hypothyroid hell is killing me : hey everyone. i... - Thyroid UK

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hypothyroid hell is killing me

nadafaka profile image
16 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 my 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!

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nadafaka
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16 Replies
debbymcc60 profile image
debbymcc60

Aw nadafika, hang on in there. Things will Feel better, once your levels are established. It is an absolutely horrible illness and it sounds like you are really suffering. My most extreme symptoms were of hyper, either way it's exhausting. Iv cut my work days down nevertheless I struggle, I leave the house with a BE KIND TO MYSELF mantra . People here will help.

KornishPiskie profile image
KornishPiskie

Hi Nadafaka,

I'm so sorry you are feeling so ill. Your doctor is an idiot! and don't apologise for how you feel.

You aren't alone and we are here for you. You have to hold tight until you get the next results. Please ask to get a copy of all the blood tests you have had done. You can post them on here and we can help. There are some very knowledgeable people on this forum.

maybe call the samaritans or another counselling charity. They have helped me through some very bad times in the past. They don't advise but they listen and are kind.

Sending you a massive hug xoxox

mcooper profile image
mcooper

Dear Nadfafaka, you poor thing,you did the right thing coming on here for some support, as the other ladies have said sit tight now till your next lot of results come in and I'm sure you will start to feel better once on the medication. Take one day at a time and try not to be so hard on yourself. I'm pleased you have the support of your boyfriend. There are lots of knowledgeable people on this forum who will advise you. Stay strong, sending you a big hug x

Josiesmum profile image
Josiesmum

Really sorry to hear you're feeling so unwell. In addition to TSH, ask your doctor to test T4, free T3, thyroid antibodies, vitamin D, Vitamin B12, Iron, ferritin and folate. This is important as nutrient deficiencies are common and supplements could help greatly with your symptoms. Post your results on here and people will be more than happy to help.

i know this is really tough but please try to stay positive and eat really well, try and get some fresh air and exercise in a green open spaces every day. Yoga can be good for both strength and relaxation.

Many people find cutting out gluten, dairy and sugar very helpful. Here is an example of a Paleo autoimmune diet:

thepaleomom.com/autoimmunit...

This article is about food sensitivities and Hashimoto's:

thyroidpharmacist.com/artic...

Good luck x

eeng profile image
eeng

It must be dreadful for you. The good news is that once you are properly treated for hypothyroidism you should feel a whole lot better. Depression is a symptom of hypothyroidism as are weight gain, loss of libido, menstrual problems, joint pain, hair loss and hundreds of other symptoms. You need to know that it is NOT YOU, it's the disease that is causing the way you feel.

When you go for thyroid blood tests you need to go first thing in the morning because the hormone they test for (TSH) changes through the day and is highest first thing in the morning so you get given a higher dose of medication. It could take a while to sort out because you will almost certainly start on a low dose of medication and increase slowly until your TSH falls to 1 or less and your FT4 and FT3 levels increase to above half way up the range.

If your doctor wants you to wait 3 months before giving you a second test, go back and tell him how dreadful you feel. Don't let him fob you off with antidepressants, he can give you a second test after only 6 weeks if he wants to. He should be trying to make you well, not trying to follow some random guidelines.

When you get your next set of results post them here. We are entitled to a copy of our results and it helps us to monitor our own progress. There is light at the end of the tunnel, and you will recover from this.

greygoose profile image
greygoose

Well, we understand, nada. Most of us have felt most of what you're now feeling at some point in our lives. And we've survived! Some of us are doing just great.

You're just at the beginning of your journey, and it must all seem over-whelming, trying to understand what's happening seems impossible at the moment. But, your mantra must be : one step at a time.

You've already taking the first step, by getting tested. And the second step by posting on here. Now, you just have to sit tight until you next see your doctor to take the third step and start treatment. You're doing well! :)

The main thing to remember is that thyroid disease is not like a headache, there are no instant cures. But that does not mean to say that the treatment is not working. You have to learn patience with this disease, I'm afraid. But, you will get there in the end, I know it.

It's also important to remember that the weight you've gained is nothing to do with what you do or Don't eat, nor how much you've exercised. It is due to the fact that low thyroid causes low metabolism - everything in your body has slowed down, everything. And it probably isn't even fat, it's water weight. So, Don't go skimping on your food to try and lose it, because it won't work - and could make things worse. You need food. Good food. You need calories and vitamins and minerals, proteins and fats. And, did I mention you need calories? lol So, eat as much good food as you can. Small amounts and often.

And, when you can, you need to start Learning as much as you can about your disease. That may seem like a daunting task, at the moment, but when you're ready. And you can always ask all the questions you want on here - there will always be someone who can answer them. And we will never let you down, promise. You are not alone - there are thousands of us. :)

So, be kind to yourself - you do deserve it, you know. Stop thinking of yourself as 'disgusting' because you aren't! You're still you. I'm afraid I can't help with the Financial side, I know that must be difficult, but it's only temporary - as is everything else. So, Don't despair. Just sit tight and things will improve, I know it.

Take care. :)

MariLiz profile image
MariLiz

Hello, so very sorry to hear what you are going through at the moment. I hope your GP is testing more than just your TSH level? You need to know if there are antibodies attacking your thyroid, and if so, a gluten free diet will be helpful. It will also be good to know if your B12 levels are low, this often accompanies thyroid malfunction, and the symptoms are very similar. So ask for B12, ferritin, folate, and VitD to also be checked along with your thyroid. Have the blood test as a fasting test, as early in the morning as possible. I do hope you will soon be feeling very much better, and please know it is possible to feel well again. MariLiz x

Jmay88 profile image
Jmay88

Sorry to hear this! I dug my way out of the same hole. It took many years, so here is my advice so that you can do it quickly. Make sure that you do not go on synthetic t4 only meds. (Test both free t3 and free t4 and look at the resourc listed below to understand where in each of the thyroid hormone ranges you need to be to be optimal..mid range for free t4 and upper range for free t3). Have them prescribe you natural dedicated thyroid medications. You are describing a lot of stress in your life, which sounds like it may have caused adrenal issue that may have triggers this hypothyroid state. Test for food allergies and hashimoto's. Look at all of the advice on stopthethyroidmadness.com. Good luck. You can get better! Never lose hope!

faith63 profile image
faith63

you need a TSH, Fee t4,Free t3 tested. You need anti thyroid antibodies tested to see if you have an autoimmune disease. You need to research while you wait.

Stop working out, or you will gain even more weight. You need thyroid hormone..t3 to be high enough to be able to tolerate working out or you will get even more hypo.

MrsRaven profile image
MrsRaven

You poor dear. We have all been there, and there is a way out. Get your test results, including B12, D3 and mineral levels, post them here. You will get lots of well informed help and encouragement. Its a roller coaster ride, and will take time, but you will get there. Xx

nadafaka profile image
nadafaka

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 😔

nadafaka profile image
nadafaka in reply tonadafaka

Also the antibody level:

1328 (<109)

Josiesmum profile image
Josiesmum

Wow, those are very high, and vey low, numbers, and explain why you are feeling so bad. Well worth cutting out gluten and trying the autoimmune diet which should help get antibodies down. Also Selenium supplement like this one may help:

amazon.co.uk/Thorne-Researc...

Here is why Selenium is supposed to help calm the inflammation:

fixyourthyroid.com/iodine-a...

You should ask your GP for the following tests:

Free T3

Iron

Ferritin

Vitamin D

Vitamin B12

Folate

Please post your results in a new message with a title like "Blood Test Results" so that members will see them and comment.

Hopefully you will start feeling better soon once the thyroid replacement kicks in.

Good luck.

nadafaka profile image
nadafaka in reply toJosiesmum

Thank you very much:)

Josiesmum profile image
Josiesmum in reply tonadafaka

You could also ask GP for celiac test if you are still eating gluten. Even if test is negative, it is still worthwhile doing a gluten free trial as many people have non-celiac gluten sensitivity.

Josiesmum profile image
Josiesmum in reply tonadafaka

Here is some info about gluten and Hashimoto's:

fixyourthyroid.com/hashimot...

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