CTE and Burning Scalp for 5 years - 70% Loss - Labs "normal" - What now???

Discussion in 'Looking For Advice (my story)' started by hairy scary, May 10, 2016.

  1. hairy scary

    hairy scary New Member

    Hello everyone :) I used to post here a long time ago with a different UN but have been inactive for a while. I've been dealing with CTE and burning scalp since 2011 which came on rapidly after a traumatic life event that had me in pretty sad shape emotionally and physically for the better part of a year. At least, this is what I suspect triggered the imbalance in my body. It hasn't let up since and every time I thought I "figured it out" - I was wrong, at least partially. It stopped all of 3 times since it started- once for about 7 days, and twice for a period of about 2 months each where I had no scalp pain and HL levels were normal. 5 years later here I am, still having TE after TE. I've certainly had my share of event triggers in the last few years (discontinuation of birth control, 3 pregnancies, 2 losses, nursing & weaning, constant thyroid med dose changes, etc etc), but I'm at a point now where I recently had every lab under the sun done and it seems like there's nothing left to blame so to speak for my relapsing TE's. My son is 18 months old now. I weaned him at 7 months PP (so almost a year ago) and I did have 2 horrendous sheds from both events (birth and weaning) that I anticipated. I also anticipated the possibility of my TSH levels changing more after weaning, and they did. They've now leveled out and have been steady at 1.48 since December 2015 and I take a pretty low dose (25mcg 3 days a week and half of a 25mcg tab the other days). I also had an ultrasound recently because my endo noticed that my thyroid was slightly enlarged (test was fine btw). I currently take a multivitamin, D3, B12, Biotin, L-lysine, and extra iron for my heavy periods (copper IUD). I haven't been on hormonal birth control since I went off it to conceive and my periods since they returned are pretty regular at every 29-30 days. I had a bunch of bloods done recently and everything is well in the range of normal or above:

    TSH: 1.48
    Vitamin D, 25-OH: 62 (30 - 100 ng/mL)
    Folic Acid: >23.0 ng/mL (>5.4 ng/mL)
    C-Reactive Protein: <3.0 mg/L (<7.0 mg/L)
    Iron: 76 ug/dL (40 - 180 ug/dL)
    Transferrin: 255 mg/dL (200 - 400 mg/dL)
    % Saturation: 24 % (20 - 50 %)
    TIBC: 317 ug/dL (260 - 430 ug/dL)
    Ferritin: 122 ng/mL (10 - 291 ng/mL)
    Vitamin B12: 998 pg/mL (>211 pg/mL)

    (also had a CBC, comprehensive metabolic, and lipid panel but i don't think that's really relevant here - all in range)

    I was worried that I might be anemic because of the IUD and heavy bleeding and my heavy alcohol use, but clearly I'm not. Everything in my body has essentially been normal for the last 6 months, and yet I just started another TE, my scalp is on fire, and I can see another horizontal dent (beau's line) about half way down my thumbs, which means I will start yet another TE in about a month. Fun fact about my nails is I get beau's lines that mark each new TE. They're like a warning of impending doom... as soon as the dent gets about 2/3 up my thumb, BAM, a new TE starts and my scalp pain flares like a banshee. I've recently also started getting some white spots on my nails (not pitting though), sometimes they have a raised bump instead of a dent accompanied with them. This is new in the last handful of months. I have pretty deep vertical ridging as well, with the tips of some nails curving downward. The hair loss is bad enough, but the scalp pain that comes with it can be unbearable some days and as pathetic as it sounds, the only thing that dulls the pain is alcohol... lots of it. Went through a trial of Neurontin a couple years ago and it did nothing for the pain. I've been trying to avoid adding anymore variables to the situation so I haven't tried Tricyclic antidepressants (though tempted). I've done the gluten free and alcohol thing in the past, just so I could say I at least tried them, but nothing...

    I just don't know what else to try at this point and I've no hair to spare so to speak as it gets tougher to conceal every day. I've lost 70% of my hair and I don't see any end in sight to these TE cycles because I can't identify what's causing them to continue. The loss is diffuse though the front part and the nape of my neck are the worst hit spots (nape probably because I wear my hair in a clip every day and may have caused traction alopecia from the pulling). Have I forgotten something???? For what it's worth mentioning, when I first started seeing my endo he did to a complete thyroid panel, but now only checks my TSH. I also have Raynaud's, but my ANA tests never came up positive for Lupus.

    I can't accept that this is my life from now until I die. It was bad enough when it was just affecting me and my husband, but I'll be damned if it's going to prevent me from being all the mom I can be for my son. I don't want him to know me as his mom who's always in pain, who drinks because nothing else helps.... What kind of life is that? This has to stop.
    Last edited: May 10, 2016
  2. thinhair1

    thinhair1 New Member

    Oh my goodness. I'm so sorry you're going through all this. Please know there is support. Have you found a good and empathetic dermatologist? The only one I know of is here is the Pacific NW. Is that a possibility for you? Also there is another blog "On the Corner of Hope and Mane" that is about female hair loss. Not specifically your type but might offer support.
    hairy scary likes this.
  3. hairy scary

    hairy scary New Member

    Thank you :) Yes I've been a follower of Lauren's Blog for a little while now (back since her trying to conceive PCOS days!). She's very inspiring. I am praying for the day to come when I am in her position, where I have found my dream hair and can move on with my life. Of course for me there's also the pain element which is really the most debilitating part.

    Unfortunately I have had no luck with dermatologists (or neurologists or allergists, or even my endo's! - I've tried them all). We only have 1 practice in my area and I've seen 3 different derms there. They suggested steroid injections, steroid creams, hormones when I was finished nursing, and of course, Minoxidil. I requested a scalp biopsy a number of times and they said "we really don't think that's necessary." They don't care. I didn't try any of those things because I'm fairly confident that what is causing my repeat episodes of TE is within. I'm very sensitive to hormone changes, but I was so sure that once my thyroid levels went back to normal and my dosing stopped changing that everything would go back to normal. It's been 6 months now though and I'm still having episodes and I can't even pinpoint the triggers anymore :/ My regular doctor is extremely empathetic but unfortunately my issue is beyond her expertise. She suggested Mayo, but it may be more than I can manage because of the travel involved, time away from work, and the costs (not to mention being away from my 18 month old son and husband). I feel so stuck.