Hypothyroid hell is killing me

Hormones
1

hypothyroid hell is killing me

nadafaka a day ago 8 Replies

hey everyone. i am sorry if this is going to be a long or unhappy post, but i just need someone to talk to me.

so quickly about me. i am a 23 y old girl, recently diagnosed with hypothyroidism. i am literally going through hell. i moved to the UK 8 months ago, and worked my ass off, usually 10-14 hours almost every day. then my private life started to become really stressful, and i knew something was very wrong. so last month i went to a GP.

at this moment i am waiting for my second blood test's result, as the first one had so very high TSH levels that my doctor couldn't believe it so i had to repeat it, so i am not yet on any kind of medication.

right now i am feeling like a zombie. sometimes i just wish all this would finally stop. i lost my old life. i had to quit my job, basically i am just sitting home and waiting for something to happen. but it's getting worse literally every minute. now i cannot walk more than 20 minutes without loosing my breath, or without that horrible burning felling in my legs. i can't walk up a set of stairs without breathing like a pregnant elephant.. i cant spend a day in the park as before because i am just miserable. i lost my happiness, i used to love cooking, now i practically don't even go into the kitchen, and i don't find joy in cooking or eating anything and i never feel hungry. i used to go to the gym 2-4 times every week. however, i gained more than 40 kilograms of disgusting fat in like 4 months. my thyroid is so swollen that i constantly feel like throwing up. i have terrible days when i wake up retching , and not so terrible ones, but at the end of the day i go to bed feeling sick, especially if have any kind of dinner. i have a headache all the time, and possibly because of the terrible weight gain , my back is killing me as well. like i can't even sit for an hour or enjoy having a meal or a coffee. im either constipated or so stressed that i feel like having diarrhea . basically i am unable to find any type of job because of this illness. i always feel like a stupid retarded person , i cant remember so simple things, my brain just stops working. i can't make everyday small decisions, i can't tolerate anyone. i used to be the center of attention type of extroverted girl, now i don't even want to go outside to the store or anywhere.

i am really depressed.. i have no hope at all, i feel like i am dying slowly. i know i am selfish as there are people who live with this for years , or decades. but i am just giving up on life.. my beautiful thick curly hair is now disgusting and tenth the size and dry and thin and gross, my soft skin is now dry and hands are chapped. i have stretchmarks on my belly, my body is just unbearable for myself to look at, my muscles and joints are ridiculously weak and painful after minutes. i keep having a blocked nose and my throat is so dry that i just cant deal with this anymore. i don't even remember when i last was intimate with my boyfriend, because i am just disgusted by myself.

thank god i have him. he is just so patient and helps me with everything and holds me when i just start crying from exhaustion and despair and hopelessness. i just feel terrible that he has to work so much and i am just lying in bed, and even doing nothing hurts and i feel like dying..

i am going back to my GP next week for my blood test results and then i will know how to proceed. any advice for me on how to survive these weeks? either financially, or emotionally and physically.. i am really sorry for going on and on and being so demotivating but no one seems to understand.

thank you for your time!

2

Hey Nadafaka...   

You sound like your sooo down my friend ...  and when you're that far down there's only one place to go  ... UP  !! 🌹

First of all, you are NOT alone !

there are many people , I have found , who are in the same boat as you are right now..  and many of them have turned the situation around and have become well again .... and that's what's going to happen to you.. just have faith... there are many people on here who know much more than Doctors and so called specialists ... they will advise you, once you have your blood results , on what to do next... and what to take to make  your body synchronised again... it's sounds like you do have a thyroid condition .. so

find out all you can from the doctor and ask to see an Endocrinologist ASAP 

to explain your condition , as GPs don't always know much about the Thyroid...   .. don't let anyone talk tpyou into surgery until you have learned 

ALL about your condition 

Once you get your results post them on this site again... 

land sit back and watch the replies come in to HELP you ..

I have Graves Disease but have found great help in this site and I can now deal with it very well !   

You will soon be the same ..

Ill say a prayer for your results being good for you ...  and let us all know how you are ...  you will soon love yourself  as much as your boyfriend does

...  Take Care   .., and here are some flowers for you 💐 stay strong x

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... sorry forgot to say ...

also look up Thyroid UK Health Unlocked 

you will get great support there too....   the best of Luck 🌹

4

Bless you heart I am sorry you are going through such a tough time and I really feel your pain. Been told told I'm probably going to lose my job thanks to my thryoid! Haven't left the house for four weeks.

Have they put you on any medication yet? I would recommend getting referred to an endocrinologist to assess you properly. I was put on meds by a Gp who didn't know what he was doing and they destroyed my thryoid. There are a couple of types of medication - they will try levothyroxine first. This is a t4 med. But if this doesn't work for you, get them to try liothyonine (t3 med). Happy to explain the ins and outs of t3 and T4 if you aren't aware of what it means.

Once starting medication they do say it can take anything up to twelve weeks to feel better and it often takes a couple of months to find the right dose. This is the most frustrating part I find. It's such a long process and the medical profession leave you in limbo for long periods of time with no answers.

However, it is great that your partner is so supportive and you need to hold on to that. Try and get out of the house where possible. Even if you feel low, just getting out in the sun and fresh air for five minutes is better than nothing and a big achievement.

Arrange to meet up with people where you can or invite them over for a coffee if you don't feel up to moving about too much. I find this tricky as people don't ever understand our situation, but taking your mind off thryoid problems is so important otherwise it just dominates your life. I finally went back to work this week and been told I face redundancy. I was sad at first but then came to accept it and realised that money might buy nice things and give you a comfortable life but your health comes first (easier said than done I know). Have you thought about applying for part time jobs? Maybe somethibg that will get you out and about but not drain you like a full time job?

They are trying to take me off meds (which feels like a form of torture) and since they dropped them I am crying almost hourly!! You have to remind yourself that this isn't "you" they are hormones and affect us that way and it can cause you to feel really low when your levels aren't right. Remember you WILL get through it and your partner will help you I'm sure.

Physically it has cause all kinds of muscle weakness and getting up and down stairs is hard and painful. I have an exercise dvd that is made up of ten minute workouts (one of which is yoga). It takes me a long time to get motivated but doing a bit of yoga makes me feel like I've achieved something and gives me a bit of positivity. Or the other day I walked to the post box at the end of my road because that's all I could manage. The key here is to do what you can manage and don't push yourself too hard. If your body is telling you to sleep, then it probably needs it.

It really is tough and some of the symptoms are horrendous. I remember I used to be so active and the life and soul of the party but no more. But there are still other treatment options and I haven't given up. Lots of people start out feeling like you do but once they are on the right treatment and the right levels of treatment they start feeling a bit better. Hang in there.

Also get them to test your cortisol levels as this can cause similar symptoms.

I hope this helps xx

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I would be warey of this site as there are a lot of people who start telling vulnerable users to change their meds and doses etc. I found the site quite aggressive but this one I really like and have found a lot of comfort

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I meant be cautious of healthunlocked not this site. Sorry tired doesn't make sense

7

Hi Nadafaka... 

First you need to see an endocrinologist and not a GP.  There are several reasons for the  symptoms that you have.  Have they checked your pituitary to see if it is producing too much THS?  If is is and has been doing so so some time, which it sounds like  since you stated that you worked so many hours and now cannot do much of anything and your thyroid is swollen.  It sounds like you might have a goiter due to the constant bondardment of Ths by  the pituitary or your thyroid could be an inflamed thyroid called autoimmune thyroiditis or called Hashimoto's thyroiditis this is caused by the patients own immune system.  In this case the thyroid cannot produce enough thyroid hormone because much of the thyroid is diseased or  dead.  The usual treatment  is to remove the thyroid and go on  medication.  This is what happened to me.  

My thyroid was killed by the medication I had  to take to keep my heart from going into ventricular tackycardia and stopping.  It takes a while to get everything adjusted again once the thyroid is removed and you might have to adjust your medication from time to time depending on different thing, which you will have to talk to your doctor about.  

I willnot tell you that you will never have anymore problems with thyroid but it will get better then  it is now.  I keep my thyroid on the lower lever because I had a heart transplant 2.5 years ago and do not want to get too much thyroid and have my blood pressure and heart rate go up which is not good for the transplant, so I was told.

God be with you and I will keep you in my prayers.

Blessings, Ron

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IT WILL GET BETTER!

I fealt terrible in the beginning, but things started to improve very soon after i got medication, you will be able to think straight and your body will not be like the walking dead.

Hang in there, and if you are so desperate i would go back to the GP now, don`t wait, they can give you a therapeutic dose of meds to keep you going ( I am in UK so don`t know about other healthcare systems)

Don`t worry about work at the moment concentrate on yourself as worry and stress makes it worse.

You will definately improve once you get meds. x

Rose

9

This is just a thought, as you said you wake up feeling sick and feel sick after meals, have you had a pregnacy test, I am not being personal and please forgive me if you feel that but it may be worth checking. x

Rose

10

Not to make you feel worse but its been a large number of doctors later and all of my money, giving up my family home, my life of working out 5 days a week, my job as a hair stylist to corprate women, and a child with autism that is 4 years old ( I was 44 giving birth to my son) I have a son older than you and one close to your age 20 years old.I even had to give up my mercedes Benze.My home was 260,000 Iworked very very hard to give my kids a life I never had. Was admitted in hospital for half of  thyroid removal to be discharged with no thyroid and no parathyroids that control the calcium in my blood if you dont know what they are as most do not. So many times I felt exactly like your feeling now. I remember telling  myself so many nights I felt I was dieing sowly and no one gave a dam. My client worked with the doctor that did this to me and told me he was doing the same thing to lots of patients unfortuanantly.If my story dont help give you some fight nothing will. You must keep  fighting for your life asI do my own life. You are wayyyyy to young to give up. I  know its prolly the hardest thing you have ever been through but same for most of us on this website. I have learned more here than any doctor has taught me. For some reason most of them do not care to learn more about how to take care of us after they remove such vital organ out of our body. You must put on your boxing gloves and get ready to fight for  your dam life like you never before because as I do believe at 48 years old God has a plan for your life just as my own and all others on this website. It does and will get better but only if you fight for your own life. No one can do this for you. YOu must read research and read more more more to help the doctor that God has for you to save your life. there is a lady on this site name Barbara and another thats a nurse name shelly that is more noligable than any doctor I have gone to in 11 years. All because they have been living this night mare and was forced to learn to take care of themselves. I have spent a huge amount of  money trying to help God save my life. I am still researching as well but I am not in as much pain as I was when doctors wouldnt even give me pain medication not did they know what thyroid medication to tell me to get on. The thyroid surgery bring in billions each and every month to these doctors. If you need me im always here. I remember praying asking God to help save my life and I promise I will help save others.

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Hi, you sound really low and I suspect it's not really your thyroid that is the problem, ask your doctor to test for glandular fever as the symptoms you are describing might well be this and right now there is a lot of it about and unless bloods are done and the question asked doctors very often misdiagnose this condition. There is no cure as such but antibiotics can help suppress it but once in your system glandular fever is with you for life and will surface whenever you are feeling low. Try taking wheatgrass as a supliment it will help boost your immune system and restor balance to your life but do follow the directions as it is possible to overdose on the stuff.

i wish you well

12

Thank for the comments ! I am just so sick and tired, got the flu as well, I feel like my body is just shutting down. It's like i am dying, I'm constantly in pain.. I don't even eat or sleep now. I gained like 50 kilos in a few months which is just gross 😐 and I could cry every time I see my hair 😰 It's good to know though that I am not alone with this horrible horrible illness and I'm so sorry all of you had to go through the same and I feel for you 😢

I went back to my GP today. I was not tested for anything else but TSH and T4.

TSH is 227 (0.27-4.20) (!!!)

T4 is 1.3 (12-22)

So it's pretty f.cked up 😭

I got levothyroxine today, because my level was so very high I have to take 50 for a month then 100, and go back for a new blood test three months from now.

I have no idea when I will feel any difference.. What's going to happen now? I know I have to be patient now... Do you think I should start taking my multivitamins as well? I must be very low on all vitamins minerals iron.. I've always been.

I'm just glad I could make this one big first step 😔

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I do not have any advise for you that wasn't already givin.  I just wanted to tell you that you are not alone and we understand what you are going through right now.  I feel so bad for you.  I see you TSH is in the 200's?  That's crazy!  I can't even imagine if mine ever went that high.  I feel like I'm dying when mine's at 8!  Just wanted to let you know that I will be praying for you.  Hang in there.  It will get better!  It will take time though.  It may be months before you start to feel better... but it will happen!  We are all here for you and we are all on your side and by your side!  Prayer are coming your way!