**WARNING – LONG READ**
Current situation
I had to register with a new G.P. surgery in late January (reasons below). This surgery operates on the phone in at 8 a.m. for an appointment system and offers no bookable appointments. Because of the issues outlined in the background below I have yet to meet and discuss my Thyroid journey with any of my new G.Ps but because I have had some blood tests recently it has flagged up my TSH is out of range. No surprise, I knew it would be as I source T3 from a private doctor on Thyroid U.K. list. I had agreed to disagree with my last surgery over the use of T3 after a referral to a local endo (notorious Prof who shares his surname with an ex- West Ham and Newcastle footballer) culminated in said Prof sending me a letter that dismissed the DIO2 as a ’myth’ and said if it existed and I had that I would be a ‘cretin’ and that my G.P. should discontinue prescribing T4 altogether for a period of 8 weeks ‘…to see how I get on…’ Many of you will remember the letter and commented on it. I distinctly recall Diogenes was not impressed by it. I refused the change and my old G.P. agreed and so it remained until this year but…new surgery is now suggesting they drop my already low dose of Levo from 75Mg to 50MG (I weigh 72Kg) and are requesting (more like insisting) me to take part in a project run by the Prof above (groan!). Obviously, I don’t want to take part, nor do I want my Levo to be dropped as you can see from the blood results I am in no danger of being overmedicated.
NOTE: I suspected they would do Thyroid bloods so had not taken T4 that day and not taken my T3 the previous evening so the T3 will be lower than usual.
Ranges
FT3- 3.8 (3.1-6.8) – previous private test in Dec was 4.9
FT4 – 14.9 (10.0- 22.0)- previous private test in Dec was 15.8
TSH – 0.01 (0.3-4.5) – same as previous test
What is flagged up is a low Lymphocyte count 0.62 10*9/L (2.0-7.5). Likely due to Sjogrens.
Question for all the warriors on this forum. How do I convince new G.P. to keep me on my dose of 75Mg daily and not freak out when I tell them I am getting T3?
A secondary question may be what is the Prof up to, anybody heard?
Read on if you want full background to the above, if not stop here. Apologies, it’s a long read.
I have several AI conditions and co-morbidities. One of which landed me in hospital as an emergency case in Oct whilst in Cyprus. My bowel very nearly perforated due to an acute episode of Diverticulitis. I was on an I.V. for 4 days and discharged with 10 days of a very strong antibiotic and instructions to report to my G.P. asap. I had been going back and forth to my G.P. for several months prior to this happening but they didn’t pick up the warning signs. This resulted in a colonscopy and CT scan in Dec and various other tests. Whilst awaiting the results and further treatment for other issues that were found my surgery deregistered me- yep! That’s right!!! Apparently, I was out of their catchment area. A fact that had escaped their notice for 24 years of the 30 years I had been on their books, very strange…Despite 6 attempts to speak with the practice manager and senior doctors no one returned my calls, or emails. Complaint to ICB still outstanding which is yet to be acknowledged. Next stop PHSO but that is another story.
My next long planned trip for hubbys birthday was looming and with no G.P. I had to find one and quick. No mean feat, it took me 3 attempts to find a surgery to take me as always out of catchment area. We live in a dead zone for health services it seems. I found a one the day before we travelled and registered. Usually, I would do a bit more due diligence on them but didn’t have time. This has come back to bite me.
Whilst away on this trip both hubby and I picked up a serious case of gastroenteritis, it was raging on the island we were visiting. We needed to see a doctor and I was admitted into hospital again but only for 36 hours this time. Prescribed another course of strong antibiotics. This was only a few days before our scheduled return to the U.K. and it was touch and go whether I would be allowed to travel. I was told to see my G.P. as soon as I returned. The day before I travelled back to the U.K. I received an email from my old G.P. with the results of some tests that had come through. Imagine my astonishment when the first line stated that I had ‘kidney failure’ and that it was diagnosed in Dec 2020. Firstly, I had never been told that and secondly, I had never received any treatment for it. It was a bolt out of the blue…
Contacting my new G.P. surgery to get further treatment and ask about the devastating news about my kidney failure and what help I could get etc, I found out that they were changing computer systems (from EMIS to SYstemONE) and couldn’t access my notes. It was utter confusion but suffice to say that coupled with their archaic patient phoning in system this has resulted in me hardly getting any treatment for said issues and all those previously identified in December, which are still outstanding. Feeling pretty dreadful and threatening to go to A & E if I couldn’t get an appointment) I did manage to get an appointment this Tuesday when all the blood tests were taken (discussion above). Doctor I saw was concerned about many of the things I discussed (recurrent migraines, severe abdominal pain, bleeding and nightsweats), he was nonplussed by the kidney failure diagnosis and arranged for tests and x-rays.
That night feeling even more terrible I tested positive for Covid.
The wedding we were supposed to be attending today goes ahead without us so feeling pretty down in the dumps. Sorry for the long post-just needed to offload.
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