Hello all, I hope everyone is well (or well enough!) I haven't been feeling so great, in terms of mood, lately. I just feel constantly exhausted and depressed about feeling like I need to hide being sick (until I can at least get it validated by a doctor; which I realize is silly as I definitely don't need a doctor to tell me how sick I feel at this point!) I've been reading posts here every day & today found some interesting discussion in a post by TwitchyToes about visible markers, fingernails, and hands. This caused me to take a look at my hands and fingernails, which I hardly ever even look at, because what reason is there to look at one's nails or hands? What I found was quite interesting and a little disconcerting, to be honest. I noticed that I have the same blotchy red staining on my hands that Twitchy described, but I also noticed my nails look really off! In addition to pitting and ridges, they appear to be very light in color, so light that my lunula (the white, half moon looking thing at the base) can't be seen! They are just a solid, light color. In addition to this, I have a dark red band around the top, right where my nail leaves my fingertip, and dark blue colored splotches right in the middle of each nail. My boyfriend told me I must have smashed my fingers in a car door or something and not remembered! I know my memory isn't great but I think I would remember smashing each and every one of my fingers on both hands in a car door! I'm not even sure how one would accomplish that! But all joking aside, this has got me a little worried. It's difficult for me to visit a GP as I've no insurance but I intend to make an appointment soon to get all of my symptoms checked out and to hopefully get connected with a rheumy. Just in case, I've taken pictures of my nails for the doctor, whenever I am able to visit. I'm not sure what to think of this bizarre abnormality. If anyone has any insight or has the same issue, please let me know! I'd love to hear from you guys!
Thanks everybody, for being wonderful & thanks to TwitchyToes for bringing up the subject! ♥ Apex
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GRRRREAT post, apexx👍👍👍👍...we live with these signs of systemic auto-inflammatory activity: they can become are our normal...we can go without actually noticing them ourselves, while those around us reserve comment (for whatever reason 😏). Thank goodness for digital pics: so easy to log visual symptoms...what's going on & precisely when...
Thank you so much, Barnclown! I absolutely agree! There are so many things that have become normal to me after dealing with them for so long, like my skin constantly feeling so painful to even the light touch of clothing, I've had to make sure these weren't just normal human feelings and an actual symptom! And I'm certainly happy to have the ability and knowledge to constantly take pictures of visible symptoms and changes. I hope it proves useful!
I did wonder, after posting, if the blotches and tiny spider veins might possibly affect lots of people who have no illness or cause to study hands and nails. I guess a we can do is self monitor, take photos to look back on and identify changes we can see from our historic records.
The thing is that our doctors will be used to seeing patients with yellow, half eroded nails covered in psoriasis and people with all sorts of hand disfigurements, calcium deposits, digital ulcers etc. So they may look at our hands and think us rather neurotic for flagging up relatively subtle changes?
So I see my clues as pointers for me to stand my ground, not be told I'm over thinking or it's all of the mind etc. These signs empower me to stand my ground if I have to. Hope same goes for you too Apexx
That is very wise, Twitchytoes! Our nails and hair can be such a great visible cue for where our health is, especially for those of us who suffer from invisible illnesses. I think doctors would be wise to take note of any unusual changes in these areas. But I think too many of us know already that doctors have a habit of shrugging off even the most obvious signs and symptoms! Good for you for taking your health into your own hands and monitoring your changes yourself. This is something we should all probably be doing!
Hi Apex I agree with Barnclown that you have written a great post and fab to take pictures of your nails for the doctors. They always look at nails so changes in them must be significant for a diagnosis!. I also wonder have you been tested for anaemia, the light colour of them and you say how tired you are?. Just a thought. I guess your in USA as you say you need insurance to see a Doctor!. That's tough, we're so lucky in England to have the NHS!. Good luck with your diagnosis journey and keep us posted how you get on. X
Thank you very much, Misty! You always have such kind words! It certainly wouldn't hurt for me to be tested again for anemia, though in the past, levels have been normal. There are definitely reasons why I would not be surprised if anemia was part of the problem! And absolutely, hair and nails can be such a great indication of someone's health, especially for illnesses which do not usually present visibly! You are very lucky to have the NHS out there; I've actually contemplated moving away just so I'd be able to take care of my health. It's a sad state when one has to think this way, that's for sure. Thanks again, Misty - always love hearing from you!
Another thought. Are you Hypothyroid or have you been tested recently with a full thyroid panel including antibodies? Uncontrolled hypothyroidism can cause hair thinness, fatigue, nail changes etc too and would be relatively easy to treat perhaps? I know it's something I think about a lot because I'm hypothyroid and am always wondering if the doctors have got me on the right treatment - bearing in mind my bloods haven't seemed quite right for years. There's a lot of controversy about too much store being set by the TSH when other readings are as important apparently - certainly in the UK. Same with serum B12 levels and pernicious anaemia. Maybe better understood in the US than here?
Another interesting point, Twitchy! To my knowledge, I've never been tested for any kind of thyroid issues - this would make sense though, as I fit much of the criteria. I do have the opposite problem in terms of weight though, I am always pretty well underweight, <17 BMI; I often lose weight after no change in diet, my first big flare, I lost 30lbs in a little less than a month. I think a full thyroid panel would definitely be worth looking into - I'm going to take note to bring this up with my GP, if they don't bring it up themselves! And I certainly hope that you find some better treatments for your hypothyroidism, Twitchytoes! That sounds like a terrible affliction to suffer, especially in a place that keeps such controversy surrounding it. Crossing my fingers you find something that works better for you! And thank you for all of your thoughtful replies!
Very sore point with me about tsh test as years ago i tried to get the other levels checked as from what i have read its those levels that give you lots of symptoms. My gp said tsh results are fine so we refuse to do the others.
Reading this forum i am quite horrified at all the symptoms you describe that i have or have had.
It doesn't cost a small fortune to get the full thyroid panel, b12 and vit D done with Blue Horizon Tinathebus.
Also I got my Coeliacs test with IgA done with blue Horizon recently having done the gluten challenge for three months so all cells well saturated with toast etc! GP refused having run it only a few weeks after I got back onto gluten - after five years of barely any. I discovered that in not Coeliacs conclusively - whip is good because I now eat the occasional slice of wholemeal bread or bowl of grapenuts without blaming these for all my symptoms. Sometimes testing privately is the only way.
This is how I learned I was vit D deficient - confronted GP who had refused to test and have been prescribed Adcal d3 ever since.
Wow, I guess that really goes to show that we really are our own advocates when it comes to our health. I'm glad to hear that it wasn't Coeliacs and that you're able to enjoy different types of food now! I know how tough that can be as my mother has similar issues and I know how terrible it has been for her to realize she can't eat some of the foods she has always loved. Your point about the private testing was very helpful too - I'm going to see how it goes with the GP and if there are any issues, it's good to know that I should just go for the alternative option. Whatever it costs really shouldn't matter at this point, our health is much more important than money. Thanks again, Twitchy, I really am learning so much from you!
Yes do prioritise your health first and foremost please. The NHS is spread very thin now so in the UK we autoimmuners often have to play detective in order to get anywhere. I can't think how hard it must be if you haven't got insurance in the US but if knowledge gleaned from reading and discussing things with us helps you work out what tests etc to prioritise then that can only be good. X
Absolutely! As nice as the healthcare in the UK sounds, I have heard horror stories from chronically ill/auto immune disordered friends, it makes me sad for you guys. Having no health insurance in the US is quite awful too. I'm expected to get a good job with benefits to receive health care, but I cannot work because I am ill, and cannot be treated and get better to be able to work and get health care. It's a terrible, nightmarish cycle! But as different as the systems between UK and US are, the information you guys share would be helpful to anyone, and is certainly helpful to me! And I thank you so much for that!
Your situation in the US has got to be worse I feel. My cousin is living with her dad here now having been bitten by a rattlesnake in the garden of her home in California and had no insurance so it cost her all her savings to get the life saving treatmentshe needed. Her young son has Lyme Disease. At least here in UK they can access free healthcare for him now.
Have you checked your liver and kidney function? The brown band at the top is suggestive of kidney issues, whilst the disappearance of lunulae is connected to liver problems. Having said that, medication also affects nails a lot.
I'm more intrigued by your blue-ish tinge on the top half of your nails - that to me suggests lung or heart involvement, as if not enough oxygen gets where it should. Or circulation issues, Raynauds or blood pooling from pots.
Before you panic, though, bear in mind that I'm not a doctor, so all these suppositions could be complete rubbish.
Thank you for your response, Purpletop! This is what I was afraid of - I've had kidney issues in the past, for which there was no known cause (and honestly, no one searched for one) & I also, unfortunately, have issues that can and likely will, affect my liver. I am currently (and deeply unfortunately) unmedicated completely, save for ibuprofen, so I think I can eliminate that variable. I am definitely overdue for getting my liver and kidneys checked out, i am also supposed to be getting my pancreas looked at every 6months or so but I have been slacking on that as well for the past several years - so getting these looked at is definitely part of the plan. It is interesting though, in regards to the blue coloration & dark blue splotches, for lack of a better word, I thought that it looks a lot like blood is pooling beneath my nails in some areas and like I'm not getting enough oxygen in others - and I definitely think that's a fair guess. Thank you for validating me on that! I am certainly going to do what I can to not get overly excited or worried about it until I can get the thoughts of a doctor. It'll do no good to worry myself to death until then! If anything, this may give me a good kick to get myself in for an appointment sooner than originally planned! Either way, I so greatly appreciate your thoughts on this. Your guesses were the same as some of mine, so if anything, it feels good to know I'm not completely crazy in thinking that! Again, thank you for taking the time to reply. I appreciate it more than you know!
Are we not fortunate to have such gurus on here? Caution is always a good thing, but I have found any thoughts they have are worthy of serious consideration.
Thank you wise ones.
Good luck Apex in your search for diagnoses and treatment
Absolutely, Footygirl! I am so extremely grateful I've found this place - the insight that is offered by all of these wonderfully (and sadly) experienced people is absolutely invaluable! I can't even imagine how many people find comfort, help, and answers here, and the fact that our lovely gurus, as you so aptly put it, take the time to help out and offer their thoughts is such an amazing and wonderful thing! Good luck to you as well, Footygirl, and thank you for your lovely reply!
My hands and fingers are exactly like you describe only I think mine are even more extreme. My rheummy has been carefully observing the obvious changes in them this past year. They are covered in red blotches like bleeding under the skin, I was checked for vasculitis but its not. My nails are changing all the time too just how you have described although also under the nails I have white skin thickning which is attached to the nail and its very painful. My hands are the strangest colour like grey just not healthy looking. I have raynauds, aps, MCTD and sle. I have had lung/heart invlovement. Good to know not just me!
Wow, very interesting, Shann07! I am so sorry that you suffer from so many different conditions. Though i really appreciate you sharing your experience. I am definitely going to be keeping an eye on my nails & will definitely bring this up with my doctor, considering it could mean something more serious is going on, which you have just proven to me. I hope that you are getting the right treatments and continue to get better, it sounds like your rheumy is on your side, which is great. Again, thanks for your reply! it really made me feel better knowing someone else has the same thing going on, even though it could mean something more going on
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