Newbie and Undiagnosed

[Gerri]

My name is Gerri, I am 56 year old female, who has run the gambit of diagnoses. Finally MS has been ruled out. Lupus is sitting on the back burner. I have been diagnosed with severe obstructed sleep apnea, Celiac, Ankylosing Spondylitis, Vitiligo, Sjogren's, high blood pressure, cholesterol problems, diabetis, multi-chemical sensitivities, many allergies (food, environmental, drugs, severe photo-sensitivity, many Central, Nervous Systems, GERDs (real bad), etc). My health issues are growing by the minute.

Why I have joined this forum, is because of my Hashimoto's/Hypothyroidism disease symptoms.
1. possible goiter (enlargement of the thyroid gland) (grandmother on father's side also had goiter)
2. vitamin D deficiency
3. zinc deficiency
4. hormone(s) deficiency especially progesterone - unable to take hormones because send me into Porphyria like flare
5. Malar rashes (possible lupus or Porphyria (sister diagnosed with Porphyria)- undiagnosed
6. Unexplained elevated liver enzymes
7. Cortisol levels, very high (above normal) after lunch, and dinner hours. Stay very high and then have insomnia at night time. By morning the Cortisol levels fall below normal.
8. have Cyst on left adrenal gland - not growing fast over last 6 years - dr. not concerned.

I have the following symptoms of hypothyroidism, as detailed by the Merck Manual, the American Association of Clinical Endocrinologists, and the Thyroid Foundation of America

__x__ I am gaining weight inappropriately
__x__ I'm unable to lose weight with diet/exercise
__x__ I am constipated, sometimes severely
__x__ I have hypothermia/low body temperature (I feel cold when others feel hot, I need extra sweaters, etc.)
__x__ I feel fatigued, exhausted
__x__ Feeling run down, sluggish, lethargic
__x__ My hair is coarse and dry, breaking, brittle, falling out
__x__ My skin is coarse, dry, scaly, and thick
__x__ I have a hoarse or gravely voice
__x__ I have puffiness and swelling around the eyes and face
__x__ I have pains, aches in joints, hands and feet
__x__ I have developed carpal-tunnel syndrome, or it's getting worse
__x__ I am having irregular menstrual cycles (longer, or heavier, or more (frequent) - did have until had hysterectomy (2004)
____ I am having trouble conceiving a baby
__x__ I feel depressed
__x__ I feel restless
__x__ My moods change easily
__x__ I have feelings of worthlessness
__x__ I have difficulty concentrating
__x__ I have more feelings of sadness
__x__ I seem to be losing interest in normal daily activities
__x__ I'm more forgetful lately

I also have the following additional symptoms, which have been reported more frequently in people with hypothyroidism:

__x__ My hair is falling out
__x__ I can't seem to remember things
__x__ I have no sex drive
__x__ I am getting more frequent infections, that last longer
____ I'm snoring more lately
__x__ I have/may have sleep apnea
__x__ I feel shortness of breath and tightness in the chest
__x__ I feel the need to yawn to get oxygen
__x__ My eyes feel gritty and dry
__x__ My eyes feel sensitive to light
__x__ My eyes get jumpy/tics in eyes, which makes me dizzy/vertigo and have headaches
__x__ I have strange feelings in neck or throat
__x__ I have tinnitus (ringing in ears)
__x__ I get recurrent sinus infections
__x__ I have vertigo (only on occasion)
__x__ I feel some lightheadedness
__x__ I have severe menstrual cramps (had hysterectomy - had all my life growing up.

I think I have covered all my symptoms (lol). Haven't found a doctor here in South Eastern Ontario, Canada who will diagnose me.

Hope to meet a lot of new friends. Please tell me what you think.

Hugs
Gerri

[Lovlkn]

Welcome Gerri,

You certainly have alot of the typical hypo symptoms.

Lab tests will confirm if it is hashimotos or not. Have you ever had a TSH run? A FT-4 and FT-3 would be good tests as well. How about antibodies testing? Have you ever had a TPO or a TSI?

[Andros]

My name is Gerri, I am 56 year old female, who has run the gambit of diagnoses. Finally MS has been ruled out. Lupus is sitting on the back burner. I have been diagnosed with severe obstructed sleep apnea, Celiac, Ankylosing Spondylitis, Vitiligo, Sjogren's, high blood pressure, cholesterol problems, diabetis, multi-chemical sensitivities, many allergies (food, environmental, drugs, severe photo-sensitivity, many Central, Nervous Systems, GERDs (real bad), etc). My health issues are growing by the minute.

Why I have joined this forum, is because of my Hashimoto's/Hypothyroidism disease symptoms.
1. possible goiter (enlargement of the thyroid gland) (grandmother on father's side also had goiter)
2. vitamin D deficiency
3. zinc deficiency
4. hormone(s) deficiency especially progesterone - unable to take hormones because send me into Porphyria like flare
5. Malar rashes (possible lupus or Porphyria (sister diagnosed with Porphyria)- undiagnosed
6. Unexplained elevated liver enzymes
7. Cortisol levels, very high (above normal) after lunch, and dinner hours. Stay very high and then have insomnia at night time. By morning the Cortisol levels fall below normal.
8. have Cyst on left adrenal gland - not growing fast over last 6 years - dr. not concerned.

I have the following symptoms of hypothyroidism, as detailed by the Merck Manual, the American Association of Clinical Endocrinologists, and the Thyroid Foundation of America

__x__ I am gaining weight inappropriately
__x__ I'm unable to lose weight with diet/exercise
__x__ I am constipated, sometimes severely
__x__ I have hypothermia/low body temperature (I feel cold when others feel hot, I need extra sweaters, etc.)
__x__ I feel fatigued, exhausted
__x__ Feeling run down, sluggish, lethargic
__x__ My hair is coarse and dry, breaking, brittle, falling out
__x__ My skin is coarse, dry, scaly, and thick
__x__ I have a hoarse or gravely voice
__x__ I have puffiness and swelling around the eyes and face
__x__ I have pains, aches in joints, hands and feet
__x__ I have developed carpal-tunnel syndrome, or it's getting worse
__x__ I am having irregular menstrual cycles (longer, or heavier, or more (frequent) - did have until had hysterectomy (2004)
____ I am having trouble conceiving a baby
__x__ I feel depressed
__x__ I feel restless
__x__ My moods change easily
__x__ I have feelings of worthlessness
__x__ I have difficulty concentrating
__x__ I have more feelings of sadness
__x__ I seem to be losing interest in normal daily activities
__x__ I'm more forgetful lately

I also have the following additional symptoms, which have been reported more frequently in people with hypothyroidism:

__x__ My hair is falling out
__x__ I can't seem to remember things
__x__ I have no sex drive
__x__ I am getting more frequent infections, that last longer
____ I'm snoring more lately
__x__ I have/may have sleep apnea
__x__ I feel shortness of breath and tightness in the chest
__x__ I feel the need to yawn to get oxygen
__x__ My eyes feel gritty and dry
__x__ My eyes feel sensitive to light
__x__ My eyes get jumpy/tics in eyes, which makes me dizzy/vertigo and have headaches
__x__ I have strange feelings in neck or throat
__x__ I have tinnitus (ringing in ears)
__x__ I get recurrent sinus infections
__x__ I have vertigo (only on occasion)
__x__ I feel some lightheadedness
__x__ I have severe menstrual cramps (had hysterectomy - had all my life growing up.

I think I have covered all my symptoms (lol). Haven't found a doctor here in South Eastern Ontario, Canada who will diagnose me.

Hope to meet a lot of new friends. Please tell me what you think.

Hugs
Gerri

Gerri; welcome.

Boy; I do think you have thryoid disease and Lupus.

For Lupus, you must get these tests.............

Anti-DNA, C3 and C4.

What thyroid tests have been run? What antibodies' tests? Any sonograms or uptake scan of the thyroid?

I suggest these tests.....

TSI (thyroid stimulating immunoglobulin),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/understanding/conditions/thyroid.html

You can use this link to look up the Lupus tests as well.

I feel bad for you as you sound really really ill and very discouraged.

Hope we can all rally around and help you!

[Gerri]

The last TSH - I believe was normal. I was told that my hormones were very low. My ANA has been up to 80, by dsDNA has been high as 36.1 when normal was below 10. (last test they were normal). I was told that the definitive test for lupus was a possible false positive, because of possible Porphyria.

No other antibody testing has been done. Will ask doctor for TPO and TSI test when I see him at end of month.

Hugs
Gerri

[Gerri]

Hi Andros,

I am making a list of tests suggested here, and presenting them to my Dr., whom I see at the end of the month. Plus I am taking a picture of my grandmother who had a goiter. I have swelling of the thyroid (goiter). For many years I've had sore throat, and constant pain where thyroid is. I have asked to be referred to an Endocrinologist, but the referral has not been made.

I am very discouraged, and my Rheumy is aware of my many multiple comorbidities. My many allergies, and bronchial asthma, possible porphyria, makes it impossible to treat my health issues.

One good thing, I will be getting my service puppy (standard poodle) home September 1st. It's becoming to hard to deal with depression, and anxiety on my own. So Sept. 1st can't come fast enough.

Hugs
Gerri

[Debbie from Milwaukee]

I would mention one or two other things: see if you could have a magnesium RBC (red blood cell) test. This is different than the standard magnesium blood test. My middle daughter was found to be critically low in magnesium to the point that her doc gave her an IV treatment of madnesium and B12 vitamin. Magnesium can be depleted by thyroid malfunction (suspected in you) as well as adrenal problems (and you have high corsisol in the afternoon and evening, thus contributing to insomnia). The extreme photo sensitivity and slow reflexes are signs of magnesium deficiency.

Perhaps there are some things you can ask your doctor to give you a little relief. A lot of people on thyroid forums like this advise others with endocrine problems to avoid the "white stuff" (white flour, white sugar, excess salt, etc.). Some even adjust their diet to avoid gluten. If you have Hashimoto's thyroiditis, your thyroid problems are not going to go away, so don't worry that a better diet will alter a blood test so you get no meds if you need them for your thyroid. I believe there are nutrient supplements you can find that don't cost an arm and a leg that include good minerals for the thyroid such as selenium, magnesium, B12, etc. Just always be sure to check any nutrient supplement with your doctor's office, especially because you have so many certain or suspected disorders.

I'm glad you WILL be seeing a doctor in about 2 weeks! Get whatever support you need here, and try to hang in there...

[Gerri]

Hi Debbie, thanks for your answers - I can see me lab work from next appointment - will be quite extensive.

Last test (Trace Elements Laboratory Report Elements in Erythrocytes) - my magnesium - result was 1.91 mmol/L - the lab report put my reading at low normal. My Selenium - result 2.99 umol/L - the lab report put it even lower than Magnesium, but still in low normal. My Chronium, Vanadium, and Zinc were below normal.

Meds my dr. wants me to take have chemicals (sulfites (Anaphaltic shock), sulfates (rashes - labored breathing), sulfur (labored breathing) in them, which I am highly allergic/or severely sensitive too - had to stop taking them, after very short try. Most meds, vitamins - causing welts, and breathing problems. Dr. thinking about trying to try to introduce vitamins and such by intravenous. I know I can't have hormones like predisone, pregnenolone etc, had severe allergic reaction. Only meds I take at the moment is Coversyl (BP med), Generic Chloritriplon (sp), B12 pill, and Seriphos (at night to help me get to sleep). Very seldom take inhalers or asthma - only in emergency as sulfates in them. I have an epi pen - but afraid to use it - but will - it has sulfites in it.

I am already following a very strict Celiac diet. Still have problem with sugar, and salt (but now use Celtic sea salt - doctor orders - helps lower high blood pressure).

Hugs
Gerri

[Andros]

The last TSH - I believe was normal. I was told that my hormones were very low. My ANA has been up to 80, by dsDNA has been high as 36.1 when normal was below 10. (last test they were normal). I was told that the definitive test for lupus was a possible false positive, because of possible Porphyria.

No other antibody testing has been done. Will ask doctor for TPO and TSI test when I see him at end of month.

Hugs
Gerri

It is possible to have both; of course you know that.
http://rheumatology.oxfordjournals.org/cgi/content/abstract/28/3/254

Glad you are getting TPO (antimicrosomal antibodies) and TSI (thyroid stimulating immunoglobulin.) Very excellent.

[Debbie from Milwaukee]

Gerri:

Wow--I am humbled by seeing all you have to deal with as well as all that you and your doc have already discovered. My prayers and well wishes go out to you...

Since you obviously do your homework, have you found an online forum so you can get informational and emotional support from other people who are severely allergic/sensitive to so many things? I don't know if it violates the rules on this forum to share about another forum, but I'd just like to know if you have found one for yourself.

Take care, and hope that the thyroid suspicions get fully investigated and that they can give your something to help your health improve!

[Gerri]

Hi Debbie

I haven't found another forum to deal with my many allergies or sensitivities. My Rheumy is scared to prescribe drugs, and is in the process of transferring me to another Rheumy (lol).

Porphyria has not been rules out. It is not uncommon to have multi-chemical sensitivities with Porphyria. What is hard is finding a doctor here in Canada, who knows much about the disease. As my sister has already been diagnosed with this disease, and it's genetic, I might get the diagnoses easier. I am being tested for UV sensitivity, the end of Nov. first part of Dec. It is my understanding that Thyroid problems, may have caused my possible Porphyria to act up.

Hugs
Gerri

[Andros]

Hi Andros,

I am making a list of tests suggested here, and presenting them to my Dr., whom I see at the end of the month. Plus I am taking a picture of my grandmother who had a goiter. I have swelling of the thyroid (goiter). For many years I've had sore throat, and constant pain where thyroid is. I have asked to be referred to an Endocrinologist, but the referral has not been made.

I am very discouraged, and my Rheumy is aware of my many multiple comorbidities. My many allergies, and bronchial asthma, possible porphyria, makes it impossible to treat my health issues.

One good thing, I will be getting my service puppy (standard poodle) home September 1st. It's becoming to hard to deal with depression, and anxiety on my own. So Sept. 1st can't come fast enough.

Hugs
Gerri

Oooooooooooooooooh; I love Standard Poodles and a "service puppy" on top of it? OMG!! A male or female! Name? Color? Oh, how very very wonderful! Have you been in the training also? This will bring you much happiness!

On the serious side. Look all that stuff up so you are well informed. The link I provided is great for that. Also, it would be very very smart to request a radioactive uptake scan of the thyroid.

Keep the faith. I am sure you read my siggie. I also have things I am in denial about. LOL!! I just keep on pushing and I have a very good quality of life. I am very very active. Very.

We are here to help you and be supportive of you. Some wonderful folks here. And some pretty sharp cookies too!

[Gerri]

It is possible to have both; of course you know that.
http://rheumatology.oxfordjournals.org/cgi/content/abstract/28/3/254

Glad you are getting TPO (antimicrosomal antibodies) and TSI (thyroid stimulating immunoglobulin.) Very excellent.

Hi Andros,

Oh - it's very possible to have both, like my rheumy stated "Gerri has multiple comorbidities" - all hard to treat because of my bronchial Asthma, severe allergies and severe sensitivities. Porphyria and Lupus are very much alike - I can have Porphyria and Lupus as well. It seems when you have one autoimmune disease - others like to follow - refusing them are not an option. lol

Thanks for the site referral - will definitely check it out.

Hugs
Gerri

[Gerri]

Oooooooooooooooooh; I love Standard Poodles and a "service puppy" on top of it? OMG!! A male or female! Name? Color? Oh, how very very wonderful! Have you been in the training also? This will bring you much happiness!

On the serious side. Look all that stuff up so you are well informed. The link I provided is great for that. Also, it would be very very smart to request a radioactive uptake scan of the thyroid.

Keep the faith. I am sure you read my siggie. I also have things I am in denial about. LOL!! I just keep on pushing and I have a very good quality of life. I am very very active. Very.

We are here to help you and be supportive of you. Some wonderful folks here. And some pretty sharp cookies too!

Hi Andros,
Re: My service puppy - I have a license trainer who will be teaching me how to train my puppy, to become a fully licensed service dog - who will service my mobility issues, medical issues etc. Never trained any other dog before, as service dog. Had a miniature dachshund (Kayla) who saved my life. I forgot to wear my cpap mask one day, and stopped breathing. She jumped on my chest and barked in my face. She startled me and I took deep breath. I couldn't bring her into apartment - no dog rule - but apartment can't say no to service dog.

Makaylah, was born July 7th. She is brown in colour, with little white on her chest. Brothers and sisters can be seen at "Fads Fancy" web site.

Will be putting my dr. to work with all the helpful suggestions I am getting.

I am looking at yours and other siggie, and find how common my symptoms and diagnoses are to others. Wish I found this forum sooner.

Hugs
Gerri

[Debbie from Milwaukee]

Gerri:
Wow--you are basically completing a college or post-graduate degree in "multiple comorbidities" just to go to a doctor appt.!

I had never even heard of porphyria until I Googled it just now. I'm sure you are aware of the website, but here is one that others could look at as well:

http://www.porphyriafoundation.com/testing-for-porphyria

I hope your Canadian doctor has one of the labs that can accurately diagnose or rule out porphyria. Good for you as you reach out for support--I know it is not easy when you are physically and emotionally down. Hope you make some good contacts here as you proceed on your diagnostic mission!

[Gerri]

Gerri:
Wow--you are basically completing a college or post-graduate degree in "multiple comorbidities" just to go to a doctor appt.!

I had never even heard of porphyria until I Googled it just now. I'm sure you are aware of the website, but here is one that others could look at as well:

http://www.porphyriafoundation.com/testing-for-porphyria

I hope your Canadian doctor has one of the labs that can accurately diagnose or rule out porphyria. Good for you as you reach out for support--I know it is not easy when you are physically and emotionally down. Hope you make some good contacts here as you proceed on your diagnostic mission!

The Canadian doctors are way behind in their knowledge about Porphyria. I may have to go to Alberta to get a diagnoses. The Canadian Foundation for Porphyria, in Manitoba has been closed (for year), and is opening now in Alberta, this year. I do have a Dermatologist on board who has some knowledge of skin problems resulting as result of Porphyria. It will be a year from initial visit, that I will finally have this test done.

The Porphyria Foundation has lots of good information. I am hoping that I will be able to get a diagnoses here in Canada, but going to Texas is not out of the question, if there is no one here who can diagnose me.

I appreciate all the info so far I have received.

Hugs
Gerri

[Andros]

Hi Andros,
Re: My service puppy - I have a license trainer who will be teaching me how to train my puppy, to become a fully licensed service dog - who will service my mobility issues, medical issues etc. Never trained any other dog before, as service dog. Had a miniature dachshund (Kayla) who saved my life. I forgot to wear my cpap mask one day, and stopped breathing. She jumped on my chest and barked in my face. She startled me and I took deep breath. I couldn't bring her into apartment - no dog rule - but apartment can't say no to service dog.

Makaylah, was born July 7th. She is brown in colour, with little white on her chest. Brothers and sisters can be seen at "Fads Fancy" web site.

Will be putting my dr. to work with all the helpful suggestions I am getting.

I am looking at yours and other siggie, and find how common my symptoms and diagnoses are to others. Wish I found this forum sooner.

Hugs
Gerri

We are glad you are here now and can't wait maybe to see a photo or 2 of Makaylah!!! This is awesome. You will have to share your daily activities w/ Makaylah with us. I love dogs; I love animals! That include humans too!! LOL!!

[Andros]

Hi Andros,
Re: My service puppy - I have a license trainer who will be teaching me how to train my puppy, to become a fully licensed service dog - who will service my mobility issues, medical issues etc. Never trained any other dog before, as service dog. Had a miniature dachshund (Kayla) who saved my life. I forgot to wear my cpap mask one day, and stopped breathing. She jumped on my chest and barked in my face. She startled me and I took deep breath. I couldn't bring her into apartment - no dog rule - but apartment can't say no to service dog.

Makaylah, was born July 7th. She is brown in colour, with little white on her chest. Brothers and sisters can be seen at "Fads Fancy" web site.

Will be putting my dr. to work with all the helpful suggestions I am getting.

I am looking at yours and other siggie, and find how common my symptoms and diagnoses are to others. Wish I found this forum sooner.

Hugs
Gerri

I looked for Makaylah but could not find her. Will look some more. Now i see; a litter born July 7. No photos yet!! Wah!

[Gerri]

I looked for Makaylah but could not find her. Will look some more. Now i see; a litter born July 7. No photos yet!! Wah!

As soon as I get a picture or pictures - I will post here. I just can't have anyone crying here. (lol) Will have to get advise as to how to that.

Hugs
Gerri