Discussions By Condition: I cannot get a diagnosis.

Possible Thyroid problem?!?! Please HELP!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: fishingwoman22
  • October 26, 2009
  • 04:34 AM

Hi I am a 23 Year old female who has been having an extremely hard time to get a diagnosis about what is wrong. When I was 9 years old I got my first menstral cycle, they were fairly regular. Ever since I was 13 and had the surgery I have had low but not under the standard thyroid tests basically borderline. As the years have past I have been getting more and more symptoms and no one can seem to help me is there a special type of endocrinologist or other doctor to help me. I am at my last nerve and I dont know what or where to go from here. I live it the Chicago-Metro area or even Milwaukee area. I need help desperately. Please help me go in the right direction.
Symptoms:
Alopecia (hair loss)
Lethergy
Insomnia
Fatigue
Tachycardia
Feeling of weakness
Dry skin – no matter what lotion i use
Brittle nails
Inablility to handle heat (any temperature above 65 degrees Fahrenheit)
Memory impairment – short and long term
Irregular menstrual periods
Weight gain & inablility to lose the weight
Severally decreased libido
Muscle Cramps & muscles always aching
Diarrhea at least 2x/month minimum
Voice gets horse after 7pm
Dry puffy skin on face
Slow speech, especially in classrooms, on the phone etc
Craving of : chocolate, carbs and sports drinks
Easily having bloodsugar in 80 and below
Difficulty swallowing
Shortness of breath
Always the feeling of needing more sleep. Even after 8 hrs
Irritablity
Panick Attacks
Inablility to handle stress
Decreased sense of some smells
Sever Sweating all year round
Extremely Sensetive skin
Blotchy Skin rash

On top of all of this I have Fibromyalgia. There is a extremely STRONG history in my family of thyroid disease/problems. My mother had 1/3 hot, 1/3 cold and 1/3 normal. My moms Thyroid blood tests all came back normal like mine but once they did the iodine test they found out that it was the problem. I have tried 5 endocrinologists in my area and I am getting really frustrated with their basic nothing is wrong with you or the P.C.O.S. story! Which fits some symptoms but not all I have low levels of testosterone, which you dont get if you have pcos.
If anyone has any doctors, clinics or hospitals to go to or any ideas I would truly appreciate it! I am extremely desperate! :confused::confused::confused::confused:

Reply Flag this Discussion

8 Replies:

  • First of all, after seeing 5 endocrinologists, I would assume they have done FULL thyroid testing including TSH, as well as testing T3 & T4 levels.Secondly, I am always suspicous of a Fibromyalgia diagnosis which I believe is a clinical diagnosis - it's something they diagnose when nothing else can be found. However, I am NO medical professional & I do believe fibromyalgia is sometimes a legitimate diagnosis. Thirdly, I think "some" of your symptoms could be panic driven. Unfortunately I have experience with an illness that not even Mayo has been able to diagnose - and I also know about anxiety & panic. I also have a thyroid disorder. There was one symptom that caught my eye, and that was your skin rashes. The first thing that popped into my mind is Lyme Disease which would account for a lot of your symptoms (see - http://arthritis.webmd.com/tc/lyme-disease-symptomsI think the best bet would be to see a good Internal Medicine Specialist - preferrably at a big medical center or teaching hospital. Go prepared with dates it started, doctors you've seen, tests you've had, symptoms, medications you might take, and any question you can think of. And you should keep a diary as you go along - it can be good reference if your journey back to health takes a while I learned this the hard way when I went to Mayo thinking they would just be able to figure out what was wrong....then having only 20 minutes with a specialist & not remembering what I wanted to ask or not being able to answer questions they asked me such as, "When did this symptom start? What doctors you have seen tests you have you had" etc. I swore I would not go back on this Forum again. I've researched it so much for myself with no answers & it only creating more anxiety. But, I couldn't help myself when I read your post. With a Username like fishingwoman & living in the Midswest, I thought it wouldn't be a stretch that you spend lots of time outdoors and could be subject to this disease. Hope this is of some help. I have a daughter older than you & would want someone to try & help her. Hi I am a 23 Year old female who has been having an extremely hard time to get a diagnosis about what is wrong. When I was 9 years old I got my first menstral cycle, they were fairly regular. Ever since I was 13 and had the surgery I have had low but not under the standard thyroid tests basically borderline. As the years have past I have been getting more and more symptoms and no one can seem to help me is there a special type of endocrinologist or other doctor to help me. I am at my last nerve and I dont know what or where to go from here. I live it the Chicago-Metro area or even Milwaukee area. I need help desperately. Please help me go in the right direction.Symptoms:Alopecia (hair loss)LethergyInsomniaFatigueTachycardiaFeeling of weaknessDry skin – no matter what lotion i useBrittle nails Inablility to handle heat (any temperature above 65 degrees Fahrenheit)Memory impairment – short and long termIrregular menstrual periodsWeight gain & inablility to lose the weightSeverally decreased libidoMuscle Cramps & muscles always achingDiarrhea at least 2x/month minimumVoice gets horse after 7pmDry puffy skin on faceSlow speech, especially in classrooms, on the phone etcCraving of : chocolate, carbs and sports drinksEasily having bloodsugar in 80 and belowDifficulty swallowingShortness of breathAlways the feeling of needing more sleep. Even after 8 hrsIrritablity Panick AttacksInablility to handle stressDecreased sense of some smellsSever Sweating all year roundExtremely Sensetive skinBlotchy Skin rash On top of all of this I have Fibromyalgia. There is a extremely STRONG history in my family of thyroid disease/problems. My mother had 1/3 hot, 1/3 cold and 1/3 normal. My moms Thyroid blood tests all came back normal like mine but once they did the iodine test they found out that it was the problem. I have tried 5 endocrinologists in my area and I am getting really frustrated with their basic nothing is wrong with you or the P.C.O.S. story! Which fits some symptoms but not all I have low levels of testosterone, which you dont get if you have pcos. If anyone has any doctors, clinics or hospitals to go to or any ideas I would truly appreciate it! I am extremely desperate! :confused::confused::confused::confused:
    Jean Marie 38 Replies
    • October 26, 2009
    • 06:32 PM
    • 0
    Flag this Response
  • contact me at jules.dilling@googlemail.com i think i might be able to help most of my symptoms are the same as yours i live in the uk i am 52 years old my symptoms started 30 years ago when i was 22 i'm not going to give my life story here if you contact me on the above email address i will try and help you because i have no diagnosis but i can give you how far i have got in my quest to be normal.if the doctors in your country are the same as here because here un less you truly have an underactive thyroid then you wo'nt benefit from thyroxine but i can tell them otherwise you've had this for 10 years i don't know how bad your muscles have got but if you have the same as me 2 years ago i was so weak i couldn't sit in a chair and lift my legs out straight in front of me so iam hopeing you will see this because i don't want your life ruined like mine has freddie
    freddie 1 Replies
    • November 4, 2009
    • 01:25 AM
    • 0
    Flag this Response
  • Jean Marie - thank you for replying & caring enough to reply to me! I have been tested for lyme disease already twice and they have both came back negative. The thing is, is that I have had the majority of these symptoms for years and no doctor can give me a diagnosis! I only know the proper terms for this because I have researched a lot and so has quite a few of my family members, they along with myself all believe there is something wrong on the hormonal level. With the history so strong in my family of hormonal problems it is hard to think its not a contributing factor. My mother had a combination of thyroid problems, starting with having 1/3rd hyperthyroid, 1/3rd normal and 1/3rd hypothyroid, she had extremely similar problems and her OB-GYN diagnosed her and regrettably he has since retired. She saw over 10 endocrinologists before her doctor figured it out. I know fibromyalgia is a catch-all diagnosis but it does explain the extreme pain which morphine didnt even help! Right now I am so frustrated at all of these medical problems and not being able to remember things that I cant get on with my academic career and yet I cant work because if I do I hurt and I cant remember anything. Im only 23 years old and I am trying to just get on with my life but it is hard if you cant remember things (short term or long term). Ive seen a nutritionist and she concluded that nothing is wrong with my diet or my exercise. The only thing that the doctors have not done is a complete hormone panel. I believe that is the next step that my doctor has for me. He does think that there is something wrong but he cant figure it out. He suggested me to go on here and see if there isnt someone who knows of a doctor in the midwest to help me. If anyone knows of any doctors who might be able to help me. I am willing to travel!Thank you again Jean Marie I truly appreciate you replying on my thread. First of all, after seeing 5 endocrinologists, I would assume they have done FULL thyroid testing including TSH, as well as testing T3 & T4 levels.Secondly, I am always suspicous of a Fibromyalgia diagnosis which I believe is a clinical diagnosis - it's something they diagnose when nothing else can be found. However, I am NO medical professional & I do believe fibromyalgia is sometimes a legitimate diagnosis. Thirdly, I think "some" of your symptoms could be panic driven. Unfortunately I have experience with an illness that not even Mayo has been able to diagnose - and I also know about anxiety & panic. I also have a thyroid disorder. There was one symptom that caught my eye, and that was your skin rashes. The first thing that popped into my mind is Lyme Disease which would account for a lot of your symptoms (see - http://arthritis.webmd.com/tc/lyme-disease-symptomsI think the best bet would be to see a good Internal Medicine Specialist - preferrably at a big medical center or teaching hospital. Go prepared with dates it started, doctors you've seen, tests you've had, symptoms, medications you might take, and any question you can think of. And you should keep a diary as you go along - it can be good reference if your journey back to health takes a while I learned this the hard way when I went to Mayo thinking they would just be able to figure out what was wrong....then having only 20 minutes with a specialist & not remembering what I wanted to ask or not being able to answer questions they asked me such as, "When did this symptom start? What doctors you have seen tests you have you had" etc. I swore I would not go back on this Forum again. I've researched it so much for myself with no answers & it only creating more anxiety. But, I couldn't help myself when I read your post. With a Username like fishingwoman & living in the Midswest, I thought it wouldn't be a stretch that you spend lots of time outdoors and could be subject to this disease. Hope this is of some help. I have a daughter older than you & would want someone to try & help her.
    fishingwoman22 3 Replies
    • November 5, 2009
    • 02:15 AM
    • 0
    Flag this Response
  • Have you had a TPO? Throid antibody test. I went undiagnosed for 4 years with borderline TSH etc... untill my Endo tested the antibody. I have Fibro as well and MS runs in the Family as does PCOS and other endocrine related issues.Jean Marie - thank you for replying & caring enough to reply to me! I have been tested for lyme disease already twice and they have both came back negative. The thing is, is that I have had the majority of these symptoms for years and no doctor can give me a diagnosis! I only know the proper terms for this because I have researched a lot and so has quite a few of my family members, they along with myself all believe there is something wrong on the hormonal level. With the history so strong in my family of hormonal problems it is hard to think its not a contributing factor. My mother had a combination of thyroid problems, starting with having 1/3rd hyperthyroid, 1/3rd normal and 1/3rd hypothyroid, she had extremely similar problems and her OB-GYN diagnosed her and regrettably he has since retired. She saw over 10 endocrinologists before her doctor figured it out. I know fibromyalgia is a catch-all diagnosis but it does explain the extreme pain which morphine didnt even help! Right now I am so frustrated at all of these medical problems and not being able to remember things that I cant get on with my academic career and yet I cant work because if I do I hurt and I cant remember anything. Im only 23 years old and I am trying to just get on with my life but it is hard if you cant remember things (short term or long term). Ive seen a nutritionist and she concluded that nothing is wrong with my diet or my exercise. The only thing that the doctors have not done is a complete hormone panel. I believe that is the next step that my doctor has for me. He does think that there is something wrong but he cant figure it out. He suggested me to go on here and see if there isnt someone who knows of a doctor in the midwest to help me. If anyone knows of any doctors who might be able to help me. I am willing to travel!Thank you again Jean Marie I truly appreciate you replying on my thread.
    Anonymous 42789 Replies
    • November 6, 2009
    • 01:11 PM
    • 0
    Flag this Response
  • Yes, a complete hormone panel seems reasonable, but I caution you not to zero in on one thing completely. Be open to other diagnosis or you could spend an eternity barking up the wrong tree. My thyroid disorder was very rare. The tests I had performed locally all came back normal - including the iodine & blood testing. However, the dead give away was that my eyes started to bulge which meant I either had tumors behind both eyes, or I had Graves Disease which is auto-immune and always coupled with a thyroid disorder. With tumors being ruled out, an endocrinologist finally found the problem...either a T3 or T4 imbalance (can't remember). There is a strong history of thyroid disease in my family, too. Now I will tell you a story. A woman I don't know (but we have friends in common) heard of my story of being sick and not being able to get a diagnosis. My problems are very different than yours, but similar to hers. She called me to tell me not to ever give up hope. She realized what I was going thru. For five years she had a muscle problem (and I'm sure many other symptoms) that ended her in a wheelchair and not being able to eat unless her food was ground up in a blender. I'll leave it up to you whether you give any credence to her story. She said she finally left medical doctors & went alternative. She began to be convinced she had mercury poisoning from her fillings. So she found an alternative dentist who removed & replaced her fillings - and in a few months was back to normal and has had 4 children since. She is a born-again Christian and I have no doubt her story is true...I know too many people who are friends of hers. There is huge controversy over mercury poisoning, but even the Dental Association will not make a clear statement on it. Have you ever had your hair tested? If you follow news, you will know that hair testing is used frequently by toxicologists and will show many things from what drugs you have taken as well as many other toxins. I'm a bit skeptical myself, but I cannot deny what happened to the person who called me. She is also the neighbor of my psychologist who always talked about her in the abstract - about how extremely sick she had been, but had finally recovered (he never mentioned names & was floored when I told him the name of the woman who called me). My psychiatrist also has mentioned mercury. She has many health problems herself and has considered having her fillings replaced to see if it would make a difference. She says her sister is a nurse who believes mercury poisoining could be causing problems for many people. Anyway, if you decide to test for mercury or toxins by hair sampling, you could try a Naturopath. They are the people who do it, as well as toxicologists. My daughter had it done and had some mercury in her body even tho she had her metal fillings replaced years before for cosmetic reasons and has no health issues. You have to be careful here tho as some levels of toxins are normal & don't cause problems...and an unethical naturopath might try to sell you a whole host of products which are unnecessary. I would find an alternative dentist before taking supplements IF high mercury levels were ever found - maybe even cross-check with a medical doctor. Like I said, I'm a bit skeptical....but when you are desperate & hear of people who have been helped - well maybe you'll want to give it a try some day. Good Luck in your journey. Jean Marie - thank you for replying & caring enough to reply to me! I have been tested for lyme disease already twice and they have both came back negative. The thing is, is that I have had the majority of these symptoms for years and no doctor can give me a diagnosis! I only know the proper terms for this because I have researched a lot and so has quite a few of my family members, they along with myself all believe there is something wrong on the hormonal level. With the history so strong in my family of hormonal problems it is hard to think its not a contributing factor. My mother had a combination of thyroid problems, starting with having 1/3rd hyperthyroid, 1/3rd normal and 1/3rd hypothyroid, she had extremely similar problems and her OB-GYN diagnosed her and regrettably he has since retired. She saw over 10 endocrinologists before her doctor figured it out. I know fibromyalgia is a catch-all diagnosis but it does explain the extreme pain which morphine didnt even help! Right now I am so frustrated at all of these medical problems and not being able to remember things that I cant get on with my academic career and yet I cant work because if I do I hurt and I cant remember anything. Im only 23 years old and I am trying to just get on with my life but it is hard if you cant remember things (short term or long term). Ive seen a nutritionist and she concluded that nothing is wrong with my diet or my exercise. The only thing that the doctors have not done is a complete hormone panel. I believe that is the next step that my doctor has for me. He does think that there is something wrong but he cant figure it out. He suggested me to go on here and see if there isnt someone who knows of a doctor in the midwest to help me. If anyone knows of any doctors who might be able to help me. I am willing to travel!Thank you again Jean Marie I truly appreciate you replying on my thread.
    Jean Marie 38 Replies
    • November 6, 2009
    • 07:39 PM
    • 0
    Flag this Response
  • Your eyes and mouth aren't dry all the time are they?My mother had many medical conditions but she also had most of your symptoms. The most predominant condition was Sjogrens.
    Matrim 7 Replies
    • November 6, 2009
    • 09:16 PM
    • 0
    Flag this Response
  • Your eyes and mouth aren't dry all the time are they?My mother had many medical conditions but she also had most of your symptoms. The most predominant condition was Sjogrens. I do have dry mouth but my eyes arent bad unless it is above 65 degrees fahrenheit, then its horrible. I have been checked for diabetes and im not my ac1 and others are completely normal. They found out that I am hypoglycemic with all of these tests.
    fishingwoman22 3 Replies
    • November 15, 2009
    • 01:46 AM
    • 0
    Flag this Response
  • I've just read your message on the website. I to have thyroid problems, I am 37. I was put on thyroxine in June after I felt so ill I could hardly lift my legs up. I felt that I was walking in sinking sand. They ached and swelled. My blood test prooved positive. I have had problems in the past but nothing ever came back on the blood tests I had other sypmptoms related to it including constipation, forgetfulness, stuttering and lack of energy. I even had an EEG. this has been going on for a period of 10 years or more. Last year I wanted children and was sent for scan and blood test to find out if I had a problem. They found out that I had polycystic ovaries on the scan but nothing in the blood test. I wish now I had pushed for further tests because I feel that I have had an underlying conditition which wasn't recognised at the time. They also now think I have asthma. I am now going to my GP to ask for referal for a further opinion. Donna Cunningham (UK)
    Anonymous 42789 Replies
    • November 21, 2009
    • 02:36 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.