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Old 09-09-2010, 08:50 PM   #1
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Hypothyroid and AI very sick help

Hi Everyone,

I'll try to keep it brief. Here is my history:

Age 8 Dx Mitral Valve Prolapse

Age 12: Dx Hypothyroidism. Eltroxine and Natural Thyroid-at different times
Age 22: Allergic reaction to Sulpha
Age 24: Pneumonia (hospitalization)
Age 27: Adrenal Insufficiency

Age 28: highly elevated Thyroid Antibodies with TSH in range. 2 miscarriages one at 7weeks and one at 13

Age 29 : Dx Chronic Fatigue Syndrome

Age 29-31: High Thyroid Antibodies, TSH in range or slightly above or under.
Positive ANA 1:640 Speckled.

Fam medical history: Juvenile Diabetes, Type 2 Diabetes, Lupus, RA, Debilitating osteoarthritis, Hypertension, 3rd generation Hypothyroidism, asthma, Alzheimer. This just covers my Mom, her brother and their Mom.

Here is my situation: I was taking natural thyroid during the past year. I decided to switch to Eltroxin this July because its next to impossible to find a dr. that will work with me and the natural thyroid.

I had to sneak behind my primary GP's back to get the natural thyroid. I got tired of the hassle and gave in to taking Eltroxin. When I did switch I got a myriad of new symptoms that are leading me to believe and feel like Im really, ill.

I have: Joint pain (Hips, shoulders, knees, wrists and fingers) General body pain, low grade fever, chest pain like some one drove a pole right through my middle chest the pain gets worse when I lie down. Hair falling out, switch between constipation and diarrhea,.

fingers going blue when cold, muscle weakness, dry eyes and throat. sleeping almost 16hours per day and well at night. Had a sleep study and said hypersomnia.

low blood pressure. double vision, numbness on top of head and left face. Massive, disgusting feeling heart palpitations. Edema in feet, calves and ankles.

The list can go on and on so I won't bore you people any longer. I get sick when I go in the sun. I get almost a flu after being in the sun. No rash that I can see. except a small cluster on my shoulder

These symptoms can come and go. They come before a storm and they really hit me hard the week leading up to my period.

Over the past 4 years I have had a low white blood cell count. Now not flagged low but borderline Eg: Out of range is 4.7 and I'm 4.7. High RBC, Hematocrit and hemoglobin.

July 2010 LABS
Rumatoid Factor: NEG
ENA Screen (6 test) Neg
CRP : .7
ESR:: 6

My Family Dr. won't listen to me anymore. He will write down my symptoms but do nothing. He said he won't order more tests because this is all related to Chronic Fatigue Syndrome and I should just get used to it. He also knows about my thyroid antibodies.

I begged him to send me to a Rhumatologist so I now have an apt for..... HOLD YOUR BREATH... May 2 2011!!! (this is Canada so we have to wait until we are on our death beds to get treatment)

I have also an MRI coming soon.

Can Thyroid antibodies lead to other diseases ie: RA, Lupus ect

My question is: is this all related to the switch from natural thyroid to synthetic?

If the ENA is negative now should it be retested considering my symptoms?

Do thyroid antibodies cause ANA tests to be in the 640's?

Is it common for thyroid to mimic symptoms of other autoimmune diseases.

Can you recommend any further tests to be ordered or talk about any other conditions this might be related to?

If this is only thyroid antibodies, why the new set of symptoms, when will they go away? will I ever get better? Ive had thyroid antibodies my whole life. why now are they making me sick?

Dispite all my medical problems I was able to keep up with life until I got the Chronic Fatigue syndrome 2 years ago (which Im not sure is the right diagnosis for me at this point). I keep getting worse and worse and with CFS my internist said at about 2 years your symptoms will level out. Not get better but you shouldn't be getting dramatically worse.

Any help or if you could talk about your on set of symptoms I would forever be indebted.

I know this is long but it's really hard when the medical society won't listen to you. Thanks again Guys, anything would help.

 
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Old 09-11-2010, 12:07 AM   #2
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AuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB UserAuntieLeela HB User
Re: Hypothyroid and AI very sick help

Ever been tested for Celiac disease?

Look up the term 'autoimmunity' if you haven't already, the American Autoimmune Related Diseases Assoc (AARDA) has some great articles on autoimmune disorders, "The Common Thread" by Noel R. Rose, M.D. is a must. He describes how all AI disorders are linked; "A major aim of the American Autoimmune Related Diseases Association is to help us to understand that all of these diseases, diverse as they are, in their anatomical location, in their clinical manifestation, are related because they have the same etiology; they are all caused by autoimmunity. In my opinion, the only way we're going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning."

I ask about Celiac because your fam history lists several Celiac related disorders. AI diseases tend to cluster, in the "Celiac cluster" there's juvenile arthritis, juvenile diabetes, Lupus, Sjogren's syndrome, vitiligo, autoimmune hypothyroid, Graves disease, and asthma. Other symptoms; early osteoporosis and osteoarthritis, liver disease, infertility, migraine and neurological problems. Gluten Ataxia, often seen/misdiagnosed as simple clumsiness, is a common neuro symp.

Some people with celiac have no symptoms at all - till it's too late. Untreated celiac can lead to cancer.

 
Old 09-11-2010, 10:37 AM   #3
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Re: Hypothyroid and AI very sick help

Hi thank you for your information. I already know that I am Gluten intolerant. Can gluten intolerance lead to Celiac?

Thanks again for your help

 
Old 09-11-2010, 10:57 PM   #4
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Re: Hypothyroid and AI very sick help

Yes, GI is often latent Celiac disease.

You can rule out celiac by getting tested for the genes; "Nearly all people with celiac disease have gene pairs that encode for at least one of the human leukocyte antigen (HLA) gene variants, or alleles, designated HLA-DQ2 or HLA-DQ8. However, these alleles are common. They are found in about 40 percent of the general U.S. population, and most people with these alleles do not have celiac disease. Negative findings for HLA-DQ2 and HLA-DQ8 can essentially rule out current or future celiac disease in patients for whom other tests, including biopsy, do not provide a clear diagnostic result."

http://digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/index.htm


Everytime I read "DQ2" and "DQ8" I think of Dairy Queen.

 
Old 09-13-2010, 07:40 AM   #5
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Re: Hypothyroid and AI very sick help

You can buy an over the counter test for celiac in Canada. It is only available in Canada and Europe. It is easy to find. You can test yourself.

 
Old 11-02-2010, 12:01 PM   #6
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Re: Hypothyroid and AI very sick Found a diagnosis

In case anyone is still reading this. I was just hospitalized for Hashimotos Encephalopathy also know as SREAT. Its a very, very rare condition but it is out there. I was in hospital for over 21 days 3 in ICU.

Look into this condition if your symptoms present like mine did. My thyroid antibodies TPO's were 4000.

 
Old 11-02-2010, 01:14 PM   #7
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Re: Hypothyroid and AI very sick help

Wow! I guess the good thing is that they found this! I hope you are doing a little better. It seems that SREAT (Steroid-Responsive Encephalopathy Associated with Autoimmune Thyroiditis) is not a common disease. The studies suggest that most patients are originally wrongly diagnosed. Maybe your case will be written up as well. I hope you continue to improve. It is too bad things have to progress SO far before you are heard!

 
Old 02-26-2011, 07:30 AM   #8
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Re: Hypothyroid and AI very sick help

I'm so sorry to hear all that you have battled. Have they checked your EBV levels? It's usually connected to chronic fatigue AND can cause autoimmune disorders. In me (like 95% of the population) EBV layed dormant until I hit a very stressful point in my life and then it enacted and turned into mono. I was healthy up that point in life and suddenly felt like I was going to die. Turns out not only did I have a high and active EBV level but also hypothyroidism and Lupus (and they are still testing for other things). It really sounds like you have an autoimmune system. I've went through a lot of these same things. The blue fingers sound like Raynaud's syndrome. A lot of endo's go by your lab levels but younger people should be around a .1 or 1.0. If they don't recognize this, your likely not getting enough thyroid meds. It's hard to find a good endo. Also, high cortisol levels in the body can mess with your adrenals and eventually burn them out (dealing with that too here). Hypothyroid will cause hair loss but also, Lupus can cause that and the body pain. Lupus is not a friend of the sun and you can flare if your exposed to sunlight. It affects people differently but can cause skin inflammation and joint pain. I have no butterfly rash across my face, perhaps because I'm in the early stages but I do have terrible pain similar to rhematoid caused by it. It can also give you chest pain. There is a test they can perform for Lupus but if it comes up positive....it's not 100% that it's Lupus. It could be any connective tissue disorder. Usually they just say you have Lupus to start out with and go by symptoms as it progresses to diagnose you with other connective tissue disorders, as they seem to overlap themselves. There is no specific test to figure out which exact one you have. My doc has put me on the following and I feel a LOT better. I still have some joint pain but that's about it and before with that I could hardly get out of bed. Now I can do just about anything. All of these are the total amount I take a day but are broken up and not taken all at once. For ex...I take 1500 mg cal 2x a day. The more you split it up the better you body can absorb and I found that liquid are a LOT better if you can afford them.

Vit D 10000 IU (may want to do 5000 if you are unsure of your levels)
Calcium 3000mg (gotta have this with the D)
Magnesium 1500mg
Omega 3's 3000mg daily
B12 shot self injected once a week
Prescription multigen (iron, Vitamin C, ....)

It's made a huge difference in my life. I've taken supplements my whole life but it's about knowing how much to take. I never took enough. The recommended daily allowance of D a day is 400IU. My doc did that for a month b/c he was low and retested himself but his levels hadn't move. Then he bumped himself up to 2000IU of D a day for a month and this still didn't move his levels up. He had to get up to 10000IU a day to move his level. His patients have shown the same results with monitoring. This guy has practiced across the nation with some of the best docs and in several different fields. So, if your following the recommended daily amount....it's not enough. There are some vitamins (like D) that you can take too much of. That's why I say at 5000 you would be safe. Out of a thousand he's only seen one womans level get a little too high (and nothing dangerous) on 10,000 IU a day.

I hope you feel better soon and get your diagnosis. There are things they can put you on for the Lupus to help with inflammation and issues. Without it, I think I had read it can get worse. I'm going on a raw diet for a few weeks to see if that helps any. I've read a lot of stories about people going raw and it healing them of Lupus. I have nothing to lose and quality of life to gain. This battle is not only physically draining but mentally. I do understand what you are going through and I wish you the very best!! May 2011 is an awful long time to have to wait to see a dr. That's terrible.

Quote:
Originally Posted by nattalsnakes View Post
Hi Everyone,

I'll try to keep it brief. Here is my history:

Age 8 Dx Mitral Valve Prolapse

Age 12: Dx Hypothyroidism. Eltroxine and Natural Thyroid-at different times
Age 22: Allergic reaction to Sulpha
Age 24: Pneumonia (hospitalization)
Age 27: Adrenal Insufficiency

Age 28: highly elevated Thyroid Antibodies with TSH in range. 2 miscarriages one at 7weeks and one at 13

Age 29 : Dx Chronic Fatigue Syndrome

Age 29-31: High Thyroid Antibodies, TSH in range or slightly above or under.
Positive ANA 1:640 Speckled.

Fam medical history: Juvenile Diabetes, Type 2 Diabetes, Lupus, RA, Debilitating osteoarthritis, Hypertension, 3rd generation Hypothyroidism, asthma, Alzheimer. This just covers my Mom, her brother and their Mom.

Here is my situation: I was taking natural thyroid during the past year. I decided to switch to Eltroxin this July because its next to impossible to find a dr. that will work with me and the natural thyroid.

I had to sneak behind my primary GP's back to get the natural thyroid. I got tired of the hassle and gave in to taking Eltroxin. When I did switch I got a myriad of new symptoms that are leading me to believe and feel like Im really, ill.

I have: Joint pain (Hips, shoulders, knees, wrists and fingers) General body pain, low grade fever, chest pain like some one drove a pole right through my middle chest the pain gets worse when I lie down. Hair falling out, switch between constipation and diarrhea,.

fingers going blue when cold, muscle weakness, dry eyes and throat. sleeping almost 16hours per day and well at night. Had a sleep study and said hypersomnia.

low blood pressure. double vision, numbness on top of head and left face. Massive, disgusting feeling heart palpitations. Edema in feet, calves and ankles.

The list can go on and on so I won't bore you people any longer. I get sick when I go in the sun. I get almost a flu after being in the sun. No rash that I can see. except a small cluster on my shoulder

These symptoms can come and go. They come before a storm and they really hit me hard the week leading up to my period.

Over the past 4 years I have had a low white blood cell count. Now not flagged low but borderline Eg: Out of range is 4.7 and I'm 4.7. High RBC, Hematocrit and hemoglobin.

July 2010 LABS
Rumatoid Factor: NEG
ENA Screen (6 test) Neg
CRP : .7
ESR:: 6

My Family Dr. won't listen to me anymore. He will write down my symptoms but do nothing. He said he won't order more tests because this is all related to Chronic Fatigue Syndrome and I should just get used to it. He also knows about my thyroid antibodies.

I begged him to send me to a Rhumatologist so I now have an apt for..... HOLD YOUR BREATH... May 2 2011!!! (this is Canada so we have to wait until we are on our death beds to get treatment)

I have also an MRI coming soon.

Can Thyroid antibodies lead to other diseases ie: RA, Lupus ect

My question is: is this all related to the switch from natural thyroid to synthetic?

If the ENA is negative now should it be retested considering my symptoms?

Do thyroid antibodies cause ANA tests to be in the 640's?

Is it common for thyroid to mimic symptoms of other autoimmune diseases.

Can you recommend any further tests to be ordered or talk about any other conditions this might be related to?

If this is only thyroid antibodies, why the new set of symptoms, when will they go away? will I ever get better? Ive had thyroid antibodies my whole life. why now are they making me sick?

Dispite all my medical problems I was able to keep up with life until I got the Chronic Fatigue syndrome 2 years ago (which Im not sure is the right diagnosis for me at this point). I keep getting worse and worse and with CFS my internist said at about 2 years your symptoms will level out. Not get better but you shouldn't be getting dramatically worse.

Any help or if you could talk about your on set of symptoms I would forever be indebted.

I know this is long but it's really hard when the medical society won't listen to you. Thanks again Guys, anything would help.

 
Old 02-26-2011, 07:32 AM   #9
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angelikness HB User
Re: Hypothyroid and AI very sick Found a diagnosis

How are you feeling now?

 
Old 09-16-2011, 10:04 AM   #10
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Re: Hypothyroid and AI very sick help

Wow! I hope you are feeling better.

My thyroid antibodies (TPO) are over 5000. I will need to look into SREAT.

I hope you are getting better.

Last edited by SeptemberTwin; 09-19-2011 at 09:23 AM.

 
Old 01-19-2012, 07:18 AM   #11
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KelleyZ HB User
Re: Hypothyroid and AI very sick help

Have you had any stroke-like symptoms? how about "dementia" - not really, but similar to dementia, meaning trouble with your memory, trouble focusing, losing cognitive skills?

I am in the same boat as you. Visit http://endocrine.niddk.nih.gov/pubs/Hashimoto/
to start with. Do some research on Hashimoto's Encephalopathy and see what you think.

Please let me know what you think about this possiblity.

Last edited by moderator2; 01-19-2012 at 07:25 AM. Reason: please do not post a commercial website, for any reason.

 
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