Anxious about meeting new consultant tomorrow...

[anjuliet]

I had Graves disease when I was 22, had RAI I-131 treatment a year later, and started on levothyroxine 17 years ago. I was finally referred to the hospital near the end of 2014 after 15 years as I felt like I was dying and it would take me nearly an hour to just get out of bed.

I managed to see a GP registrar (who refused point-blank about any talk of trying T3), another consultant (who placed me on T3 trial - I will call him Dr. L), the head consultant whom I saw twice in a row, but was seen by another consultant on my last appointment last year August. My husband was with me at the time, and I was so unhappy with this consultant as she did not give me any chance to talk about either my blood test results or the symptoms that I was (stiil am) experiencing. She told me that, "any symptoms you are having does not have to do anything with your thyroid." She had this 'I am the doctor, you do not know anything' attitude, and the whole experience left me shocked and even more confused. My husband was livid and we went to the patient liaison officer (with some reluctance on my part) and lodged a complaint.

Unfortunately, I was not able to meet with the head consultant to talk about what happened as he was (and I think still is) off work, and the consultant Dr.L, who prescribed me T3, asked me if I wanted to be referred to a consultant at another hospital. I agreed, and I received the appointment letter from the other hospital last year December.

Fast forward to my GP appointment early last month, and she printed out a copy of the referral letter that Dr. L had written to the consultant that I will be seeing tomorrow. He had written that I was not happy to be looked after at the previous hospital, and he even denied seeing me. I explained to my GP what had happened last August, and I saw that she was shocked as well about it. My GP told me that I should really write down what I want to say to this new consultant, but I do not want to start off at the wrong foot.

I make sure, that before going to any appointments, I have a list of all the medicines and supplements that I am currently taking and I will be bringing my copies of my blood tests done last September and November. I am no doctor nor do I claim to know what is going on, but I sensed that some doctors do not like that a patient is aware of their health condition.

I have tried (in vain) to ask to be tested for thyroid antibodies, with the head consultant telling me during one visit that because I had RAI, I wouldn't have any left, and then on the next visit, he said that I have antibodies because my thyroid eye disease was beginning to become even more prominent again. A GP tested me for TBII (TRAB) back in 2015 and I found out later that it was a test to help diagnose Graves disease (?)

I have rambled on for too long. Thank you for taking the time to read my post. I do not know where else to turn to and this anxiety has been doing my head in.

Any advice will be greatly appreciated.

[Clutter]

Anjuliet,

Graves antibodies don't go away when there is no longer a target thyroid and they may attack other organs, usually the eyes. Thyroid eye disease (TED) may be managed if TSH is suppressed <0.1.

Thyroid peroxidase and thyroglobulin antibodies usually disappear when there is no target thyroid. It makes no difference to your treatment whether antibodies or positive or negative but if you want to know you can order Blue Horizon's Thyroid Plus 6 which includes antibodies. thyroiduk.org.uk/tuk/testin...

You could make a bullet point list of your most troubling symptoms to show the endo or use the TUK symptom checker thyroiduk.org.uk/tuk/about_...

I hope the consultation goes well tomorrow.

[anjuliet in reply to Clutter]

Hi Clutter,

Thank you so much for the information that you have provided here, and also for the links on where to order the blood tests and also the symptom checker.

I was tested two months ago for

FT4 10.0 pmol/L [7.5 - 21.1]

TSH 0.07 miu/L [0.34 - 5.6]

FT3 3.60 pmol/L [3.1 - 6.8]

Ferritin 57 ng/mL [10.0 - 180.0]

I am on alternate 100/75mcg levo and 20 mcg T3, but I had to halve the T3 dosage as my blood pressure and pulse were off the roof and had to have that 24-hour bp monitor check.

My GP lowered my levo dosage as she is trying to get my TSH levels up as she said if it's too low then there is a higher risk for osteoporosis...(?)

Thank you, I am hoping to have a good outcome from the appointment tomorrow.

[Clutter in reply to anjuliet]

Anjuliet,

I think you were under medicated 2 months ago because FT3 was low and you will be grossly under medicated since dose was halved. There's no evidence that suppressed TSH causes osteoporosis.

[anjuliet in reply to Clutter]

I am hopeful with this consultant as I have been told that he does not go with TSH levels alone.

Thank you for clarifying that bit of information. Really grateful for all your help.

[anjuliet]

Update on yesterday's appointment: Had severe travel sickness as soon as we arrived at the hospital, that I was in a daze most of the appointment. Since it was an initial appointment, the consultant asked me regarding what the other consultant wrote on my referral letter and that it was the same consultant who prescribed me T3, so what he said that he had never seen me was untrue. I also mentioned about what happened during my last appointment with that horrible consultant. I handed him the list of medicines and supplements that I currently take and the list of symptoms that I am still experiencing, and got reminded about how to keep taking the original dose of T3 so it'd be more consistent. My husband told me later on that the consultant also said, in passing, that there was no evidence that T3 really helps patients, but that it seems that it is helping me. I asked about having iron through intravenous since even the ferrous fumarate kept giving me tummy trouble, and he said that he'd write to my GP (since she suggested that I ask the consultant about it), adding that dealing with low iron wasn't his area of work and that I would have to ask haematology about it...?

I didn't get to ask him about anything else as he filled out a blood test request form and accompanied me to phlebotomy and left me there. The appointment lasted roughly less than five minutes. Also, to my horror, the GP Registrar whom I first had an appointment with, she was also there, but now as a consultant.

It was only after we got home a couple of hours later that I remembered that I didn't think I should've had the blood tests because it was past the allowed time to have it done. I have been told by my previous consultant (and by advice through other forums) that I shouldn't have any thyroid blood tests done after 9 am, so I had always scheduled my blood tests around 8.30 am... I also do not take my thyroid meds at least 24 hours before my blood tests, and I took my second lot of T3 two hours before. Would the results be affected?