Symptoms and confusion....: Hi All, I’ve posted... - Thyroid UK

Thyroid UK

140,403 members165,173 posts

Symptoms and confusion....

Sarahlouise1980 profile image
17 Replies

Hi All,

I’ve posted many times about symptoms I’ve been experiencing. My gp reduced my Levothyroxine dose at the end of January from 150mcg down to 125mcg. No blood test was done before reducing. Around the middle of April I started experiencing excessive hair shedding and noticed my skin seemed oilier than usual. The doctor has tried reducing my Levothyroxine and the hairloss has got worse. I was also found to be low on b12 & folate in September. I still think maybe the hairloss is linked to my thyroid though as it started up three months after reducing? Nothing is seeming to help...

Written by
Sarahlouise1980 profile image
Sarahlouise1980
To view profiles and participate in discussions please or .
Read more about...
17 Replies
SlowDragon profile image
SlowDragonAdministrator

What were results when on 150mcg

You probably never needed dose reduction.....far too many GP's only test TSH

Most important results are FT3 and FT4...if they were not over range dose shouldn't have been reduced

The trouble with reducing dose of Levothyroxine is that vitamin levels then frequently drop, sometimes dramatically....then TSH goes even lower

Spiralling downwards into vitamin deficiencies as result of being hypothyroid due to dose reduction

Just testing TSH is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven 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

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

Hi SlowDragon,

I've had blood tests that have since shown low b12/folate. I'm just not sure if it is a coincidence that the hairloss started 3 months after reducing my dose. I have enough thyroxine to up my dosage to 150mcg a day and have started this two weeks ago. I've not noticed much difference in the hair yet but think it may take longer to notice a difference? I also intend to supplement b12 and folate.

SlowDragon profile image
SlowDragonAdministrator in reply to Sarahlouise1980

Low vitamin D can also affect hair

Suggest you test vitamin D now

vitamindtest.org.uk

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

GP will only prescribe to bring vitamin D up to 50nmol.

Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, you may need on going maintenance dose to keep it there.

Test levels twice yearly

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Folate and B12

Are you taking a good quality daily vitamin B complex?

B complex with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Getting FULL Thyroid and vitamin testing 6-8 weeks after increasing Levothyroxine

Make sure to do blood test as early as possible in morning before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test

Come back with new post once you get results

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

My vitamin D is around 60 after loading doses from the GP now supplementing with 2000iu a day. Ferritin is 139 as i supplement with ferrous gluconate. Would you think it a coincidence if you lowered levo and started having hairloss a few months later? If i hadn't of lowered my levo i'd be more inclined to think it was due to something else. I have no other symptoms of b12 or folate deficiency.

SlowDragon profile image
SlowDragonAdministrator in reply to Sarahlouise1980

It's almost certainly due to lowering dose. Hairloss is common hypothyroid symptom

See the reply in this post by Diogenes regarding low TSH. (Diogenes is eminent scientific thyroid researcher.)

healthunlocked.com/thyroidu...

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

How long will it take on the increased dosage to notice an improvement? I increased up to 150mcg just over two weeks ago and so far i haven't really seen much difference.

SlowDragon profile image
SlowDragonAdministrator in reply to Sarahlouise1980

6-8 weeks minimum

Getting full Thyroid and vitamin testing via Medichecks strongly recommended

Post from 2 years ago

healthunlocked.com/thyroidu........

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

Thank you slow dragon, my blood results on the 125mcg this year were nowhere near hypothyroid as that test a few years ago and yet i still have this hairloss and only since reducing from 150mcg. It is baffling me as to the cause.

SlowDragon profile image
SlowDragonAdministrator in reply to Sarahlouise1980

It's extremely difficult to reduce dose...as explained by Diogenes

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

So I may need to be on the 150mcg dosage?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

Results on 125mcg :

TSH <0.005 (0.38-5.00)

Free T4 16.3 (7.00-16.00)

Free T3 5.1 (3.9-6.00)

This is after my dose was reduced from 150mcg. Can I really need to increase back up to 150mcg?? So confused and my hair keeps falling.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SlowDragon

Hi SlowDragon, my most recent results on 125mcg are below, I think they look okay. Could I really need to be on 150mcg to stop the hair fall??

SlowDragon profile image
SlowDragonAdministrator in reply to Sarahlouise1980

What ever you decide to take you need to stick on it.

The constant chopping and changing of doses upsets TSH and vitamin levels

Obviously this previous post is why dose was increased

healthunlocked.com/thyroidu........

Have you had ever thyroid antibodies tested?

Are you on strictly gluten free diet

humanbean profile image
humanbean

Ferritin is 139 as i supplement with ferrous gluconate.

Do you have the reference range for that result?

If the range is 13 - 150, which is one of the commonest ranges I see on this forum then your ferritin may be a little bit over optimal.

If you are currently taking ferrous gluconate every day, you might want to start giving it a miss one or two days a week.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to humanbean

The range goes up to 200.

humanbean profile image
humanbean in reply to Sarahlouise1980

Okay, so your ferritin is optimal after all. :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to humanbean

My ferritin is okay, vitamin d okay folate and vitamin b12 are low so I’m starting supplementing those, the reason I think the hairloss may be related to thyroid is because it came on three months after reducing my dose and even though on subsequent tests my levels appear to be good I am still losing hair.

Not what you're looking for?