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Unknown auto-immune disease
I am posting this for my wife. She is 26, 5’4” and 49 Kgs
2 years back her weight used to be 59 kgs. She lost around 10 kg weight in the course of an year from that time. Since the last year she is holding steady around 48-49.
She complains of a constant headache, fatigue and irritability with some weird sensations - like there is a layer of dense, unmoving mass below the hairline. Sometimes she has a strong temptation to turn her hair from one side to another to overcome this sensation.
When the headache intensity increases, her right eye tends to become slightly smaller than the left one. She also complains of a constant ringing sensation in her right ear, and in the throat as well. Her right nostril remains blocked most of the time as well. And yes, she has a lot of hair loss.
She also complains of aches in her legs from thighs to the calfs including the knee. This increases on lying down in the night and decreases a little with exercise and walking around. A month back it used to be so high that it disturbed her sleep, but since then it has come down.
The ENT specialist said it might be ear wax and sinusitis and gave wax-dissolving ear drops, anti-allergic medicine and suggested steam inhalation morning and evening. However, none of that helped much.
From the blood tests, there appears to be some hormonal imbalance and more importantly some auto immune issues. We consulted a rheumatologist and he ruled out Sjögren's Syndrome. But he is not sure what to make of it. An endocrinologist was also not much help.
So at this point, we have a bunch of symptoms and positive reports but no diagnosis. Thusly, turning to the Internet for pointers and help. She had a road accident 6-7 years back with a head injury but on the surface it seems to have healed completely. We are wondering if there is anything under the right side of the skull that may be causing any issues.
Here are the significant readings from the blood test reports:
Total Proteins: 9.0 (high)
Albumin: 4.34
Globulin: 4.59 (high)
A/G ratio: 0.9 (low)
Creatinine: 1.17 (within range but on the higher side)
Chlorides: 90 (low)
Thyroid Profile
T3: 94.8 (in range)
T4: 4.9 (in range)
TSH: 6.45 (high)
CBC
Lymphocytes: 47.5 (high)
ESR: 40 (high)
SGPT: 28 (slightly low)
Protein Electrophoresis Serum
Total Protein: 9.0 (high)
Albumin: 4.85 (high)
Alpha 1 and Alpha 2 in range
Beta 0.68 (low)
Gamma: 2.51 (high)
Myeloma band: Not detected
Comment: Mild Hyper Albuminemia with decrease in beta globulin and polyclonal increase in gamma globulins seen.
CRP: 0.80 (in range)
EIA Auto Immune
Anti CCP Antibodies: 56.42 (high)
Vitamin D and B12 were fine.
Any help, pointers or suggestions for further investigations are greatly appreciated.
AutoImmune IFA
Anti Nuclear Antibodies: Positive
Primary Dilution: 1:40
Primary Intensity On If: 1+
ANA pattern: Speckled
End Point Titre: 1:80
Comment: Low Titre Positive results for ANA may occur in normal healthy people. Results must be interpreted clinically.
2 years back her weight used to be 59 kgs. She lost around 10 kg weight in the course of an year from that time. Since the last year she is holding steady around 48-49.
She complains of a constant headache, fatigue and irritability with some weird sensations - like there is a layer of dense, unmoving mass below the hairline. Sometimes she has a strong temptation to turn her hair from one side to another to overcome this sensation.
When the headache intensity increases, her right eye tends to become slightly smaller than the left one. She also complains of a constant ringing sensation in her right ear, and in the throat as well. Her right nostril remains blocked most of the time as well. And yes, she has a lot of hair loss.
She also complains of aches in her legs from thighs to the calfs including the knee. This increases on lying down in the night and decreases a little with exercise and walking around. A month back it used to be so high that it disturbed her sleep, but since then it has come down.
The ENT specialist said it might be ear wax and sinusitis and gave wax-dissolving ear drops, anti-allergic medicine and suggested steam inhalation morning and evening. However, none of that helped much.
From the blood tests, there appears to be some hormonal imbalance and more importantly some auto immune issues. We consulted a rheumatologist and he ruled out Sjögren's Syndrome. But he is not sure what to make of it. An endocrinologist was also not much help.
So at this point, we have a bunch of symptoms and positive reports but no diagnosis. Thusly, turning to the Internet for pointers and help. She had a road accident 6-7 years back with a head injury but on the surface it seems to have healed completely. We are wondering if there is anything under the right side of the skull that may be causing any issues.
Here are the significant readings from the blood test reports:
Total Proteins: 9.0 (high)
Albumin: 4.34
Globulin: 4.59 (high)
A/G ratio: 0.9 (low)
Creatinine: 1.17 (within range but on the higher side)
Chlorides: 90 (low)
Thyroid Profile
T3: 94.8 (in range)
T4: 4.9 (in range)
TSH: 6.45 (high)
CBC
Lymphocytes: 47.5 (high)
ESR: 40 (high)
SGPT: 28 (slightly low)
Protein Electrophoresis Serum
Total Protein: 9.0 (high)
Albumin: 4.85 (high)
Alpha 1 and Alpha 2 in range
Beta 0.68 (low)
Gamma: 2.51 (high)
Myeloma band: Not detected
Comment: Mild Hyper Albuminemia with decrease in beta globulin and polyclonal increase in gamma globulins seen.
CRP: 0.80 (in range)
EIA Auto Immune
Anti CCP Antibodies: 56.42 (high)
Vitamin D and B12 were fine.
Any help, pointers or suggestions for further investigations are greatly appreciated.
AutoImmune IFA
Anti Nuclear Antibodies: Positive
Primary Dilution: 1:40
Primary Intensity On If: 1+
ANA pattern: Speckled
End Point Titre: 1:80
Comment: Low Titre Positive results for ANA may occur in normal healthy people. Results must be interpreted clinically.
Thanks again Red_Star!
We visited a thyroid specialist today and my wife's samples have been given for the TPOAb and the TgAb tests along with Free T3, and T4. Btw, I had forgot to mention that she had increased LDL and low HDL from the bloodwork so that may be another symptom from the HT ..!
Her B12 was actually 600+ so hopefully she is covered on that front.
The physician also explored a head injury she had 6 years back and wants us to do a repeat MRI of the head and neck region to rule out any complications resulting from it. Because when she throws back her neck or lies down she feels a bit dizzy.
Again, appreciate your detailed suggestions very much!
We visited a thyroid specialist today and my wife's samples have been given for the TPOAb and the TgAb tests along with Free T3, and T4. Btw, I had forgot to mention that she had increased LDL and low HDL from the bloodwork so that may be another symptom from the HT ..!
Her B12 was actually 600+ so hopefully she is covered on that front.
The physician also explored a head injury she had 6 years back and wants us to do a repeat MRI of the head and neck region to rule out any complications resulting from it. Because when she throws back her neck or lies down she feels a bit dizzy.
Again, appreciate your detailed suggestions very much!
1 Comments
i have a similiar condition as his wife but in my case every thing is normal except my ana report is positve dilution shows 1:40 pattern is speckled and end point is also 1:40 i want to ask should i hav to panic i hav gone through from 3 miscarriages.i wanna ask can i get pregnant nd going through a normal delivery how much chances i hav of being pregnant nd not going through miscarriage
Hi again. :) Hypothyroidism can cause weight gain or weight loss. Weight gain is more common however.
Excerpt from the article by Hypothyroid Mom: "300+ Hypothyroidism Symptoms…Yes REALLY":
"Weight:
Weight gain
Inability to lose weight
Ascites (abdominal fluid accumulation)
Metabolic Syndrome
Weight loss
Anorexia
Heightened appetite
Diminished appetite
Obesity"
One study showed that thyroid patients with high thyroid antibodies report more symptoms than patients with low thyroid antibodies, even if their thyroid function tests were normal.
It can take many years for the TSH to rise above the reference range in response to falling free T4 levels. Free T3 levels are typically the last to fall below the range although if you have poor T4 to T3 conversion this will not be the case.
Just to add, new studies have found vitamin B12 deficiency symptoms can occur up to 500 - 600 pg/mL (369 - 442.8 pmol/L).
Excerpt from the article by Hypothyroid Mom: "300+ Hypothyroidism Symptoms…Yes REALLY":
"Weight:
Weight gain
Inability to lose weight
Ascites (abdominal fluid accumulation)
Metabolic Syndrome
Weight loss
Anorexia
Heightened appetite
Diminished appetite
Obesity"
One study showed that thyroid patients with high thyroid antibodies report more symptoms than patients with low thyroid antibodies, even if their thyroid function tests were normal.
It can take many years for the TSH to rise above the reference range in response to falling free T4 levels. Free T3 levels are typically the last to fall below the range although if you have poor T4 to T3 conversion this will not be the case.
Just to add, new studies have found vitamin B12 deficiency symptoms can occur up to 500 - 600 pg/mL (369 - 442.8 pmol/L).
Red_Star:
That is brilliant! After your suggestion, I have been researching HT for the last 2-3 hours. Most of my wife's symptoms (some not listed above) do seem to be matching. The only exception being weight gain. But it seems very promising as far as diagnosis is concerned.
I will try finding another endocrinologist and get them to do the tests you have suggested and also a throat ultrasound. Although her TSH is elevated, her T3/T4 were in range. I guess this might be the initial onset phase and T3/T4 may dip down in a few months. Anyways, I was wondering if a free T3/T4 would be advisable.
89NotAgain:
No, she never really complains about any "burn" or hurt on touching, but thanks very much for the commiseration and the sharing. I am based in India but I have lived in the US for 8 years earlier in my life. And I can totally relate to the frustration and the bureaucratic approval process for non-ordinary diseases over there. Sometimes it used to feel a complete racket between the medical and insurance community.
The good thing here in India is that you can take an appointment with just about any doc and walk into any pathology lab to get whatever blood work you need get done. The frustrating thing is, just like the US, finding a doc who has overarching knowledge across specialities (e.g. endocrine and immunology and ENT) remains a challenge. And the good ones have month long waiting times for the appointment.
Our lot is to keep researching (thanks to the Internet) and keep trying out docs and challenging them. Wish you All the Best!
That is brilliant! After your suggestion, I have been researching HT for the last 2-3 hours. Most of my wife's symptoms (some not listed above) do seem to be matching. The only exception being weight gain. But it seems very promising as far as diagnosis is concerned.
I will try finding another endocrinologist and get them to do the tests you have suggested and also a throat ultrasound. Although her TSH is elevated, her T3/T4 were in range. I guess this might be the initial onset phase and T3/T4 may dip down in a few months. Anyways, I was wondering if a free T3/T4 would be advisable.
89NotAgain:
No, she never really complains about any "burn" or hurt on touching, but thanks very much for the commiseration and the sharing. I am based in India but I have lived in the US for 8 years earlier in my life. And I can totally relate to the frustration and the bureaucratic approval process for non-ordinary diseases over there. Sometimes it used to feel a complete racket between the medical and insurance community.
The good thing here in India is that you can take an appointment with just about any doc and walk into any pathology lab to get whatever blood work you need get done. The frustrating thing is, just like the US, finding a doc who has overarching knowledge across specialities (e.g. endocrine and immunology and ENT) remains a challenge. And the good ones have month long waiting times for the appointment.
Our lot is to keep researching (thanks to the Internet) and keep trying out docs and challenging them. Wish you All the Best!
While reading you're post, I tried to relate to ur wifes symptoms. Gonna be honest here. I have a handful of illnesses, dystrophy & syndromes yet all
that she is going through would surely do me in.
I know the search for answers crap we go through.
Did u know that Docs in the US & Canada are rejecting patients with too many illnesses? This may not apply in the rest of the world. I experienced this repeated turn down, by 6 MD's in one county alone. This got to me. I blamed myself though I hadn't done anything wrong. I kept searching for what was going on. Took a long time to find my answer. Glad I did because I was beginning to cry before I could get out the clinic. I realize this isn't something that will help her. Omgosh she really needs help I've never read so much like this happening. I do have Shjogrens and it can be a nightmare. I have CPRS/RSD also a very bad life altering no cure monster.
I do have a question. Is any part of your wife's body ever "burn" or hurt when touched? The description of what she feels on/in her scalp, the same happened to my left foot where the RSD began. I hated to wear a shoe. Many times I couldn't. I also had an area on my scalp where the hair just fell out. Area wasn't infected. Just bald spot, I got no diagnosis for that. I wish u & your wife a diagnosis and a cure. I have been alone through all by myself mostly. You are a fantastic husband please keep it going cause it's nearly as
bad for you...her caretaker. Embarrassing that it took me an hour n a half to write this and I don't think any my friends here know this. Only you.
that she is going through would surely do me in.
I know the search for answers crap we go through.
Did u know that Docs in the US & Canada are rejecting patients with too many illnesses? This may not apply in the rest of the world. I experienced this repeated turn down, by 6 MD's in one county alone. This got to me. I blamed myself though I hadn't done anything wrong. I kept searching for what was going on. Took a long time to find my answer. Glad I did because I was beginning to cry before I could get out the clinic. I realize this isn't something that will help her. Omgosh she really needs help I've never read so much like this happening. I do have Shjogrens and it can be a nightmare. I have CPRS/RSD also a very bad life altering no cure monster.
I do have a question. Is any part of your wife's body ever "burn" or hurt when touched? The description of what she feels on/in her scalp, the same happened to my left foot where the RSD began. I hated to wear a shoe. Many times I couldn't. I also had an area on my scalp where the hair just fell out. Area wasn't infected. Just bald spot, I got no diagnosis for that. I wish u & your wife a diagnosis and a cure. I have been alone through all by myself mostly. You are a fantastic husband please keep it going cause it's nearly as
bad for you...her caretaker. Embarrassing that it took me an hour n a half to write this and I don't think any my friends here know this. Only you.
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Serological markers for Hashimoto's thyroiditis:
Thyroid peroxidase antibodies (TPOAb): found in 90 - 95% of cases
Thyroglobulin antibodies (TgAb): found in 55 - 90% of cases
Cyclic Citrullinated Peptide (CCP) antibody is a highly specific (90%–98%) marker of rheumatoid arthritis.
An excerpt from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer:
"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.
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