Blood Test Results - following up on last week

[KiwiBird218]

Hi all,

Posted last week about being lost and confused about what to do with my thyroid. Took a private blood test and here are my results:

TSH - 6.19 mlU/L

Free T3 - 3.8 pmol/L

Free Thyroxine - 13.8 pmol/L

Thyroglobulin Antibodies - 197 IU/ml

Thyroid Peroxidase Antibodies - 309 IU/ml

Iron - sample error

Follate - sample error

Vitamin B12 - 39 pmol/L

Vitamin D - 107 nmol/L

I know I'll have to get the iron and follate redone, and I've been recommended to get serum methylmalonic acid (MMA) test done too.

I've had a cry, I know these aren't great and are probably a big cause of why I'm not feeling good. I've got a call with a nurse this afternoon to try and get something done. Can anyone advise on what these bloods mean and what I need to be asking the doctor to do to help me?

Many thanks🥲

[Jazzw]

Big hug cos it’s so horrible feeling unwell and not getting the help you need.

You are definitely undermedicated. The thing that is likely to help you most is an increase in levothyroxine dosage and when you see the nurse, that’s what to ask for. Your TSH is officially outside of the reference range so you shouldn’t get any argument!

See if you can get a 25mcg per day increase (I think you’re on 100mcg presently—so that would be an increase to 125mcg daily).

You’ve been let down by your surgery. Once a year testing is only ok once your replacement dose has been properly identified and it clearly wasn’t. There’s not a magic formula for calculating the dosage required, there are lots of variables—you need what you need. Ideally your TSH on levothyroxine should be no more than 2.0 and most of us do best when it’s under 1.0.

Hope the conversation goes ok x

[Jazzw]

PS—assuming that B12 is an active B12 result, that’s also on the low side. Might be worth asking to have it tested on the NHS (along with folate and ferritin).

[KiwiBird218 in reply to Jazzw]

Thanks Jazz, virtual hugs are always appreciated!

Yes, I'm currently on 100mg, so I hope you're right that they'll up my dosage as that really is out of range. Unfortunately my GP surgery has abandoned me, the only reason I had a blood test with them in Jan is because I raised it, and they only checked TSH and did nothing about my results then!

Yes B12 is active, so ill get them to recheck it along with the others, thanks for mentioning that!

Fingers crossed this is the start to getting somewhere!

[SlowDragon Administrator]

Your results show you are on inadequate dose levothyroxine

Which brand is your 100mcg levothyroxine

Do you always get same brand

Request/politely insist on 25mcg dose increase

Also request GP/nurse test B12, folate and ferritin

Hairloss is frequently associated with low iron

NHS medics won’t understand Active B12 test

But Active B12 below 70 is too low

Definitely stick on absolutely strictly gluten free diet

Look at dairy free in 3-4 months

But get Levo dose increased first

Quite likely to need further increase in dose in coming months

Aiming for TSH around or below 1

Most important results are always Ft3 followed by Ft4

[KiwiBird218 in reply to SlowDragon]

Hi Slowdragon,

I’m currently on levothyroxine Aristo, however if there is a brand I should be asking for any recommendations are greatly appreciated.

Going to ask for all those blood tests. I've been losing my hair since 2016, been to the doctor, tricologists, endocrinologist and they've all told me its diffuse alopecia. My hair is no where near as thick as it had been, and if I had been helped sooner I think it could have been stopped but instead its left me incredibly self conscious and told it'll never come back.

My plan is after being upped on my dosage get another private blood test to really make sure everything is checked. I just don't have faith in the GP anymore.

Going fully gluten free now, any cookbook recommendations/people to follow is greatly appreciated.

To confirm, my T3 and free thyroid are ok for now?

I'm just so angry, frustrated, annoyed that without the help of you lovely people I would just continue to get sicker and the GP wouldn't care!!

[Sparklingsunshine in reply to KiwiBird218]

Hair loss always has a cause, its either autoimmune, where the immune system mistakenly attacks the hair follicles, often seen in alopecia areata, the more extreme end of hair loss which can result in the loss of hair rapidly and drastically, not only from the head but eyelashes, eyebrows, body hair.

Its either down to hormone disorders like thyroid, menopause, being on certain contraceptives, PCOS. Or certain medications can cause hair loss, antidepressants, blood pressure meds etc. It can be a surprisingly common side effect.

Or it can be down to lifestyle, stress or problems with diet, too low calorie, not enough protein, or deficiencies in iron and other vitamins.

You say you've seen trichologists and others who've diagnosed you with diffuse alopecia. Did they ascertain the cause?

[KiwiBird218 in reply to Sparklingsunshine]

Hi Sparkling,

Just gone back through my records, an endocrinologist said it was diffuse alopecia in 2020 (he was foul and couldn't care less and said nothing could be done). However the tricologist I saw in 2022 said it was chronic telogen effluvium. She said to check full blood count, serum ferritin, B12, folate, Vitamin D. Then just said to take some hair supplements.

Considering I have Hashimotos and PCOS I know the odds are not in my favour here, that's what they said caused it. The endo from 2020 just said to take rogain for the rest of my life. I was hoping the tricologist would have given me a solution but nothing there either.

Perhaps I'll see some improvement with my vitamins, but any recommendations around hair is appreciated.

[Sparklingsunshine in reply to KiwiBird218]

Sounds like a hormonal issue, PCOS can cause male hormones to be dominant and that can lead to hair loss similar to male pattern baldness. Have you had any treatment for your PCOS? Rogaine might be helpful, but if you have an underlying hormone imbalance then that needs addressing first.