2.5 Years of Hair Loss. Any suggestions welcome!!

[Tilly4547]

Hi,

Apologise for the long post but wanted to include everything so as not to drip feed!

Basically I’ve been losing hair for 2.5 years now following the birth and death of my second son. Initially I put it down to stress but then thyroid levels were slightly high (4.2).

Have had all manner of tests and the latest results are below. The doctor has suggested minoxidil but I’m wary of taking it as my scalp feels like it’s burning all the time anyway and I can’t put it in a pony tail as it hurts. I have lost at least 60% of what I had and can see my scalp now, particularly in the crown area.

Does anyone have any ideas please based on these results:

Gastric parietal cell Ab. - positive

Anti nuclear antibodies - 1/80

FSH - 5.3 (IU/L)

LH - 5.1 (IU/L)

Testosterone- 0.9 (0.0-0.18 nmol/L)

Sex Hormone Binding Globulin- 156 (26-110 nmol/L)

Prolactin- 194 (192-496 miU/L)

TSH- 0.98 (0.37-4.20 miU/L)

Ferritin- 69 (22-275 ug/L)

Serum Folate- 9.0 (3.1-20.5 ug/L)

B12- 87 (25-108 pmol/L)

Vitamin D- 95 (nmol/L)

I also had cortisol levels tested and they were:

Wake - 11.20 (6.0-21.0)

12pm- 7.17 (1.5-7.6)

4pm- 1.58 (0-5.5)

Before bed- 3.15 (0-2.2)

I am currently taking:

Levothyroxine 100mg

Viviscal

Evening Primose Oil

Zinc (as my hair pull test said it was low but I never received any actual levels)

I’m not taking iron as it went high after taking it when it was 56. Viviscal contains iron I think.

Thank you if you made it this far and was wondering if anyone had any ideas please as really do not want to go down the minoxidil route but think it may be my only choice. I’m 43 by the way if that helps!!!

[m7-cola]

I am so sorry to hear about the loss of your baby. I am sure other more experienced members will be along to advise you later. But it will help if you can give blood test results for T4 and T3 if you have them.

[Tilly4547 in reply to m7-cola]

Thank you for your reply. They didn’t do those ones. Think I had them done a long time ago. I’ll try and find the results from that test.

[SlowDragon Administrator]

Very sorry for the loss of your baby

Gastric parietal Ab positive

This means, I think, that you have Pernicious Anaemia

Are you on B12 injections?

labtestsonline.org/tests/pa...

Just testing TSH is inadequate

You need FT3, and FT4 plus BOTH TPO and TG thyroid antibodies tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid or Blue Horizon Thyroid are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Do you Always take Levo on empty stomach and then nothing apart from water for at least an hour after?

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

[Tilly4547 in reply to SlowDragon]

Thank you for your detailed reply. I last had those tested in 2017. Think I’ll get them done again. The results probably don’t mean much now but they were:

T4- 92 (5.9-154 nmol/L)

TSH- 4.2 (0.27/4.20 mIU/L)

Free T- 14.9 (12-22 pmol/L)

Free T3- 4.5 (3.1-6.8 pmol/L)

Thyroglobulin Antibody- 14.8 (0-115 IU/mL)

Thyroid Peroxidase Antibodies- 17.1 (0-34 IU/ml)

I always make sure I stop Levo 24 hours before. Am not on B12 injections as he said my B12 was in range.

[SlowDragon Administrator in reply to Tilly4547]

Bloods need retesting at minimum of annually

Most need testing more frequently. Vitamins and thyroid levels, including FT3 and FT4

make sure B12, folate, ferritin and Vitamin D are tested

[G2G2]

My condolences.

I don't know if this will help, hope it will, my functional medicine doctor recommended Jarrow Formula's saw palmetto, 2 caps 1x day. Of course, optimizing thyroid levels along with vitamin/minerals is very important.

[G2G2]

Do you have a hard time falling asleep? Your evening cortisol is high.

[Tilly4547 in reply to G2G2]

Thank you for your reply. I forgot to put on my list that I take 3mg melatonin at night to help me drop off. Usually fine once I’m asleep unless my 5 year old wakes me up! Have read about saw palmetto before but is one I haven’t tried yet. Have tried most things including biotin but don’t seem to get on well with that for some reason.

[G2G2 in reply to Tilly4547]

Kids are accomplished alarm clocks Biotin didn't help me & often taking a high dose of one Vit B can throw the balance off of others. Essential oils can help also. Have you tried that?

[G2G2]

Forgot to mention BioSil. I started that recently. Took about a month to see an effect. It's also good for skin, bones & joints.

[Tilly4547 in reply to G2G2]

I’m willing to give anything a try before minoxidil as that really is a last resort for me.

[G2G2 in reply to Tilly4547]

I felt the same. There was fallen hair everywhere & I didn't have good hair to start with. I had it cut really short. I tried many things that didn't do anything for me. If you like, I'll send you essential oils to try tomorrow. I'm in the US & up too late. They certainly won't hurt.

[Tilly4547 in reply to G2G2]

I’m in the UK so not sure how easy I’ll be able to source some of them but yes please and I’ll give it a go.

[G2G2 in reply to Tilly4547]

You should be able to find essential oils. Use a good brand because some brands are junk. You want to dilute them in a carrier oil. Don't use undiluted on skin. Fractionated coconut oil is excellent. Unlike regular coconut oil, fractionated coconut oil is liquid. If you can't find it, use jojoba oil or extra virgin olive oil. To a couple tablespoons of oil, add 2-3 drops of rosemary, lavender & cedarwood.

[Tilly4547 in reply to G2G2]

Do you just mix them and then apply to the scalp?

[G2G2 in reply to Tilly4547]

Yes. Smells great. Just rub gently into scalp. Best if you can leave on overnight. You don't want to use so much that you're greasy. Several hours is ok, if overnight won't work. If you have any of the mixture leftover, store it small glass jar with a tight lid in a dark place. I use an old sock over the bottle to keep light out. Essential oils come in dark blue or brown glass bottles to keep them potent. Hoping hard saw palmetto, silica & EO help!

[Tilly4547 in reply to G2G2]

Thank you. Will give it a go.

[G2G2 in reply to Tilly4547]

Crossing my fingers for you. Hair loss is devastating. Use the oil 3-4 times a week.

[rachelleigh73]

Hi Tilly - so sorry for the loss of your beautiful baby boy. I don't have any real knowledge of these things but looking at your results I did think that your testosterone was some way outside of the reference range - perhaps others more knowledgeable will comment on this. I've had PCOS for years and for a long time was prescribed the combined contraceptive pill as an anti-androgen (testosterone is an androgen), which improved my PCOS symptoms including hair loss. But hormones are incredibly complicated. At 45 I am now menopausal which has created yet more 'challenges'! I have found a BANTS registered nutritionist very helpful in helping to restore balance over recent months, in a way that the NHS couldn't. Hope this helps - good luck to you x

[Tilly4547 in reply to rachelleigh73]

Just looked back at them and I did a typo on that! The range for testosterone should be 0-1.8 not 0.18 as I put 😀

[rachelleigh73 in reply to Tilly4547]

So that rules that out ... 😂 I would still recommend the nutritionist route if you are able - they have the time and a different knowledge base to be able to explore more deeply than the NHS can ... good luck!