Some support

[Beffymon]

Hello everyone. I'm new to this group and I wish I'd discovered you all earlier. A little background on myself: I'm 23 and have been diagnosed with hypo since I was 7 years old. Now, I really want some advice because as of late my forever there symptoms have become unbearable. I sound like a right stuck-up whatsit and I'm really not, I'm just trying to live my life the best I can but it's becoming so hard to bare. I've been on Levo since diagnosed, and I've never lived without symptoms. I was bad at following up appointments because I was just a kid, I didn't understand the impact it'd have on my adult life, and now I feel I'm paying the price. I recently went to my doctor (again) about the same symptoms: constant headaches, facial swelling, muggy-headedness (you know, all the classic symptoms) but again and again they say it's normal. It's true they sent me for bloods and the last time I didn't go because I just couldn't get the time off work (a very poor excuse I know, I'm really hating myself right now) but when I went the most recent time I had new symptoms. I feel like I'm 83 years old.. I'm going grey. I have spider veins creeping on my legs and chest, I have no sex drive at all and I'm in near-constant pain it's my knees and my hips. My head is clouded and foggy, and I'm becoming speech-jammed and I'm fumbling with my keys and dropping things. Not to mention I feel like I'm going crazy because of the stoops into depression and constant anxiety. It's stopping me from doing my job and I'm scared because I feel it's my fault, and yet every time I go to the doctor they just tell me I'm normal and that's it. That's why I felt that going was a waste of time and that I should just grin and bare it, but this time I've had enough. The doctor sent me for a blood test again, and told me I had congenital hypo (which my mum was furious at because they tested me at birth which was negative- she's insistent I have hashimoto's) and they couldn't access my records from before 2015. I left near to tears and I'm sorting it to go to another doctor but I wondered if anyone's been through this before? Just living with symptoms despite them being sometimes debilitating, and getting no help? I'm so sorry for this huge rant. I just needed to tell someone about how guilty I feel in regards to myself. And I feel very very old, and like I want to crawl back into bed. Thank you in advance.

[Hidden]

Hi and welcome to the forum Beffymon You've been through a lot already for someone so young and you should NOT beat yourself up over it, it's your doctor who is negligent, not you. Have you ever been tested for thyroid antibodies? They'd likely show raised levels if you have Hashi's. Do you have any blood results you can share with us, with the ranges? How much Levo are you currently taking? It would help us to get a better idea of what's going on with you.

Also very important to thyroid function are Vit B12, Vit D, folate and ferritin levels. If you haven't had those tested you really should, as thyroid hormone can't work properly without optimal levels.

I'm sure others will be along in due course to give you advice. You're in the right place!

[greygoose]

Hi Beffymon, welcome to the forum.

Before you're going to get well, you have to stop beating yourself up, and blaming yourself. That's too negative, and won't help anything. It doesn't really matter, at this point, who's to blame, the important thing is what you do in the future. You're absolutely right that going to the doctors is a waste of time, because they know so little about thyroid - and care even less! - but the answer is not to 'grin and bear it', the answer is to educate yourself and take charge of your own health.

First step is to get hold of your blood work - results and ranges. If you live in the UK, it is your legal right, under the 1998 Data Protection act, to have a print-out of your results every time you have a blood test. Never ever just accept your doctors opinion that everything is 'normal', because there's no such thing as 'normal' where thyroid is concerned. You need to know exactly what was tested and what the results were! Odds are, they've never even done the right tests! So, get hold of them, ring the surgery and ask, and post the results on here, with the ranges, and let's have a look. Once we know what's what, we'll be able to advise you were to go next.

There are so many possibilities. As I said, maybe they haven't done the right tests - and as sure as eggs is eggs, they don't know how to interpret them! (We do.) It could be you're not converting your levo - T4, storage hormone - into T3, the active hormone. It could be that you are under-medicated, or that you have nutritional deficiencies, or antibodies. So many things that I bet your doctor has no idea about. Which is why you have to learn about your disease. Knowledge is power! So, let's start learning!

[SeasideSusie Remembering]

Beffymon good morning and welcome to the forum

Today is the first day of the rest of your life, and today is the day you start taking charge - I have my bossy head on today

As Greygoose says, get copies of your test results, with reference ranges, this isn't a problem if you are in the UK, you just ask at the surgery for a print out.

Also, because the NHS doesn't test everything, it would be a good idea to get a full thyroid panel with vitamins and minerals, you can do that privately with a home test, either fingerprick or venous blood draw.

bluehorizonmedicals.co.uk/t... or

medichecks.com/thyroid-func...

This way you will get both types of antibodies tested, the NHS only does one if you're lucky, and you'll get all the important vitamins and minerals tested (which need to be optimal for thyroid hormone to work). Takes just 2 days maximum to get results back.

When you have them, post the results on the forum and we will interpret them and make suggestions to help.

PS - all thyroid tests should be done as early as possible in the morning (no later than 8.30-9.00), fast overnight (you can have water) and leave off Levo for 24 hours.

[Beffymon]

Thank you so much for your replies, it makes me feel empowered and that I can stand up and not be afraid to say "please do more". I'm due an new blood form through the post because I said to my practice that I thought he doctor ignored me, who I think then panicked and is testing me for

Full count

Glucose

Thyroid

Creatinine gfr

Autoimmune test

Calcium

Serum diabetic

Cholesterol.

What gets me is that he was sure I'm not hashi's, but I was NOT born with it (as far as anyone knows). That's what's confusing me. I will get all my results when I go for the test and post them.

I'm on 75mg a day of thyroxine, used to be on 50mg one day 75 another alternately until around a year and a half/ two years ago. I've woken up thismorning so bad that even my boyfriend told me my eyes are very bad and my head is killing me. I don't even drink! 😩 This is definitely the start of me taking charge.