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Connecting the dots

Nov 18, 2015 12:21 AM

Hi all.. I've been reading a lot of your post catching up on everyone's days. I've been seeing a lot of you have hypothyroidism. I've had if forany years and never connected it to fibromayalgia which I've just been diagnosis with. I've also blind or partially blind iny left eye I've dealt with this since highschool. I've.been thinking about other health issues I have and wonder how much they could be tied into this fibromayalgia. Don't really know whaty question is I suppose I am jsyt amazed at how a illness so under researched could be connected to so many other issues.

Nov 18, 2015 6:21 AM

Newfibrogirl, I hunk it's because too many docs don't believe in it. I'm considered subclinical hypothyroidism. My PCP put me on levothyroxine to see if it would help. My psych doc said I needed an endocrinologist so he referred me. I have an MRI & US that shows damage to my thyroid. The endocrinologist put me on liothyronine also. It ticked my PCP off and he now wants me off it all and said the endocrinologist doesn't know what she's doing or talking about. I think he's just mad I didn't take his word for it! 🙏🌼

Nov 18, 2015 6:35 AM

New, i don't have either hypothyroid nor fibro but I'm in the process of being diagnosed with primary immunodeficiency, as my infectious disease specialist believes that's what makes it incredibly difficult for my body to rid itself of MRSA and also what keeps it coming back(sorry, not enough coffee yet). So they are working on connecting the dots for me.

Nov 18, 2015 11:54 AM

It's really amazing how many of us that have been diagnosed with fibro also have a number of other things like hypothyroidism, IBS, Sjrogens, etc.. They are all somehow connected. Either that or as I've been told, when you have been diagnosed with one autoimmune disease, others will rear their ugly heads. It's really a chicken or the egg kind of thing. I don't know if doctors will ever figure it out in my lifetime.🌻🙏🏻

Nov 18, 2015 11:57 AM

I totally agree. I've got ibs- d also and have had it for years but I've been able to control it by working my schedule around it

Nov 18, 2015 5:11 PM

I have also been struck by the concurrent illness angle. I was in a fibro support group years ago and found it very interesting that every one of us was post menopausal either surgically or naturally prior to onset of symptoms. There were like 20 of us in the group. I also have hypothyroidism, PTSD, depression, anxiety, and asthma. Before my hysterectomy I had atypical polycystic ovarian disease and endometriosis. I'm thinking that for at least some of us there is an endocrine connection. I know that currently there is some interest in black mold exposure and fibro in the medical community. But yeah it's pretty under studied. Let's face it, back in the early 1900's we would all have been told our symptoms were caused by our uterus' roaming around our bodies. The docs would commit women to psych institutes sometimes for life if they made too much of a fuss or disrupted their family's lives too much. Historically speaking from then to now is a very short time. (Not that that matters two hoots to those of us in pain today!)

Nov 18, 2015 5:19 PM

Lan4963 I'm finding it so interesting and yet scary because like u ibe got uterin issues and issues with tumors in addition to the fibro and now possible lupus. So I find it interesting that a lot of you guys have health issues that I have also and never would put it together that they were connected. And scared because if the similarities of my existing health issues match. Hearing the stories of you guys who have been dealing longer then me and to hear how hard it could get for me scares me but yet I have a little hope because we all are still going. I just wish the medical community would get together and be !prepared comprehensive so we all could get better help and relief.

Nov 18, 2015 6:40 PM

Sorry this is long.

I was diagnosed about 10 years with hypothyoidism then hashimotos thyroiditis (autoimmune). I also have a swollen thyroid and nodules on my thyroid. Issues with the thyroid can cause a lot of issues. I also have a long list of other issues including fibro.

When you have one autoimmune disease you are on countdown to the next.

The issues the thyroid can cause is never ending. Like fibromyalgia there is not one part of your body thyroid does not affect.

As with all issues thyroid comes with a long list of dr battles. I finally had to see a naturopath to help. Studies have shown that people with thyroid need to have thier numbers below the "norm". Other issues are the meds. Doctors only want to give out levothyroxine which is a T4 med which if you have T4 to T3 conversion issues you can still have all the bad symptoms but your "numbers" are "good".

A good doctor will run an entire thyroid panel not just a T4 test. I take Armour Thyroid after being on levothyroxine for years. I can't believe the difference i am not starving all the time, have more energy (more than normal with fibro), stopped losing my hair and more.

Bottom line have your thyroid tested, know your results, look them up yourself, dont settle for meds that "work for everyone" and be proactive as with everything else.

I want to add i belong to a thyroid group by Mary Shomon a patient and advocate who has written numerous books on thyroid issues. She is extremly knowlegeable and without her book "if my thyroid tests are normal why do I still feel like crap" i would have kept believing the doctors and well feeling like crap well as far as my thyroid is concerned.

Nov 19, 2015 5:44 AM

Shammagren, I always learn something from you. Thanks so much for your knowledge, and younger mind (mine doesn't always absorb what I'm hearing or reading anymore)... Thank you!

What is Armour Thyroid and where can I get it? My PCP wants me off my t3 & t4 meds, because he doesn't like that I went to an endocrinologist without his approval. My appetite has increased so badly, and I'm still having symptoms. 🙏🌼

Nov 19, 2015 6:07 AM

Flappys, you will probably have to get the Armour thyroid from your endo, as it's still a prescription drug. And him being upset that you got A referral without his approval is his own stupid fault. You need to do what's best for you.

Nov 19, 2015 10:42 AM

Flappy.... armour is a thyroid made from pork it is a T3 & T4 med in one. Your endo can prescribe what ever meds work for you. It sounds like you are already on both. The key is if it isn't working they need to listen and not give you some blanket statement like "your numbers are good". Always ask the numbers.

I am not a fan of endos. Mine kept telling my my thyroid tests were "within the normal range" I went to a naturopath who can also manage thyroid. My first appointment she reviewed my past test results and said no wonder you don't feel well your thyroid has never been properly medicated.

Finally your PCP is a jerk! Sorry but a doctor should want you to get the help you need not throw a tantrum you were seeing a specialist. You probably know what I am going to say.....if you are not happy with a doctor fire them well at least find a new doctor and move on.

Nov 19, 2015 10:54 AM

Shammagren, I want to get another PCP, but I've been told by several not to change until my disability is approved. He started me on T4 med (levothyroxine) only because my hubby reminded him that he'd been saying my symptoms debited a thyroid issue, even though his land were borderline. I wanted to sew an endocrine doc because the MRI & US showed my thyroid is damaged. He's mad because I got another doc to refer me. I'd love nothing better than getting a PCP much closer to home!

I keep gaining weight but my food cravings are way out there, especially for sweets/chocolate. I've never had a problem with it before so it's got to be related to meds. I'm going to look u up the book you mentioned. I'll also ask my endocrinologist about the armour. Thanks! 🙏🌼

Nov 19, 2015 7:47 PM

I have never heard that you shouldn't change doctors until disability is approved. I hope yours is not as bad when he writes up your chart notes. Keep up with your endo and hopefully he will be more helpful. Good luck I know thyroid hell all to well. I feel like now that I have had the extra weight so long my body doesn't want to give it up. On the plus side I have lost 10 pounds since I was put on armour. I still get the sweet cravings but the can be happy with one piece of cake not the whole cake anymore. Lol

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