I feel bad about posting this thread here, because when I think of disabilities I think of others with more physical problems than myself. But I’m at wits end trying to get my family doctor to listen to me. I’ve been battling fatique, memory loss, hands shaking, weight gain, dizzy spells, trouble concentrating, etc. for well over a year now & it just seems to be getting worse. I’ve been diagnosed with hypothyroid by my family doctor & he has me on a very low dose of Levothroxin. He’s run a gamut of tests lately to find out why I’m so tired, such as a lymes test, tests for lupus, hepatitis, diabetes, anemia, etc. I’ve worn a heart monitor because my heart rate was so low but everything there looks okay. Now he’s sending me to a sleep specialist and told me basically in a nut shell I should be happy I’m this healthy that I need to do cardio exercise. WTH?!!! I wanted to just cry, I had to beg him to do the lymes test, which came back negative & now I’m pleading with him to give me a referral to see an endo doctor so I can get a second opinion but he won’t give it to me. I just don’t know to do anymore, I’m stuck without a referral. Does anyone have suggestions for a good thyroid doctor near Windsor, PA? Any advice at this point would be greatly appreciated.
I don’t have a doctor recomendation for you, but as someone who’s battled endocrine disorders for years, I have a resource for you:
http://addisonssupport.com/index.html
Although the site it geared for sufferers of Addison’s disease (adrenal insufficiency), if you search for “hypothyroidism” you will find a wealth of information and further links. It was on this site I learned about T3 only therapy which literally has brought me back to life.
Please PM me if you want to talk further, and best wishes to you.
mysaygrace
I am in the same place as you except have been complaining about extreme fatigue for about 8 years now. Doc keeps saying thyroid normal, just lose weight. DUH! Its hard to lose weight when you are too tired to move! Just a catch 22. I am also being sent for a sleep study. You should definitely do it.
Also, don’t know how old you are, but perimenopause can also cause similar symptoms. You might want to go to your gyn and have them run a hormone panel on you.
Good luck to you
OP, I feel the same way you do. I was recently diagnosed with Hashimoto’s Disease and started on a 75 mg Synthroid daily. I also have Latent Auto Immune Diabetes in Adults. Until the last few years I had no idea about any of this and bulldozed through life at 90 to nothing until a month ago I spent a week in the hospital with viral meningitis and shingles. Now walking out to the barn is a major challenge, who knows when I will ride again.
Disability means different things to different things to different people, and I have always hated the word. However, lately I am being forced to accept my limitations and learn to manage them and work around them if I am ever going to get back to living my life.
If you do get to an endocrinologist, ask them to test you for the antibodies for Hashimotos.
Thank you everyone for your advice, I truly appreciate hearing from you & it’s comforting to know others going thru similar experiences.
Downen - Thank you for your offer to PM you, I just may take you up on that offer! I wish the doctor could make a black & white diagnosis but it seems the thyroid is quite complex & the more I read up on all the various thyroid problems the more overwhelmed I feel. I go thru periods of being frustrated, then sad, then angry & then so tired I just want to go to bed for a few days. I will definitely keep your kind offer to email you in mind, thank you!
Arabianstock - what a lovely user name! I too have arabs! Gosh I can’t imagine fighting fatigue for 8 years! I sure hope we can get to the bottom of this before 8 years goes by. Yes, I’m definitely going to do the sleep study, I’ll take & do any test right about now just in hopes they can soon fix me. Perimenopause could maybe be an idea, I’m 38, so maybe that’s another suggestion I can run by my gyn/Ob. I certainly hear you about the whole exercise deal, I’m 5’ 5" and a solid 148 lbs. my weight has been a constant struggle the past year, not that I’m overweight but I have to constantly monitor my food intake & even then my weight keeps creeping up.
Jaegermonster - Right now I’m taking 25 mcg of Levothyroxin & he won’t budge on the dosage as he says anything more he’d be over treating me as my levels show I’m normal with this dosage. The Levothyroxin might as well be a sugar pill for all I care, I still have major symptoms. You mention about accepting your limitations & learning to manage & work around them, oh how very true! Every weekend I just crash & sleep for several hours during the day. It’s like I try to hold myself together to get thru the work week then allow myself to just collapse come the weekend. I’m lucky though as I can still enjoy my horses & ride. But after I get back from a lesson or trail ride I’m just totally spent for the rest of that day. It’s so hard to try to explain to friends & family because they don’t understand it fully. On the outside I appear healthy but on the inside I feel like crap most of the time. Some people then say well you just need to eat better or exercise - I wish it were that simple! I am not a lazy person but my doctor has made comments leading me to believe that he thinks I am. He’s also mentioned maybe I have unrealistic expectations of where my energy level should be, that maybe I’m doing too much, but in the same breath he’s saying I need to work in cardio exercise. If I’m that out of shape would my resting heart rate be 60 and my blood pressure be 90/64? Some days my blood pressure drops so low I get dizzy just sitting still & my hands shake, but I guess exercise is suppose to fix all that ails me according to my doctor!
Thank you everyone who has gotten back to me on this, I truly appreciate you taking the time to give me your advice. I hope everyone is on their way to a healthy life soon, take care, Lisa
To everyone who is not feeling well on Thyroxine…
DO NOT SETTLE FOR FEELING LIKE CRAP! After I was diagnosed with Addison’s disease, my endo thought everything was fixed. But I continued to have severe hypothyroid symptoms (I have Hashimoto’s, as well). I gained weight, my hair was falling out, I was sooo fatigued, and my joints ached like a 90 year old’s. All this time, my blood tests showed I was “normal.” When my endo refused to let me try Armour thyroid, I fired her and found a much more open-minded GP. The Armour wasn’t the answer; T3 only therapy was. After about a year of taking sustained release T3 (no thyroxine), we now have me fairly balanced. I take 80 mcg sustained release T3 in the morning, and 75 mcg thryoxine at night. My labs show that my T3 and T4 are absolutely NORMAL, despite the fact that my TSH is NON-EXISTANT (less that .1). I am feeling better than I have in decades, and have started showing again, completing my first CT in 20 years last weekend. I couldn’t have done that 2 years ago. I encourage anyone who is not getting results from their thyroid meds to go to www.stopthethyroidmadness.com. GREAT site, lots of info, along with the site I recommended above for adrenal problems.
The key here is to FIGHT FOR YOUR HEALTH! Doctors, particularly endos, are getting very lazy and will not pursue treatments that are “out of the box.” The problem is, we are not all in the same box. They seem to think that we should accept the fact that at 50, we will be washed up, fat, with thin hair. Well guess what docs! I’m showing again, not (too) fat, and my hair is coming back in! I have quite a few doctors I would like to thumb my nose at right now, particularly the one who tried to prescribe me anti-depressants…
mysaygrace
your blood pressure is JUST BARELY in the “normal” range. it is very possible that you are experiencing difficulties due to low blood pressure. This pressure may be too low FOR YOU. I would ask for a referal to a cardiologist if I were you. And if your pcp won’t give you one, I would look for a new pcp.
good luck
Low blood pressure is also a sign of adrenal insufficiency. Mine was 80/50 prior to diagnosis, and dropped when I stood up. Blood pressure which drops upon standing is Orthostatic Hypertension. On your next exam, make sure they take your BP sitting AND standing and compare the numbers. They can’t ignore you if you’re clearly orthostatic…
Arabiansrock - I like your user name also!! We have 3 arabs, an arab/appy & a paint, but I LOVE my arabs!! Yes, my blood pressure is usually low & actually the last time I was in it was 90/64, the highest it’s been in a long time! But maybe that’s another avenue to look into, that my blood pressure could be the culprit of my problems, wouldn’t hurt to get a cardiologist involved & who knows maybe they’ll be more open minded about treating thyroid disorders or could send me to a doctor that can help.
Downen - Yes, when I get up in the morning & sit up I have to sit on the edge of the bed for awhile because if I get up to soon I about fall over. Bending over I get dizzy & sometimes things go black for a few seconds. I will DEFINITELY make them take my blood pressure sitting & standing next time. I’m going to see my sister who is a physician’s assistant this weekend, I’ll ask her to bring her blood pressure cuff along & have her check it too. I have my paperwork for my next round of blood work and the only boxes doctor has checked are Anti Nuclear Antibodies Screen, TSH test & Free T4, but after getting on the wonderful site (stopthethyroidmadness.com) you recommended I saw I should also be tested for Free T3 at the very least. I’m considering going online & ordering one of those salvia tests, but to tell you the truth I’m doubtful I’ll be able to make heads or tails of the results. I’m going to call the doctor’s office today & see about adding the Free T3 to my blood work. Yes, I guess I’m going to have to stand up for myself & start fighting for my health.
Thank you again everyone for all your advice! I’m taking lots of notes & today I’m also calling the pharmacy that does compounding meds & asking if they could tell me what doctors prescribe different thyroid meds in hopes I can that way find a doctor that may be able to help me, this was suggested on the one thyroid site as a way to find experienced thyroid doctors, sure hope it works.
[QUOTE=mysaygrace;5669044]
, that my blood pressure could be the culprit of my problems,
Blood pressure deviations are a symptom of a problem, not usually a problem in and of themselves.
I’ll ask her to bring her blood pressure cuff along
I own my own blood pressure cuff and monitor my BP regularly, as well as my heart rate. They aren’t too expensive.
the only boxes doctor has checked are Anti Nuclear Antibodies Screen (this will tell you if you have Hashimoto’s (autoimmune hypothyroidism) but usually doesn’t affect your treatment, TSH test (this test is pretty useless unless you are a very straightforward case, which it does not sound like you are) & Free T4 (only helpful when you can compare it to your Free T3. In my case, my T4 and TSH were “normal” but my T3 was in the low range, indicating I wasn’t converting Thyroxine)Free T3.
Very important to get BOTH free T3 and T4. Most people feel best if both are at 50% or better of the normal range (lab ranges vary). ALWAYS get a photocopy of your labs and start keeping a file, it will come in very handy in your journey of diagnosis and managing your own health. You might also ask for an electrolyte panel… low sodium and high potassium could indicate your adrenals aren’t working properly, which would directly affect your thyroid.
I’m considering going online & ordering one of those salvia tests
I wouldn’t waste your money, too many variables. Best to find a doctor who will work with you, and order the tests you ask for.
but to tell you the truth I’m doubtful I’ll be able to make heads or tails of the results.
Don’t get discouraged, I’ve been where you are, and it’s very hard when you have low thyroid brain fog to sort this all out, but if you are determined to make a better life for yourself, just keep reading over the information until it starts to take. There IS help out there!
I’m also calling the pharmacy that does compounding meds & asking if they could tell me what doctors prescribe different thyroid meds
Great idea! Also, keep an open mind about general practitioners, which is what my doctor is. My endo wasn’t quite open-minded enough to pursue the therapy that ultimately changed my life. [QUOTE]
Try Dr. Fam (Famuyiwa Olufunsho) with Wellspan Endocrinology. Best endocrinologist I know of in the York area.
[QUOTE=alspharmd;5669273]
Try Dr. Fam (Famuyiwa Olufunsho) with Wellspan Endocrinology. Best endocrinologist I know of in the York area.[/QUOTE]
2nd Dr Fam 
I would be very interested in arranging an appointment with Dr. Fam, did you need a referral when you went there? My Dr. is refusing to give me a referral at this point to see an endo Dr. because he feels my condition doesn’t warrant it. I may have to fire my Dr. but then I’m back to square one getting into a new family practice and trying to get a referral from them. Thank you for letting me know you like Dr. Fam!
Talk your way in! Be strong and persistant, but kind with the office staff. My doctor wouldn’t give me a referral either, but I talked my way into an endo’s office without one and got my Addison’s diagnosed. Good luck, and keep us posted!
[QUOTE=downen;5669581]
My doctor wouldn’t give me a referral either. . .and got my Addison’s diagnosed. [/QUOTE]
I hope you reported your non-referring doctor to an appropriate agency.
I don’t think it would have gotten me anywhere. I had a very rare disease, was not in immediate crisis, and my labs were in “normal” range. It was a matter of me knowing something was wrong, and pushing for the answer, but it was far from obvious, and I doubt any fault would be found on the doctor’s part. However, I would have loved to file a complaint against the Rhuemetologist who not only wouldn’t refer me to an endo, but told me, “Relax, it’s not like you have cancer!” Then he laughed at me (I was crying) and prescribed me anti-depressants, which I wouldn’t take. I settled for telling him off over the phone after I was diagnosed. Doctors can really suck.
Oh Downen that’s horrible your Rhuemetologist was such a jerk. Yes, doctors do suck sometimes! My Dr. said “it’s not like you have a serious condition” I said “yes, but I’m not going to just settle to live my life like this either.” Last visit he was hinting around about depression too, heck if I do have depression it’s only because of the way I feel and the frustration of dealing with him! I’m really relieved to hear others stories on here, it makes me feel stronger to stand up for myself that I’m not nuts. I was starting to doubt myself & think maybe I have to just accept this is the way it’s going to be from now on.
Sounds like your doctor is trying to tell you the same thing mine was, just settle for feeling like garbage. I’m sorry, just because I’m 50 yrs. old, it doesn’t mean I’m done living! With the proper treatment (NOT anti-depressants), I’m back riding, and training a younger horse, and I’ve just started jumping him. So thanks for nothing, doctors, if I hadn’t taken control I might be house-bound by now…
You keep fighting!
I have my paperwork for my next round of blood work and the only boxes doctor has checked are Anti Nuclear Antibodies Screen, TSH test & Free T4
You also need an anti-thyroid antibody test.
My docs kept putting me off because my thyroid levels were all within normal limits. I got a consult to endo and wound up with a 3rd year resident who talked to me in the waiting room - YES, the WAITING ROOM ! and told me I needed a psych consult. :mad: She never even examined me. Said she was going to go in back and get the sheet for the psych consult. As she walked behind me, I said, “Oh, excuse me”. “yes”, she said. I said, “I know I’ve been having memory and concentration problems, but as far as I recall, you haven’t examined me yet”. She put her hands on my neck and palpated and screamed, “Oh my God, you’ve got a goiter. I’m going to have to go get the Chief”. They wound up ordering anti-nuclear and anti-thyroid antibodies and they were so far off the chart they had to dilute them multiple times to get a reading. Definititive for Hashimoto’s thyroiditis. Next step - a thyroid ultrasound. Yup, characteristic of Hashimoto’s. HOWEVER, the new dumb endo is treating the lab results, not the patient. I keep asking him why he is titrating the dose to the lab results instead of my symptoms when the lab results were within normal limits all the time I had the condition anyway. He doesn’t have a good answer. I’m still tired all the time, have memory and concentration problems, can’t lose weight unless I eat like a bird or completely skip meals. The Doc basically accuses me of lying when he asks what I’m eating and says I must be eating WAY more than I tell him. Anytime I try to follow what he wants me to eat I put on 2-3 lbs per day!
Downen, I did get changed to liothyronine and levothyroxine, but I’m taking them in the reverse - the levothyroxine in the AM and the liothyronine in the PM. I’ve read that the liothyronine can interfere with sleep. I think I’ll try to switch them and see if it makes a difference.
Side effects of Hashimoto’s - you know most of them - others are high cholesterol, high blood pressure, sleep apnea - these are all associated with the Hashimoto’s and should go away with proper treatment. HAH!! proper treatment. Very hard to get. I’ve been on a CPAP machine for about 10 years. Would give anything to get off it.
Where’s this Dr. Fam located??? Maybe I’ll try to work my way in there.
BTW, I wrote up that resident, but everyone defended her and said everyone loved her. Very difficult to deal with difficult docs in the military system.
[QUOTE=Tiki;5675809
Downen, I did get changed to liothyronine and levothyroxine, but I’m taking them in the reverse - the levothyroxine in the AM and the liothyronine in the PM. I’ve read that the liothyronine can interfere with sleep. I think I’ll try to switch them and see if it makes a difference.
QUOTE]
Hi Tiki: Sounds like you’ve encountered the same kind of imcompetent, irresponsible crap I have!
Yes, definitely switch the two. I sleep MUCH better taking my levothyroxine at night. Please know, however, liothyronine (Cytomel) has a very short half life, and depending on your dosage (which I’m guessing is low because doctors are scared to death of it) you probably aren’t getting the best results. I use compounded sustained release T3 (= Cytomel, = Liothyronine), which give me a much more consistant dosage. I get it from a compounding pharmacy.
I am just sickened by all the the people who are being under-treated and handling with such gross disregard for their feelings. Like I’ve been saying all along on this thread, TAKE CONTROL! Who’s paying who, after all! Stand up to them, insist on what you need, and if they don’t give it to you, walk out! There are LOTS of doctors out there, and a FEW are good!
Best wishes!
