Aa
Need direction...
I have tried posting this several times in the Expert Forums but they are always at the "Daily Quota"...
Not sure if anyone here can help. Thanks in advance for any direction or insight!
I will do my best to keep this concise and to the point. I am currently w/o insurance. I’m looking for a direction in which to start once I’m insured again and find a new doctor. I’m posting here since most of my concerns seem autoimmune related. My previous PCP/rheumatologist mis-diagnosed me with Progressive Systemic Sclerosis and refused to look past that. (I was undiagnosed by a scleroderma specialist at the Cleveland Clinic – he confirmed the morphea dx.) In researching this site, I noticed several references to thyroid disorders being possible causes for joint pain. None of my previous physicians have tried to connect the dots and I don’t know what may be related to what.
My history: I am a 42 yr old female. I have Morphea scleroderma, since @ age 7 with a large morphea patch on inner left knee and hyper-pigmentation on lower face, neck ring, forearms and lower back. Have a positive ANA – don’t know the numbers. I have osteoarthritis in lumbar region. This was discovered in Nov 2007 when I injured my back. Excruciating and debilitating pain that radiated sideways from top of hip to top of hip (X-ray & MRI reports below) and 7 nodules on my thyroid (2007), again – Ultrasound report below but I do not have the biopsy report – only that it wasn’t malignant. I have a history of low blood pressure – averages 90’s over 60’s sometimes diastolic is in 50’s. I have a history of bilateral joint pain and minor swelling in my hands and x-rays from 2004 showed no arthritic changes. The skin of my hands also gets very hot – my family won’t let me touch them when they are like that, they claim it burns. I also history of VERY dry and itchy skin as well as excessive hair loss but no balding patches. I have a swollen and sometimes very painful rt. side inguinal lymph node. GYN felt it was nothing since it has been like that for a few years.
Father’s family history:
Grand-fathers generation had 4 of 6 boys with 4 types cancer – one died from Thyroid Cancer Grand-father from metastasized prostate cancer. My father has hypothyroidism. My generation – 4 cousins with hypothyroidism that we know of. One cousin recently passed away with leukemia. He also had a large mass on his thyroid that “was put on the back burner)
Mother’s family history:
Grandmother had Type 2 diabetes. My mother was first in family to have Breast cancer. Radical mastectomy with lymph node removal on one side. Seems to have metastasized to bone but is not feeding. Sister has POTTS and MS.
X-Ray of sacrum and coccyx
There are degenerative changes in the lower lumbar spine with osteophytes and moderate narrowing of the L4-L5 disk space. Spina bifida occulta of the lower sacrum and upper coccyx is seen on the AP view. This is a developmental variation. The SI joints are normal.
X-Ray of cervical
Straightening of the normal cervical lordosis suggest muscle spasm. The vertebral bodies are normal. Disk spaces, posterior neural arches, facet joints and neural foramina all have normal appearance. (Thoracic report was normal)
Multiplanar multisequence MR imaging of the lumbar spine was performed.
The alignment of the vertebral bodies is intact.
The bone marrow signal is benign.
At L3/L4, a mild circumferential disk bulge, facet and ligamentum hypertrophy are identified without significant central canal or neural foraminal stenosis resulting.
At L4/L5, a moderate circumferential disk bulge, facet and ligamentum hypertrophy are present which result in mild central canal and mild bilateral neural foraminal stenosis.
At L5/S1, similar degenerative changes are identified. There is no significant central canal or neural foraminal stenosis at this level.
Thyroid Echo revealed "three hypoechoic nodules measuring 2mm, 3mm & 3mm" on the right lobe "within the left lobe there are two small nodules within the upper and mid-pole measuring 3mm & 2mm" and "Within the inferior pole there is a complex nodule measuring 1.4 x 1 x .08 cm. Remainder of the thyroid parenchyma is diffusely irregular in echogenicity. Contour of thyroid gland is also mildly irregular" Impression: Findings consistent with multinodular goiter with a single large nodule measuring 1.4 cm in greatest diameter. Malignancy cannot be excluded and hisologic evaluation is recommended. - Needle biopsy was performed and to my recollection came back as not being cause for concern at the time.
Thyroid blood test results: Thyroxine, Free 1.03 and TSH 1.39.
Not sure if anyone here can help. Thanks in advance for any direction or insight!
I will do my best to keep this concise and to the point. I am currently w/o insurance. I’m looking for a direction in which to start once I’m insured again and find a new doctor. I’m posting here since most of my concerns seem autoimmune related. My previous PCP/rheumatologist mis-diagnosed me with Progressive Systemic Sclerosis and refused to look past that. (I was undiagnosed by a scleroderma specialist at the Cleveland Clinic – he confirmed the morphea dx.) In researching this site, I noticed several references to thyroid disorders being possible causes for joint pain. None of my previous physicians have tried to connect the dots and I don’t know what may be related to what.
My history: I am a 42 yr old female. I have Morphea scleroderma, since @ age 7 with a large morphea patch on inner left knee and hyper-pigmentation on lower face, neck ring, forearms and lower back. Have a positive ANA – don’t know the numbers. I have osteoarthritis in lumbar region. This was discovered in Nov 2007 when I injured my back. Excruciating and debilitating pain that radiated sideways from top of hip to top of hip (X-ray & MRI reports below) and 7 nodules on my thyroid (2007), again – Ultrasound report below but I do not have the biopsy report – only that it wasn’t malignant. I have a history of low blood pressure – averages 90’s over 60’s sometimes diastolic is in 50’s. I have a history of bilateral joint pain and minor swelling in my hands and x-rays from 2004 showed no arthritic changes. The skin of my hands also gets very hot – my family won’t let me touch them when they are like that, they claim it burns. I also history of VERY dry and itchy skin as well as excessive hair loss but no balding patches. I have a swollen and sometimes very painful rt. side inguinal lymph node. GYN felt it was nothing since it has been like that for a few years.
Father’s family history:
Grand-fathers generation had 4 of 6 boys with 4 types cancer – one died from Thyroid Cancer Grand-father from metastasized prostate cancer. My father has hypothyroidism. My generation – 4 cousins with hypothyroidism that we know of. One cousin recently passed away with leukemia. He also had a large mass on his thyroid that “was put on the back burner)
Mother’s family history:
Grandmother had Type 2 diabetes. My mother was first in family to have Breast cancer. Radical mastectomy with lymph node removal on one side. Seems to have metastasized to bone but is not feeding. Sister has POTTS and MS.
X-Ray of sacrum and coccyx
There are degenerative changes in the lower lumbar spine with osteophytes and moderate narrowing of the L4-L5 disk space. Spina bifida occulta of the lower sacrum and upper coccyx is seen on the AP view. This is a developmental variation. The SI joints are normal.
X-Ray of cervical
Straightening of the normal cervical lordosis suggest muscle spasm. The vertebral bodies are normal. Disk spaces, posterior neural arches, facet joints and neural foramina all have normal appearance. (Thoracic report was normal)
Multiplanar multisequence MR imaging of the lumbar spine was performed.
The alignment of the vertebral bodies is intact.
The bone marrow signal is benign.
At L3/L4, a mild circumferential disk bulge, facet and ligamentum hypertrophy are identified without significant central canal or neural foraminal stenosis resulting.
At L4/L5, a moderate circumferential disk bulge, facet and ligamentum hypertrophy are present which result in mild central canal and mild bilateral neural foraminal stenosis.
At L5/S1, similar degenerative changes are identified. There is no significant central canal or neural foraminal stenosis at this level.
Thyroid Echo revealed "three hypoechoic nodules measuring 2mm, 3mm & 3mm" on the right lobe "within the left lobe there are two small nodules within the upper and mid-pole measuring 3mm & 2mm" and "Within the inferior pole there is a complex nodule measuring 1.4 x 1 x .08 cm. Remainder of the thyroid parenchyma is diffusely irregular in echogenicity. Contour of thyroid gland is also mildly irregular" Impression: Findings consistent with multinodular goiter with a single large nodule measuring 1.4 cm in greatest diameter. Malignancy cannot be excluded and hisologic evaluation is recommended. - Needle biopsy was performed and to my recollection came back as not being cause for concern at the time.
Thyroid blood test results: Thyroxine, Free 1.03 and TSH 1.39.
My heart is singing! I came in tonight specifically to check on you before I go away for a couple of days. I am relieved to read your update and thrilled that you have such a wonderful, supportive husband to see you through this.
Please keep us posted and know that I am keeping you in my thoughts and prayers.
Please keep us posted and know that I am keeping you in my thoughts and prayers.
Too funny! Your positive thoughts worked! I was actually coming here this morning to post an update.My husband made a comment yesterday that made a lot of sense. He used my "boy that cried wolf" analogy and told me the one time I don't 'cry wolf' will be the one time it's knocking down my door. I have an appointment this morning at 11:15 with the Doctor I mentioned. I will meet with a Financial Counselor 1/2 hour before my appointment. When I called to make the appointment and told the front desk nurse what was going on, she told me the FC would call within 48 hrs. They must be as concerned as me because they called within 15 mins! I had the appointment from first call to last call in less than 1/2 hour. I was expecting to not get in until next week! (i'll take it as a sign that I'm suppose to to this)
My husband told me whatever it takes, we will handle it. If it means I have to get on welfare to pay for it all, so be it. I've worked hard most of my life and paid my taxes into it.CC will apply for that first and if we don't meet their guidelines, CC has programs to help.I am raising my 3 yr old (birthday today) grand-daughter, so I need to be around and healthy for many more years.
I'll post an update later.
Thanks again. Your kindness and concern make a big difference!
My husband told me whatever it takes, we will handle it. If it means I have to get on welfare to pay for it all, so be it. I've worked hard most of my life and paid my taxes into it.CC will apply for that first and if we don't meet their guidelines, CC has programs to help.I am raising my 3 yr old (birthday today) grand-daughter, so I need to be around and healthy for many more years.
I'll post an update later.
Thanks again. Your kindness and concern make a big difference!
I am concerned about you. Your symptoms are screaming at me that I have to try to find a way to help you not give up. I know you are tired and I know how frustrating and hard it is to keep going to doctor after doctor trying to get a dx, but I believe your symptoms are something that cannot wait.
If it is cancer, waiting until you are insured could make a huge difference in your prognosis. If it is not cancer, finding out now can still make a huge difference in your treatment and prognosis for whatever it is you do have. I believe that there may be some financial assistance options open to you and, depending on your diagnosis, there are charities that assist, too.
The doctor you mentioned with such promise sounds like the very next step I would encourage you to take.
I am keeping you in my mind and sending positive thoughts your way. Please keep me posted and I will try to help you find resources to get the help you need.
If it is cancer, waiting until you are insured could make a huge difference in your prognosis. If it is not cancer, finding out now can still make a huge difference in your treatment and prognosis for whatever it is you do have. I believe that there may be some financial assistance options open to you and, depending on your diagnosis, there are charities that assist, too.
The doctor you mentioned with such promise sounds like the very next step I would encourage you to take.
I am keeping you in my mind and sending positive thoughts your way. Please keep me posted and I will try to help you find resources to get the help you need.
Cont'd.
I had UH doctors and hospitals for 6 yrs. I'm second guessing my test results from the UH labs if they said my ANA was negative but CC said it was positive. Part of me wants to make an appointment with my last family doctor that I just switched to at the Cleveland Clinic. I really liked him as a doctor as well as a person. I looked him up and it turns out he has studied cancer and oncology, even receiving awards, before deciding on family medicine. I figure he's probably my best bet for connecting the dots of my health history and finding an answer. But...
My family is tired of me going to the doctor and getting all these test and nothing is proved wrong. So am I. According to the tests, I should be healthy as a purebred horse. I'm beginning to feel like the boy who cried wolf. When this whole thyroid thing came about, I was sure it was cancer because it explained so much about why I've felt like **** for so long. Not that I wanted cancer, but an answer with a solution and a fix. Thyroid cancer is rarely fatal, except for one, in which case, I'd be dead already, or unless it is ignored and it metastasizes. Cancer fits my symptoms better than anything. I'm second guessing my test results from the UH labs if they said my ANA was negative but CC said it was positive.
I posted this in the Cancer Community and this was the Dr.'s reply: "You have symptoms and that warrant further investigation. Plus you have a strong family history of cancer and that poses a risk for hereditary types of cancer. You need to undergo further tests to determine what is causing your symptoms. You may need to have a repeat thyroid ultrasound, CT scan, and biopsy. Blood examinations like a complete blood count, thyroid function test (T3, T4, TSH), and perhaps a lactic dehydrogenase determination can help.I strongly advise you to see your doctor for evaluation. "
Should I go to this new doc, or wait it out until I get insurance. Keep in mind, here in the states, if you get diagnosed with something before insurance, they can deny coverage for it because it's pre-existing.
I don't know what to do.
Thanks for listening. It really does help.
D.
I had UH doctors and hospitals for 6 yrs. I'm second guessing my test results from the UH labs if they said my ANA was negative but CC said it was positive. Part of me wants to make an appointment with my last family doctor that I just switched to at the Cleveland Clinic. I really liked him as a doctor as well as a person. I looked him up and it turns out he has studied cancer and oncology, even receiving awards, before deciding on family medicine. I figure he's probably my best bet for connecting the dots of my health history and finding an answer. But...
My family is tired of me going to the doctor and getting all these test and nothing is proved wrong. So am I. According to the tests, I should be healthy as a purebred horse. I'm beginning to feel like the boy who cried wolf. When this whole thyroid thing came about, I was sure it was cancer because it explained so much about why I've felt like **** for so long. Not that I wanted cancer, but an answer with a solution and a fix. Thyroid cancer is rarely fatal, except for one, in which case, I'd be dead already, or unless it is ignored and it metastasizes. Cancer fits my symptoms better than anything. I'm second guessing my test results from the UH labs if they said my ANA was negative but CC said it was positive.
I posted this in the Cancer Community and this was the Dr.'s reply: "You have symptoms and that warrant further investigation. Plus you have a strong family history of cancer and that poses a risk for hereditary types of cancer. You need to undergo further tests to determine what is causing your symptoms. You may need to have a repeat thyroid ultrasound, CT scan, and biopsy. Blood examinations like a complete blood count, thyroid function test (T3, T4, TSH), and perhaps a lactic dehydrogenase determination can help.I strongly advise you to see your doctor for evaluation. "
Should I go to this new doc, or wait it out until I get insurance. Keep in mind, here in the states, if you get diagnosed with something before insurance, they can deny coverage for it because it's pre-existing.
I don't know what to do.
Thanks for listening. It really does help.
D.
This is a little long. Posting in two because it claims it's over character limit.
I'm torn about what to do. I have found out that being unemployed and without insurance, I can get financial assistance through Cleveland Clinic - my preferred hospital system in my area.
- I have 6 thyroid nodules, one being complex and dominant.
- I have swollen lymph nodes in my neck and one in my groin that has been swollen over a year. (only painful when other swelling in my groin is present ie. menstruation, or after an evening of drinking)
- I've been getting hot flashes/night sweats for 15 years. I am only 42 years old. There is no way I have been perimenopausal for the last 15 years like everyone keeps telling me!
- my lower legs itch all the time, deep inside and I've woke myself up from a dead sleep scratching
- there is pressure under my collarbones. Use to be just the right side, now both
- on and off I get the sensation of a fist pushing out from under my right ribcage that is not an ulcer or gallbladder or liver problem (spleen is there - part of the lymph system)
- all of these COULD be markers for lymphoma of thyroid cancer that metastasized to my lymph system
- All my tests through University Hospital systems have been negative for anything (even the thyroid biopsy and my ANA)
- Cleveland Clinic blood tests say I have a Positive ANA
- CBC from 02, 03 & 04 show a continuous but mild decrease in my red blood count and my platelet count. I don't know current levels.
- there is an extremely HIGH cancer history on my father's side of the family (one thyroid, one leukemia w/ large mass on thyroid)
- my mother had breast cancer and has leukemia (leukemia causes her to have hot flashes & she hasn't had a uterus for 40 years!)
- I'm a smoker - 29 years. smoke has benzine - I known chemical that can cause lymphoma
- not sure how this all ties in, but my BP has been really low since that Tues night my lymph node woke me up. averaging 85/57 making me feel terrible. no energy, disoriented, no appetite, headachey. ( I have no fever, but chills)
I'm torn about what to do. I have found out that being unemployed and without insurance, I can get financial assistance through Cleveland Clinic - my preferred hospital system in my area.
- I have 6 thyroid nodules, one being complex and dominant.
- I have swollen lymph nodes in my neck and one in my groin that has been swollen over a year. (only painful when other swelling in my groin is present ie. menstruation, or after an evening of drinking)
- I've been getting hot flashes/night sweats for 15 years. I am only 42 years old. There is no way I have been perimenopausal for the last 15 years like everyone keeps telling me!
- my lower legs itch all the time, deep inside and I've woke myself up from a dead sleep scratching
- there is pressure under my collarbones. Use to be just the right side, now both
- on and off I get the sensation of a fist pushing out from under my right ribcage that is not an ulcer or gallbladder or liver problem (spleen is there - part of the lymph system)
- all of these COULD be markers for lymphoma of thyroid cancer that metastasized to my lymph system
- All my tests through University Hospital systems have been negative for anything (even the thyroid biopsy and my ANA)
- Cleveland Clinic blood tests say I have a Positive ANA
- CBC from 02, 03 & 04 show a continuous but mild decrease in my red blood count and my platelet count. I don't know current levels.
- there is an extremely HIGH cancer history on my father's side of the family (one thyroid, one leukemia w/ large mass on thyroid)
- my mother had breast cancer and has leukemia (leukemia causes her to have hot flashes & she hasn't had a uterus for 40 years!)
- I'm a smoker - 29 years. smoke has benzine - I known chemical that can cause lymphoma
- not sure how this all ties in, but my BP has been really low since that Tues night my lymph node woke me up. averaging 85/57 making me feel terrible. no energy, disoriented, no appetite, headachey. ( I have no fever, but chills)
I know how frustrating it can be trying to get to a doctor that you feel is listening to you and not just backing the last doc you saw. I went through that with another condition I had. The 13th doctor finally got it. 13! I just never gave up. The only way I got that doc to listen to me is I had a melt down in his office. One test later I had a dx. Of course, that was an easier to dx syndrome, not like these autoimmune diseases!
I really like what spastic wrote about the University hospital. A gung-ho student may be EXACTLY what you need! Even if a doctor here responds, you need to see someone and, in my experience, the University doctors are a good bet as they are up to date on the latest and greatest discoveries and research.
Ada,
If you read this, can you send us the info on applying for financial assistance?
I really like what spastic wrote about the University hospital. A gung-ho student may be EXACTLY what you need! Even if a doctor here responds, you need to see someone and, in my experience, the University doctors are a good bet as they are up to date on the latest and greatest discoveries and research.
Ada,
If you read this, can you send us the info on applying for financial assistance?
Tried to get "rated" but they won't count 2 of my family members as dependents - on being my grand-daughter that I have custody of the other - her mother who is in college and depending on me. That raised my income to dependents ratio so I don't qualify!
And I'm a little gun shy with docs because my last one never looked past the misdiagnosis. Every single test was centered around that - even when it came back that I had a multinodular goiter - she only ordered TSH & T4. I've recently discovered that there should have been more...
I don't need anymore doctors telling me "tests are normal we don't know what's wrong" like they seem to think it's all in my head and they won't look any further. That's why I keep trying to post here, hoping a doctor will see it all and be able to connect the dots and point me in a single direction...
Thanks so much for your replies!
And I'm a little gun shy with docs because my last one never looked past the misdiagnosis. Every single test was centered around that - even when it came back that I had a multinodular goiter - she only ordered TSH & T4. I've recently discovered that there should have been more...
I don't need anymore doctors telling me "tests are normal we don't know what's wrong" like they seem to think it's all in my head and they won't look any further. That's why I keep trying to post here, hoping a doctor will see it all and be able to connect the dots and point me in a single direction...
Thanks so much for your replies!
I agree with txsilver, I started writing a reply a few days ago and it poof disappeared!!! Can you apply for financial assistance? When my insurance went out in July, I had applied for this kind of help, its a University hospital so sometimes you are seeing students (that can be a pain) but its better than not seeking treatment. If the student is stumped you go on up the chain.
I also think you have several things at play here. I would recommend seeing a rheumy like tx said but also seeing an infectious disease dr to check on your lymph node and have some panels of tests done for like EBV, parvo, and so on and so fourth. And definately see an Endocrinologist, at least theres nothing cancerous (Whew) but any growth near the thyroid gland can cause a bunch of problems.
I also think you have several things at play here. I would recommend seeing a rheumy like tx said but also seeing an infectious disease dr to check on your lymph node and have some panels of tests done for like EBV, parvo, and so on and so fourth. And definately see an Endocrinologist, at least theres nothing cancerous (Whew) but any growth near the thyroid gland can cause a bunch of problems.
I wish I could say this rings a bell for me. You may have more than one thing going which is making you harder to diagnose. Your high ANA and other symptoms are all indicating you need to see a rheumatologist. Can you ask a doctor in your area who rheummy's send their patients to when they are stumped? I think a second (or third or fourth) opinion is in order here. I hope you find yourself insured again soon and that if it gets too bad that you will not delay pursuing treatment. Please let us know how you are doing and what you find out.
Forgot to mention a history of low grade (99F - 100F) fevers, on and off fatigue, history of migraines and 2 TIAs during my last 2 pregnancies (1990 & 1992).
I realize this is a community forum but I'n hoping this may ring a bell with someone and can point me in the right direction.
Thanks again!
I realize this is a community forum but I'n hoping this may ring a bell with someone and can point me in the right direction.
Thanks again!
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