Endo appointment HELP please

[ter1461]

I’ve neen self treating myself with T3 only as Im hypothyroid but now hit a brick wall and want to be officially diagnosed and on my medical record as at a loss with feeling unwell.

I managed to get referral with Endo but lied a little to my GP to get it by not telling her I was self medicating. So now I’m really worried about my appointment with the Endo as to what he will say and do or even if he’ll help me. Anyone else been in my situation and what happened? Did you get treated once you came clean and in what meds? I know they will not treat me with T3 and more than likely Levibut I’ll try anything do long as I’m recognised and receive treatment as at a loss now doing it myself.

Will they even help me at all ?

Any advice would be helpful thanks.

[Nanaedake]

If it were me, I would go to the GP I respected and own up. You could explain that you self-treated in desperation to feel well again. I'm sure they have experienced this before from many patients and you won't be the first or last. You might lose your Endo apt but isn't it more important to get better?

Make a list of your symptoms before self treating and symptoms now and ask for their help to sort out your health. Explain the impact it's had on your life and work. There could be many reasons why you feel unwell. If you have not had full blood tests how would you know what they might be?

What were your thyroid blood test results before you began to self treat and have you got thyroid antibodies?

[ter1461 in reply to Nanaedake]

I was diagnosed b12 deficient firstly then discovered Hashimotos on back of that. Before starting medicating my tsh was 2.8 but previously had raised to almost 6 and frees were at bottom of range, TPO 106.

Before I started treating I was depressed, mood swings, hair dropping, acne, feeling malaise.

Problem Im worried about is what would they do, ask me to come off meds completely? Would they tell me to stop medication and put me on another or just to stop altogether? I’m worried they would and I’d get ill. Can the strike me off?

I’ve a feeling my GP will only refer me to Endo anyway as she wouldn’t know what to do. Help

[Nanaedake in reply to ter1461]

They can't strike you off for trying to help yourself. You can point out that people take illegal drugs and get addicted to alcohol and the NHS still helps them. You are simply trying to stay well. You didn't have much choice since the NHS did not help.

Get a print out of your blood test results that showed variation in your TSH levels and a copy of your thyroid antibodies results. Make a list of your symptoms before hand and then explain how much better you feel since taking thyroid hormone.

If you decide to go to the Endo apt then go armed with all the information and explain that you didn't get help from your GP so you did the best you could to help yourself. You could explain that you needed to hold down your job or support your family or whatever responsibilities you have that you were unable to attend to when untreated.

The Endo may wish you to switch to levothyroxine and it's unlikely you'll get T3 prescribed. You'll probably have to be prepared to cooperate if you wish NHS to diagnose and treat you. The Endo cannot remove what you have self administered but find out what your T3 equates to in levothyroxine micrograms so that if he/she wishes you to switch to levo you can ensure it is an equivalent dose.

It would be unwise for the Endo to tell you to stop taking any thyroid hormone as any change in dose should be very gradual or you will feel unwell.

[ter1461 in reply to Nanaedake]

Thanks for the advice. So should I just go to the Endo appt and just come straight with it all rather than going back to my GP you think? Feeling she’s still going to refer me anyway.

My concern is I also have all lows on my cirtisol results , could there be pituitary problem. I do need to see an endo now.

[Nanaedake in reply to ter1461]

I think you'll have to decide as you know the GP and what she's like. If you feel she is cooperative and understanding then 'fess' up since the referral has been made anyway. You'll probably feel better and get more out of the Endo apt. if you're not worried. Sounds like you have various things going on and it's not straight forward. I hope you get your health sorted out as no doubt you still feel quite unwell. Endo might want to rule out adrenal insufficiency since taking thyroid hormone is not a good idea until this is corrected so you definitely need to see the Endo sooner rather than later.

[ter1461 in reply to Nanaedake]

Thanks for your help and words. I’m sure I’m more concerned due to the way I’m feeling than I should be about owning up to self treating. Like you say drug addicts get help from NHS. Why shouldn’t I as I’m only trying to help myself

[Nanaedake in reply to ter1461]

Exactly, but we're not medically trained so we need the help of the professionals to make sure we don't miss an important factor or diagnosis. Just confidently ask for help to sort it out and be prepared to work together with the Endo. If you don't agree with his/her approach you can ask for a second opinion but I would go open minded.

[ter1461 in reply to Nanaedake]

Totally agree with all youve said and thanks. I have a plan now 🙂

[silverfox7]

You need to be honest as the Endo will see from your blood tests so better to be caught out by being honest than by trying to cover it up. Blood tests look very different when taking T3 and are read differently so best to be upfront and sayvyou need a full test which your GP snd/or the labs are unlikely to do. Then you will get the right tests done and so advice to keep you well. Ok he may well want you to try Levo again o satisfy himself as to whether that's better for you are not but it's better than being found out telling lies however good your intentions were.

[Arkenstone]

Oh dear! T3 is one medication you must never use to self treat ( in my opinion). But I understand desperation. I have heard that if you come off T3 for seven days to 10 days it will clear from the system. All the best with your Endo appointment.

[thyroidquest]

I would get full private bloods done before your appointment, showing how you're doing on T3. Then, when the endo switches you to T4, you can get another set done and see how your body fares with one med versus the other. If you're worried about the endo's reaction to you self medicating maybe you could come off meds for a while before the appointment. However I don't know how long they would take to clear your body and how ill that would make you - so you would need the advice of more experienced forum members. Good luck.

[ter1461]

Someone has said to me the endo May want me to come off all meds to see how my thyroid is working. Could that happen as I’m worried that I’ll get really sick if so as my numbers are bad as it is already ?