Endocrinology question ; need help; Dr won’t give referral

Posted by marmymoomy @marmymoomy, Aug 22 1:54pm

My Sr won’t refer me to Endocrinology (I don’t have diabetes, but this was the only group with the topic of endocrine system. ). I know there are more extensive tests an endocrinologist can do to check my thyroid, cortisol levels and adrenal system. Since Aug 1, I have had the feeling of being incredibly dehydrated ( but I’m not) with a scalloped tongue, and moments of severe exhaustion… have moments where I feel I cannot function physically, or mentally nor verbally. ( I do have fibromyalgia and other issues as well). My skin and eyes for maybe ten years are dry dry dry. I have gained weight around my mid section ( apron belly) and I’ve not changed my eating habits at all. I am going for a cortisol “ test” , but at this point, my Dr is holding off on a referral, but I truly feel I need more extensive testing of my thyroid and whole adrenal system.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Sorry for your pain but I can relate as I have had the same problems for six years My GP has now giving me extra T3 which has made me feel worse.Thanks to this great website I am now asking to have my cortisol tested.I’m 78 and don’t want to spend “what’s left “ feeling like this.( and it’s not helping my golf handicap)Regards Nollig.

REPLY

marmymoomy,
Referral's are a big pain. You mentioned dry eyes, skin, what about a dry mouth? These are just the dry "sicca" manifestations of Sjögren's syndrome. It was a new dentist that actually pushed me, just enough to insist on a lip biopsy. Sure enough, it was positive, however, I am seronegative for the blood markers, this is not all that uncommon. It is an autoimmune disorder. I don't take any medications for it, The ones for dry mouth are nauseous. There is SO MUCH MORE to Sjögren's than any doctor has ever even mentioned to me. The website:
Sjögren's Advocate (not sure if the ' is in the name. A doctor who has Sjögren's along with other autoimmune disorders runs the site. She has tons of information about myths and facts, how the medical profession truly has no clue about the widespread, systematic problems that Sjögren's causes. She runs the website as a research person and patient, not as a doctor. There are two types of this disease: one is secondary Sjögren's, most people find that they have it, in combination with another autoimmune disorder, like Rheumatoid Arthritis or others. There is also, pSS, Primary Sjögren's syndrome, I have this form, I think RA is growing, possibly Lupus, but for now I only have pSS diagnosis. I'm still shocked by the lack of knowledge doctors have about this. it really is systemic, joints, muscles, etc etc etc, but no one tells you this. I bring up parathyroid issues in all my endocrinology replies. it also has primary, secondary and tertiary types. The best websites I found were
Parathyroid.com( run by the Norman Center in FL, he's a very well respected dr. ) and swparathyroid.com(in AZ).
Each website has great content and calculators.
I have had all 3 types over 17 years. I had 5 different doctors opinions, 3 said I should have the surgery, 2 said I shouldn't. One of the doctors that said NO!, was my endocrinologist for 17 years, she was wrong. I just had the surgery and I was given the visual proof that I needed the surgery. I have pictures of the my gland's that were removed. PTH, calcium, magnesium, vitamin D are all involved. It is quite common in women of 50 years and older. Just something to consider. Good Luck.
ShelleyW

REPLY

Do you need a Dr. referral or can you self refer and get it covered by your insurance?

REPLY

Hello @marmymoomy
I’m sorry to hear that you aren’t feeling well, it’s distracting and doesn’t allow us to live the life we’d like. It sounds like you’ve visited your PCP/GP and mentioned all your symptoms. Were there any tests they performed at all? If so, which ones? If not, there are still tests they can run before sending you to an endo. They can test thyroid by ordering a TSH, Total T3 and T4. You want the Total T3 along with TSH. What are the symptoms you have that make you want to test cortisol? If you have reasons for thinking it’s because you don’t have any energy or you feel like you are leaning toward more of the insomnia effect, cortisol results MIGHT give some indications but you would only get an 8am blood draw to start that testing. There are more tests around cortisol that would need to be done if that result is irregular. ACTH and DHEA could also be done from blood by a PCP. But, while it can be frustrating, its important to talk most about our symptoms to our doctors (no matter how you may feel a symptom is insignificant, it’s important to talk about) so they have the whole picture of what we go through. If you continue to feel strongly about particular tests then it’s ok to ask them why they feel that test is unnecessary. I’m not a physician, but I am a patient that has gone through tough experiences and also grateful ones to finally diagnose Cushing’s Disease. But I didn’t walk into a doctor’s office saying that I have a particular diagnosis, I focused on my symptoms and continued to be an advocate of those symptoms were not resolved and asked them what they thought the next step would be. I hope this helps in your journey.

REPLY

my insurance is a PPO. and i can self refer. i love that best. that way i don't have to rely on anyone. @danny5

REPLY

@marmymoomy I mentioned this in an earlier post a while ago, but it may bear repeating. Why not find an endocrinologist that works with your insurance, and make an appointment with their NP or PA? Either is extremely knowledgeable and if further direction is needed, either can refer you to their endocrinologist.

REPLY
@gretchenmpls

Hello @marmymoomy
I’m sorry to hear that you aren’t feeling well, it’s distracting and doesn’t allow us to live the life we’d like. It sounds like you’ve visited your PCP/GP and mentioned all your symptoms. Were there any tests they performed at all? If so, which ones? If not, there are still tests they can run before sending you to an endo. They can test thyroid by ordering a TSH, Total T3 and T4. You want the Total T3 along with TSH. What are the symptoms you have that make you want to test cortisol? If you have reasons for thinking it’s because you don’t have any energy or you feel like you are leaning toward more of the insomnia effect, cortisol results MIGHT give some indications but you would only get an 8am blood draw to start that testing. There are more tests around cortisol that would need to be done if that result is irregular. ACTH and DHEA could also be done from blood by a PCP. But, while it can be frustrating, its important to talk most about our symptoms to our doctors (no matter how you may feel a symptom is insignificant, it’s important to talk about) so they have the whole picture of what we go through. If you continue to feel strongly about particular tests then it’s ok to ask them why they feel that test is unnecessary. I’m not a physician, but I am a patient that has gone through tough experiences and also grateful ones to finally diagnose Cushing’s Disease. But I didn’t walk into a doctor’s office saying that I have a particular diagnosis, I focused on my symptoms and continued to be an advocate of those symptoms were not resolved and asked them what they thought the next step would be. I hope this helps in your journey.

Jump to this post

Many sincere thanks for your reply.I have every Hypo symptoms in the” book”( 4years now)and have seen a top Endoc. but no help whatsoever.My G.P.(who I believe is very good )out of desperation put me on T3 (20mcg Tertroxine)which made me feel worse.I will be seeing him next week after another blood test and intend asking him again for a script forArmour.It seems obvious to me I am not converting T3 which is why I feel worse.It feels good to share my experience’s with one that understands so thank you and stay well.

REPLY
@nollig

Many sincere thanks for your reply.I have every Hypo symptoms in the” book”( 4years now)and have seen a top Endoc. but no help whatsoever.My G.P.(who I believe is very good )out of desperation put me on T3 (20mcg Tertroxine)which made me feel worse.I will be seeing him next week after another blood test and intend asking him again for a script forArmour.It seems obvious to me I am not converting T3 which is why I feel worse.It feels good to share my experience’s with one that understands so thank you and stay well.

Jump to this post

I'm so sorry to read that, because of course it affects everything in your body. Natural hormones are always best - or almost; there are a few patients who do better on synthetics. I have to get both T3 and T4 from a compounding pharmacy. Often DOs are more alert to this phenomenon, though my new GP, otherwise very good, couldn't renew my scrip because she doesn't know anything about compounding pharmacies so didn't feel comfortable about it - and I chose her mainly because she's a DO.

REPLY
@collegeprof

@marmymoomy I mentioned this in an earlier post a while ago, but it may bear repeating. Why not find an endocrinologist that works with your insurance, and make an appointment with their NP or PA? Either is extremely knowledgeable and if further direction is needed, either can refer you to their endocrinologist.

Jump to this post

Thank you! This particular endo I want to see( my sis in law goes to her and highly recommends her) she requires referrals. I FINALLY have one! I have an appt with her in a few weeks!

REPLY
@gretchenmpls

Hello @marmymoomy
I’m sorry to hear that you aren’t feeling well, it’s distracting and doesn’t allow us to live the life we’d like. It sounds like you’ve visited your PCP/GP and mentioned all your symptoms. Were there any tests they performed at all? If so, which ones? If not, there are still tests they can run before sending you to an endo. They can test thyroid by ordering a TSH, Total T3 and T4. You want the Total T3 along with TSH. What are the symptoms you have that make you want to test cortisol? If you have reasons for thinking it’s because you don’t have any energy or you feel like you are leaning toward more of the insomnia effect, cortisol results MIGHT give some indications but you would only get an 8am blood draw to start that testing. There are more tests around cortisol that would need to be done if that result is irregular. ACTH and DHEA could also be done from blood by a PCP. But, while it can be frustrating, its important to talk most about our symptoms to our doctors (no matter how you may feel a symptom is insignificant, it’s important to talk about) so they have the whole picture of what we go through. If you continue to feel strongly about particular tests then it’s ok to ask them why they feel that test is unnecessary. I’m not a physician, but I am a patient that has gone through tough experiences and also grateful ones to finally diagnose Cushing’s Disease. But I didn’t walk into a doctor’s office saying that I have a particular diagnosis, I focused on my symptoms and continued to be an advocate of those symptoms were not resolved and asked them what they thought the next step would be. I hope this helps in your journey.

Jump to this post

Thank you @gretchenmpls ! My cortisol levels did come back high ; I have other symptoms that lead me to believe I have a thyroid issue or adrenal issue… too much to go into here. Many symptoms I’ve experienced for a few years… many fall in line with my fibromyalgia, others could cross over into other diagnosis. I’ve had to “ fight” for having tests and certain specialists see me for about 16 years now… first medical issue being pelvic congestion syndrome ( but I didn’t know what it was at that time, just knew I was in severe pain, and could not stand for more than ten minutes…. Also other vascular issues, varicose veins requiring numerous surgeries, and sporting compression hose beginning at the age of 31 ) Also had to argue with my PCP four years ago about the many symptoms I have, and how I was quite sure it’s fibromyalgia ( judging from the symptoms of my Mom, two sisters, three of my aunts, and two sisters in law). Yes, we’re not Doctors, we’re the patients, but we know our bodies best, and we definitely know when something is way off.

REPLY
Please sign in or register to post a reply.