They are trying it again!

[LadyAbash]

Hi Everyone,

I've been silent for a little while because my mother sadly passed away. I have spent the last month or so in a date. My mother was finally laid to rest on Thursday (24th).

On 10th October, I had a face2face appointment with the Endo department. The consultant I saw offered her sympathy for the loss of my mother. She turned this into something I felt was rather callous.

She said that now I no longer have to look after my mother, I should consider having my thyroid out or radioiodine ablated😳. I told her point blank NO but she insisted o should go away and think about it. This also despite the mix up with blood tests I had done the previous week. We ended the conversation with me leaving to do new blood tests and her telling me that the thyroid is going to keep being a problem so I should consider a more permanent solution!

In all honesty, it really hit me when I got home. Then I got an appointment for sometime next year this was followed by a discharge note a day or so later. I believe that my current problem has been due to them changing my carbimazole dosage which seems to have stablised since being put back on the 5mg dose. I haven't had time to check why I have had two opposing letters. I'll check tomorrow.

My TSH test done on 11th Oct was 2.15 mlU/L

Previous one on 7.8.10 was: 2.74mlU/L

Do I sound angry?😁 Please do comment. Thanks!

Have a restful Sunday

LadyA

[Regenallotment Ambassador]

You don’t sound angry, you sound rational and fed up.

I am so sorry for your loss, are you able to access bereavement support from a charity such as Cruise? They have been amazing with a colleague of mine who didn’t realise she needed the help. Check in with them about what they offer.

I’m reminded of posts where patient consultation and a shared decision for treatment are restated for us all. I certainly think you had a poor experience of this with you endo.

Bereavement and stress can impact our autoimmune conditions so perhaps watch and wait would be part of an approach that could work if you are happy on the current dose? (Personally I feel better when my TSH is closer to 1.0). Do you know what your FT3 and FT4 were on that blood test?

🌱

[LadyAbash in reply to Regenallotment]

Thank you so much for your thoughts!

No FT3 or FT4 were done. I think this may have been due to the error by the phlebotomy department carrying out the wrong tests despite me stating what department the tests were for.

I am a bit fed up! I will not agree to having ablation or having them removed. I am going to check with the Endo department.

I will try one of the bereavement services. Thank you again! Have a great week!

LadyA

[pennyannie]

Hello there again :

Sorry to read of your mothers passing - take heart in the fact that your ' Mum ' is now at peace.

It's difficult to say much from just a TSH reading - all I can say is that it's not suppressed any longer which I take to mean that your immune system is now not in control and likely this phase of ill health coming to an end.

Ideally the AT drug should be dosed to try and get and keep your T3 and T4 about mid range - say around 50%through the range for the T4 with the T3 tracking just behind the T4 - while we wait for your immune system to calm down again.

I think I've sent you the most current research -

maybe send a copy to the endocrinologist - so to back up your thoughts and wishes :-

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

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

Sending hugs :

[LadyAbash in reply to pennyannie]

Hi Pennyannie

Thank you for your comment.

They only did my TSH because the phlebotomy department did the test for haematology instead of endocrinology. I have sent my complaint and I'm awaiting their response.

Physically, I am feeling well with no side effects from carbimazole so I am keen to stay on it. I am just beginning to relax and sleep. I hope that I can relax more.

I may have to do my blood tests privately so I can get the full measure of what my thyroid is doing.

Thank you for the links. They are always interesting bed time reading. Have a lovely day.

LadyA

[bluejeans62]

Hi, I found that stress and upset caused me problems with my thyroid, so it seems a shame that your consultant didn't treat you with a little more sympathy, as she said it's not going to change so why the rush, you need time to allow yourself to mourn your loss.

As it happens I was on Carbimazole for over 10 years, my consultant mentioned we may have to look at alternative treatment but never pushed it. I would take a different dose depending on my blood results. For the last year they were very good and I would only take 5mg every second day, then about 6 months ago, I was told to come off. My last blood test was fine as well. So I no longer take Carbimazole, which tells me it isn't always going to be a problem. What if I did have the op or zapped, that could have meant being under active permanently. Give yourself time to make such a big decision.

[LadyAbash in reply to bluejeans62]

Hi Bluejeans,

Thank you for taking time to respond to my post.

It was very interesting to read that you have been on carbimazole for ten years. The hospital have tried to convince me that people don't stay on it for long!

Don't worry I'm not going to make any decisions quickly. I have been doing my homework ever since I joined this forum. I am so grateful to the many members who respond to my posts as two years ago I had been convinced by my Endo team to have it ablated as they told me this was the best option. I didn't thanks to this forum. The rest as they say is history.

I want to stay on carbimazole as I have tolerated it well so I don't want to change. Last year they increased my dose to 10 mg and it made me hypo. I don't really remember why they increase the dose anyway, I am back on 5 mg which I am happy about.

Let's see what theh come up with. All the best!

LadyA