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Old 08-03-2004, 08:36 AM   #1
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SueQ HB User
Lupus Symp or hypothyroid

Hello,
I've been having numerous symptoms for the past 4 years, that I truly believed were from autoimmune thyroid, but now I am wondering. Here is my story, please let me know if perhaps my symptoms are really from Lupus or another connective tissue disease and maybe are not at all due to thyroid.

Symptoms began in 2000, and my bloodwork only showed very high positive thyroid antibodies (peroxidase and anti-thy). Every specialist I saw OTHER THAN endo's (thyroid docs) told me that my symptoms must be from thyroid, since they are probably autoimmune symptoms and that's the only autoimmune thing I had going on. Never treated for thyroid by endo because my TSH was normal.

Now, however, I have been diagnosed by a rheumy with "undifferentiated connective tissue disease" and put on Plaquenil. I've been on it for almost 2 months, and my joint pain and fatigue have lifted somewhat. However, the rheumy said that many of my symptoms may be thryoid-related not related to this other autoimmune condition.

Anyway, here are my symptoms:
* Fatigue
* Arthritis, with swollen knuckles and pain in ankles & knees
* Joint Pain
* Peripheral Neuropathy in both hands and feet
* Sun sensitivity: mild facial rash, 3 episodes of muscle pain & weakness lasting 2 weeks after sun exposure
* Long, heavy periods
* nipple discharge
* Brain fog and forgetfulness
* Cold body temp
* Blood pressure changes - dizzy on standing up

I know most of these can symptoms can be associated with thyroid disease and that is why I always thought that's what it was from. However, still no endo will treat based on my TSH.

Other recent blood work, just before rheumy diagnosed CTD showed:

ANA 1:320 speckled
Low RBC
Low C4 complement


My question to all of you (and I know there are a few out there that have both hypothyroid & lupus): Can all of my symptoms actually be due to CTD or some lupus-like disease, or should I keep pursuing what I feel has been an endless, fruitless search for someone to treat my thyroid problem?

Thanks in advance for any advice!!!
Sue

 
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Old 08-03-2004, 06:34 PM   #2
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lovemythreeguys2002 HB User
Re: Lupus Symp or hypothyroid

Hi Sue, I would say most of your symptoms could be the thyroid, but not the rash too much. Joint pain can be from both. My joint pain never went away upon thyroid treatment, even with ideal thyroid labs, so that is when I knew something else was going on. Do you have your last thyroid numbers? I was told I was 'normal' too until I get my labs. It is common to have both diseases together.

Nipple discharge is very much thyroid related and can also be something from the pituitary. It was my sisters first symptom of thyroid.
__________________
Lupus
****
Hypothyroid

Last edited by lovemythreeguys2002; 08-03-2004 at 06:35 PM.

 
Old 08-04-2004, 05:40 AM   #3
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SueQ HB User
Re: Lupus Symp or hypothyroid

Hi Lovemy..
Thanks for the reply. I do realize that all of the symptoms could be from thyroid, was even told by the rheumy that rashes sometimes can be from thyroid. That's where my frustration comes in.

At my last round of appts, right after the rheumy diagnosed ctd and started me on plaquenil, he sent me to another endo (I've seen 5 I think now). This one again told me based upon my numbers (which are now slightly below normal for T3 and in the lower 1/3 of range for T4 with a TSH of 1.25) that there is no way that my thyroid can be causing these symptoms and that probably they are all due to my "lupus" which is what the endo decided I have based upon the fact that the rheumy put me on plaquenil!

So, I have the endo telling me the symptoms are from lupus, and the rheumy telling me they are probably from thyroid. AARRGHH! This has been going on for 4 years!

I actually was on Armour for 2 years (natural doc) during which time I did feel much much better, but I was also on cortef at the same time. Once I got off cortef and stayed on Armour, the arthritis, joint pain & sun sensitivity started and the fatigue returned. Now I don't know if I felt better from the Armour or the Cortef but everyone says based upon my numbers I don't need either. I've been off Armour since January.

I at least am very grateful that the rheumy put me on plaq. And it is starting to help (I've been on it almost 2 months now and am starting to see improvement in fatigue).

So, anyway... I guess it is hard to separate which symptoms could be from which disease. I'm just wondering now if it is possible that they all could be from ctd/lupus and maybe the endos are correct that my thyroid is "fine". I haven't given up on getting thyroid treatment, but it is an exhausting battle!

 
Old 08-04-2004, 06:44 AM   #4
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Lupus Symp or hypothyroid

SueQ,

Have your drs. explained, to your satisfaction, why you have "nipple disharge"? Does this commonly happen with thyroid problems? If not, have you had a mammogram recently?

Plaquenil can take up to three or more months to hit full stride in your system (you were prob. told this already). Anyway, it's a good sign that your fatgue has lifted somewhat!

Take care! With my best wishes, Vee

 
Old 08-04-2004, 06:54 AM   #5
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SueQ HB User
Re: Lupus Symp or hypothyroid

Hi Vee,
Well, to answer your questions No & Yes. No, none of my docs have explained it, and it's been going on for 4 years, when other symptoms started. I've had my prolactin level checked many times, and it's always normal, plus I had an MRI way back when this started to check for a pit. tumor. Nothing. Also, had a mamogram in October.

However, I just saw a new gyne who is very thorough. He did a swab and is sending me to a brest specialist - waiting for that appt. We'll see if he can explain. I have a feeling he'll tell me it's from my untreated thyroid condition !!!

 
Old 08-04-2004, 07:10 AM   #6
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Re: Lupus Symp or hypothyroid

SueQ,

Good luck with your follow through with the breast specialist. Let us know how you're faring, if you have the time. Thinking of you, Vee

 
Old 08-10-2004, 07:35 PM   #7
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californiasunflower HB User
Re: Lupus Symp or hypothyroid

Hi SUEQ!

I was told I have autoimmune thyroiditis and put on a low dose of synthroid.
That determination was after an intermittent positive ANA (1:160, homogenous) with a high TSH. I have an eye problem which started this whole investigation. I was sent to the rheumy to be treated for a possible vasculitis (lupus), however, determined no signs but for mild autoimmune thyroiditis. Because the thyroid testing ranges are all normal, I have been told the same thing: "your symptoms are not from the thyroid based on the ranges." And I have not had any referral to an endo because the focus has been on other causes.

My fatigue has worsened and I've developed other symptoms: edema, tremors and my blood pressure gets higher each doctor visit. ---That's almost funny about the hi blood pressure!

I think my thyroid gland might be swollen and I was wondering if you have noticed that your is too? Did the endo and other doc check your throat (feel it for swollenness)?

 
Old 08-11-2004, 05:37 AM   #8
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SueQ HB User
Re: Lupus Symp or hypothyroid

Quote:
Originally Posted by californiasunflower
Did the endo and other doc check your throat (feel it for swollenness)?
Hi California,
Yes, each endo I've seen, as well as 2 gyne's and my internist all feel my thyroid all the time!!! And guess what? I've had a couple of them tell me it seems swollen (or say that I have a goiter - which is what a swollen thyroid is called) and then the rest tell me it's tiny, no problem. Just adds to my frustration.

So, since you haven't seen an endo, who put you on synthroid? Also, have you been diagnosed with anything else by the rheumy? If not, and your PCP is the one that prescribed your thyroid meds, I would go back to him/her and ask them to check your thyroid levels again. Maybe they will increase your meds to see if that clears up the symptoms or refer you to an endo now.

Good luck, and let us know what happens.

SueQ

 
Old 08-11-2004, 06:10 AM   #9
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patience 50 HB User
Re: Lupus Symp or hypothyroid

Hi SueQ,

I have a report here somewhere from the AACE web site that says normal ranges are just that; ranges. However, many patients don't feel well until their TSH is 1 or lower and their T3 and T4 is in the upper 1/4 of the normal ranges. You mentioned both of yours were in the lower end of normal. As far as severity of symptoms, some people feel more than others, some are more sensitive to pain and discomfort. Have you done any research on medical web sites for any of this?

Like Lovemythreeguys, I also have Hashi's and recently dxed Lupus. For many years I lived on Advil or Excedrin because the thyroid medication didn't take symptoms away. I had pain in my back, shoulders, knees, hips, ankles, with swelling and heat. It is dreadful to know there is something wrong and have all the Dr.s tell you there isn't. Don't doubt yourself. You know your body better than anyone else does. Sounds like something is going on but besides thyroid but I do think you may need to get those thyroid #s changed some.

Also, with Hashi's, I believe it is possible for the thyroid to be swollen one time and not the next. It is an active malady and sometimes will flare like any other rheumatiod disease.

Good luck. Hope you find answers soon and feel better.

May God Bless You
Patience 50/ Bonnie

 
Old 08-11-2004, 07:48 AM   #10
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californiasunflower HB User
Re: Lupus Symp or hypothyroid

Quote:
Originally Posted by SueQ
Hi California,
Yes, each endo I've seen, as well as 2 gyne's and my internist all feel my thyroid all the time!!! And guess what? I've had a couple of them tell me it seems swollen (or say that I have a goiter - which is what a swollen thyroid is called) and then the rest tell me it's tiny, no problem. Just adds to my frustration.

So, since you haven't seen an endo, who put you on synthroid? Also, have you been diagnosed with anything else by the rheumy? If not, and your PCP is the one that prescribed your thyroid meds, I would go back to him/her and ask them to check your thyroid levels again. Maybe they will increase your meds to see if that clears up the symptoms or refer you to an endo now.

Good luck, and let us know what happens.

SueQ
HI SueQ!

The rheumie found no signs that he could treat. PCP is handling the thyroid and I see him soon so will talk about the concerns. I'm still in limboland as far cause of other symptoms.

I agree--I find the thyroid condition and treatment really frustrating. I'd rather deal with toe or finger amputation!

Thanks for the response! I appreciate it as well as the info Patience passed on!

 
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