I don't normally post anything...

[EmzskiR]

Hi everyone. I don't normally post anything so I don't know what I can post on here. I'm 22, it seems I have been suffering with hypothyroidism for years but it's not been picked up on. They've disganosed me a few months ago and put me on 50 mcg. I can't see the same GP so it's hard to get one that will listen. Last time I had an appointment, I got 2 minutes with the doctor and wasn't given a chance to express how hopeless, tired and sick of life I feel. I can't find joy in anything and I'm getting desperate for help now. I hurt constantly, I just want to sleep all day and night as when I'm awake, the paranoia and anxiety is just far too much to take. I get period pains when I haven't got one and I can't stand up when it happens. I just feel like my life is already over and am struggling to see the point of carrying on or even how to keep living. I am so distressed. I just needed to tell somebody how I feel.

[lc1973]

Hi EmmaRhianne

Welcome to the forum. Sorry you are feeling so rubbish at the moment. Usually the 50mcg of levo that you are taking is a starting dose. I presume you have not had an increase since starting on this dose? It would help members to help you if you could get your most recent thyroid results and post a new question. You will need the result for TSH, FT4 and FT3 if tested and the reference range after it e.g. TSH 2.5 Range 0.5 - 3.5 etc, please note this is only an example, this is not where you need to be! I suspect you most likely need to have your medication increased but what tends to happen is that if you fall within the normal reference range then you do not get your medication increased unless you tell your doctor that you still have low thyroid symptoms, doctors are very guided by blood test results and not by how the patient feels sadly. Low vitamins can also make you feel very poorly, Vitamin D, B12, Folate and Ferritin so if you have results for these it would be helpful too, if not perhaps next time you get a blood test you can ask for these to be tested as well?

[EmzskiR in reply to lc1973]

Thank you so much for your reply. My starting dose was 25 mcg and they have been extremely slow at changing my medication and adjusting it. It takes so long to get anything done. I have been taking supplements too as I've been alerted that I'm low on pretty much everything. So far no change but I will persist. I will try to get the results from my GP as I've just had another blood test done and see what the levels are. They don't normally let me see my results but I'm seeing my "family doctor" if you like this time and he's supposed to be really good and kind. My appointment is next Monday.

[lc1973 in reply to EmzskiR]

Unfortunately i had to persist with my doctors as i was always told its all okay and yet i still had and still have symptoms. It was only when i found this amazing forum that i realised things were far from optimal. You are entitled to your results and if you ask for a print out they should be able to do this, or jot down the results and the reference ranges and re-post for advice. It sounds like you know what to do but you are probably really frustrated that you dont feel any better. If it helps write down your symptoms and hand it to the doctor.

[EmzskiR in reply to lc1973]

Thank you so much, yes that is a great idea to write down symptoms to tell them about.

[SmallBlueThing in reply to EmzskiR]

If by extremely slow you mean two months between tests and an increase, please understand that that is normal, and you can't rush things. Best wishes!

[EmzskiR in reply to SmallBlueThing]

Thank you. It has been about 3 months or more between increases and tests. It's so crowded where I live that getting an appointment is so difficult. But what you have said here gives me hope thank you.

[shaws Administrator in reply to EmzskiR]

Make your appointments well in advance and when first diagnosed you should have a test at six weeks.

We have to be proactive if we want to get better so make your blood tests every six weeks (8 at most) and you want your TSH to be around 1. (anywhere in the range isn't good but doctors fail to understand that the tests are mainly for diagnoses and not to keep us at the top of the range but the bottom).

[Treepie in reply to EmzskiR]

You are legally entitled to your results so always get them and do not be fobbed off They may make a small charge for a print out.

[greygoose]

Hi Emma, welcome to the forum. I'm so sorry you're suffering so badly.

Did they give you anything to take when they diagnosed you? Normally we're prescribed 50 mcg of levothyroxine. Is that what happened?

[EmzskiR in reply to greygoose]

Hi greygoose, they gave me 25 mcg when I was first disagnosed which was about maybe a year ago? I've been on 50 mcg for a few months now. Sorry timings are rough, I'm not so with-it at the moment and don't have access to my diary at the moment.

[greygoose in reply to EmzskiR]

No, that's ok, I understand.

But, what your doctors don't understand is that you shouldn't be left on low doses for months - 6 weeks tops! Then, you go back for a test and get another increase. And, that process should continue until all your symptoms are gone.

Your doctors are being negligent. They should have started you on 50 mcg, not 25. So, it's not surprising you feel so bad.

So, go back as soon as you can and get another test. Ask for a print out of the results - it's your legal right to have one - and then post them on here, with the ranges. Then we'll be able to see what's going on.

[EmzskiR in reply to greygoose]

Thank you, this has encouraged me to really push forward and not be afraid of them.

[greygoose in reply to EmzskiR]

No! You mustn't be afraid of them! You pay their wages - indirectly - and they are there to look after you. Tell them what you want. They don't know enough to give it to you, otherwise. Push for all you're worth! It's your life, and it's worth fighting for! And we're all here to back you up!

[Clutter]

Welcome to the forum, EmmaRhianne.

First thing to do is to check you are optimally medicated. Ask your GP receptionist for a printout of your recent thyroid results and ranges (figures in brackets after results) and for results of ferritin, vitamin D, B12 and folate if they've been tested. Post the results in a new question and members will interpret results and advise.

[EmzskiR in reply to Clutter]

Thank you so much for your reply. I should be able to this by next Monday as that is when I can get there and will also be seeing my doctor that day. Hopefully he will listen, so far the others haven't.

[Clutter in reply to EmzskiR]

EmmaRhianne,

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[EmzskiR in reply to Clutter]

Thank you for this information, anything I can learn is really helpful to me (I know that sounds obvious but I'm just so grateful).

[shaws Administrator]

Welcome to our forum, and I'm glad you've joined because I understand how you feel - all of us on this forum in fact.

Your dose of 50mcg is too low which can also give us more symptoms than before. I am going to give you two links. You can also write a note to your GP saying due to feeling so unwell you've taken advice from the NHS Choices forum for information about the thyroid gland and now understand the aim of levothyroxine is to get your TSH to around 1 with the Free T4 and Free T3 towards the upper part of the range.

thyroiduk.org.uk/tuk/testin...

Ask for a new blood test and this is the procedure from now on:-

The test should be the earliest possible and fasting - you can drink water. Allow 24 hours from your last dose of levo and the test and take it afterwards. This keeps the TSH at its highest as it drops throughout the day.

Ask your doctor for a Full Thyroid Function Test, i.e. TSH, T4, T3, Free T3, Free T4 and thyroid antibodies. Also for B12, Vit D, iron, ferritin and folate as we can be deficient.

thyroiduk.org.uk/tuk/about_...

Tick off your symptoms on the above list and also add them for your GP (he probably wont take notice as they don't specialise in hypo and believe just to look at the blood test results and ignore patients' symptoms is how it's done. We want our health back, so we have to Do It Ourselves it would seem