Good news - After Endo

[LadyAbash]

Well, what can I say?

I went to my Endo appointment on Thursday armed with research papers, questions and my stand on having my thyroid taken out or ablated.

Quite surprisingly, I saw a different consultant to the previous one I had seen last year, who sent me a letter stating that if I came back, there would be no choice but to have my thyroid out or ablated!

This consultant was very sympathetic to my reasons for not wanting to opt for the two drastic options. As we talked and he answered my questions, he looked through my previous records, checked my thyroid, examined me to see if I had any of the symptoms related to Graves disease. I explained that the only symptom I had was my very fast heart rate and nothing else. He said, I must be a strong person because I didn't display any of the typical Graves symptoms. I had to laugh and agreed with him, that yes, I am a VERY strong person!

He then suggested a third option: - the possibility of staying on a low dose carbimazole for the rest of my life. Before making that decision, he said he is going monitor my T3, T4 and TSH etc. every 6-8 weeks, starting immediately. I had my first blood test before I left the hospital. The next test is already booked for early March. He also advised me to start coming off propanolol in the next week as my heart rate was now back to normal.

I couldn't believe it!

Added to that my GP rang me soon after I got home. She had decided to check my folate, ferritin, B12, full blood count and everything that goes with these tests. I just had to pick up the blood form from my surgery. Luckily, I was able to have my blood taken immediately at the surgery when I picked up the form. The tests are now done and the results are in, but I haven't looked at them yet because I am totally whacked physically and mentally! I was really surprised how quickly I got notified that the results were in.

I have a lot to thank this forum for. If I had not posted my first message, my thyroid would have been ablated by now! I really feel I am getting somewhere now and I'm no longer in a blind panic about what would happen to my mother if I took any of those drastic options.

A MASSIVE thank you for all your advise, research links and information.

I'll look at my test results later before bed. The fight to save my thyroid is not over yet!

LadyA

[Buddy195 Administrator]

Great news LadyA; well done for being an advocate for your own health. You are indeed a strong woman! 👍

[LadyAbash in reply to Buddy195]

Thank you, Buddy195!I have only learned to be my own advocate since joining this forum. Before, I just accepted what the Docs told me. Now I research and question everything!

LadyA

[pennyannie]

Well done M'lady :

Glad you listened and were able to advocate for yourself :

Not sure if I should curtsy or send a hug !

[LadyAbash in reply to pennyannie]

😁 A hug would be lovely! Thank you

[pennyannie]

Very pleased to read this - as if well on the AT drug it's the best, though likely the most expensive treatment option to manage :

We are looking at an AI disease for which there is no cure - an immune system malfunction - which given enough time - on the AT drug - may well right itself.

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

and you are someone of importance and why I didn't reply to you by name which is what I usually do when when writing to someone new to me !!!

[LadyAbash in reply to pennyannie]

Good afternoon, Pennyannie,

Don't know if you read, that my thyroid journey started in 2016. I was on carbimazole for 18 months, then stopped. Had no reoccurrence until I started interferon for my high platelets. So in my view, I would have been ok had I not started interferon. Having posted here, I learn that it was a well known fact that interferon does this to the thyroid, something I didn't know nor was I told by doctors. This was the reason I cancelled the ablation two weeks before it was due to happen.

As I have said, I am forever grateful to all contributers of this forum who pointed me in the right direction including you. Thank you! I know more about my thyroid now than I did at the start.

I am hopeful that the AT drug will help my immune system right itself eventually. Thank you for the links. I'll take time to read them.

Enjoy your day

LadyA 🤗

[pennyannie in reply to LadyAbash]

I did have to look back as I have written many replies - though your being a ' Lady ' immediately registered again - and refreshed my memory and yes this is an amazing safe place where we learn from and support each other.

There are some people on here - who have kept their thyroids and when ' their life stressors ' present themselves simply restart the AT drugs for a period of time to help and support them through ' patches ' of upset.

It's nice to have feedback - take good care and and thank you :

[LadyAbash]

Good morning. Yes, I am in London and removal or ablation seems to be the only options they offer. Since I stood my ground also asking, who will look after my mother if I'm out of action when she is severely disabled and can't do anything for herself apart from talk and eat? After that info, there was no other option.

Personally, I would rather stay on carbimazole as I have had very little side effects from it. I tolerate it very well. Result!

[pennyannie]

Have you been offered the alternative anti thyroid - such as Propylthiouracil - PTU for short.

Very important to keep your core strength vitamins and minerals optimal as these tend to nose dive when metabolism goes haywire -

also very important that your T3 and T4 are maintained at optimal levels for you so you don't fall down the ranges too far and experience the equally disabling, and in my opinion worse systems of hypothyroidism.

Where is ' here ' - there is nothing on your profile page ?

All things Graves Disease - a Stateside website - though Elaine's following is World wide - elaine-moore.com -

[pennyannie]

Ok then :

and yes for some it is an horrendous condition.

[LadyAbash]

Hi Nooneimportant

I am a firm believer in giving things a chance. Interestingly, at the time when I was convinced that radioiodine ablation would be my best option as it was sold to me by the Endo team. I told my haematologist, he simply asked WHY? then went on to ask, why are they trying to fix something that isn't broken? And both from the same hospital. This also made me determined to learn more, hence posting on this forum.

Your experience seems very similar to mine. I believe in the same where my body is concerned. Apart from the two or three drugs I have to take, I still treat my body as my temple. Your opinion is quite valid so don't be afraid to keep sharing it.

I really couldn't believe that everything seemed to have gone my way without too much resistance. Thank goodness! I am going to keep advocating for myself for as long as I can!

Enjoy the rest of your weekend

LadyA

[LadyAbash]

Hey don't worry, share away! We are all learning from each other's situation. I'm glad you are also having your voice heard on here! Check out some of the links they may also help you.

LadyA

[Celticfiddler]

Hello ! I have taken carbimazole( 5mg of late) for the past 4 years and the endo did not want.me.to stay on it indefinitely tho it would seem that on here other people.have had different advice . I know that they have to monitor your liver enzymes ( here just once a year !!) As there is a risk to liver function. Last week I had RFA on a large nodule on my goitre ( radio frequency ablation) and I will update the RFA thread on here. I have yet to have any change to report it is very early days.

[LadyAbash in reply to Celticfiddler]

Hi Celticfiddler,

I've heard about liver function tests. RFA, n the other hand I have never heard of that. Please do post when you are able as this will be very interesting. I am researching it as I type. Thank you!

LadyA

[Calliope62]

Well done for sticking to your guns! I had a similar experience, where I was urged on several occasions to have my thyroid removed and I was adamant that that was not an option. Luckily my consultant was happy to work with me rather than against me. It took a lot of patience, and took a lot longer to resolve, but I have now been in remission for over 5 years. My consultant congratulated me and said that I had 'healed myself'. It can be really hard to stand your ground in the face of standard medical practice. I often questioned myself. However, I am so glad that I followed my own conservative course of treatment. I stayed on a very low dose of carbimazole (2.5mg) for about a year after I had reached optimal levels but eventually I was able to come off completely - and unlike you I had full Graves symptoms, including TED. Now, to look at me, you would never know it.

Having your thyroid removed when you have Graves is not the answer, it is just a quick (cheap) fix which often leads to life-long problems. After all, your thyroid is a victim of your immune system and not the main culprit. This is what I kept in mind throughout my journey.

Stay patient and good luck!

[LadyAbash in reply to Calliope62]

Hi Calliope62

Thank you for sharing your story. With all the responses I have had, I am definitely walking taller. I am so glad I didn't opt for ablation or removal. I think things will settle down eventually since I don't display any of the common Graves symptoms.

Like you say, our thyroids are victims of our immune system and not the culprit, yet those who are supposed to know best treat the thyroid as the villain.

I will definitely stay patient. Have a great evening!

LadyA