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

Hi Dave,  The sad thing is that I was trying to get the doctors to help me before I got to this point.  But that said, I did go to the hospital at the urging of my cardiologist and two family members who are nurses, and because my basic blood work (CBC) comes back ok, they sent me home and told me to follow up with my PCP. They told me I had a virus lol...I said for 10 years?  That was Wednesday night into Thursday early morning I was released. I called my PCP Thurs. and then again Friday and still have not gotten a call back. I believe it is a doctor's duty to at least get in contact with a patient after they have been seen in the ER, especially if they contact you.  He is a new doctor.  My doctor left the area a few months ago.  So I am in a bad situation because all the other doctors in my area are booking appts for 6 months out.  That is why I picked him in the first place.  I can't wait 6 months to be seen. I had seen a woman doctor before this guy and she wouldn't even order any blood work and sent me on my way. My sister, who is a nurse, couldn't believe that based on my symptoms, she didn't order any blood work at all. Trust me, I am not exaggerating any of my symptoms.  These doctors should not be in practice. This is so frustrating.  I think that is why I finally joined a forum and reached out.  I live alone and it does help to hear what others have to say.  Thank you for you input and suggestions, I really do appreciate it! 

Hi Dave, I live in the Pocono Mountains in the United States. The healthcare system is very bad here in the US.  It has gotten much worse over the past 5 or 6 years thanks to the Affordable Care Act (ACA) put in place by our former President (Obama).  It has left our healthcare system in shambles, leaving many without any healthcare at all and the lucky ones that can afford it or are on disability and do have some form of coverage, like myself, have very long waits and get denied proper care.  I joke all the time that I am moving to Canada.  Actually, a lot of Americans admire Canada's healthcare system.  We pay between hundreds and thousands of dollars per month (depending on our income) in premiums just for basic care (Canadians get this for free) that does not include doctor or hospital co-pays, prescriptions, eye care, dental. And, if we choose NOT to or can't afford to pay for medical insurance, we get fined for each adult and child in the household up to $2,100.  It's crazy!  Worst thing to ever happen to our healthcare system and so many people with serious health conditions, like myself, are suffering. I just want a proper diagnosis, treatment and my life back! I would wait all day to see a doctor who would see me and give me a referral for an endocrinologist! 

Tammy.. I live in Pennsylvania also.  I'm not sure what you mean by people getting denied proper care..  I have never had trouble getting care and even if you can't afford health care, you can just go to the hospital.  They have to treat you there.  Being your getting denied health care, please, please, please look for another doctor.  I've never heard of such a thing.

Melissa, I am not sure where in PA you live, I used to live in Bucks County.  Anyway, you say you don't know what I mean about people getting denied proper care?  I feel my situation is a perfect example.  I am seriously sick. No one should have to live like this waiting to get help. I feel that since I have all of these severe symptoms that are impacting my ability to function and take care of myself, that I should be able to be seen sooner than 6 months, which is the wait for me to see a new doctor at this point. BUT...here is what happened: My PCP moved out of the area a few months back. I had to wait to be seen by a new PCP for 2 months and the only reason I was able to see him so soon is because he just opened his practice.  All other PCP's were booking 6 months out. Right now, the wait is until May.  So I saw the new PCP and he refused to give me an endo referral and ran basic bloodwork and told me he would see me back after the holiday even after I told him I was barely getting through each day and could barely take a shower or take care of myself. He would only listen to 3 of my symptoms also and said he would only hear 3 at each visit. The next day, I went to the ER at the urge of my cardiologist, who agreed I need to see an endo, and also at the urge of my sister and stepmom, who are both nurses.  The ER said that my PCP already ran basic bloodwork except CBC and urine, so they would do that, but that was all they were willing to do.  They ran it, said it was fine and that I have a virus. LOLOL!!!!!  I had no fever, no vomitting, no diarrhea, no symptoms of a virus at all and that is what they sent me home saying and said to call my PCP back.  So I called my PCP back that day (Thurs) and waited for a call back.  Nothing.  Called Friday and it was an answering service that said he was out until Monday and I told her that I had called and was seen in the ER and he never even called me back. I told her to please leave the message again, gave her my number and told her to write down that I was seen in the ER.  That was Friday, this is Tuesday and he still has not called me back.  So now I know he is a negligent doctor.  Great.  That leaves me to find another doctor and wait until May to be seen for all of my other health issues and medication I need to take regulary and have refilled.  How is that proper care?  I did see a new GYN today, barely made it there.  She can't believe the doctor wouldn't give me an endo referral with how I look and all of my symptoms.  So she gave me one, but said they are booking 5 - 6 months out.  Again, how is that proper care, when I feel like I'm barely clinging here?  Finding a new doctor will not get me the proper care.  Getting me treatment pronto is what I need. I consider myself tough.  I have been through a lot in my 47 years.  I beat cancer at 29 years old and had several major surgeries over 6 years and chronic lifelong conditions from the surgeries that I have to deal with. Then I had several major knee surgeries that failed, causing me RSD/CRPS and have a knee that now dislocates and causes me excruciating pain until I can get it popped back into place, sometimes taking over a half an hour. (I need a total knee replacement) And that is just a tip of the iceberg of what I have endured. I am telling you this because I have suffered with all of this for a long time, but what I am going through now is beyond anything anyone should ever be expected to even live with for a few days and it's been ongoing, continuously, for a month at this point and I'm not sure how much longer I can hold on. So by no means am I getting proper care.

I'm actually not far from you at all..  I live in Luzerne county, in Hunlock Creek.  It's terrible how long the wait times are there to get in, just to see a doctor, from where your from.  It's a shame really...  Especially when you have felt so bad, for so long.  It's just hard to fathom why no doctor is helping you already.  Please don't think that I didn't believe you.. I do believe you, it's just sad.  You know your body best, better then any doctor even, and you know something is wrong, but no one will help you.  I feel really bad for you, as that is no way to live.  Oh.. and I also wanted to mention that your right.. there is definitely a possibility that you have hypothyroidism.  I just think that being your TSH is normal, that it's possible that the fibro is what's causing you to have more extreme symptoms of hypothyroidism.  I mean, I would imagine it's possible.  To feel so bad already and then another condition thrown on top of that, would feel like being hit by a truck.  Have you ever been tested for Lupus?  Especially with Hashimoto's, there would be a high chance to get even more autoimmune diseases.  They say that once you obtain one autoimmune disease, that you will most likely be diagnosed with 3 all together in one's lifetime.  In my opinion, I think that you do have Hashimoto's, based off your ultrasound report, so it may be worth asking your doctor for an ANA test, well.. once you finally get in to see the doctor anyway.  If that is positive, then they would run more test to pinpoint what is antibody is making the ANA positive.  Also.. being your PA, have you looked into Lymes disease?  PA has the highest Lymes disease rate then any where else in the world.  It's just a thought.  Just try to be prepared with a list of your symptoms and a list of test that you think would benefit you,based on your symptoms,  when you finally get in to see the doctor.  With such long wait times, make the most of it.  Be stern with the doctor, but polite, and make him listen to you.  Remember.. your paying him and you hired him.. not the other way around, and if he won't listen, fire him and find another doctor who will listen.  Best wishes...

Melissa, I'm so sorry.  I just read my message again and it probably does come off a bit wrong.  I didn't mean it to come off any certain way or for it to sound like I thought you think I am lying.  I don't think that at all.  You questioned about proper care and said you had never heard of it, so I was just trying to answer. So now you've heard of it! lol  Anyway, I hate "text" communication sometimes for this reason.   And also, I didn't end my reply properly, or should I say the way I usually would have and I apologize.  I was just exhausted and my brain was burned out when I wrote it. You asked if I have been tested for Lyme, I have.  I was also tested for RA.  Not sure about Lupus, but if I had to guess, I'd say yes, because it seems I have been tested for everything, BUT Thyroid disease. If I asked this before, I apologize, but do you have Hashimoto's? Hypothyroid?  Both? I'm really not sure if I am hypothyroid, because I don't understand how it all works with the tests and TSH levels, etc..., and being my TSH is normal, but I know I have every symptom in the book.  I do think I have a strong chance of having Hashimoto's though and maybe you are right and maybe the Fibromyalgia flares up and the combo is what is so bad. But I still am unsure how that all works because with a normal TSH even having Hashimoto's I don't think I would have symptoms from what I have read.  All I know is whatever this is, this is so bad at this point that if there is no treatment for it, well ... it's just so frustrating! I  plan to find a new PCP.  I've been looking, but there aren't many to choose from, unfortunately.  Many are leaving the area.  I will keep fighting until I get answers though.  Hopefully, this flare-up will end soon.  It has never been this severe, nor has it ever lasted this long (ususally lasts a week or so). So, enough of that.  You live in Hunlock Creek?  We are closer than you might think.  I'm in Luzerne, too!  Right near Conyngham near the Penn State campus in West Hazleton.  Small world!  Have you always lived up this way?  Btw, get ready for a cold and snowy winter from what I am hearing.  Thank you so much for taking time to reply to all of my messages. You've been a lot of help and I really do appreciate it!!  

Hello Ebony!  I don't have access to my blood work just yet.  I am in the process of trying to get it.  So I can't answer your questions.  I haven't been diagnosed with anything yet other than Fibromyalgia, back in 2010.  I eat a very strict diet though and my blood work came back fine according to my doctor and the hospital, including my TSH. But after doing a lot of research, basic TSH tests are not enough to know whether I am suffering from Hashi's and/or hypo/hyper.  I need to see and endocrinologist and my PCP won't give me the referral I need.  that is my dilhemma. I know my body and have been fighting with doctors all these years over all of my symptoms and they all shrug their shoulders or give me some other reason for my symptoms.  But this all makes sense now and I truly believe I am right about this!  I just need a doctor to actualy listen! It's a shame they let me get to the point where I can barely even take care of myself now. I'm trying to keep the fight in me, but it's hard at this point.  I just have to hold on a little longer.  I see a new GYN on Tuesday.  The nurse spoke with me Friday and asked my symptoms and right away said I need to see my family doctor for an endocrinology referral.  I told her I already went and asked for one and he denied me saying nothing warrants one and she couldn't believe it.  She had a cancellation for Tuesday and put me right in and said we will see if the doctor here can help in any way get you that referral.  So I am praying so hard she is the answer to my prayers.  Thank you for replying and for your concern.  Once I get my labs, I will let you know what my TSH level is and once I get a diagnosis I will certainly look into the gluten free diet.  I have read about that already and totally believe in it as it makes a lot of sense.  Apparently, gluten closely resembles that of thyroid tissue. When your immune system reacts to gluten it can erroneously react to the thyroid tissue as well, which causes the immune system to attack and destroy thyroid tissue. I also read that your body can mistake dairy for gluten and trigger an immune reaction that also ends up targeting the thyroid. I never had issues with eating things with gluten or dairy products UNTIL around the time all of this started years back. I never understood why.  Now I do!  Do you have Hashimoto's and/or hypothyroid? 

You should try gluten free now as it takes about six months until you see all the affects. You need an antibiodies test to see if your Hashis. You also need to educate yourself on your condition. No use expecting your Doctors to know. It’s a lesser know demosease even her in the UK. Iysbhood yoi know an Endocrinologist appointment is needed but even they specialise in Diabetes so may not be any good. Sorry to be so negative but if it’s yaken you ten years and a little research I feel I should point out what is obvious but not thought of. Most doctors don’t know. Better to go in armed with research than listen to him if your gut says differently. 

90% of Hypos are Hashimotos. If you van lost your bloods and anti hoodies test I’ll tell you if you have Hashi and can suggest what you need to do and get. You also should get your vitamins levels checked. You need high strength Vits and supplements. No multi vitamins.  

Also as you’re in the states do they test for foliate, ferritin, iron, B1/?

Thank you for the info Ebony!  I have done a lot of reasearch on gluten, dair, eggs, etc...already.  I eat a very "clean" diet already.  I was finally able to get a referral to see an endo, but am told it could be a 6 month wait.  I just want to know if it is or is not Hashi's.  If it isn't I need to find out what it is so I can get treated.  Whatever this is, being untreated cannot be good.  This is debilitating. I am not sure they check for those things here in the States..I have never seen them on my labs. As far as my TSH levels, they are all normal according to my doctor.  This is a nightmare, really.  Doctors are a joke in my book.  Too many bad experiences with them.  Again, thank you for your advice, I really appreciate it!!