anyone out there with auto-immune/chronic pain issues before dx?

Kate - thinking about you today going to the doctor. Hope you get your questions answered and hope for nothing else bad. I too have high cholestrol. When I lost a lot of weight going through my divorce my cholestrol was great but now not so great. Sorry spell check isn't working. I'm not on any meds for it though. 

Bevin, it was me who had Shingles. When my doctor was talking to me he just said when your immune system is not acting properly  then you are more open to other diseases and cancer - isn't that lovely! I do agree I think stress probably hits us in more and in harder ways than typical people.

Also, Barb, re-read about how the sheet can hurt you - me too! I have that as well and sometimes just can't wear long sleeves as for me it is usually the lower part of my left arm.... so weird. No wonder my Mom thought I was a bit nuts growing up cause nerve pain is just so strange if you don't have it don't think you can understand how disturbing the pain is cause regular methods just don't touch it.  

Hi Ladies - checking in with all of you.  Wow, Kate, this is interesting.  Wouldn't it be nice if this piece of the puzzle comes together and makes you feel a whole lot better?!   

Hope you are each keeping the symptoms at bay.  

XO,

Mary 

Hi Kate - well - I was found to be hypothyroid when I was 27 and I am now 46. I had fertility issues and it was found during screening. I have Hashimotos thyroid disease. I'd offer up to find an endocronologist that will work with you. Just being in normal range of TSH doesn't make everyone feel better. Mine keeps me a bit on the more hyperthyroid side with synthroid and I feel much better. If you have any friends with it, see who they go to. I dont see my primary for it as I feel a specialist should direct how my hormones work.

I also take spironolactone and dexamethasone as I have high levels of DHEAs and testosterone. These two meds lower these two androgenic hormones and have cleared up what was awful adult acne and hair loss.  never had it as a teen, but got it as a 30 year old woman and to top it off was losing my hair... arghhh. I was pimple free within 4 months of these meds and my hair stopped falling out.

I will say, once I was treated for thyroid, I felt so much better. My mind got clearer and I was not so tired all the time. It was like night and day.

As for breast cancer, I was diagnosed August 2010.

Good luck with the thyroid.  It's amazing how many woman have this. Let me know how you're doing and feel free to send a message with any questions.

I believe she aims to keep everyone around at a TSH around 2.0 , I have been at .81 for the past 10 years. I feel best there. If I recall, while the range may go to 2.0- 6.0 as "normal", she finds most women feel better on the lower end.

If you can find a women - I think that's even better. I think they listen more to the issues women have with hypothyroid problems.

p.s. - Your dog is adorable!!

Oh my gosh - cutest dog ever.  yes you'll need to post the sisters together.!!

 Let me know how you do with the doctor search. It does take some time for the synthroid to build up in your system and to start to feel well again. And yes, 5.1 is on the high end. Most doctors will want to treat that for sure. If they don't , find another one!

I'd definately ask about the combined T3 (cytomel) and synthroid treatment combo. The theory is some women with hypothyroid don't conver the T4 ( synthroid) into the T3 so the cytomel helps. I really felt less groggy and mentally foggy when they added the cytomel.

One of the theories of cancer is that it's chronic inflammation that causes it. Have any of you researched gluten? Just curious because the rheumatologist thought I had fibro, and when I went off dairy, gluten, soy and corn (the top 4 food intolerances, and the ones that my kids had) my never-ending back spasms went away, and my thumb pain and my knee pain. Gluten is a problem with many auto immune diseases (celiac, RA, IBS, hashimoto's/grave's thyroid, and probably others) and it's inflammatory.

 Not sure where you all live, but you might want to get checked for Lyme Disease as well (from a good lab like Igenex) because it can have many of the same symptoms.

 And magnesium glycinate can help with muscle spasms (many people are low and don't know it; I had a blood test, but you're usually really low if it shows up on a blood test).

 Just some things to think about.

I ate only salad for 5 months. No carbs, ergo, no yeast, gluten, etc. Didn't make a penny of a difference in how I felt!

I envision a future where you can just step into a "health tube" and it immediately tells you what is wrong with you and what will fix it.  Now wouldn't that be nice?  Anyone tired of being their own health detective?  Try this for months, ok now try this, etc, etc, etc.  I will be extremely grateful if the thyroid meds are the answer for what ails me but, at the same time, I will be extremely ticked off for feeling unnecessarily crappy for the past decade!  I know we have to be our own advocates but sometimes it feels less like doctors are trying to figure out what is wrong and more like the goal is to see how many different prescriptions they can put you on.

Barbe - have you had a full thyroid panel recently?  (tsh, Free T3, Free T4, TPO)  Or have you ordered a salivary corisol test? (from canaryclub.org).  These can help you determine if you have thyroid or adrenal issues.  I am just now learning about all this.  I got my thyroid taken care of about 4 years ago with a brilliant, out-of-the-box doctor after 6 consecutive docs told me my issue needed antidepressants.  The thyroid meds (both T4 and T3 products) were quite helpful.  Since my cancer surgeries, I've been extra tired and achey, and am now fairly sure there is an adrenal component.  There is a book called "Adrenal Fatigue" by James Wilson, which I'm in the middle of reading.  Very interesting and patient-friendly.  I wish you the best.  There is a wealth of info out there which our docs simply are unaware of.

Barbe, try seaweed so you have both iodine and selenium. It might help you get rid of toxins that may be causing your pain. Just check that you don't have thyroid disease already as it may be counter indicated. I would also tell your doc what you're doing. Because if toxins are causing your pain, they may have to watch for symptoms that the detox is straining vital organs.



we also have a ton of autoimmune diseases in the family. I have asthma, systemic lupus (in remission 20 years), Hashimoto's thyroiditis, hay fever, food allergies, and now bone mets only BC (NED 3 years). I don' take supplements myself because I'm popping too many pills already! But I don't have pain, other than femara pain, which has gotten a lot better over time. I exercise everyday, and if I don't do something today (running a fever with flu) it will be the first time since starting chemo. I did not have the swelling during rads so I guess that means the lupus is still in remission.

Sorry Gluten free didnt work for you. But, I dont think Dr Harmons book is just about Gluten. Actually few people have a real Gluten allregy.  Its more about eliminating processed foods, eating whole natural foods they way our bodies were intended and really understanding the role all of the different things in our processed foods do and how they interact in our bodies.

I will say, once I started eating no processed foods , I lost alot of weight and it was easy. I also felt less tired , had more energy.

Talk soon.

Barbe - I've been planning on adding iodine since I found out I had BC last summer. But then they found out I have an adrenal adenoma (benign tumor on my adrenal gland). So, my onc said after we finish chemo and rads you need to go to an endocrinologist and have this adenoma taken care of. I've been effin' around with endocrinologists for years and I can't get no satisfaction! So, after we take care of the adenoma thing, I'm sure he'll dismiss the rest of my concerns because everything will probably fall into the "normal" range. I already have a plan to take all this blood work they did last week (12 vials!) and go to a naturopath to help determine the correct dose of iodine and try to get ALL of my hormone levels balanced.

One endo I went to 2 years ago DID figure out something was wrong with my adrenal glands (he thought it must be adrenal fatigue - without some kind of scan you don't know you have an adrenal adenoma) and he said although my thyroid APPEARS like it's functioning normally (normal ranges and all), the adrenal glands were screwing it up. The endo I'm seeing now about the adrenal adenoma scoffed at that theory, so I have little faith - once again - in getting any satisfaction from the mainstream docs. 

Just found out there's a shortage of iodine in my area due to what's happening in Japan. There is a nuclear plant about 50 miles away, so people have been stocking up.....sigh. I was hoping that would be the ticket!!

barbe- Can you order the iodine online maybe?  MBJ might have some sites she recommends.