Discussion in 'The Undiagnosed' started by eggplant, Jan 25, 2015.
Hi eggplant! I sent you a pm a while ago. I had some questions for you regarding cah
Sorry Sheeny, I just sent you a pm!
I just wanted to give an update since I haven't in a while.
I had my new endo appointment at the end of August and he increased the spironolactone to 100mg daily. It wasn't helping to stop the loss or regrow any hair, so mid-December I called and ask to increase the dose. I'm now at 200mg daily. Still no change but it's too soon to tell at this dose. I have an appointment in February and I'm not hopeful that I'll have seen any results. I'm planning on begging the endo to bring out the biggest guns possible, dangerous side effects be damned. :/
Latest update: had my follow up appointment with the endocrinologist. I haven't had any change -- nothing appears to be regrowing, just falling out. He was stumped and is referring me back to the dermatologist. In the meantime we're going to continue with the 200mg of spironolactone. At this point the only other culprit I can think of is one of my other medications is triggering CTE, but I'm skeptical.
Hey folks, I got a new phone with a much improved camera and I thought I'd share some pictures. Basically things have continued to get worse. It's mainly in the crown region although I think it might be getting more diffuse. The thinning itself is getting really noticeable now: it's not just that my hair looks flat. Boo.
Anyway, for your viewing horror:
Have you tired toppik or dermmatch?
Is your ferritin in the 50's or your serum iron? Your hair looks a little like mine did after my TE shed and during the time I was just in a holding pattern. Have you had texture changes too?
Not yet. I've been trying to just focus on the underlying cause for right now. I wouldn't mind how awful it looks now if I knew it would get better. Have you tried them?
It seems to be the ferritin that is low. Here's a summary of my iron:
June 2014: ferritin: 9.9
Dec 2014: ferritin: 15.2; iron serum: 143 mcg/dL; total iron binding capacity: 475 mcg/dL (this was flagged as high); transferrin saturation: 30.1%; transferrin: 339 mcg/dL (also flagged as high).
Feb 2015: ferritin: 35.7
July 2015: ferritin: 54.3
Oct 2015: ferritin: 45.8
Nov 2015: ferritin: 85 ---- this last one came from testing through my work -- I'm not sure what to make of it because if anything I was slightly neglecting my iron supplementing at this time (which I'm still doing -- I've had to cut back because it seems to be causing GI problems. I'm going to push for iron infusions at my next visit which happens to be tomorrow).
To be honest for a while I was skeptical of the iron as a factor. I thought it was probably androgen related. But after going to the max dose of Spironolactone and seeing zero results I'm really wondering about the iron again.
With your current ferritin levels I don't think a Dr. would Rx iron infusions. I know my insurance will only pay for them because I am still diagnosed as full blown anemic. What kind of iron are you taking? 1100mg of what kind? I take small doses of chelated iron 3 x's a day and that is much easier on my stomach. They are only 30mgs. each, no side effects.
I've been taking 2 x 325mg ferrous sulfate and 400 mg in a multivitamin table (I did the math wrong it's really1050 mg oops). The thing is that I've been having a lot of nausea/GI issues, and even had a colonoscopy recently. The GI doctor says I probably have Irritable Bowel Syndrome. I'm just not sure I can maintain these levels of iron intake because I think it's a huge culprit at making me sick to my stomach.
Ferrous Sulfate is notoriously hard on the GI tract, I would look into one of the gentle irons. I used Advanced Ferrochel by Source Naturals 2-3 x's a day and I had no stomach issues at all. Another great supplement is Mega Foods Blood Booster.
You and Your Dr. know best, but if you don't get the infusions I would try switching the type of iron for sure.
Thank you for the recommendations. I'm definitely going to order something this weekend so that I can get started on something better. I also had blood taken today to measure my iron and also my testosterone and DHT numbers (although those probably won't have changed much).
Just an update on my bloodwork (this seems to have become my place for all my updates):
Testosterone: 22 ng/dL (normal 2-45) (previously: 24)
DHEA-sulfate: 180 mcg/dL (normal 23-266) (previously: 258)
Ferritin: 124 ng/mL (I guess that 85 from 2015 wasn't an outlier -- I still have no idea why my ferritin has suddenly shot up but I won't complain)
I was also told in my message from the doctor's office that my "Total Iron" was 327 mcg/dL, which I guess (I hope) was my Total Iron Binding Capacity since they included the range as 250-400 (the range for normal TIBC). (Unfortunately, getting proper results from my doctors is a PITA these days because reasons).
I guess that rules out iron/ferritin as a cause. I just got word that my ferritin is trending down and I am due for another infusion BUT my hair just keeps improving. I'm afraid to "shock" my system with another mega dose of IV iron if it won't improve my hair.
Yeah I guess it's not iron...at least not anymore. My derm's latest theory is that it's just due to stress now. I don't know that I buy that -- I certainly don't like the idea of just assuming it's stress because that pretty much makes it impossible to explore other possibilities.
The only thing left I guess is minoxidil which I'm dreading and which seems questionable if it will even work after the inevitable dread shed given that I have no idea what's causing the problem. (Even on the max dose of Spironolactone I'm seeing zero improvement). The only other thing I can think to do is add Saw Palmetto to the mix in case it really is androgen related. There's also finasteride, but with not really knowing if this is androgen related and given that I'd almost certainly have to pay out of pocket for it ... I'm just .... I don't know. (Also I'm trying to find out of there's any possible long term effects of finasteride in women because I'm only 31 -- if anyone knows about this let me know!)
Just wanted to give an update that I've started using minoxidil (just a 2% right now but I figure I'll go up to the five when I run out). I haven't seen any effects yet (good or bad -- sort of like everything else I've tried but I realize it's early). I'll keep updating.
Appointment with endocrinologist today. I asked about the possibility of adding finasteride since literally nothing else is working but he said he wouldn't prescribe it. Feeling very frustrated.
I think my next step is going to be looking for a specialist in hair loss because current doctors are becoming useless. If anyone has any recommendations in the New England area please post or pm me. I'll go anywhere in the NE region.
Theres a couple in Boston, is that good for you? I can get the names....Takes a good 6 months to get in though.
Eggplant- I live in NE -Hopingforthebest posted about Dr Hoss based out of CT. Not sure where you are but that could be a good option? I just made an appt with her and got in for November... My shed is horrendous again after adding T3 for my thyroid.. was at 80ish a day and now back to 150-200 every day 2 1/2 months after adding it in and it is not stopping 5 months later... I have been to 2 hair derm specialists in Boston over the past year, both say TE but I am not sure.. how can I shed for 2 years and not unmask anything? Is that even possible? Not sure I want a biopsy.. going to wait to see what Dr hoss says.. in the meantime tempted to stop the T3 drug... UGH
What is your shed like daily? is your loss pretty diffuse?
Yes, Boston is good.
I'm definitely thinking Dr Hoss too. Please let us know how your appointment goes!
My hair loss is diffuse and on the crown area -- I think the front-center and the temples are the hardest hit. I don't really shed a super lot although it's more than I did in the past. The bigger problem seems to be that nothing will grow anymore except for the occasional miniature sprouts that never seem to make it. My derm also said TE -- and said the scalp biopsy said the same -- but I don't buy it.