# Rheumy Appointment - Just need to Vent!



## kris4913

Long story short, like many of you I have been sick most of my life and nothing can ever be found, tests/scans/etc are always normal or borderline, & doctors throw their hands in the air and say they can't help me.
I joined this group a month or so ago when my TSH was starting to elevate (2.65, had been 1.80 2 years ago) & my T4 was low (.74 with .71 being the lowest accepted "normal"). I did 25mcg of Snythroid for a week and had horrible side effects: vomiting, diarrhea, sleeping 2-3hrs a day, heart pounding, etc so my primary doctor said to stop since it was just an experiment that obviously wasn't working. I actually wound up in the ER due to dehydration - not a fun weekend.
I had made an appointment to see a rheumy like 2.5 months - man waiting to get in to see a doctor is horrible - due to a positive ANA back in June (low titer 1:80, speckled). My dr wanted to make sure he wasn't missing anything in all the antibody tests & wanted her to check for fibro (also have IBS & MVP which are common in conjuction with fibro).
After months of waiting, the appointment was yesterday and it was awful! I had tried to prepare myself for a let down and to not get my hopes up but I was still crushed. She was very gruff & very direct - not a horrible thing but it caught me by surprise. After looking over all my labs, doing some pressure point things, she basically told me I was crazy in about as matter-of-factly way that you can. She told me I have OCD tendencies because I was so prepared for the appointment (typed up a medical history, current symptoms, organized all my labs & tests, etc) and because I know medical terminology (umm.. I am a biology professor). I know that mental illness is real & that off levels of neurotransmitters can change everything about the way you feel - but come on! I am so sick of being told "that it's all in my head" or "you think you are in pain when you really aren't" and being asked stupid questions like is your job just too stressful, does your husband beat you or verbally abuse you. Just because I am a women, why does everything have to be about emotions & feelings - why can't you just accept that I might really be sick! 
When ended the appointment with being told I need psychiatrist and to be medicated. I guess next time I need to act stupid, disorganize my lab reports & maybe spill on them or stick a piece of gum in the corner so I don't look like I am "obsessing" over my health. 
Need support from others out there dealing with "invisible" illnesses.


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## Andros

kris4913 said:


> Long story short, like many of you I have been sick most of my life and nothing can ever be found, tests/scans/etc are always normal or borderline, & doctors throw their hands in the air and say they can't help me.
> I joined this group a month or so ago when my TSH was starting to elevate (2.65, had been 1.80 2 years ago) & my T4 was low (.74 with .71 being the lowest accepted "normal"). I did 25mcg of Snythroid for a week and had horrible side effects: vomiting, diarrhea, sleeping 2-3hrs a day, heart pounding, etc so my primary doctor said to stop since it was just an experiment that obviously wasn't working. I actually wound up in the ER due to dehydration - not a fun weekend.
> I had made an appointment to see a rheumy like 2.5 months - man waiting to get in to see a doctor is horrible - due to a positive ANA back in June (low titer 1:80, speckled). My dr wanted to make sure he wasn't missing anything in all the antibody tests & wanted her to check for fibro (also have IBS & MVP which are common in conjuction with fibro).
> After months of waiting, the appointment was yesterday and it was awful! I had tried to prepare myself for a let down and to not get my hopes up but I was still crushed. She was very gruff & very direct - not a horrible thing but it caught me by surprise. After looking over all my labs, doing some pressure point things, she basically told me I was crazy in about as matter-of-factly way that you can. She told me I have OCD tendencies because I was so prepared for the appointment (typed up a medical history, current symptoms, organized all my labs & tests, etc) and because I know medical terminology (umm.. I am a biology professor). I know that mental illness is real & that off levels of neurotransmitters can change everything about the way you feel - but come on! I am so sick of being told "that it's all in my head" or "you think you are in pain when you really aren't" and being asked stupid questions like is your job just too stressful, does your husband beat you or verbally abuse you. Just because I am a women, why does everything have to be about emotions & feelings - why can't you just accept that I might really be sick!
> When ended the appointment with being told I need psychiatrist and to be medicated. I guess next time I need to act stupid, disorganize my lab reports & maybe spill on them or stick a piece of gum in the corner so I don't look like I am "obsessing" over my health.
> Need support from others out there dealing with "invisible" illnesses.


This is a horrid horrid story and gives me flashbacks on how I was treated for over 20 years.

Can you go out of pocket to get the tests you desire? 
See if you have this lab in your area; it not, there may be another where you can just order your own labs.

Don't you just love it that you had to pay this doctor on top of it? Boy, that rankles me no end. I could say more, but I demur.

HealthCheckUSA
http://www.healthcheckusa.com/


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## Andros

kris4913 said:


> Long story short, like many of you I have been sick most of my life and nothing can ever be found, tests/scans/etc are always normal or borderline, & doctors throw their hands in the air and say they can't help me.
> I joined this group a month or so ago when my TSH was starting to elevate (2.65, had been 1.80 2 years ago) & my T4 was low (.74 with .71 being the lowest accepted "normal"). I did 25mcg of Snythroid for a week and had horrible side effects: vomiting, diarrhea, sleeping 2-3hrs a day, heart pounding, etc so my primary doctor said to stop since it was just an experiment that obviously wasn't working. I actually wound up in the ER due to dehydration - not a fun weekend.
> I had made an appointment to see a rheumy like 2.5 months - man waiting to get in to see a doctor is horrible - due to a positive ANA back in June (low titer 1:80, speckled). My dr wanted to make sure he wasn't missing anything in all the antibody tests & wanted her to check for fibro (also have IBS & MVP which are common in conjuction with fibro).
> After months of waiting, the appointment was yesterday and it was awful! I had tried to prepare myself for a let down and to not get my hopes up but I was still crushed. She was very gruff & very direct - not a horrible thing but it caught me by surprise. After looking over all my labs, doing some pressure point things, she basically told me I was crazy in about as matter-of-factly way that you can. She told me I have OCD tendencies because I was so prepared for the appointment (typed up a medical history, current symptoms, organized all my labs & tests, etc) and because I know medical terminology (umm.. I am a biology professor). I know that mental illness is real & that off levels of neurotransmitters can change everything about the way you feel - but come on! I am so sick of being told "that it's all in my head" or "you think you are in pain when you really aren't" and being asked stupid questions like is your job just too stressful, does your husband beat you or verbally abuse you. Just because I am a women, why does everything have to be about emotions & feelings - why can't you just accept that I might really be sick!
> When ended the appointment with being told I need psychiatrist and to be medicated. I guess next time I need to act stupid, disorganize my lab reports & maybe spill on them or stick a piece of gum in the corner so I don't look like I am "obsessing" over my health.
> Need support from others out there dealing with "invisible" illnesses.


I meant to ask........................have you had any of the tests listed below?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

And, have you ever had an ultra-sound of the thyroid?

I always thought I had fibro but it turned out to be Lupus. If you indeed do have fibro, consider omitting all glutens, artificial sweetners and chemicals used to preserve or enhance flavor such as MSG and a myriad of other sodiums.

For Sodium Chloride which we all need RDA, I use only a good quality sea salt.


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## midgetmaid

You are not alone. Some of us, along with friends and family members, have been treated the same way. It is appalling that anti-d's are the treatment of choice in these cases.

Renee


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## webster2

I am sorry you were treated like this. Rheumatologists should be experts in dealing with difficult to diagnose diseases not a judgemental person like you saw. I do hope you will find one with a little more compassion so you can get on the path to feeling much better.


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## kris4913

Thanks guys! I am so sick & tired of being treated like I am looking for attention and like I want to be sick. What makes me so mad about this is that it makes me question myself - maybe I am not really sick, maybe I am just "crazy", maybe the drugs would help, etc.


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## kris4913

Andros said:


> I meant to ask........................have you had any of the tests listed below?
> 
> TSI
> Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
> http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html
> 
> Trab
> http://www.ncbi.nlm.nih.gov/pubmed/17684583
> 
> TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.
> 
> You can look this stuff up here and more.........
> http://www.labtestsonline.org/
> 
> And, have you ever had an ultra-sound of the thyroid?
> 
> I always thought I had fibro but it turned out to be Lupus. If you indeed do have fibro, consider omitting all glutens, artificial sweetners and chemicals used to preserve or enhance flavor such as MSG and a myriad of other sodiums.
> 
> For Sodium Chloride which we all need RDA, I use only a good quality sea salt.


Last set of labs:
Free t4 - .74 (.71-1.85)
TSH - 2.65 (.3-5)
Total t3 - 1.23 (.87-1.79) - no free t3 was done 
t3 reverse - 289 (90-350)
Anti-TG - 1.0 (ref = <4.0)
TPO Tb - 1.6 (ref 0.00 - 9.00)
Serum Protein electrophoresis (total protein, albumin, alpha 1, alpha 2, beta 1, Beta 2, Gamma, Interp) - all normal patterns
ANA - positive 1:80, speckled
negative for Eppstein Barr Virus (mono)
Anti-dsDNA, IgG - 7 (0-10 equivocal, >10 positive)
Anti-SSA(Ro) IgG - <.2 (negative = 0-1.0)
Anti-SSA (La)IgG - <.2 (negative = 0-1.0)
ENA:
Anti-Sm, IgG - <.2 (negative = 0-1.0)
Anit-SM/RNP, IgG - <.2 (negative = 0-1.0)
Anti-RNPIgG - <.2 (negative = 0-1.0)
Histone IGG AB AntiCrom IgG - <.2 (negative = 0-1.0)
Jo-1 IGG AB - <.2 (negative = 0-1.0)
Scleraderma IGG - <.2 (negative = 0-1.0) 
I have also had CBC's done like 5x in the last several months - all in normal ranges


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## kris4913

Also ultrasound of the thyroid last month:
right lobe 4.5x1.3x1.6cm and left lobe 4.2x.9x1.4cm. No discrete thyroid mass or cyst identified.
Impression: normal thyroid size & morphology w/o evidence of discrete nodules

Also been tested for Lyme, Toxoplasma, RA factor, Mono, SED rates, & have had 2 abdominal CT's, 2 EKG's in the last 4 months

Had a blood clot in my forearm in April (SVT) and all blood work associated with it was normal (counts, clotting times, clotting factors, etc)


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## Andros

kris4913 said:


> Last set of labs:
> Free t4 - .74 (.71-1.85)
> TSH - 2.65 (.3-5)
> Total t3 - 1.23 (.87-1.79) - no free t3 was done
> t3 reverse - 289 (90-350)
> Anti-TG - 1.0 (ref = <4.0)
> TPO Tb - 1.6 (ref 0.00 - 9.00)
> Serum Protein electrophoresis (total protein, albumin, alpha 1, alpha 2, beta 1, Beta 2, Gamma, Interp) - all normal patterns
> ANA - positive 1:80, speckled
> negative for Eppstein Barr Virus (mono)
> Anti-dsDNA, IgG - 7 (0-10 equivocal, >10 positive)
> Anti-SSA(Ro) IgG - <.2 (negative = 0-1.0)
> Anti-SSA (La)IgG - <.2 (negative = 0-1.0)
> ENA:
> Anti-Sm, IgG - <.2 (negative = 0-1.0)
> Anit-SM/RNP, IgG - <.2 (negative = 0-1.0)
> Anti-RNPIgG - <.2 (negative = 0-1.0)
> Histone IGG AB AntiCrom IgG - <.2 (negative = 0-1.0)
> Jo-1 IGG AB - <.2 (negative = 0-1.0)
> Scleraderma IGG - <.2 (negative = 0-1.0)
> I have also had CBC's done like 5x in the last several months - all in normal ranges


It looks to me like you have Lupus. You should not have any Anti-dsDNA. Not to mention that these antibodies wax and wane. They could be high one day and low on another.

What does the test result mean?

The results of an anti-dsDNA test are usually considered together with a person's medical history, signs and symptoms, and results of other autoantibody tests.

A high level of anti-dsDNA is strongly associated with SLE and is often significantly increased during or just prior to an SLE flare-up. If the anti-dsDNA is positive and the person tested has other clinical signs associated with SLE, then is it likely that she has SLE. This is especially true if an anti-Sm test is also positive.

A very low level of anti-dsDNA is considered negative but does not exclude a diagnosis of SLE. Only about 50-60% of those with SLE will have anti-dsDNA. Low to moderate levels of the autoantibody may be seen with other autoimmune disorders, such as Sjögren syndrome and mixed connective tissue disease (MCTD).

Anti-dsDNA tests are semi-quantitative and may be performed using different assays. Many laboratories use an anti-dsDNA ELISA test (enzyme-linked immunoabsorbent assay), a very reliable and sensitive test.

Please read in it's entirety..............
http://labtestsonline.org/understanding/analytes/anti-dsdna/tab/test


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## Keba

Argh!

I can't believe the way you have been treated. No one should have to go through that. I hope you get to the bottom of this soon.

My family now thinks I'm a hyperchondriac all because I'm trying to research and make sure my Doctor is looking in the right direction.
Most days I just keep everything to myself because they say I complain. Of course I complain because I feel like something is being missed.

I started thinking I was going a little nuts myself but I take my temperature and see that I run a fever most days and I know it's not in my head.

I say keep doing what you're doing, record your daily symptoms.
I would follow the advice of Andros and look into SLE, I've read that is commonly misdiagnosed for years.

Maybe ask family members what changes they have seen in you.
Take Care!


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## proud-armywife

I was just going through posts and read your vent. I cannot tell you how sorry I am. I have felt this way before and even now still do. I did the same thing you did at a recent appointment- all we want is help and we need hope that this will be fixed. I have not read the rest of the replies but I just wanted to extend a big hug your way- you are not alone, you are not crazy and it is not in your head.


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## kris4913

Thanks guys! It is so sad that there are so many of us suffering but it is helpful to know that I am not alone. I have decided to take a little time off from doctors and tests and what not. After nearly 5 months of having almost weekly dr appointments or going in for a scan or blood draw - I need a break. It is so hard & stressful - you get your hopes up that this might be it, wait a week for results, just to be told your fine. I was thinking in a month or two about going in to repeat tests to compare and I will look into some of the others recommended you guys.

I have started going to a yoga class and doing some very light walking to help with my stiffness, body pain, & abnormal sleep patterns and I am getting back on a more natural diet - eat crap, feel like crap I think.


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## Andros

kris4913 said:


> Also ultrasound of the thyroid last month:
> right lobe 4.5x1.3x1.6cm and left lobe 4.2x.9x1.4cm. No discrete thyroid mass or cyst identified.
> Impression: normal thyroid size & morphology w/o evidence of discrete nodules
> 
> Also been tested for Lyme, Toxoplasma, RA factor, Mono, SED rates, & have had 2 abdominal CT's, 2 EKG's in the last 4 months
> 
> Had a blood clot in my forearm in April (SVT) and all blood work associated with it was normal (counts, clotting times, clotting factors, etc)


Doesn't seem like any stone has been left unturned here although apparently there is in fact something taking place that has yet to be nailed. I still think you do have Lupus.

That blood clot had to be scary.
http://www.lupus.org/webmodules/web.../new_aboutaffects.aspx?articleid=98&zoneid=17


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## bigfoot

kris4913 said:


> After nearly 5 months of having almost weekly dr appointments or going in for a scan or blood draw - I need a break.


Sounds good -- having some time to relax is an excellent idea. Just dealing with all of this stuff can bring on untold amounts of stress. Having doctors that are dismissive or egotistical doesn't help, either. There are only a few doctors that I can think of who I trust not to rush to judgment and actually listen. The rest seem a little too eager to act as a drug company liaison. (Must be all those free lunches and pens.)


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