medication. I was suffering what I thought was another Fibro flare-up that was so bad this time that, once again, I decided to research online for ways to help myself and came across information that led me to research info on TSH/thyroid. I am just looking for a PROPER diagnosis, rather than being treated for the wrong one for years. I'm discouraged to hear, that from what you are saying, there is no treatment if I am correct and it is hypothyroid due to Hashimoto's, but at least I will be diagnosed correctly. With that said, from everything I have read, it says it is very important to get an early diagnosis of Hasimoto's as it can prevent the disease's progression. Bad news for me, if that is what I have as I have had it for a very long time. Another thing I want to mention is that I also have symptoms of hyperthyroid...actually, when all of this started years ago, my first symptoms were heat intolerance, fast heart rate and excessive sweating.  Now I go back and forth between the two, but mostly hypo. And maybe you are right that I do actually have Fibro, too, and it is amplifying my symptoms of hypo. I guess I just have to keep fighting the system until someone will listen and do the FULL thyroid tests to rule it out.  But honestly, I will be shocked if I am wrong about this and my thyroid antibody tests all come back normal.  The hard part is, that the referral for an endo has to come from my PCP and to get an appointment with a new PCP will take 6 months and they may not even agree to give me one. I wouldn't wish this on my worst enemy. That said, I do have an appointment with a new GYN (mine left the area) on Tuesday and I'm hoping she will have some kind of pull and be able to help me get the referral from my PCP.  Thank you so much again for taking the time to reply and for being so sympathetic to my situation.  It means a lot to know someone out there cares. 

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    • Posted

      The quote you stated is about pituitary diseases as a cause of hypothyroidism.. not Hashimoto's.  I'm sorry I have no other advice for you, except to not give up, keep searching for answers and stay strong....  Best wishes to you..   

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    • Posted

      I read the research paper.. and that website is the same one I get all mu info from..  It's a good one.  These are other quotes from the same paper...  "The finding of raised or undetectable serum TSH with thyroid hormone concentrations within their reference ranges is not usually associated with symptoms, hence the basis for the unsatisfactory terms subclinical hypothyroidism."

      "In contrast, patients with non-specific symptoms of hypothyroidism and unequivocally normal T4 and TSH concentrations do not benefit from treatment with thyroxine."

        The quote you stated is about pituitary disease and how it can lead to hypothyroidism with a normal TSH.. That is correct, but then the T3 and T4 would be low and the TSH will most likely be low too, except in a handful of cases, which their talking about, in which the TSH may stay in the normal range.   If you have pituitary disease.. your doctor would most likely know,  just looking at you, as it causes physical changes.  I Just thought I would clarify on the study you shared...  But hey.. maybe you can look into getting tested for pituitary disease?  It may be a start..

       

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    • Posted

      Hi Melissa, sorry for not replying sooner.  I feel awful and have been laying in bed and sleeping a lot.  I did read everything the doctor said on this subject. He also mentions hypothalamic disease and several other things later on in his duscussion as reasons for normal TSH while still being hypo. I only grabbed one small section just to simply show you that, with all do respect, that you were incorrect when you said you can't be hypo and have normal TSH levels.  That said, I love that doctor and all of his articles, too especially because he replies to all of the readers' comments even if he doesn't have the answer or can't answer.  That said, of course I don't have all of the answers yet about what is going on with me.  I do know that I have all of the symptoms of hypo, as well as some hyper.  I go from freezing cold to the bone and can't get warm, to suddenly overheated and profusely sweating, and then that fast bounce back to freezing cold again, while soaking wet.  And actually, when this all started years ago, my symptoms started out as hyper.  Heat intolerance, rapid heart rate, shortness of breath, etc... Which is why I believe I might have Hashi's. Anyway, I am just researching so I can get the proper diagnosis since the doctors are obviously not going to figure it out on their own and I am suffering. It's a shame that the doctors went to school and get a nice paycheck and I am sick and on disabilty and have to do all the research to try and get a proper diagnosis to feel better. 

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