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Sjorgren syndrome or another autoimmune disease?
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Sjorgren syndrome or another autoimmune disease?

My daughter is 18 years old. She has had severe fatigue and achy muscles for several months. Her lab work was normal except for the sed rate, which was 108. They repeated it a month later and it was 118, with positive antibodies. The doctor says it is Sjogren syndrome, but my daughter doesn't have dry eyes or mouth and she is very young for Sjogren syndrome.  What else might she have?
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1530171_tn?1362547225
Hi mollysue1 and welcome to the forum.

The doctor is nowhere close to such a dx, for either primary or secondary
Sjogren syndrome.  
A high sed is only indicative of inflammation. Meds, even the birh control pill
can cause a high sed rate.

Your daughter needs to rule out food allergies, gluten and or wheat intolerance,
candida infection, or other underlying infection
Anyone of those can cause chronic fatigue and muscular aches.

Was there anything significant that happened before the onset of her symptoms?

Please post again to comment or if you have any questions.

Wishing you and your daughter well.
  Niko
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Avatar_n_tn
Thanks for such a prompt response!  My daughter has a long history of physical challenges. I don't know what, if any, are relevant here. She was hospitalized for 6 weeks for extreme malnutrition as a toddler. I adopted her and she recovered and was very healthy and on track for development. She developed strep, which they had trouble curing, when she was 8 years old; at one point they said she was a carrier with no symptoms, but maintained treatment. Throat cultures became negative and have been so ever since. She remained very healthy and physically fit (black belt in karate; cross-country team) until last year. She began to need about 11 hours of sleep/night and get headaches bad enough to cause vomiting, but they were in the back of her head vs the forehead (so not classic migraine?) and were treatable without prophylactic meds. I took her out of regular high school and started her in online school so she could sleep more; however, the fatigue continued and the aches became worse. The rheumatologist said she "passed" all of the trigger points for fibromyalgia but also ran the tests for autoimmune disease; I think the positive antibodies are what she says confirms the SS diagnosis. She prescribed a low dose of prednisone a couple of weeks ago (after the high sed rates, so that's not the cause); that has helped somewhat. I took her off gluten last month--no effect. Last night she said one of her arms became shaky and the forearm became numb for several hours.
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1530171_tn?1362547225
The  SS diagnostic criteria are listed at the Sjögren's Syndrome Foundation website, if you want to check it out.

My opinion is that your daughter, developed some sort of a predisposition  to infection when she was being treated - with difficulties - for her original strep infection. And being a carrier- not sure if this is another factor.

There's possibility of  a systemic underlying infectious condition responsible, with at least one of these 2 antibodies present when active: Anti-SSA (Ro) or Anti-SSB (La) - commonly found in SLE or Sjögren's Syndrome, but not exclusive, therefore not diagnostic on their own.
These conditions just don't happen, but rather develop over time and remaining dormant until activated by certain triggers like stress, imbalances
deficiencies, lowered immunity, trauma etc.

Please do a search here, under Dr. Garth Nicolson, the leading expert in this field and A regular contributor in the A/I Community.
This will help you get a better understanding of what may be involved.
You  should still consider getting Candida Infection and Food Allergies ruled out for her, first.
  Please read some of my recent posts here, for information on self tests
for those.

There are many cases of Multiple Sclerosis and similar conditions, when
caused mainly by systemic Candidiasis, are curable with a comprehensive Protocol consisting of Detox, Nutritional Medicine and Diet.

If you need any more details on anything, post again or pm me directly.
Niko
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798555_tn?1292791151
Fatigue and muscle pain and numbness in the wrists / hands are classic symptoms of auto-immune (Hashimoto) and non-autoimmune hypothyroid.

I hope they tested Free T3 and Free T4 , not just TSH. There are specific antibodies for autoimmune Hashimoto as well: TGab, and TPO.
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Initial tests run by the family practice MD were normal except for the sed rate (T3, T4, and TSH, CBC, liver function, kidney function). Vitamin D was at the low end of normal; on our first visit to the rheumatologist, she prescribed vitamin D. I don't know all of the antibodies checked on the second set of labs, but they drew 9 vials of blood.
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798555_tn?1292791151
You can have Hashimoto symptoms in the beginning with elevated TGab, TPO or both before it affects the Free T3 and Free T4. It might be easier to skip right to TGab and TPO blood tests. Like other antibody tests , they have a limit or threshold, not a range.

FYI: Free T3 and Free T4 results in the low end of the range will still produce symptoms in most people. The range is just an average of many people, so its flawed.

Free T3 and Free t4 are more accurate than just T3, T4 or total T3, T4.

TSH is not even a thyroid hormone your cells use, its just a signal.

Hope you figure this out soon.



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1530171_tn?1362547225
Hi to both of you.
While you're at this subject FYI:
Type 2 hypothyroid- thyroid hormone resistance- is VERY widespread
(not according to blood tests-lol!),while the vast majority of MDs don't check for this! The clinical symptoms are the same.
In type 2 blood test results are totally meaningless.
It's caused mainly by mineral imbalances- an excess of calcium and very low potassium- being the usual culprits, although some researchers claim there may be a genetic link.
Niko
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798555_tn?1292791151
Well you are digging a little deeper here. Medically speaking into non-proven territory, why most MD's will say its nonsense. Its more commonly refereed to thyroid hormone resistance. And there is very little information about this. I believe some recent authors have begun calling it Type 2 hypothyroidism.

For those that don't know:, type 2 does not include antibodies as the cause of being hypothyroid. There body's cells develop a resistance to their own body's produced thyroid hormone.

High calcium is also a symptom of parathyroid disease. Like thyroid, parathyroid has its hypo and hyper versions, one type pulling calcium out of the bones and leaving it in the blood, making people sick.

In hypothyroidism, autoimmune and non-autoimmune, the best measurement of thyroid hormone out put is the Free T3 and Free T4 levels. These measure unbound, ready to use, available T3 and T4 hormone floating around in the blood. It does not measure what your cells are actually consuming. Some people, are to some extent, resistant to certain thyroid meds (replacement hormone). I am one of those rare individuals. These people can increase thyroid replacement resulting in maximum range of both T3 and T4 while still having symptoms for months, even years. Changing to a brand and/or type of replacement hormone which the individuals cells accept is the key, its trail and error. There is no specific name for this.

In rare occasions the T3 hormone can take on a reverse shape so to speak and not fit in the cell receptors. This is refereed to as reverse T3. A RT3 test will show this, but most Drs dont believe in it since its well beyond their training.To correct it is by means of taking even more T3 hormone which eventually forces the reversed / upside down / stuck T3 into the cells. Its really no different than taking a plunger to a plugged toilet LOL.

The thyroid forum here has had only a couple of people who thought they had thyroid hormone resistance and there is very little info on this. These were also nontechnical people, so they didn't elaborate much on their condition, except for the fact that there is only a handful of Drs in the US that treat it.

MollysueI realize that all this may seem a little off subject.

Nikodicreta: since THR is thought to be rare (or at least rarely diagnosed), how do you come to the conclusion that's its very widespread. I'm not doubting, just wondering the source of information (any good links?) since thyroid groups (here and other places) hardly even mention it. Its not commonly thought to be wide spread, which you know.

What are the tests you mention Drs dont check besides putting symptoms, and calcium + potassium levels together? I would imagine insurance accepting MD's would have no part of this and naturalpath Drs are the only ones doing this.

LM























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Avatar_f_tn
Hi there! I am sorry to hear about the battle your daughter is going through while attempting to get a diagnosis explaining all of her symptoms. I am a 51 year old female and I was diagnosed with primary Sjogren's syndrome 6 months ago. I also do not have the symptoms of dry eyes and mouth. However, I am starting to experience other symptoms associated with the disease now. I have an awful rash and severe muscle and joint pain. My blood work was confirmed last month as the tests were repeated at a University hospital. I wish her all the luck in finding a diagnosis and finding suitable treatment. She is really extremely young to have this disease.
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1530171_tn?1362547225
Hey LM,

Some observations.
-Nutritional Medicine will never reach the ranks of conventional medicine
b/c of its holistic and natural approach to illness.
-The lack of funding for large studies - which are the domain of big Pharma- keeps conventional medicine disinterested in Nutritional Medicine or in any
Alternative Medicine field in general.
-Thyroid type 2, unfortunately falls on the "wrong" side of medical conditions.
With the billions of dollars involved in prescription drugs, treating an non-existent "invisible" condition (it doesn't show in any blood tests) with an endless list of possible symptoms, one can see why this will not change any time soon.
-Low tissue potassium is associated with reduced sensitivity of the mitochondrial receptors to thyroid hormone.  
- High tissue calcium inhibits the release of thyroid hormones.

Look into the work of  Broda Barnes, MD, PhD
and Dr. Mark Starr author of "Hypothyroidism Type 2: The Epidemic"
I have also listened to an extensive interview with Dr. Starr, with many references and eye opening information.
I'll try to find the link, as it has been a while since I referred to this.
Also from the Townsend Newsletter:
Lisser, H., and Escamilla, R.F.. Atlas of Clinical Endocrinology: Including Text of Diagnosis and Treatment. C.V. Mosby Company, 1957.

Take care
Niko

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