Suspecting something lupus related…??

[poppywildflower03]

I’ve already posted all of my symptoms on here but I’ll post them again for context.

I had my thyroid work up a few days ago and my T4 and TSH were normal, no celiacs, my CMP was normal, my B12 is normal as well although could be considered borderline ?? But it’s still not considered low. Got vitamin D and it’s always on the low side and anemia is slight; it’s not that bad and I take supplements for them both.

You’d think the normal results would make me happy and they do but it also doesn’t because then what the hell is wrong with me.

stats: I’m a 21 year old female

Here’s a list of my symptoms:

• Brain fog

• Heavy fatigue, even with 7–8 hours of sleep

• Shortness of breath or feeling like I can’t breathe deeply enough

• Chest pain (soreness)

• Frequent headaches, sharp and specific but lasting only ~30 seconds

• Very frequent, sharp inner ear pain that radiates but doesn’t last long (few seconds to at most 30-40 seconds)

• Eyesight was stable for ~2.5 years but recently worsened drastically over the past 6 months

• Aches and pains migrating all over the body, with skin around those joints becoming sensitive to touch

• Dry eyes and dry mouth

• Very cold hands and feet

• Hands stinging from cold, even briefly being outside above freezing; they turn white around the middle but not completely white

• Hands and arms frequently go tingly/numb, even when texting or laying normally

• Knees sting and ache badly if bent for too long

• Frequent stomach pain without a consistent irritant I can trace

• Lingering smell/taste of food hours after eating (slow metabolism?)

• EXTREMELY Painful urination at random times, no UTIs or infections

• Random dry skin (usually oily) and breakouts without any changes in routine

• Skin feeling very sensitive to touch for a few hours

• Recent episode of extreme brain fog, dizziness, inability to focus; heart rate dropped to ~53 bpm (usually 75–80 bpm)—thought maybe anemia, but anemia usually causes tachycardia?

• Irregular periods

• Hair falling out in clumps, noticeable thinning

• Shaky hands

• Random nausea and gagging

- Lower back pain/ upper back pain and shoulders and neck

- Physical weakness (shaky feeling)

- Canker sores in mouth often, but they also resolve quickly

- Always sweating when sleeping, waking up sweaty even if it’s 30 degrees outside

- VERY often Vestibular migraines

- Randomly 101F but not feeling feverish just hot or elevated body temp of 99 when usually around 97 F

- Pain in lower back on the left side specifically to where I have a hard time bending over or crouching or even twisting.

- Random “fever” suddenly 101 but feeling fine. Or elevated body temp to 99 (not fever but just elevated the usual is around 97)

-I also have weird moments where h see things out the corner of my eye but there’s nothing there so I guess could be due to dry eyes

In all honesty I feel like I’m just being over dramatic. Like I say I have full body aches and I do but right now I’m fine and I have been for two or three days…but I know in a day or two or maybe even in a week they’ll come back and I’ll be in pain again.

Like all of these symptoms will all occur in the same week and will be consistent in the fact that they repeat but they don’t occur CONSTANTLY 24/7 every single day so I guess that’s where I feel crazy…

I have an appointment near the end of March with my primary so I’ll try to get a referral if necessary to a rheum. bc if I try cold calling it’s probably gonna take months and months before i can.

[MADDIE73]

OMG you have alot going on shame u could not see anyone sooner I have some of those symptoms and struggle. Hats off to you coping with everything, do u have support/help at home? I know if I do too much with my hands they swell and I can't pick anything up and if outside in cold I have to wear gloves to keep warm and sometimes with hand warmers in. Luckily I have my partner and son at home to help x

[poppywildflower03 in reply to MADDIE73]

I think im coping in the wrong ways entirely. Either I’m at work, or the research lab or at school, so I just try to get my jobs done and not think too much about any of it but it’s not working! my grades are tanking bc I think the pain, headaches, and the brain fog together are just ruining me cognitively.

I also can’t use my hands a lot of the times they feel so oddly weak sporadically.

[OldTed60]

Hi. I’m guessing from your reference to seeing your “primary” that you’re in the US or other rather than UK? In which case it’s a good idea to include this on your profile or else mention in posts here. The majority of people using this group will be from UK because it’s a UK charity hosting this community. This means that any replies you’re getting to this or your previous post might assume that you have to go through a GP rather than be able to “cold call” a rheumatologist or other specialist. Here in UK we can’t “cold call” a specialist without first getting a GP referral and this can be hard and sometimes the GP referral is rejected. With this very long list of symptoms and hypothyroidism, it’s definitely worth seeing your GP/ primary and asking for as many blood tests as they will run and referral to a good rheumatologist in your area. I really hope you get correctly diagnosed and appropriately treated soon. Take care 😊

[poppywildflower03 in reply to OldTed60]

Yea I am from the US haha I forgot to mention! (I’ll put that down)

We don't have very responsive forums other than Reddit and Reddit's not all that helpful.

We also can’t really get an appointment from specialists like a rheumatologist without a referral from a GP. The ones around my area do take calls but ofc they’re booked for MONTHS and months so I probably won’t get an appointment unless referred anyways.

Many of the good ones won’t see unless your GPs ordered the suggestive labs and even then some might not see you despite a positive ANA (which is granted since it’s non specific).

My app with my GP is at the end of March, i should probably try and get it moved up though.

I think my anxiety lies a lot in what my GP will say bc this’ll be the first time I’m seeing her for one and I don’t want to be telling the doc how to do their job either bc I’m just a pre-med with some basic knowledge lol.

But I’ve come here to just see if I’m justified in my suspicions somewhat, because most of this can’t be from hashimotos alone.

Thanks for your comment

[OldTed60 in reply to poppywildflower03]

Ah yes I understand better now. I have Systemic Sclerosis, associated Sjogren's and Hashimoto’s rather than Lupus. However there are many overlaps eg Raynaud’s, rashes, neuro symptoms, POTS/dusautomia . I do find the US Scleroderma group on Facebook very helpful as there are a couple of expert patients on there. I would imagine same applies to Lupus given it’s a more common disease. There are also other predominantly US forums such as Inspire, Smart patients etc. So if you know where to look you’ll find very knowledgeable forums where people know your area/ state and can recommend good specialists.

I think it’s very sensible not to tell a dr how to do their job unless they turn out to be just bad, in which case just move on.

I was interviewed yesterday by 3 young first year medical students who wanted to learn more from patients with long term conditions. They ended asking me if I had any advice for them. Answer: “try to keep an open mind and remember we are all someone’s patient so always try to treat patients you as you’d like to be treated yourself. Also remember that, however much knowledge you acquire over the coming years, you aren’t living in the patient’s body like they are, 24/7. They will always know some important stuff you don’t!”. They seemed very appreciative and I’m a writer so I later sent them a short nonsense verse about patient-doctor relationship I wrote last year for rare disease day, which they replied saying they really liked and related to. I’ve got a lot of faith now in my own doctors but trust hasn’t come easily and has to be earned. Hopefully whatever ails you will be diagnosed and treated asap but if it isn’t then try your best to keep an open mind about what may or may not be evolving. Take care 😊

[StriatedCaracara]

Another referral that might be helpful is an eye hospital referral.

This can work well with rheumatology referral alongside.

[poseymint]

You probably have more than one diagnosable problem going on. Good you are seeing an PCP and hopefully can get some blood tests. Irregular periods and night sweats can be hormonal, drop in estrogen. Night sweats and weight loss can be symptoms of lymphoma. Other symptoms could be Lupus and thyroid.? good luck finding your answers!

[poppywildflower03 in reply to poseymint]

I actually noticed myself gaining a few pounds in the last few weeks instead. Not a ton just an around 2-3 lbs which is probably attributed to water weight and my appetites a lot better all of a sudden, not sure why. Just had my thyroid checked and everything was in normal range although T4 was in normal range but on the lower end, and TSH was on the high end.

Hope to God it’s nothing like lymphoma 🤞🏼.

With the way that my body aches are as well in conjunction with the other symptoms, based on the number of NIH articles I’ve read I’m finding the symptomatic side to be most attuned to Lupus. I also had a CBC done in July and it was abnormal in multiple findings and hinted at inflammation.

I’m not a degree’d doctor just yet, I just have a cell biology and neuroscience degree I’m about to finish and I’m only 21 so I don’t have a lick of authority to diagnose myself and I’m keeping an open mind that perhaps it might be still thyroid related or something slightly rheumatoid.

But still I have a strong feeling which might sound bizarre bc intuition can be wrong …I just genuinely think it may be Sjogrens or Lupus along with my hashimotos.

[poseymint]

Lupus/Sjogrens doesn’t sound bizarre at all with your symptoms. Symptoms really can be all over the place with Lupus/Sjogrens and many of your symptoms fit the profile. Don’t worry about lymphoma, you don’t have the #1 symptom of rapid weight loss. I was diagnosed with lupus/Sjogrens, my main symptom was angioedema/hives (rare symptom of Lupus). I had a positive ANA, RF, everything else negative, now my labs are totally negative. With Lupus, it’s important to keep a check on the kidneys.