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ravenwoodglass

Sooo Tired, Hair Loss, No Stamina

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Yea thyroid seems to be the general idea from folks. Can you have false negatives on the thyroid testing? I had some thyroid testing a couple years ago that came back fine but things do change. Could my long term, 9years, of iodine avoidance have caused thyroid damage? If so would my adding more iodized salt back in help? I did start using iodized salt a couple weeks ago but likely could and should have done so a couple years after diagnosis.

Insurance is out of the question right now. I have a little too much money coming in for Medicaid but after my divorce I discovered paying out of pocket for it would take 3/4 of the money I have a month to live off of. I know I am not alone in that issue. There are lots of us that fall through the cracks insurance wise. Fortunately there is a hospital about 30 miles away that has a generous sliding fee scale if the one in my city doesn't. I will be contacting them this week.

Thanks again everyone for all the helpful advice.

You can absolutely have false negatives on your thyroid panel. I never did but I know many people with classic low thyroid symptoms and their blood work doesn't look bad enough for most doctors to treat. My TSH was only 7 when I was diagnosed and that is not that far off the scale but I could literally not get out of bed in the morning. I was the walking dead. I have found that you will have symptoms long before it shows in your blood work....does that sound familiar? ;) The ways of autoimmune disease.....

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Ravenswoodglass, I can't offer any suggestions being fairly new to all this but I just wanted to say, Damn! I wish you weren't experiencing any of this and I hope that it's a simple and speedy resolution for you. You're totally in my heart for everything that you have gone through and I wish the best for you.

Big hugs,

Kamma

...and keep us posted on how you make out.

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I just wanted to thank the original poster of this thread.

After reading this I will be calling my Dr in the morning. I thought hair loss, fatigue and weird vision were something that will eventually go away. (I have been gluten-free since last Aug)

But none of them have.

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I feel the same way-very tired all the time and hair loss everytime I run my fingers through my hair! Im trying out the B vitamins and biotin. I do feel a little more energetic, but now my body hurts. Maybe Im overdoing it.

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I feel the same way-very tired all the time and hair loss everytime I run my fingers through my hair! Im trying out the B vitamins and biotin. I do feel a little more energetic, but now my body hurts. Maybe Im overdoing it.

I think the classic "too much b" symptom is diarrhea. But who knows...its different with everyone!

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Raven,

I've been thinking about you all day....and have been trying to remember everything I've researched in the past that might help you. Then, it came to me: Whipple's Disease. I looked it up, and--lo and behold--it causes skin discoloration and eye problems in addition to a lot of other things you've described. Here's a link:

http://en.wikipedia.org/wiki/Whipple%27s_disease

If this is what you have, it's curable with antibiotics. Please take a look at a couple of sites before you go to the doctor--even though I don't want you to have this, at least you'd know how to treat it...and there would be light at the end of the tunnel. Good luck, my friend!

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Raven,

I've been thinking about you all day....and have been trying to remember everything I've researched in the past that might help you. Then, it came to me: Whipple's Disease. I looked it up, and--lo and behold--it causes skin discoloration and eye problems in addition to a lot of other things you've described. Here's a link:

http://en.wikipedia.org/wiki/Whipple%27s_disease

If this is what you have, it's curable with antibiotics. Please take a look at a couple of sites before you go to the doctor--even though I don't want you to have this, at least you'd know how to treat it...and there would be light at the end of the tunnel. Good luck, my friend!

Thanks for the link. The skin discoloration I have is red and bruise like and thankfully I don't have many other symptoms of Whipple. GI stuff is fine and Whipple has a lot of GI stuff associated with it.

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I think I have found what my weird rash is. It looks just like pictures of ITP. That might explain my nasty GI bleeds when I get glutened too. Doesn't explain the hair loss and fatigue but I am going to work on improving my diet. I made a big pot of a tomato, onion, lima bean, Chi Chi stew with just a bit of ground beef and froze some for my work days. I'll pick up vitamins tommorrow and do a trip to the clinic to make an appointment to get everything checked out including thyroid.

Thanks again everyone for your input.

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I think I have found what my weird rash is. It looks just like pictures of ITP. That might explain my nasty GI bleeds when I get glutened too. Doesn't explain the hair loss and fatigue but I am going to work on improving my diet. I made a big pot of a tomato, onion, lima bean, Chi Chi stew with just a bit of ground beef and froze some for my work days. I'll pick up vitamins tommorrow and do a trip to the clinic to make an appointment to get everything checked out including thyroid.

Thanks again everyone for your input.

there is a link between H. pylori and ITP . If you have not been tested for H. pylori , that may be something to consider.

If you are thinking ITP make sure your doc does a complete blood count. This test checks the number of red blood cells, white blood cells, and platelets in your blood. In ITP, the red and white blood cell counts are normal, but the platelet count is low.

I am glad to hear your are going to have a thyroid panel done.

Take care and feel well soon ((HUGS))

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hair and nails need sulphur containing aminio acids.....and i think you are in "starvation" mode, which is why you aren't losing wt. on so few calories. good luck, we can't be losin' you as a resource, now can we??

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there is a link between H. pylori and ITP . If you have not been tested for H. pylori , that may be something to consider.

If you are thinking ITP make sure your doc does a complete blood count. This test checks the number of red blood cells, white blood cells, and platelets in your blood. In ITP, the red and white blood cell counts are normal, but the platelet count is low.

I am glad to hear your are going to have a thyroid panel done.

Take care and feel well soon ((HUGS))

My ex-GI found H. Pylori on the endo he did but he said almost everyone has it and it didn't need to be treated. Of course he is also the same GI who demanded the second challenge that almost killed me. I will mention that when I see the doctor at the clinic. I didn't know the two could be connected.

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My ex-GI found H. Pylori on the endo he did but he said almost everyone has it and it didn't need to be treated. Of course he is also the same GI who demanded the second challenge that almost killed me. I will mention that when I see the doctor at the clinic. I didn't know the two could be connected.

He was right "sort of". :rolleyes: A common cause of peptic ulcers, H. pylori infection is present in the stomachs of about half the people in the world.

(according to the Mayo Clinic)

Most people don't realize they have H. pylori infection, because they never get sick from it, but if you have symptoms of a peptic ulcer, (and those pains are awful) he should test for H. pylori infection, which is treated with antibiotics.

I send you my best wishes, thoughts and cyber ((hugs)). Please let us know how you are doing. You're a part of the family! :wub:

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He was right "sort of". :rolleyes: A common cause of peptic ulcers, H. pylori infection is present in the stomachs of about half the people in the world.

Most people don't realize they have H. pylori infection, because they never get sick from it, but if you have symptoms of a peptic ulcer, (and those pains are awful) he should test for H. pylori infection, which is treated with antibiotics.

I send you my best wishes, thoughts and cyber ((hugs)). Please let us know how you are doing. You're a part of the family! :wub:

Thanks, I have no ulcer symptoms at all. In fact no GI isses whatsoever unless I am glutened or soyed.

I am off to get some vitamins and see what I have to do to get the sliding fee scale at the clinic.

Thanks for the hugs. I'll let everyone know how things go.

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Good luck at the doctor! I'm late in seeing this post but I think I have had every single test for fatigue there is! Definitely request the complete thyroid panel, the ANA, SED rate, CRP, and rheumatoid factor in addition to checking vitamin levels and CBC. They can do a skin biopsy for lupus as well!

I know how awful unrelenting fatigue can be so I really hope they find an answer for your issues!!!

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If it is h.Pylori then mastic gum is a good way to go. That and colloidal silver plus betaine HCL a couple times week when eating.

Just because a lot of people have an infection doesn't mean it is a good thing for them!

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If it is h.Pylori then mastic gum is a good way to go. That and colloidal silver plus betaine HCL a couple times week when eating.

Just because a lot of people have an infection doesn't mean it is a good thing for them!

No, of course not; I was only reporting what the Mayo Clinic says about the h. pylori bacteria being present inside the stomach in many people. That's all.

If someone has an infection that causes issues, then it must be treated. But she would need to be tested to know for sure.

IMHO

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@IH No problem. I was thinking of the ex GI who said H.Pylori didn't need to be treated. Seems to me like one of those things where you could wait and hope it doesn't get worse or go ahead and treat it. Treating with anti-biotics from a doctor is not the best way to go in those cases IMHO. I prefer more natural treatments like the mastic gum. That may not work for everyone, but it is cheaper and probably less toxic and disruptive to the system. We all have lots of bacteria in our systems all the time, but some of them aren't very friendly. Maybe some people have a natural resistance to it though that other people don't have. That might be why so many people have H.Pylori but don't report symptoms. Anyhow, getting off topic a bit.

Now if we were watching a House episode on tv, this would be about the point they send the scrubs out to search the house for toxic chemicals etc. And maybe that is a possibility. Raven, you are a glass artist right? Any chance you are exposed to toxic chemicals in making glass art? Lead or something else perhaps? I know they used a lot of lead came and do a bit of soldering to make stained glass art at one time. Just a thought. Could you send us all pics of the storage beneath your kitchen and bathroom sinks to verify? Just kidding on the pics... :)

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Now if we were watching a House episode on tv, this would be about the point they send the scrubs out to search the house for toxic chemicals etc. And maybe that is a possibility. Raven, you are a glass artist right? Any chance you are exposed to toxic chemicals in making glass art? Lead or something else perhaps? I know they used a lot of lead came and do a bit of soldering to make stained glass art at one time. Just a thought. Could you send us all pics of the storage beneath your kitchen and bathroom sinks to verify? Just kidding on the pics... :)

The most toxic things in the house right now are the kitties litter boxes. :lol: Seriously though I don't even use toxic cleaners just soap on most stuff and a dust cloth when the mood strikes.

I am a glass artist but I do mosaics and don't use lead came. I was useing it years ago when my neuro symptoms were progressing at a fast pace and stopped and went to mosaics. My studio has no heat so right now any glass work is on hold while I wait for spring and get my internet business off the ground. That was a good thought though.

Can you tell me more about the mastic gum? What is it and where would you get it?

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Can you tell me more about the mastic gum? What is it and where would you get it?

Yes I was wondering the same thing . You also mentioned colloidal silver plus betaine HCL .

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Colloidal silver is not really considered safe. Even the ND I worked with years ago (before My DX when I was very sick) wouldn't "prescribe" it for me.

http://www.mayoclinic.com/health/colloidal-silver/AN01682

I am sure you will get a different answer from fellow members. :) But I suggest you think twice before using it without guidance from an ND.

The mastic gum is considered safe and has many uses, including oral health. I have never been able to find a single scholarly article on it, but Dr. Weil's thoughts are here:

http://www.drweil.com/drw/u/QAA400531/Medicate-With-Mastic-Gum.html

Betaine HCl is the most common hydrochloric acid-containing supplement. Only people who have reduced levels of stomach acid (

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Colloidal silver is not really considered safe. Even the ND I worked with years ago (before My DX when I was very sick) wouldn't "prescribe" it for me.

http://www.mayoclinic.com/health/colloidal-silver/AN01682

I am sure you will get a different answer from fellow members. :) But I suggest you think twice before using it without guidance from an ND.

The mastic gum is considered safe and has many uses, including oral health. I have never been able to find a single scholarly article on it, but Dr. Weil's thoughts are here:

http://www.drweil.com/drw/u/QAA400531/Medicate-With-Mastic-Gum.html

Betaine HCl is the most common hydrochloric acid-containing supplement. Only people who have reduced levels of stomach acid (hypochlorhydria) should take betaine HCl; this condition can be diagnosed by a doctor.

If you take it and you have excess stomach acid, not reduced acid, you will experience intense burning sensations.

Herbals and supplements have their uses, but using them without guidance ---and for a condition you may not even have! ---can have consequences. I speak from experience and offer my thoughts only to make you aware of what I have learned from research and years of trying things others suggested (NDs and Intergrative MDs) that did not work and made things worse.

IMHO

Thanks for the info IH. I personally wouldn't touch the collidal silver and since I have no heartburn or other GI symptoms I don't think the I need any medicating for that sort of thing.

I had a very bad experience with a ND who was supposed to be the best in my state and don't trust them any more than I trust regular doctors. You would think an ND would know better than to say 'a little gluten in the supplements and herbals I give you won't hurt' but he didn't. The person who made a lot of the herbals he prescribed grew them in her yard and stored them in clear glass containers, even I know better than to do that.

I do appretiate everyones input. Thanks.

edited to add:

I am not against NDs. There are good and bad with them the same as conventional doctors. My one experience just happened to be a bad one.

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Thanks for the info IH. I personally wouldn't touch the collidal silver and since I have no heartburn or other GI symptoms I don't think the I need any medicating for that sort of thing.

I had a very bad experience with a ND who was supposed to be the best in my state and don't trust them any more than I trust regular doctors. You would think an ND would know better than to say 'a little gluten in the supplements and herbals I give you won't hurt' but he didn't. The person who made a lot of the herbals he prescribed grew them in her yard and stored them in clear glass containers, even I know better than to do that.

I do appretiate everyones input. Thanks.

I tried an ND years ago and her "remedies" for 18 months. :rolleyes: I will not say what I think of all that because I know many people on here have had good luck with it and I am not going to get into an argument about it. :)

I only said "guidance of an ND" in the post above---because that is the only place you'll get colloidal silver. No doctor will give it to you.

But frankly, I think it's best for you to avoid experimenting. IMHO

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I tried an ND years ago and her "remedies" for 18 months. :rolleyes: I will not say what I think of all that because I know many people on here have had good luck with it and I am not going to get into an argument about it. :)

I only said "guidance of an ND" in the post above---because that is the only place you'll get colloidal silver. No doctor will give it to you.

But frankly, I think it's best for you to avoid experimenting. IMHO

Yea I am not an experimenter. The most I would take until I see a doctor is an already added B-complex.

The only thing I know about collodial silver is about the guy that turned blue from using it too much. :blink:

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