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fourbirds
03-08-2014, 09:29 PM
Hello All,

For those of you with a Lupus and Hashimoto's diagnosis, would you mind sharing your experience with the diagnosis of both illnesses. I am currently being treated for my hypothyroid but I am still suspecting Lupus involvement. The symptoms are so similar between the two it can be very tricky. Back in October by platelets dropped down to 110, I had an Anti DsDna of 33 (equivocal on the labs range), low Vit D (now normal over the last couple of months), anemia, photosensitive rash, mouth ulcers, hair loss, dry eyes, joint pain in the knees (now carpel tunnel, finger joints, and elbows), extreme fatigue. Thyroid levels are within normal limits currently. I had an appointment with a Rheum back in October. She was convinced that I did not have an AI condition other than the thyroid and was quick to dismiss my symptoms. With the thyroid levels under control I feel like some of the symptoms should be dissipating but they have not. The joint pain continues as well as fatigue, dry eyes, hair loss, now feeling like I may be hypoglycemic, and extreme muscle weakness in the upper arms and thighs. I am not looking for a diagnosis here but rather some support and insight into some of your experiences. I am feeling lost and miserable. I do not want to go back to this Rheum, she would not answer my questions and was quick to exit the room. I am wondering if it's time to see my GP and perhaps another Rheum.

Hope everyone is well!

Saysusie
03-10-2014, 09:50 AM
With a chronic disease, such as Lupus, it is very important that we have a doctor who listens to us, who believes us, who is interested in helping us to cope with the disease, live better with the disease and manage the disease. Since it is an illness that will be with us (in one form or another) for the rest of our lives, having such a doctor is imperative. I say this to say "YES" find another doctor!!!

The symptoms you describe could be Hashimotos or could be symptoms of the disease itself. However, until you have a doctor who is willing to run tests and prescribe medication, you will (understandably) be in a state of fear, frustration, and even depression. It is important the WE become our own health advocates. Stand up to her, demand that she run tests so that you can get answers and treatment. Let her know that you will not allow her to dismiss you or your symptoms and if she is unwilling to help you, then give you your medical records so that you can find a doctor who will help you. These are your rights as a patient, use them!

I wish you the very best and please let us know how things work out.

Peace and Blessings
Namaste
Saysusie

Nonna
03-30-2014, 01:04 PM
I have Hashimoto's and Lupus. According to my doctors and the research that I've done. Both are auto immune diseases. Susie's right that the symptoms are interchangeable. To me auto immune disease is auto immune. The endocrinologist calls it Hashimoto's, the rheumatologist calls it Lupus. From what I can tell and don't quote me as I have no backup and medical background, the symptoms are the same, it's just your immune system attacking different parts of the body.

The vitamin D factor comes into effect when the dying thyroid infects the parathyroid. The parathyroid control the retention of calcium in the blood. Low calcium and low vitamin D causes problems with your muscles. I've been taking both for a long time and will be for the rest of my life.

You definitely need to find a reliable endocrinologist and a rheumy. Make sure that they know that they need to communicate, not just through you. They need to exchange test results and conclusions.

Good Luck
Nonna

steve.b
03-31-2014, 01:11 AM
.... it's just your immune system attacking different parts of the body.....

this is my concept as well ..... too many people get all hung up over whether they have this or that problem.
if it is auto immune (and there is 63 of them), then it is auto immune ..... and needs to be treated as such.

with such a strong overlap of symptoms, and diagnosis based on a doctors "guess".
i believe we need to treat the symptoms, as there is no cure.

a doctor who listens is more important than a doctor who places titles on you.

indigo
04-01-2014, 11:20 PM
Hi
I've got lupus and now it looks like I might have hashimoto's too. I've just been diagnosed with thyrotoxicosis from my blood tests and referred to an endocrinologist. I've had a thyroid scan, which showed low uptake so it's not looking like typical graves disease and I don't have the antibodies either so my doctor is confused and I have to wait to see what the endocrinoloist says. All I can say is going through the diagnosis stage is not easy! Hope you get the answers you need soon :)

Nonna
04-04-2014, 10:44 AM
Indigo, in the beginning there are tests and more test, then maybe a diagnosis. Then a year layer more tests to re-evaluate. Don't get discouraged, as long as they can find meds that make you feel better and hopefully stronger.
Chin up and Good Thoughts always help

fourbirds
04-09-2014, 06:57 PM
I want to give you all a big hug and much thanks. I finally got in with a Rheum who actually listened and took a complete medical history. I am officially diagnosed with Lupus and Hashimoto's but as was mentioned earlier the titles don't mean anything but getting the right treatment is imperative. I started plaquenil and am looking forward to getting back to some level of normalcy. Indigo please continue to be assertive about your health and I hope you start to feel better soon!