S.O.S ... on paper I'm fine?!

[Saz-J]

So.... after months of pushing for a referal I have had 2 appointments with an endo (I already see one for my diabetes so wanted to see a different one for the thyroid issues) and on my second appointment today it wasn't good news...

I was checked for Addisons disease which I haven't got. Iv been told I have hashimotos (without doing a scrape they can't say for definate but my levels are so high theyv said it looks like I have)

They also done every single blood test you can think of to try and figure out what is going on.... I wanted a copy of my bloods but tbh I was so upset with the appointment I just wanted to get from there.

Iv been told that there is no reason what so ever why I feel the way I do every day of my life other than the fact I may be one of these people who have the symptoms regardless of what their levels are doing and how balanced they are...

I'm at my whits end. I honestly feel broken. I told them in my last appointment I can't live like this anymore and I was hoping for answers and all I had today was a plate for of nothingness and lost hope (he said my symptoms are subjective?!)

So I'm reaching out to anyone in the same boat as me... 9 years of levothyroxine and not a single day without the symptoms stopping me from doing something or sending me back to bed... What do people do?! What can I do to try and get my life back seeings as on paper I'm fine?!

😔😣😪😭😧

[humanbean]

he said my symptoms are subjective?!

Translation - he thinks you are mentally ill. Be wary of any doctor telling you you have a functional disorder or a conversion disorder too because they all mean the same thing. Once a doctor gives you a mental health diagnosis from the NHS getting any doctor to take you seriously can become almost impossible so refute this "subjective" diagnosis loudly, and make sure it isn't put on your notes. Note that the medical profession generally doesn't think they need any psychiatric training for this kind of "diagnosis". Anyone can do it, even nurses!

Did you get copies of your blood test results? Without them we have nothing to go on.

[Saz-J in reply to humanbean]

No... I was so upset by everything I just wanted to get out of the room if I'm honest. I'm chasing it up now though so see if I can get a copy. When he said about it being subjective I said I can't accept that. I can not accept that I feel this way every day of my life due to choosing to not feel any other way. I have had mental health problems in the past but they have come from feeling so awful day in day out (amongst other trauma in my life) x

[thyroidorwhat in reply to Saz-J]

You are legally entitled to a copy, they will (have to) give you one.

[Saz-J in reply to thyroidorwhat]

I thought this may be the case. I'm angry at myself for not getting them today but when I got that response from him my head just imploded. Thank you I will get in touch with them x

[Hattie87]

Hi, I'm in a very similar situation to yours. I've been on Levo for around 10 years now and just kind of delt with it. I went to the doctors today as I'm not converting T4 to T3 well and was told that T3 isn't important at all. I literally gave him a long list of all my symptoms and he basically said I had to deal with it and not to bother getting T3 anywhere else as it could be very dangerous. I don't know what to do now either. Sorry I can't be any help but feel free to DM me if you ever want someone else to talk to

[humanbean in reply to Hattie87]

T3 is very important. It is the active thyroid hormone that is required by every cell in the human body. If you don't have enough then you will suffer all sorts of hypothyroid symptoms, even if your Free T4 and TSH are in range (and apparently optimal).

[Hattie87 in reply to humanbean]

I wonder how they can be so uneducated in this? He seemed to think that it's not important at all.

[humanbean in reply to Hattie87]

My cynical response...

I think doctors think like this :

Thyroid problems mostly affect women. Women are believed to be (psychologically) simple creatures , often hysterical and wanting attention just like children, and there is no point in believing much of what they say.

Treating an underactive thyroid with Free T4 will keep many of them alive. But to save money we'll only test TSH because it is a simple and cheap test that gives some idea of how much treatment they need.

The pituitary - which produces TSH - is a perfect gauge of thyroid health and never goes wrong. Or if it does we can ignore it, because it affects so few people, and even fewer of those affected are men. And if men are affected then it's their own bloody fault for developing a female disease.

Pharmaceutical companies have told doctors that T4 is all women need, and if women complain they feel ill that is because they are mentally ill, weak and stupid. Doctors are never wrong, don'tcha know.

On a more serious note, this is worth reading :

drmalcolmkendrick.org/2015/...

[Saz-J in reply to humanbean]

Spot on! 👌👏

I actually said to my mother earlier that people on this site know more than any endo iv ever seen lol! How nice wud it be to be treated by a doctor that suffers the symptoms eh?! I will have a look at your link and a read when I jump into bed. No luck getting results today so will chase tjem up tomox!

Thank you 🙂🙂 x

[Saz-J in reply to humanbean]

Gave it a read... actually got me quite emotional! It is mine and many others current situation in a nut shell. It gave me a bit of comfort knowing that there's people fighting for what's right, but also upset me because I feel it's like fighting a losing battle. Everything that's said is right.. . The amount of times iv been to the doctors about my thyroid symptoms and walked out with an anti depressant prescription is ridiculous... I'm sure at one point they just done the rounds and sent me home with different ones each time (they all went in the bin). I just don't know. I now feel like I shouldn't of told tjem I wanted to try for a baby because that's the excuse they gave for not wanting to give me t3 because it's too dangerous. I wonder what I would of been told if I didn't tell them I wanted a child. So fed up of it all. I wonder if private endo's share similar views to the chap that wrote the blog?! I'm awful worried I pay and end up in the same position in the end. Then Il be feeling just as rubbish day to day, with a much lower bank balance to go alongside it! 😭 x

[humanbean in reply to Hattie87]

A much better explanation of how doctors tick by a man who is one, and who is also the author of the thyroid link I gave :

drmalcolmkendrick.org/2015/...

[Saz-J in reply to Hattie87]

I breath a sigh of relief because some times it's nice to know your not alone! I was told that they wouldn't put me on t3 because I will be trying for a baby in the next year or so. To then be told it's dangerous and alot of work. I'd gladly not try for a baby if it meant I could sort myself out. At this rate I wouldn't dream if it because I wouldn't be any sort of a mother, the amount of time I spend in bed!

He told me there are thousands of patients who are in the same boat as me, but when I asked what they do day to day he couldn't answer me. I'm now requesting to try a different brand of thyroxine because I once read someone changed brand and the symptoms subsided but with my levels being so good I could tell he didn't want to! 😔 x

[Hattie87 in reply to Saz-J]

I was thinking of having a baby in the next year too! In fact, that's how I found out about this! I've alway had a fear of being pregnant and couldn't deal with a miscarriage, so want to reduce the chances as much as possible.

That's what my doctor said too, it's ok for them to say that but their not the ones that have to live with it! Really? That might be something to look into, I didn't even realise there were other brands. What are your levels now? (if you don't mind me asking)

[Saz-J in reply to Hattie87]

All in range apparently. I'm going to chase up getting a copy now and then Il post them 🙂 x

[greygoose in reply to Saz-J]

He told me there are thousands of patients who are in the same boat as me,

He should be ashamed of himself, admitting a thing like that! Because, after all, whose fault is it? Not the patients!

I realise you didn't get a copy of your results today - but don't beat yourself up about it, you had a lot to think about - but when were your last labs before those? Did you get a copy of those? If so, it would be interesting if you posted them here, to give us an idea what's going on. How much levo are you taking?

[Saz-J in reply to greygoose]

Thank you! It really does help! Especially speaking to such helpful individuals 🙂 before these tests I only ever had my tsh level checked and that was it and it was reading at 6.5. I currently take 200mcg nd have done for nearly 2 years now. I was also told today that someone of my weight should only be on around 150mcg (how they work out weight to what you need).

I have rung and left a message but will chase it up tomoz and get a copy sent over. Surely they should be able to email it to me?

I'm a mixture of angry and upset rigjt now. I really thought that this doctor was different but I was told my second appointment would be with the consultant above him. I'm assuming they looked at my results and decided I wasn't worth sending to the higher up consultant. He did seem really helpful but I was disappointed when he said my symptoms are subjective. I already told him once I'm not living at the moment I'm just existing and I'm not prepared to go in like this. Iv lost 4 jobs because when I'm not too exhausted to go to work and do my job properly I'm in bed with a virus 😔 x

[greygoose in reply to Saz-J]

Your TSH was 6.5 on 200 mcg?

Your weight has very little to do with your dose. The mcg per kilo is the way they work out how much hormone thyroidectomy patients should be on to begin with. It's far more complicated than that when you've been on it for a while. However told you that made a mistake.

Of course they're able to email you your results, but whether they will be willing to do it, is another story.

[Saz-J in reply to greygoose]

Yes. On 200 mcg. Underactive thyroid for 9 years and each year its gone up but last 2 years iv been on 200mcg.

I will badger them tomoz. If they refuse Il throw the whole 'my rights' at them! X

[greygoose in reply to Saz-J]

So, how do you take your levo? Do you take it on an empty stomach, leaving at least one hour before eating or drinking, and two hours before taking other supplements or medication?

[Saz-J in reply to greygoose]

I used to. For many years... I gave up because it made no difference what so ever. I do still take it in the morning on an empty stomach and wait to eat but I take my pill at the same time. I over time done everything 'by the book' but when I still felt just as unwell as when I wasn't so ott with everything I figured it was just one less thing to stress about and get disheartened over 🤷 x

[greygoose in reply to Saz-J]

Well, I have to disagree with you. It wasn't that taking levo the right way wasn't working for you, it was more than likely that you weren't converting it or you weren't taking enough. But by starting to take it with your pill, you've ended up taking a huge dose of levo, and still feeling no better. So, the question now is, what would happen if you stopped taking your pill with your levo? You would undoubtedly start to absorb it better, and might even therefore start to feel better. I'm afraid I fail to see the logic in your approach.

[Saz-J in reply to greygoose]

I was off my pill for 8 months last year before i got pregnant (unfortunately I lost the baby) and even when taking the Levo without the pill it made no difference in how I felt. I still felt exactly the same way every day as I do now and have done for the last 9 years x

[greygoose in reply to Saz-J]

Then it's time to get proper testing done and find out what's going on.

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

If your doctor won't do them all, can you get them tested privately?

[Saz-J in reply to greygoose]

As far as I'm aware all these were done (they look like the ones on my blood form). These were the results I was told were all fine. I am going to chase getting a copy of them tomorrow. This was the thing... I had all the tests and the doctor today told me all my results were in range and there is no reason for why I feel the way I feel (My symptoms are subjective) x

[greygoose in reply to Saz-J]

Well, just being in-range is often not good enough. It's where in the range they are that counts. But doctors just can't get their heads round that one - or don't want to!

Yes, you absolutely need to get the results. You need to know. We can never, ever, just take a doctor's word that things are 'fine', I'm afraid.

[Saz-J in reply to greygoose]

You are very right! I lost faith a few years back but I was foolish enough to think this endo was really interested in helping me. Such a daft move on my part. I will chase them up and post the results as soon as I get them. I did say this to him today but his was response was "we will see you again in a few months and keep an eye on you" ... really doesn't cut it! I do love this site though... everyone is so helpful, and I said further up; far more educated than most professionals! 🙂 x

[greygoose in reply to Saz-J]

Well, let's face it, most professionals just aren't educated in thyroid at all. It's our special interest!

[janveron1]

I think you should find an alternative hospital at some distance from where you are known already. If you can afford it get a private appointment with an endocrinologist who specialises in Thyroid and NOT diabetes. Enter into the appointment as if it is your first - leave mention of Diabetes for when the discussion about thyroid is over if you feel it necessary to even mention it!

Good luck. janveron1

[Saz-J in reply to janveron1]

I did do this. It was a nhs hospital further away in the opposite direvtion to where i usually go. Will they not just carry out the same tests i have had done and get the same results?! Are you saying it's basically down to who is interpreting them to get results and answers? (Am I reading into what you said right) I am considering going private although I am concerned I pay all that money and get the same results 😔 the whole thing is making me anxious! 😥😥 x

[Saz-J]

Hey everyone. So sorry for the late update... it's taken me this long just to get my blood results! I had the full works of bloods done however they have only sent this small section of results?! It was a few pages long on the screen in the appointment but it appears that theyv only sent a few results... even after making me wait this long to receive them.

I have added pic of results to original post

Thank you

[Saz-J]

Hello......