Hello everyone I currently have hypothyroidism di... - LUPUS UK

LUPUS UK

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Hello everyone I currently have hypothyroidism diagnosed several years ago. In 2010 I went to my GP with overall joint pain, muscle aches,

Sally79 profile image
15 Replies

tired. I felt like I couldn't do anything nor did I want too. Working my job was hard enough. The GP ran blood test, it came back with a positive ANA. I was sent to a rheumatologist that Dr ran a serious of test. She informed me that no arthritis and I would think she tested for lupus as well just not sure. As the years have went by my symptoms come and go. have started to lose my hair in areas now and at times my face gets a rash that comes and goes. I have been back to my GP for virus, cold sores, feeling achy at times. I tell them my concerns, they just say its nothing to be concerned with. Now I have developed a lump in groin area along with a rash on upper thighs. I have seen a surgeon told him about everything. He ran tests for lymphoma was going to do a biopsy on lump but it went down. Tests came back all my organs are good shape. Thank goodness! But now rash is back feeling crappy again. I'm going back to see the surgeon for a biopsy on my lump. Any advice on what I should ask surgeon? I just know something is going with me! I know my body. Thanks for any input!!

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Sally79
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Sally79 profile image
Sally79

Thank you anthroprof. I will look into that. I will also check on that with the doctor I will be seeing.

Larrylad123 profile image
Larrylad123 in reply toSally79

I just read about the comments from antroprof that seems good advise, my daughter was told to take vit D supplements and when she researched connections with diet and autoimmune there is a lot of information about organic and also being vegetarian.

chandlermandy profile image
chandlermandy

Hi I aso have had hypothyroidism for about 20 years but have always had very similar symptoms to yours. After 6 years of blood tests and investigations I have finally been diagnosed with seronegative lupus. My consultant at rheumatologist was fab in her diagnoses and started me on hydroxychloroquine. They have turned my life round and as for getting it confirmed in bloods she said it will eventually show up.

I kept a log of everything that was wrong with me for a year, including photos of mouth ulcers and face rash, even those things that you stop going to see the doc about because you know they will just fob you off. This really helped me and my rheumatologist, especially when you sit down in the consultant room and your mind goes blank.

Hope this helps a bit, good luck.

Sally79 profile image
Sally79 in reply tochandlermandy

Hi Chandlermandy, I have started a log too, as like you I know that I will not remember everything that has been going on with my body. I believe I will call my rheumatologist. Thanks

dgleds profile image
dgleds

Howdy!!!

Im hypothyroid....I started feeling worse than just hypothyroid stuff...joint/muscle stuff..mega tired etc...I was tested and my ANA was high with an odd pattern, everything else was negative, except that CRP I believe its called, was high for inflammation...I passed 4/11 criteria ,and was told I have lupus...(its mild though, but still can knock the stuffing out of you!!!) I lost hair, but it was others noticed that...I think I had groin pain...I have brain fog...No rashes..

misty14 profile image
misty14

Hi Sally79

In view of your symptoms and ANA result I think you need to be seen by a Rheumatologist again and take a list of all symptoms and pics of rashes etc. it can be a big fight for us to get recognition and treatment!. Good luck for your biopsy and surgeon visit.X

Sally79 profile image
Sally79 in reply tomisty14

Thanks Misty14 I will call my Rheumatologist. I seen her last November and informed her about hair loss and not feeling well but she seemed to just ingore the issue! I will keep fighting!!

misty14 profile image
misty14 in reply toSally79

Good luck Sally 79X

angus50 profile image
angus50

Hi

I have lupus and I suffer with lumps under my arms in my groin i ave had my gland remove from under my arm because of these lumps they come up everywhere even on my head, your symptoms sound very much like mine I know that it is a fight to get the doctors to listen but you must keep fighting ask the surgeon what he thinks is causing them and what the name is of why you get them.I was told it was a part of lupus, by the surgeon and by the rheumatologist. I don't know how many others suffer with this symptom but I'm betting loads. I have had lupus plus other secondaries for over twenty years and even now I have to fight to be heard, lupus does not always show up in the blood and sometimes it shows that things are good and yet we are still suffering from the symptoms. Please hang in there and all the best for biopsy and if I can be of any help don't hesitate to ask.

spanskmargeritt profile image
spanskmargeritt in reply toangus50

My daughter have a lump that come and go on her chest .....(maybe it comes when there is other lumps too around her neck/head) Wonder if you have had a lump in the same place.

Sally79 profile image
Sally79

Thank you Angus50 for your support and thoughts. I will inform the doctor of several issues I'm having. It really gives me comfort to know that people understand what I'm going through. Thanks again!

LesJames profile image
LesJames

Hi I can't tell you how many tests I have had that have come back negative. Yet 5 DVT's and an insufficient adrenal gland leaves me tired,listless and completely flummoxed. I am still under going tests and weirdly I am hoping for something to prove positive. How weird is that! Good luck I hope you get a diagnosis so you can get the right drugs.

Sally79 profile image
Sally79 in reply toLesJames

Hi LesJames I hope you get a diagnosis to get yourself on the right track also. Is is strange for me to feel better at times? Like today right now I have good engry, not achy. I have a strange question what are DVT's?

Larrylad123 profile image
Larrylad123

Hi Sally 79

I would check about the lupus tests when my daughter was diagnosed she was asked about the face rash which at the time she didn't get but know 1year later does! She was also told you can have Lupus but not test positive for it she was also asked about lumps in the areas where you have lymph glads which she hasn't had thyroid problems are connected to autoimmune conditions. Your other symptoms are like some of hers the lupus blood test is a double stranded DNA and the ANA which you have. It seems likely to me. We went to the Lupus centre in London!

Sally79 profile image
Sally79 in reply toLarrylad123

Hi Larrylad123, Thank You for the insite on your daughter. I hope she is doing well. I just really hope that a Doctor will listen to me. It gets so frustrating! Sometimes I think they look at me like I'm crazy. I keep telling them I know my body and something is not right! :(

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