Autoimmune thyroiditis

[aurora31]

I have been sufferring with autoimmune thyroiditis for fifteen years. None of the treatments have really worked, I have mood swings, I am depressed and I kept on putting on weight. I feel lonely in my suffering.

[greygoose]

Hi aurora31, welcome to the forum. I'm so sorry you're feeling bad.

The first step to recovery is to get hold of your blood test results. You sound under-medicated. So, you need to know exactly what tests your doctor is doing, and exactly what the results are. Just ask for a print-out at reception. If you live in the UK, it is your legal right to have a copy.

Post the results on here, with the ranges, and let's have a look. Also tell us what you're taking, how much, and how long you've been on that dose. Then we'll be better able to advise you.

[aurora31 in reply to greygoose]

Thank you so much for your reply. I am from Romania. I take Euthyrox 25 mg once a day, Duphaston for 10 days every month and Alpha D3 once a day and started on this medication a year ago. My TSH results were fine the last time I took them, in December 2016, my prolactine levels also.Before that, I took Dostinex for two years with no results. I suffer of immune arthritis also. I have 4 nodules on my thyroid and I sleep very badly and I have difficulty in breathing. I am tired all time and I have no energy or motivation to do anything. I would feel so blessed if someone helped me. Thank you again!

[greygoose in reply to aurora31]

Well, I'm not surprised you are tired all the time with that stupid dose! 25 mcg is only half a starter dose. How long have you been on that?

Does your doctor only test TSH - and what was your 'fine' result? 'Fine' is an opinion, not a medical diagnosis. And, what about the FT4 and FT3? The most important number is the FT3. Does your doctor ever test that?

You've obviously had your vit D tested. So, what was the result? And how much D3 are you taking?

What about vit B12, folate and ferritin? Have they been tested? Your breathing problems could be due to low B12 or low iron.

[aurora31 in reply to greygoose]

Never tested FT3 and ok was all I heard. I was never tested on vit D or B12, folate or ferritin. I take Alpha D3 0.5mg. I have been on this treatment for a year. Thank you you are not surpised I am tired. My doc says I am always overreacting and I should feel good which I don't.

[greygoose in reply to aurora31]

Your doctor is an idiot! Can you see someone else? I don't see how anyone could feel well on only 25 mcg levo. It's just enough to stop your thyroid production, but not enough to replace it. Most people need between 100 and 200 mcg.

But, you do need to see the actual numbers, the results and ranges of your tests. You can't just take his word for it that everything is find, because he obviously knows nothing about it. He is the one that is keeping you sick!

That sounds like a very small dose of vit D, not likely to do you any good. And, you need the other nutrients tested. They are more than likely low, and will need supplementing. Low nutrients can make you very ill.

I think I would have smacked your doctor in the kisser, by now! How dare he tell you you're over-reacting, and you should feel fine?!? He knows nothing about it!

[aurora31 in reply to greygoose]

Let me tell you are amazing! Amazing for taking your time to talk to me, to ask me questions and to show so much compassion! No doctor has cared so much and I will ask the 10th or maybe the 15th oppinion of another doctor. You made me feel I shouldn't give up as there are, maybe, people like you out there. I will see how I can get my nutrients tested. And you're right , the doc was keeping me sick. Thank you so much for being so open and honest and making me feel better about myself and reassured! You are such a sweet person! I just wish you were my doctor... Thank you!

[greygoose in reply to aurora31]

If I were a doctor, I'd be as self-opinionated and ignorant as the rest of them. It's precisely because I haven't been to medical school that I can look at this with an open mind.

No, you really shouldn't give up. You're worth more than that. You deserve better treatment. x

[aurora31 in reply to greygoose]

You are so sweet ! I just know you wouldn't be as the rest of them and I know not all docs are the same. I guess you love medicine and you care. So you're on this site to help people ? Thank you for reassuring me I'm worth . I won't give up!

[greygoose in reply to aurora31]

Well, I wouldn't say I love medicine. I would just like to try and help people from my personal experience.

[aurora31 in reply to greygoose]

I see. That means you have a history in thyroide disease too?

[greygoose in reply to aurora31]

Oh yes. I think I've been hypo for most of my life.

[aurora31 in reply to greygoose]

I see now. Would you mind talking about your hypothiroidism? Thank you.

[greygoose in reply to aurora31]

Oh, gosh! It's such a long, long story. I think I became hypo when I was around 8, because that's when I started putting on weight, and couldn't lose it, and I've had weight problems ever since - although I've never been a big eater. I caught every bug going and was always ill. Doctors didn't give a damn. No-one ever tested me until I was 55, when I saw an endo in France, by accident.

I was happy to have finally been diagnosed, but then realised that no-one really knew how to treat it. I went from doctor to doctor, just getting worse. I tried levo only, levo + T3, NDT and, finally, T3 only. And, only on T3 only did I start to feel better. And, I was only able to do that because I was self-treating. I'd given up on doctors a long time before. I've received nothing but bad, indifferent treatment from every doctor I've ever seen, and been called, lazy, greedy, stupid and in need of a psychiatrist. I've been laughed at and mocked and belittled. I've had three operations that could have been avoided if only just one of the doctors I've seen in my life had known just a little about thyroid.

There are two exceptions to that damning diatribe on doctors. I did find a very knowledgeable one in Paris, but he wasn't open-minded, and couldn't accept that I didn't fit into his somewhat narrow view - although vastly wider than any other doctor I've seen! And, the last one, four years ago, with whom I got on very, very well, and he did care, and wanted to make me better. But, he was so very ignorant that it made my eyes water and my hair stand on end! I had to sever the relationship when he told me that women don't have testosterone!

So, that's my sorry story, in a nutshell. Not sure it helps anything, though.

[aurora31 in reply to greygoose]

So many simililarities between you and me. I am not a big eater either. It surely helps me talking to you indeed, no doubt about it :). How could you self-treat? I guess you had enough of their ignorance as I do, too. I was also called lazy, fat, unstable and hysterical and being treated with indifference. I started to put on weight when I was 9, I was laughed at, blamed and all my relationships have been abusive because of my lack of self-esteem. I learned how to love myself just the way I am, but I can't deal with the horrible fatigue, insomnias abd panic attacks. How can a doctor say women have no testosterone? I'm not surprised you were so annoyed! Did the operations help you? Are you feeling any better these days?

[greygoose in reply to aurora31]

Well, difficult to say if the ops helped at all. I suppose the hysterectomy relieved me of my terrible periods, but I believe it made my hypo worse.

They assured me that removing my gallbladder was necessary because the stones were very small and could have got stuck in my… somewhere or other, but as I didn't have an symptoms, I didn't feel any benefit. That was found by accident, too!

But, the slipped disc op was the worst, because I didn't have a slipped disc, but I was refused any help for the back pain if I didn't have the op. It left me with a stiff spine, and now I can't look over my right shoulder when I'm driving - unfortunate as I live in France!

So, all in all, I think they answer to that question has to be no, and just confirms my statement that I've never seen a doctor that didn't make me worse, rather than better!

[aurora31 in reply to greygoose]

I am so sorry you had to go through this. You are so strong and brave ! I can't believe doctors that treated you did all this. I just wonder if these doctors ever thought they could get sick also one day. Maybe that would make them more responsible. Sending you hugs and blessings 🤗!

[greygoose in reply to aurora31]

Thank you.