Rheumatologist appt update/ disappointment - LUPUS UK

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Rheumatologist appt update/ disappointment

JennaShi profile image
5 Replies

I wont go into detail about this appointment other than to say that she was rude and lacked care for my symptoms. Didnt take the time to read my file and blamed my rising ANA on my thyroid antibodies. All other issues where not her department and platelets where “normal” even though that had dropped 40%. All this to say I wont be going back. Even if she was right, which she had not taken any time to do any research on my case and I disagree with her, no one deserves to be treated that way.

I will not argue with anyone on this subject and will keep pressing for answers.

If doctors want to rule out that it is strictly thyroid antibodies, they should create a specific pattern or figure out what the pattern is for thyroid autoimmune instead of just blaming it always on the thyroid. Like so many others, I am overlooked for this issue. My levels are fine and pretty well optimal, and I still have thyroid antibodies (I am highly dependent on Armour as well), well guess what, I have alot more antibodies to different things so its not just thyroid.

I wont be posting on this forum much because, apparently my symptoms may not not be Lupus. But I want to thank you all for your support and I wish you all well with good care from good doctors.

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JennaShi
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5 Replies
Wee1kirby profile image
Wee1kirby

Hope you get to the bottom of it soon! One autoimmune condition is often hand in hand with another, so if you have thyroid issues I’d think you are more likely to have other autoimmune issues. I hope you find a more helpful doctor

KayHimm profile image
KayHimm

I really hope they figure out what is causing your symptoms. It is so hard to be ill and not know what is wrong. I looked at the purpose of the ANA test and when it should be used. Maybe understanding this will help you to see why doctors are not seeing the test as significant in your case. In the US a major insurance company has issued guidelines of when they will pay for ANA tests. Based on evidence, the ANA is only to be used when lupus is highly suspected. They clarify that it should not be used as screening. There are many people who have positive ANA and are healthy. It says the ANA should confirm lupus but cannot predict lupus.

There is no excuse for a doctor to be unsympathetic to you and your suffering. But it sounds like he may be practicing good medicine by not seeing the ANA as significant if he has not seen enough clinical signs.

It is important to present any new symptoms to your doctor. Many illnesses take time to declare themselves.

K

JennaShi profile image
JennaShi in reply to KayHimm

Hi, thank you for your response, I have had plenty of ANA tests and insurance has covered it, so this would not be the case for me, I do appreciate it though. In the second half of your comment you mentioned to diagnose, you’re right, I agree it shouldn’t be used to diagnose, however in my case this helpful as I do not have obvious specific symptoms to Lupus.

Will do thank you.

25clai profile image
25clai

Sorry to hear you have had this experience. Have you had other blood tests done following ANA result ie SSA? ENA? If not I would be tempted to go back to GP , discuss the results again and possibly get referred to endocrinologist or maybe gp can run more extensive tests? Your symptoms will be a big clue too. Keep a diary re. These so you can feedback. If you’ve had tests done and other abnormalities are appearing, you could ask for 2nd opinion from a rheumatologist. I had quite a battle to get a second opinion, but it was worth it. 1 Rheumatologist told me I had fibromyalgia, was stressed and should do some yoga. This was in spite of positive RO antibodies , abnormal ANA /ENA and a myriad of symptoms. The next one confirmed severe Sjogrens with kidney function impaired. Now I have treatment, kidneys are functioning better and pain / fatigue improved.

JennaShi profile image
JennaShi

Hi, thank you for your response, yes, I have had other ANA tests and an ENA, and this was my second opinion (Rheumatologists wise). I have two arguments and am not so sure I agree with the response as they both have brushed off my case by blaming my thyroid antibodies for the cause of my climbing ANA. I already have been diagnosed with an autoimmune thyroid disease and have had my antibodies tested regularly (side note, I have been dependent on a higher dose of Hypothyroid medication for almost a year now and my labs look good). I will lay it out to explain more clearly if either of you are interested.

First ANA test: 4/05/17 ANA w/ reflex to titre: negative

Thyroid antibodies TPO: 12/20/17 >900

( side note I was diagnosed with Graves’ disease in 2008, and although TPO is common with Hashimotos, it is quite common to be seen in patients with Graves).

5/28/18 TSI (Graves’ disease antibody test) 20.50 H (still and I went Hypothyroid in 2016 and had been on medication).

9/28/18 ANA 1:80, speckled

10/30/18 ANA IFA 1:80, homogeneous

12/18/18 ANA reflex ENA detected.

1/24/19 RDL 12 profile 1:160, Homogeneous, TPO: >1000

5/09/19 Avise test:

ANA Igg positive 20 units

Hep 2 cell Fluorescence 1:320 homogeneous. TPO: 830 units

So the Rheumatologist’s argument was that the high ANA is due to my thyroid antibodies, but I disagree, for one because she did not take the time to look into my case and was rude/ dismissive. Secondly, i have had autoimmune disease for many years and my antibodies have always been above range and I have seen a climb in my ANA. She also said that this is normal as labs do things differently, although I agree, I can say my numbers and the issues I see in my labs, have been consistent.

I wont obsess about it anymore but I will be watching and although I do not show high obvious signs (a butterfly rash, or high DsDna antibodies) I can say that I believe something is going on and would prefer not to wait until full blown to be noticed. I apologize for the long message, but I wanted to be clear.

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