Feel like giving up

[hollygrace99]

I'm 17.

I've had hashimotos since the beginning of 2016. My conditions haven't really improved AT ALL. Some have, most have not. I am incredibly tired all of the time, and I have had iron infusions so that shouldn't be it. I have a terrible tummy and feel sick after eating basically anything. I am constipated, I try taking osmolax but it tastes gross. I pee up to 20+ times a day (trying to get that sorted with a urologist but on my third trial of different medication and doesn't look like these are working either, each trial is 3 months so been over a year in this condition and it really affects my quality of life - especially in school as it is my final year with exams). I don't really eat enough yet I'm maintaining weight, which makes me think that if I was eating enough I would gain very fast.

I have an endo appointment on the 6th of April. It keeps getting pushed back. I honestly don't know what to do. Last time my levels were all good.

Free T4 - 15 pmol/L (9-19)

TSH - 1.1 mU/L (0.4-4.00)

TPO Ab (Abbott) - 2080 kU/L (<6)

Are there any other tests I should get done when I do my bloods in two weeks? I don't want to have to ask for anything really different as it will be weird as my mum will get confused and so will my endo.

Please help guys. Any suggestions in regards to anything I have mentioned.

Thank you xx

note: currently on 100mcg of thyroxine eutroxig or something

[greygoose]

You need your FT3 tested - and that is not weird, and really should not confuse an endo worthy of that name! It is THE most important number. T3 is the active thyroid hormone, T4 is a storage hormone, and needs to be converted to T3. If you cannot convert the T4 (levo) you are taking, then you will still be hypo.

Did your easily-confused endo tell you you have Autoimmune Thyroiditis - aka Hashi's - and what that implies?

Have you had your vit D, vit B12 and folate tested? How about your cortisol?

[hollygrace99 in reply to greygoose]

Hi. Thank you for your reply.

I will ask for FT3 then? Really not happy with my endo but as she's paeds I should get a new one next year! Yes I was diagnosed with Hashimotos but as I was 14 she spoke mostly to my mother and treated me like a little child, not capable of understanding, but it's my mum who never understands! I'll ask for vit D, b12 & folate then as well? I think I have had them done before though and they came all clear. Pretty sure I've had cortisol checked, what is that exactly?

[greygoose in reply to hollygrace99]

Cortisol is the hormone produced by your adrenals. If it is too high or too low it will make you feel bad, and affect the way your body uses thyroid hormone.

Saying your nutrients came back 'all clear' is meaningless. You need to know exactly what the levels were. They're not infections that they're looking for, they are precious elements that affect you in every way and they all need to be optimal - not too low, and some of them not too high, like ferritin. Doctors do not understand nutrients, so it is down to us, the patients, to check that they are where they should be. Therefore, you need to get hold of the exact numbers - or, preferably, ask for them to be tested again, because you're a growing girl - and find out exactly what the results and ranges were. Post them on here and we'll be able to explain them to you.

[hollygrace99 in reply to greygoose]

Thank you. Will do

[greygoose in reply to hollygrace99]

You're welcome.

[SlowDragon Ambassador]

Your profile says you also have Crohn's

Low vitamins, especially vitamin D and B12 are likely

What supplements do you take?

[hollygrace99 in reply to SlowDragon]

Yes, although I don't take any supplements currently.

[NatChap]

Maybe get on the Thyroid UK website and print off some info to take with you. This link takes you to a section of the site full of info on tests, what to ask your doctor etc...

thyroiduk.org/tuk/diagnosis...

[hollygrace99 in reply to NatChap]

Hi. I have already been diagnosed so not sure if that would be of much help? Thank you though

[Treepie in reply to hollygrace99]

You may learn alot about your illness from Thyroid UK and get your mum to read up.

[greygoose in reply to hollygrace99]

It's not just about getting diagnosed, it's about getting the right treatment, and making sure your treatment is optimal. As you didn't even know that you needed your FT3 tested, you still have a lot to learn.

[hollygrace99 in reply to greygoose]

Thank you very much! Will get onto this

[greygoose in reply to hollygrace99]

You're welcome.

[NatChap in reply to hollygrace99]

You asked if there are any other tests you should ask for and say you are still symptomatic!? The link is to a site which has lots of info on what tests to ask for and reasons you may still be symptomatic. Often helpful to have stuff printed off to take with you to back up your requests.

[hollygrace99 in reply to NatChap]

Ah okay! Sorry about the misunderstanding, thank you.

[hollygrace99]

Thank you for this tip! Will do

[hollygrace99]

Yes. Have been tested for blood sugars and told I didn't have it? Should I follow up? What tests are specific for diagnosing diabetes insipidus.

[NatChap in reply to hollygrace99]

I used to pee a lot but it was because I was constantly constipated due to being under medicated. I find that being constipated must put pressure on the bladder and cause more frequent urination.

[hollygrace99 in reply to NatChap]

I have dealt with the constipation issue. I still urinate over 20 times daily.

[hollygrace99]

Thank you.