Hashimotos, RA, and autoimmune! Oh my!!

[hsingscrapper]

So I've been trying to get my thyroid regulated again. My knees and heels have been hurting lately.

 

I went to my doctor on Wednesday and got my blood drawn on Thursday. She is checking for Hashimoto's, rheumatoid arthritis, lupus, and my vitamin D levels.

 

Am I crazy to be scared? If they come back positive, what lies ahead for me?

[Cindy in FL.]

I have Hashimoto's (regulated by medication and yearly ultrasound of thyroid) and my Vit D level was very low when checked in October (been on high dose of supplement since then and need to gave it rechecked). Both of those are manageable, though it may take time. Lupus and RA I don't have personal knowledge of. But, please try not to worry too much at this point. I know that's easier said than done! Praying for good results from the testing and peace for you as you await the results!

Edited January 25, 2016 by Cindy in FL.

[momacacia]

Cindy, do you take thyroid replacement? What is upkeep liked on that? Blood tests for dosages, etc?

 

I have read multiple sites that suggest going off gluten for hashimotos or any autoimmune issue.

Edited January 25, 2016 by momacacia

[Cindy in FL.]

I take Synthroid. It works for me, but I know that others take Armour or other natural replacements. I also have a nodule on my thyroid, so I have yearly blood work along with an ultrasound. If I feel off, I call my endo, get blood work, and adjust dosage if necessary. It can take a little while to get to the right dosage sometimes!

 

I have been considering going gluten free to see if it helps.

[prairiewindmomma]

I have both Hashimoto's and rheumatoid arthritis.  My best advice is:

1. If you have Hashimoto's, pick a name brand medicine and stick with it.  This is one of the few medicines where generics do not work equally well.

2. Get your endocrinologist to get your TSH levels, etc. to a point where your autoimmune thyroid issues are suppressed. For me, I have a range between 1.0-2.0 where I feel good. Otherwise, I have major symptoms (weight gain, hair loss, etc.)

3. Up to 30% of women with R.A. are sero-negative. If your labs show marked inflammation and you have symptoms that match, get on a DMARD (disease modifying drug) pronto.   (If you are sero-positive, you'll go onto a DMARD anyway.) The latest studies on the prevention of joint erosion and the lifelong course of the disease are SO encouraging if you are treated right away.  I went onto a DMARD right away, and four years in, I am just now starting to have more serious issues. The drug I was on has stopped working, and so I'm switching drugs. I hope to be able to go back into remission.

4. I have been tested for celiac many times, and I've done a gluten free trial. Gluten is not an issue for me.  It is for some people. Give it a whirl.  But there will be a lot of people who say if you just eat a certain way all of your problems will be solved.  I think it's the bargaining phase of grief.  For real.  I'm four years in and I've tried all of the diets, all of the supplements, all of the everything and at the end of it all....I have autoimmune diseases because something triggered certain genes to start firing. In my case, all of my autoimmune diseases came on postpartum. My body did not reset properly.  I'm sharing this because there's a certain amount of shaming that occurs with autoimmune crap, and I wasn't prepared for it and didn't recognize it for what it was for a while. 

5. I wish you the best!

[Ellie]

:grouphug:

 

Several things:

 

I hope your doctor did a complete thyroid panel. If she only did TSH, then she (and you) will still not know how your thyroid is actually functioning. TSH is not a thyroid thing; it's a pituitary thing. TSH kicks in when your thyroid isn't working. At a minimum, you need Free T3 and Free T4. And those are the numbers which should be treated, not your TSH (thyroid synthesizing hormone).

 

These are the labs that you need, at least the thyroid panel:
 

 

 

[Pawz4me]

If you're hypothyroid then you probably do have Hashi's.  I think somewhere in the range of 90 percent of people who have hypothyroidism have Hashi's.  Synthetic thyroid replacement has worked great for me so far.

Edited January 25, 2016 by Pawz4me

[Ellie]

This is a chart of the optimal levels for your thyroid:

 

[Ellie]

It is strongly recommended that people with autoimmune disease follow the Autoimmune Protocol (AIP):

 

[Ellie]

[Ellie]

Finally, check out Stop the Thyroid Madness. It is a wonderful site, full of information. It also goes into great detail as to why most people will feel better on natural desiccated thyroid (NDT) such as Armour or NatureThroid instead of synthetics such as levothyroxine or Synthroid. And most people feel better at 3-5 grains of NDT instead of the paltry 30 or 60mcg of the synthetic that most doctors prescribe.

[Pawz4me]

It is strongly recommended that people with autoimmune disease follow the Autoimmune Protocol (AIP):

 

 

 

A number of foods on that list make my thyroid swell if I eat more than a few bites at a time (broccoli, cabbage, collard greens being the main ones).

[Ellie]

A number of foods on that list make my thyroid swell if I eat more than a few bites at a time (broccoli, cabbage, collard greens being the main ones).

 

That it says to "include" them does not mean you *must* eat them. The most important list is the Avoid list.

[Cindy in FL.]

A number of foods on that list make my thyroid swell if I eat more than a few bites at a time (broccoli, cabbage, collard greens being the main ones).

I know that broccoli and collard greens are goitrogenic, hence their effect on your thyroid. Cabbage could be as well. I would just avoid them if I were you.

[Ellie]

I have read multiple sites that suggest going off gluten for hashimotos or any autoimmune issue.

 

It isn't gluten that's the problem; it's grains, all grains, including corn and rice. Also dairy, seeds, nuts, eggs, and legumes.

[hsingscrapper]

I've been hypo almost my entire life. I'm also on Medicaid and they aren't really good about letting you have the name brand meds.

 

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[sophiasapientia]

I hope that you get some good answers and help soon.  It is hard to be in limbo and autoimmune stuff can be difficult to pin down.  I have Undifferentiated Connective Tissue Disease (UCTD.)  In my case, I have some positive antibodies and symptoms of Scleroderma, Lupus and RA but am a criteria point or two any from a firm diagnosis for any of these.  We are in "wait and see" mode.  I could go into remission, stay UCTD or evolve into a more specific diagnosis or, based on my positive antibodies, develop Mixed Connective Tissue Disease.  

 

If your bloodwork comes back with anything concerning, they will refer you to the appropriate specialist and then take it from there with any necessary testing, recommendations and meds.  

 

Some folks have great success with the AIP diet.  I tried it for a few months last year and I actually got sicker during that time and developed some health complications from the dietary changes.  For me, for a variety of reasons, it was not the right solution.  YMMV â€¦ It has taken over a year of trial and error but I *have* found relief by finding the right combination of assorted meds, working on stress reduction and being extremely careful about sun exposure because it can cause me to flare.  I take a compounded antimalarial medication, in particular, that has helped tremendously with fatigue and, therefore, my quality of life.  It has been an adjustment to find a "new normal" but, I have, over time and I'm doing pretty well right now.  

 

​Sending good thoughts â€¦ 

 

 

 

 

Edited January 27, 2016 by sophiasapientia

[aug17girl]

I have hypothyroidism and my chin swells noticeably overnight when I eat the wrong thing.  Is this a hypothyroidism thing?  Anyone know where I can read more about this.  My doctor does not take this seriously.

[Ellie]

I have hypothyroidism and my chin swells noticeably overnight when I eat the wrong thing.  Is this a hypothyroidism thing?  Anyone know where I can read more about this.  My doctor does not take this seriously.

 

Look for a new doctor.

 

One of the most helpful sites is Stop the Thyroid Madness. If you do Facebook, you can find help on Hashimoto's 411 and Living With Hashimoto's.

[aug17girl]

Thanks.

[Pawz4me]

I have hypothyroidism and my chin swells noticeably overnight when I eat the wrong thing.  Is this a hypothyroidism thing?  Anyone know where I can read more about this.  My doctor does not take this seriously.

 

Do a search on "goiterogenic foods."

 

I don't think the reaction is dangerous or even a real problem for most people, assuming you aren't consuming massive amounts of those foods.  For me it's more annoying (and uncomfortable!) than anything, because I really like a lot of the leafy green goiterogenic foods and don't like having to limit them.  Although gluten is listed by some sources as goiterogeinc, it doesn't seem to bother me at all (thank goodness!).

Edited January 27, 2016 by Pawz4me

[Nicholas_mom]

This is what saved from autoimmune diseases like RA and arthritis:

 

"CLEAN: A Revolutionary Program to restore the Body's Natural Ability to Heal Itself" 

 

Clean Book

Clean, the book from Alejandro Junger, M.D., is designed to be easily incorporated into our busy schedule while providing all the practical tools necessary to support and rejuvenate our bodies. The effect is transformative: nagging health problems will suddenly disappear, extra weight will drop away, and for the first time in our lives, we will experience what it truly means to feel healthy.*

 

I followed the BOOK and recommendations of supplements.  They have a great support at their Website: https://www.cleanprogram.com/clean-book.html

 

Everyone who follows this detox will have different experiences.  So for me, my triggers are not only gluten BUT ALL GRAINS also EGGS and LEGUMES!  Who would have thought the last 2.  Dairy not so much.  He is part of a new medical paradigm called Functional Medicine - where they look at the body as a whole with functions working together, not separate.

 

I feel finally healed from the inside instead of using patchwork to just get rid of symptoms. 

Edited January 27, 2016 by Nicholas_mom

[prairiewindmomma]

So, Nicholas_mom, you stopped having R.A. antibodies and you have since had normal ESR and cr-p levels? I am truly curious.

 

I, like sophiasapiente, have a hard time with a paleo-like diet because of the increased acidity that comes from eating meats. I also responded well for a time to anti-malarial drugs.

I really believe in functional medicine.  I think a segment of the population does respond well to dietary changes. I think, though, that the nature of autoimmune diseases is complicated enough that we have different etiologies. As I've been talking with people, it seems that there may be various subtypes even within a disease like R.A.

 

 

 

[aug17girl]

Do a search on "goiterogenic foods."

 

I don't think the reaction is dangerous or even a real problem for most people, assuming you aren't consuming massive amounts of those foods.  For me it's more annoying (and uncomfortable!) than anything, because I really like a lot of the leafy green goiterogenic foods and don't like having to limit them.  Although gluten is listed by some sources as goiterogeinc, it doesn't seem to bother me at all (thank goodness!).

 

Thanks.

[Nicholas_mom]

 

So, Nicholas_mom, you stopped having R.A. antibodies and you have since had normal ESR and cr-p levels? I am truly curious.

 

I didn't get bloodwork.  My mother has RA and arthritis and I was going down the same road as her.  My knees were stiff and hurt.  I would sit for 45 mins and couldn't get my muscles to move me up.  Based on my mothers exprience, she was telling me she has the samething.

 

I had back pain that miraclulously went away.  For back pain that is not have any structural problems like slipped dics, the CLEAN program can help.

 

I see a Chinese doctor that does acupuncture and herbs.  I cannot take pharmaceuticals because they do not work for me and cause havoc to my body.  It has to be natural cures for me.  I can't even take antibiotics.

 

In the Book, Dr. Junger explains how someone can take a pill for a symptom like RA for one person and not work for another person.  Everyone has their genes but everyone has different circumstances that creates the gene to activate the cells to attack your body.  This is based on your life experiences, how you eat, how you handle stress, etc. 

 

The same is true for what makes the symptoms go away, whether its pharmaceuticals or going naturally or using alternative healing methods like acupuncture and herbs.

 

 

[Nicholas_mom]

I just found this site that might help the OP:

 

link: http://autoimmune-paleo.com/our-story/

 

Another finding the diet that will help with autoimmune.  One of the ladies serves on the board of directors for Hashimoto’s Awareness, a support and advocacy organization for those with autoimmune thyroid disease.

[sophiasapientia]

I, like sophiasapiente, have a hard time with a paleo-like diet because of the increased acidity that comes from eating meats. I also responded well for a time to anti-malarial drugs.

I really believe in functional medicine.  I think a segment of the population does respond well to dietary changes. I think, though, that the nature of autoimmune diseases is complicated enough that we have different etiologies. As I've been talking with people, it seems that there may be various subtypes even within a disease like R.A.

 This was it for me too.  The acidity of the paleo diet greatly exasperated my reflux and esophageal dysmotility/problems with swallowing (both Scleroderma related issues.) Both of these problems improved dramatically once I went off of AIP.  My doctors were also concerned because my oxalate levels went through the roof while on the AIP, putting me at high risk for developing kidney stones, because of all of the greens, sweet potatoes, plantains, etc that I was consuming to make up for the countless foods that I could not eat.  I am also a fan of functional medicine and I do agree with Prairiewindmomma that there are likely different etiologies within the autoimmune spectrum.  AIP &/or Paleo can definitely be worth a try to see if it helps but it isn't a "one size fits all" answer, unfortunately.   

[gardenmom5]

vitamin d3 levels are easy to treat with supplementation, many people are deficient (should be above 50) and affects many body systems.

 

the others are various forms of autoimmune disorders which can usually be treated by diet and medication.  end result is you will feel better.

 

drs also do lots of tests to rule things out.  I would not be scared.