Actually got an endo appointment - any thoughts on Lincoln UK endo team & any suggestions as to how appt may go

[Wispymisty]

Hi - so as a follow up to my previous posts when I have had variable thyroid results and then MRI showed Empty Sella (basically squashed pituitary) I've had an awful few weeks - as follows :

I'm 49, and over the past 4-5 years have had near normal menstrual cycle (26-28 days with a 5-7 day bleed. Not so my last one I didn't start to bleed until day 35, and then it just continued for 32 days. After the first 16 days I had 1 day with no loss but then started spotting every day until day 25 when it became very heavy (I was losing possibly 180-200 mls first 3 days) then it settled down to a usual menstrual flow finally ending on the 32nd day. Obviously I spoke to the GP surgery during this time and had some bloods done, and was referred for a non-urgent a do scan. I also self treated with iron. The GPS did some blood tests that showed borderline anaemia, but when the flow became heavy they repeated them adding TSH at my request and due to the MRI results I said I was very concerned about my hormones as a whole and the GP agreed to the endo referral - the appt has just arrived for 8th August, and my a do scan is 17th July.

I'm pleased to have the appointment as I want to discuss the Empty Sella and possible Hashimoto's but as none of the blood tests done by the GP show everything needed all at the same time I am unsure how to proceed. Do I ask the GP for more thorough bloods before my appt, order private tests or just show up for the appt and see how it goes, although I expect with my current results I'll just be dismissed as a hypochondriac or something.

My bloods are as follows :

TSH levels have historically been around 1.4-1.8 but in November it jumped to 4.2 (range 0.27-4.5) My GP agreed to retest in Feb and add T3 and T4. The results were TSH 1.8 (range 0.27-4.5), T4 12.7 (range 11.0-23.0)and Serum free triiodothyronine (is that the T3?) was 4.52 (range 3.1-6.8).

Recent bloods

Serum TSH 1.3 (range 0.27 - 4.5) and Serum Thyroid Peroxidase Antibody 6 kU/L (range <34) but this time they didn't do T3, T4 or the other antibody.

My oestrogen levels fall within a normal range although inconclusive really as no way to truly know where abouts in my cycle I was when they were taken. I know thst it's probably menopause related but it seems a very extreme initiation given that my cycle had been so good up to this point.

Realistically I'd like a full pituitary screen before I go to include proper thyroid levels alongside cortisol and so on but I can't afford the tests especially if they will be ignored and then repeated by the NHS. I could probably stretch to one set or the other if you all suggested it was really necessary though.

So really after all that waffle I guess I'm just after advice about how to approach the upcoming appt, and if anyone has any direct experience of the Lincoln team I'd be grateful.

Thanks for reading (if you stuck it out to the end!)

WispyMisty

(current diagnosis Fibromyalgia and Pernicious Anaemia with Fatigue and Depression)

[Wispymisty]

Any thoughts please? Thanks in advance

[NWA6]

Hey Wispymisty. Sorry I can’t help but hope someone will have some advise going forward. The only thing I can think is that you should always have FT4/3 tests done in order to form a history that your pituitary is not functioning properly. Getting a GP or endo to even think about this is going to be hard. All they see is a low TSH and assume everything is fine. Although a low TSH would ofcourse be normal in a pituitary that’s faulty.

Good luck. I hope someone has some wisdom on your condition 🤗

[Wispymisty in reply to NWA6]

Thanks Paula - I think I'm going to have to organise my own tests and just hope that it doesn't earn me the hypochondriac label!

[NWA6 in reply to Wispymisty]

Ah hell we’ve all got that label! 😂 Wear it with pride it’s the only way we’re going to make ourselves well 🤗

[Wispymisty in reply to NWA6]

True!! 😜👌