HAIR LOSS!!?!!! HELP?!

[Samiam1920]

I am 30 and have been Dx with ET about a year ago I also have grade two bone marrow scarring. I have been on Hydroxyurea and they recently changed the dose to 1500mg daily. Since the change I have noticed more hair loss and my hair is definitely thinner than it was. I had really thick dark hair. Now it’s very dry feeling and a lot thinner. Anyone else experiencing this?

[Hidden]

Could be a number of reasons for hair loss such as low iron, low vitamin b 12, thyroid issues to name just a few. Get your gp to run some tests so you can start to rule things out.

[Samiam1920 in reply to Hidden]

They have iron and thyroid are perfect all vitamin levels are normal.

[Hidden in reply to Samiam1920]

Hopefully for you they are ok, but sadly, being in range is not necessarily the same as being optimal for good health.

That’s what I was told too. If I had listened to my doctor I would be seriously ill now. Do make sure you get a print out of all your blood tests, then you can do your own research Btw: Doctors know very little about vitamins. My “newly qualified as a doctor“- daughter in law, spent a whole morning on vitamins over her 7 yrs of training!

[krotsida]

Yes, I have noticed that my hair is definitely thinner than it was also.

I am taking 500ml Hydroxyurea 3 times weekly because of ET.

I wish you all the best.

[Samiam1920 in reply to krotsida]

Right my hair is wayyy thinner than it was and is still falling out. I dont know what to do. If there is anything I can do? I take 3 500mg capsules every day

[hunter5582]

Alopecia is one of the potential side effects of hydroxyurea. Certainly something to discuss with your doc. Ultimately, you will have to decide whether the benefits of the cytoreduction are worth the side effects. There are other medication options for cytoreduction, but each one has its own risk/benefit profile. Ultimately, it is up to you to decide what is in your own best interests. Suggest you review the other treatment options with your doc both in light of the alopecia and the bone marrow scarring (and any other symptoms you experience).

All the best.

[Samiam1920 in reply to hunter5582]

I would say they are worth it bc without the meds my platelets reached over a million and I felt awful.

[hunter5582 in reply to Samiam1920]

Cytoreduction would certainly make sense given what you describe. I would wonder whether one of the PEGylated interferons would make sense for you. Is that something you have discussed with your hematologist? Since you are only 30, there are some issues with HU that may be of concern, particularly if you are married or plan to ever have children. Again, something else to talk to your doc about. Hope you get it all sorted out soon.

[Samiam1920 in reply to hunter5582]

I have 4 children and we do not plan on more so no issues there. Doctor said he wanted to try hold off on the interferons if he could. But I go back in end of March. To see if the new does is working.

[hunter5582 in reply to Samiam1920]

You must be one blessed but busy parent! There are some other issues to consider with HU, both in terms of being age 30 (long-term use) and if you are still sexually active (even if you do not plan to have children). I am sure your doc would have reviewed all of this with you if you have already discussed interferons. I hope it all gets sorted out ASAP.

The truth is that if hair thinning is the worst side effect, then it beats the alternative. FYI - mine mostly fell out years ago anyway - but that is just due to being an old guy. I just buzz it all off now on the advice of a very attractive younger lady who told me I would look really attractive that way. (I think it worked as she approved of the new do) There are multiple benefits - easy hair care, no time to dry it when I shower, and no more hat head.

All the best to you.

[Vtr1000]

Hi Samiam1920, I am on Hydroxycarbamide as well. I started on 500mg at this point my hair started growing slower. I am now on 500/1000mg and my hair has thinned. My haemo is not concerned as it’s in the side effects. As hunter5582 has suggested if you’re concerned with this side effect have a talk with haemo.

[Samiam1920 in reply to Vtr1000]

My doctor wasn’t concerned either said it is just one of those nasty side effects but that I needed the meds as my platelets were over million. But I’m concerned as to what I can do if anything

[forwardocho]

This is very interesting for me because the chemo has had an opposite effect on my hair. Pre-diagnosis, you could literally see my ears, my hair was so thin, it always had been, hence why I kept it shoulder length. On diagnosis (Jan 2016), I started HU. Fast forward to the present day and I have a thick, unmanageable horse's mane! My hairdresser thought I had had extensions put in - albeit it is frizzy. I have always taken Silica for my hair and nails for years (pre-diagnosis) and I would say it helped a little with growth but not with thickness or density. There is no other reason why I would have this growth spurt.

[dogsandhorses]

Yes, I have hair loss from Hydroxyurea. My GP Dr. prescribed Finasteride, 2.5 mg. per day to help. It did help when I was only taking 500 mg. of Hydroxyurea every other day. Now I am having to take 500 mg. every day, and still having hair loss even with the Finasteride. Drs. don't seem to care too much.

[bordeauxgirl]

One of the haematologists who I am supposed to see every three months on being asked about my thinning hair just shrugged his shoulders and told me to buy a wig!!