Trying to get a handle on what to do..

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New Member

Date Joined Mar 2016
Total Posts : 1
   Posted 3/28/2016 11:37 PM (GMT -6)   
Looking at 23 years of marriage in April and would not trade it for the world. I imagine that my wife has been ill since her teen years. As far as I can remember she has been tired and could sleep and entire day and still be tired. She was diagnosed with Hashimotos in the late 90's. She had her entire Thyroid removed and was placed on Synhthroid. She has experienced thyroid storms, lost hair, gained weight, intense mood swings. She is now in her 40's and I after a battery of tests been diagnosed with Lupus. Intense headaches, swelling of legs and feet, body aches, moodiness, depression, and at points concerns of bipolar traits. I am stumped, it seems as if I cannot do anything correct, I get snapped at and put down, I don't understand her pain or what she is going thru. (This is what comes at me from her). I have reached out to those that I know have the disease and trying to get a bead on how to best support. She is down in her energy levels and very lethargic. Does not want to take any medication to help with it. Wants to go holistic. I have supported that, however want to do research as to the fact that there are many out there that are up to gimmicks. I feel her pain and see that she is frustrated with her fleeing health. We have 3 wonderful kids that are teens now, one heading to college, one getting ready to graduate next year and one entering HS. They also see their mother suffering. I know that God has us right where we are to be. I am looking to speak with other men that are going thru it as well and how to assist. Any women that are willing to speak on it, please do!!

Help, help, help!!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/29/2016 10:16 AM (GMT -6)   
Welcome, LMW.

Sorry to hear that you wife is refusing medication -- is she at least taking something to compensate for the missing thyroid? (Sorry, I don't know much about thyroid conditions.)

Lupus is an auto-immune condition, where the immune system is hyper-active and instead of attacking foreign objects (bacteria and disease) it attacks normally functioning parts of the body. I've never heard of any bipolar symptoms being a part of Lupus.

We haven't had anyone over the years try to deal with this holistically -- personally, I can't see how that would work. It's different than a disease that can be controlled (inhibited) by medication or holistic treatment.

I actually find it interesting when people are willing to visit Drs and, as you say, go thru a battery of tests, to have a disease diagnosed, but then dismiss the treatment options of those same Drs.

One word of warning -- there are some holistic treatments that "Support the immune system" - these you would want to AVOID, as the immune system is already overactive!

Most of us here, mostly women but a few men, have Lupus (or MCTD or UCTD) -- not many posters who are the support system like you are.

Given, that, we will be glad to help as much as we can. Let us know of any specific questions you may have, and please read our introductory information in Lupus 101.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Mrs. Brady
Regular Member

Date Joined Feb 2015
Total Posts : 242
   Posted 4/1/2016 3:11 PM (GMT -6)   
Hi LMW, I am so sorry to hear your wife is going through this. I can only offer suggestions as a wife who had a very supportive husband when I was ill. Firstly, I would highly recommend your wife try the medications. I started Plaquenil in September, 2015 and it has made a world of difference. If she isn't willing to go that option then just support her the best you can. While I understand that she feels that you don't understand, and I am not sure that anyone can who hasn't really been through it, try to be as supportive as possible i.e. ask her how she's feeling (although it may be horrible day in and day out), try to help out around the house without being asked and try to get her to talk to someone about her illness like a counselor. This disease can cause depression and it sounds like she may be suffering with that as well. Not sure if she would be willing to take an anti-depressant but it may help her to feel better, at least mentally. Perhaps, if she is up to it, take her out to dinner just to get a change of scenery and have some time alone. Sorry, don't have much more...I am trying to think of what I wanted when I was really sick and some days I didn't know. I wanted my husband to care and understand at times and other times I just didn't want to talk to him or anyone else. I wish you two the best of luck.
Hoshimoto's Hypothyroidism DX Oct 1997
Left Sided UC DX Nov 2013
Pancolitis DX Feb, 2016
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid, Hydrocort Enemas; Prilosec; Iron; Plaquenil; Vit D; Uceris
Past Meds: Lialda - severe joint pain, initial DX Drug Induced Lupus , discontinued mesalamine, symptoms returned - less severe, DX Lupus; Imuran = Fevers (serum sickness)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/1/2016 5:15 PM (GMT -6)   
If she's not taking the proper dose of thyroid medication it can cause mental issues.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Apr 2016
Total Posts : 1
   Posted 4/9/2016 7:30 PM (GMT -6)   
My heart goes out to you and your family!

I understand your plight, as I went through the same thing with my husband. Unfortunately we didn't get to experience our happily ever after. In 2010, I was diagnosed with Behcet's Disease. After years of symptoms and finally one brutal hospitalization, I was put in touch with an amazing medical team. After my diagnosis, and after my pain and symptoms became more intense, I imagine that I was a bit of a nightmare to live with- going through all the steps of grief at the same time, or so it would seem. My husband at the time never went to a doctor's visit or stayed in the hospital with me, and sort of disappeared into himself when I became sick. We separated 6 months post diagnosis, and it was heartbreaking. I am so happy to hear that you and your wife are still in love and are there for each other, and I hope that things get better for your wife in the near future - assuming she sticks with a medical plan and sees her medical team regularly.

I tried all sorts of medications and holistic treatments to treat my Behcet's symptoms: Humira, Imuran, CellCept, Prednisone, Remicade, colchicine, Lysine, astragulus, and many more. I am now on Remicade, and have been for 5 years, and it really has given me my life back,albeit a few hiccups here and there. In February of 2015, I was initially diagnosed with drug-induced Lupus, and my new Rheumatologist immediately took me off of Remicade, as he feared it was the culprit. Within weeks, all of my symptoms came back, much worse, and in addition to new Lupus symptoms. I was finally sent to a Behcet's specialist in Oregon, who did all the appropriate testing and diagnosed me with both Behcet's and true SLE. I was put back on Remicade and also plaquenil, but had to stop the plaquenil within a month, due to an adverse systemic reaction. This is very rare, however, so if plaquenil has been prescribed, please encourage your wife to take it, as it has helped so many people.

In regards to holistic treatments, I was put in touch with a Natureopath/Oncologist, who is absolutely brilliant. She ran an entire blood panel on me, testing things I didn't even know existed. I determined what my allergies were, and made the appropriate changes to my diet, which has helped tremendously. As with many of us, I also found out that I was severely vitamin D deficient, and was started on a supplement, in addition to a few others. I learned something very important from these tests, something that I think may really help your wife. I'm not entirely sure what the picture would like, since she has had her thyroid removed, but I think some thyroid related blood tests could really help:

Depending which Thyroid hormone is more dominate in your immune system, there are certain items that can stimulate the hormone, activate and aggravate your immune system, and create a flare. There is also evidence that suggests that Lupus patients tend to be dominate in both Th1 and Th2, which means that there is a laundry list of things that one should avoid.

Throughout my research, I determined that regardless of what your levels are, if you have an autoimmune disease, you should be taking vitamin D, Omega-3 and Glutathione (which I do not currently take).

Th1 Dominant: Avoid Astragalus, Garlic, Echinacea, Lemon Balm, Licorice Root, and Vitamin C.

Th2 Dominant: Avoid coffee, green tea, grapeseed extract, Lycopene, Pycogenol, Reversatrol

Both the TH1 and TH2 Levels should be Balanced. Therefore, if a patient is Th1 dominant, they should AVOID Th1 stimulants, and may TAKE Th2 stimulants (vice versa). It sounds confusing, but that's what the science says.

Source: My physicians, Dr. Anne Hyucke and Dr. Cailin Sibley AND:
"Help, My Body Is Killing Me: Solving The Connections Of Autoimmune Disease To Thyroid Problems, Fibromyalgia, Infertility, Anxiety, Depression, Add/Adhd And More" by Dr. Kevin Conners

I don't know if anything I have offered will help, but I truly hope that your wife finds the right path and that peace and happiness will be bestowed upon your family for a lifetime.

All the Best.
Miss Laura
Behcet's- 2010 & SLE- 2015
Remicade 600 mg IV (Q4 Weeks); Prednisone (5mg); Colchicine (0.6mg);
Clonidine (0.1mg- for facial flushing); Aldactone (100mg- SLE acne & hair loss) Lexapro (20mg); Klonopin (1mg); Morphine SR (30mg)
"I don't want to Survive, I want to Live." - Solomon Northrup
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