Hypothyroid Help? losing myself: hi all im new... - Thyroid UK

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Hypothyroid Help? losing myself

molls3346 profile image
12 Replies

hi all

im new to this so pls be nice :)

I have had hypothyroidism since I was about 14 and I would say throughout the 8 years of having an underactive thyroid iv dealt with it in a way that maybe I should not have.I take levothyroxine every day since and if I’m honest don’t take it with thought, I just take it because I have to.

Firstly I’m not big on eating healthy and I have tried before but have just given up ..seem so tiring and all I can think of is ‘what Is the point?’ I know there is a point to it its just I cant convince myself to actually commit to it.

I feel completely depressed, stressed, rushed, anxious all the time , my memory is so bad short term and long term.i can’t retain anything. I cant concentrate at all without taking something which is the worst then when you work 9-5 in a office.I feel I also have RLS because I can’t stop moving my legs and have a general rushing agitation feeling throughout my body.My breathing is also quite shallow and it is worse when I’m shopping, at work or even just with family , basically when there are peopleAround I get horrible panic attacks. It feels like I’m having a heart attack.

Recently I have had two sort of dizzy spells/blackouts that rarely happen to me and I have never fainted before so this was quite scary

i have given up that I will ever feel ‘good’ even when I do get happy and productive thoughts start to come in about how happiness is limited and I just cant help but think

That I don’t deserve to be happy and its better to feel shit but I know deep down its not the way to live

Any thoughts would be very appreciated and helpful

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12 Replies
shaws profile image
shawsAdministrator

I am really sorry for young people who have hypothyroidism and you've probably forgotten what it's like to feel well. You may have been becoming hypo long before you were finally diagnosed.

You can improve your health and lots of members will assist where possible.

I shall give you a couple of hints first of all.

1. Take levothyroxine first thing when you awake with one full glass of water and don't eat for about an hour. (You could take it at bedtime if you prefer as long as you've last eaten about 2.5 hours before). Food interferes with the uptake of the hormones.

2. Make a new appointment for a blood test and it should be the earliest possible and fasting, although you can drink water. Ask for TSH, T4, T3, Free T4, Free T3 and antibodies (they may not do them all but what they don't do you can get privately if you wish).

3. Allow about 24 hours between your last dose of levo and the blood test and takelevo afterwards.

Ask GP to test B12, Vit D, iron, ferritin and folate as we are usually deficient and can cause problems too.

Get a print-out of your results with the ranges and post them on a new question for comments.

Usually doctors don't quite know how best to treat people with hypothyroidism so it is up to us if we want to lead as 'normal' a life as possible.

You are a young woman and don't want to have clinical symptoms all your life, some of which you state above are symptoms so it is up to you and help from members will be forthcoming. :)

You just gave your name on your profile, but it would be good if you could put a small history, i.e. when diagnosed, dose of levothyroxine (I assume).

molls3346 profile image
molls3346 in reply to shaws

Thank s for posting

i am going to get a nutrient tests and blood test from my doctor when i see them and hopefully get all the results i need.

In the past i have trusted the doctor and just kind of accepted that my thyroid is 'normal' and dosent need any adjustments but it seems they are not really bothered and just want to get people with thyroid problems out of the way because they don tknow much about it themselves.

Hopefully things will get better..:)

also i was diagnosed at 14 and im on 50mg

shaws profile image
shawsAdministrator in reply to molls3346

50mcg is such a low dose - I don't know how you are managing as your body must be struggling. Before blood tests and levo were introduced to replace Natural Dessicated Thyroid Hormones the doses were between 200 and 400mcg.

It is a surprise when we have hypo that the doctors are incapable of knowing how best to treat us. The are completely ignorant of the job thyroid hormones do in the body. That's not surprising when you learn they've been told that the TSH is the priority (it is from the Pituitary Gland so it doesn't always correlate with levothyroxine or T3. If we don't have sufficient T3 - we will remain unwell with clinical symptoms.

The most important with regard to thyroid hormones is the Free T4 and Free T3 but they only do the T4 and ignore FT3.

shaws profile image
shawsAdministrator in reply to molls3346

50mcg of levo - no wonder don't feel well. That is a starting dose and should be increased by 25mcg each week until your TSH is 1 but first get your results and everyone will respond who've been in similar situations.

I really wonder why the 'thyroid gland' seems to be the cinderella amongst autoimmune diseases. We read on here so many awful stories - yours included.The doctor gives you levo at 50mcg which has to convert into the only Active hormone, which is T3 also called Liothyronine.

Levothyroxine is T4 and how does 50mcg give you sufficient to convert to T3, it is a mystery to me how doctors can ruin someone's life by not ensuring a suitable dose so that the T3 is sufficient to eliminate all clinical symptoms.

molls3346 profile image
molls3346 in reply to shaws

HI,

So I had my doctor’s appointment on Friday last week and really was annoyed with the whole thing. My mum decided to come along with me as she was worried (understandable) however I felt I couldn’t explain to the doctor exactly what I have been going through because I just don’t want to be put on some medication for something that I can eventually manage. Anyway I explained the blackouts and told him about how I felt during the blackout, didn’t really mention anything else because I was so fed up and overwhelmed just sitting there, practically lying about the underlying issues (addiction, depression, stress, anxiety) my mum does not even know I have these issues and it would not make things better tell her so please don’t say to.

He asked about periods and I said they are quite heavy (didn’t occur to me to mention) but I must admit my periods last longer than they should and are very painful, heavy and draining. He said that I could have anaemia so basically the end result is that I get a blood test for thyroid levels, blood counts but he insists it’s not the thyroid that’s the issue. I don’t believe he is right and I do think its my thyroid but I also feel its my own fault for forming these addictions to drugs/cigs. I just don’t feel its worth me visiting a doctor because they do shit all.

If I hadn’t had the blackout in front of my family I would have just dismissed it and left it. I would just continue battering these issues, because honestly that’s all I have ever done, just done with it and get on. All I feel these days is numb, sad and angry. Iv not got the passion to do anything and Im growing to hate people, iv even lost my beliefs to a religion. I get attached to someone and have unhealthy clingy thoughts about them because Icant talk to them. I feel completely dead.

I didn’t get the past thyroid results, sorry. I just felt so fed up and angry. I cant fully explain to you without worrying of sounding im complaining and wanting self-pity because I don’t. Iv never really asked for help in terms of health and just feel as though I cant trust people with my own health issues when I know what is really wrong

:(

Any thoughts pls?

Thanks

greygoose profile image
greygoose

Hi molls, in your last post, humanbean suggested you get copies of your lab results, because it sounds as if you're really, really under-medicated. Did you do that? Did you are for the nutrient testing that she suggested?

I'm afraid, with hypo, we have to take charge of our own health, because doctors know so little about it. And, the first step to taking charge is to know our levels, get copies from the doctor - it's your legal right to have them - and, get extra, private labs if necessary. Without knowing all of the results, there's not much you can do to help yourself - nor for others to help you. So, I know it's difficult, but please do ask for those results, and post them here with ranges. :)

molls3346 profile image
molls3346 in reply to greygoose

Hi

Thanks for your post

i have a doctor's appointment next week so im going to ask for results then.

I will post them on here.

Thanks

greygoose profile image
greygoose in reply to molls3346

You're welcome. :)

shaws profile image
shawsAdministrator in reply to molls3346

I am sorry for you but that's quite usual for doctors - ignore patient's symptoms and only look at the blood test result. If it's anywhere range they tell us it's nothing to do with our thyroid gland.

EleanorM-G profile image
EleanorM-G

@shaws advice is brilliant. Because you seem overwhelmed by everything at the moment (which is completely normal and everyone on here will say that they have felt like this at some time or another with this illness.) So that Shaws list seems more manageable, take each point and do 1 a week, 2 a week or once a month if that what it takes to make it manageable/do able for you.

EleanorM-G profile image
EleanorM-G

PS. Don't worry about everyone "being nice" to you. I am new here also, and everyone has been really lovely, I promise!!!!! :)

Post as much as you need to, there will always be someone to talk to.

RLS is closely linked to low brain iron. My guess is your ferritin is really low, if you mention RLS to your dr she should willingly check your ferritin, get it right up .. above 80. Panic attacks can link to low iron too, ask for a FBC, a full blood count. You may be anaemic.

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