Undiagnosed for years and desperate

Sorry about your husband suffering. My wife been suffering with gut trouble for to long. Nobody has figured anything out. Sadly she started hospice yesterday. Hopefully they can keep her pain under control and her severe nausea made tolerable.She deserves some relief before she passes. I feel let down by the medical community. I feel like I let her down. She has suffered to long . I couldn't get into Mayo. I tried. I got a letter from them saying that they didn't make the decision lightly , bla,bla. I think that's when my spirit broke. Sorry for rattling on. Hurting.

I don't have any answers, but I certainly hope you and your husband can find some relief. I know you tried Mayo. Cleveland Clinic is another very highly rated medical organization, as is Rush Memorial and Northwestern in the Chicago area. Maybe give them a call. All the best.

That is such a disparate and varied group of symptoms. I would recommend a very unusual doctor. If you want this contact information, email me at SereneFeminist@gmail.com.

I’m so sorry that your husband is going through so much. This is a long shot but have you had any problems with mold or water damage to the house? Mold can cause all kinds of weird symptoms. Also, it messes up your gut and sinuses. Has your husband tried a food elimination diet? I had to give up sugar and gluten and that helped tremendously. Also, check his D3 levels and vitamins like you mentioned B-12. I sure hope something will help ease his pain.

Sorry for what you both have been going through, it is stressful and frustrating. I hear you. My husband went through a myriad of symptoms too and on Oct 2022 he was diagnosed with Right Heart Failure. The cardiologist gave him a diuretic. After that he visited the ER 6 times with same symptoms. All lab wirk & imaging tests came up negative. Specialists checked him with lots of tests and all of results were normal. These physicians were frustrated so we did too. I took him to Mayo Clinic in Jacksonville because we couldn’t find answers. The cardiologist after very special tests diagnosed him with CARDIAC AMYLOIDOSIS. I read about it, never heard of it. He had a genetic test done(waiting for results). Back to Virginia where we live will have a bone marrow biopsy to confirm what type of Amyloidosis he has because there a many types that affect different organs. I recommend you to find out about it and talk to your husband’s physician. Amyloidosis is overlooked and it can be treated. Hope this helps.
Wishing you both good health. Ask in Mayo.

SIBO and hypothyroidism or Hashimoto’s can go hand in hand. They both need to be treated and followed. Prescription drugs for SIBO didn’t work in my case as they treat the symptoms and not the cause. And my symptoms always returned once off the drugs. Hypothyroidism can be an autoimmune disease called Hashimoto’s and needs to treated as an autoimmune disease.
There are tests for SIBO to get to the cause. Changes to diet are absolutely necessary. Tests showed I had a bacterial infection, a yeast infection, a fungal infection and some time later, I was also diagnosed with mold toxicity. Finding the right doctor is key who knows how to test and treat both SIBO and hyperthyroidism. Frustrated with the medical community that didn’t have anything but drugs to offer, I changed direction and found a functional medicine doctor specializing in digestive orders and thyroid issues. If you’re interested, the website to research by city and state is ifm.org to find one near you.
It’s a tough journey and I so empathize with your husband and you.
Best to you both.

Jeffsmock,

I am so sorry to hear about your wife's health issues.

You did NOT "let your wife down" ! Please don't think that way about it.

There is so much stuff in life that is beyond our control, and it sounds like your wife's health issues fall into that category. Unfortunately, doctors still don't know everything about the human body. You have done so much to help your wife.

Don't beat yourself up.

You said that your wife is now in hospice. Try to fill this time with happy memories and love- keep the negatives out of your mind now, if you can. Little things can bring joy to the present moment: flowers, seashells, candy, coffee, old photographs, movies.

When my mom went into hospice, they gave us a booklet. It was helpful. Maybe your wife's hospice caregivers can get you one, too.

Wishing you peace! (Don't beat yourself up!!)

Thank you for the hug and the comment. Yes I got a pamphlet and you are right I need to focus on the good. I got her photo frame. But it gets her to upset. So I put it in the bedroom with me. I had to shut it off it had me crying by the third night, I couldn't take it anymore. Thank you Jeff.

So sorry for your husband and for Jeff. I have Hashimoto and IBS I have had since I am 2 and I am 71 now. 7 yrs ago I had a severe sore throat and was put on antibiotics and then the nightmare began. My stomach issues of severe gas, bloating so bad I looked 9 mo pregnant. Of course the doctors don't know what it is. I researched and figured it was SIBO. I could not afford the thousands for the antibiotics. I have used everything and it got better for a bit and it is back again . But I also have fibromyalgia and I believe this is more of the culprit as it does something to the vagus nerve. Doctors are useless and they can not help me. I try everything but if I flare with my fibro this seems to exacerbate the stomach. All go hand in hand and if you have Hashimoto you usually will have IBS and fibro. His weight loss is odd if you have hypothyroidism unless his thyroid dose is too much and he is in hyperthyroidism.. SIBO causes all the symptoms you have but it is hard to treat and control. I hope you find the answers. With all the testing done and nothing comes up that would explain this besides the hypothyroidism and the IBS and Sibo. Consider accupuncture....and non traditional medicine with a functional physician. They more about this than any traditional physician. My heart aches for you . I hope you can find relief.

May the Lord bless you and keep you!
I am so deeply sorry to know of all of your sufferings.
I would:
Put everything in the loving hands of the Good Lord
Go to Church
Take the Eucharist
Pray
Holy Unction-
a Healing Service
Hobby- find something to do that brings you joy
I know we are so blessed to have our good doctors and our medical team. I would be open to natural remedies as well.
Think good thoughts.
Trust in the Lord with all of your heart, and do not rely on your own insight. In all your ways acknowledge Him, and He will make straight your paths.
Proverbs 3:5-6
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