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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ATVMWF
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Many thanks for these links, they are gold dust. I will print and keep in my Thyroid file for when I need them....
I checked my latest blood results this new G.P. did run kidney tests. Surprisingly my e-gfr was a good 76, well above the reference range. I strongly suspect that the email notification from my previous surgery was a mistake. Something else I will be taking up elsewhere.
Essential to test vitamin D, folate, ferritin and B12
What vitamin supplements are you taking
Low vitamin levels will also lower TSH
Free T4 (fT4) 14.9 pmol/L (10 - 22)
Ft4 only 40.8% through range
Suggests you need dose INCREASE in levothyroxine
Do you always get same brand levothyroxine at each prescription
Do you normally split your T3
Suggest you look at getting Levo and T3 prescribed privately
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
In response to your second reply. I get my private testing done via Medichecks and am due for another blood draw on 28th May prior to my private appointment online with a doctor (off Thyroid U.K. list) who prescribes me T3, currently Thybon Henning but I have been on Sigma Pharma but switched due to high cost. This change to T.H. was about 5 weeks ago.
I take 1 X 10mg T.H. (tablet cut in half) in the morning along with my T4 and 1x 12.5 Mg Tiromel (25Mg tablet cut in half) which I self source around about 5 p.m.
I take 4000 iu Vit D3 + K2 daily
L-Methyfolate 1000Ug 3 times/week
Vit B12 1000ug once weekly
Seabuckthorn Oil 9600 Mg daily
My FT4 has been steadily dropping from upper quartile since last year and FT3 has also dropped from its peak of 5.8 (3.0-6.2) over the last timeframe. It is something that I was going to raise this time round when I have my online consultation.
I agree it is ludicrous for the G.P. to suggest dropping my Levo with it being only 40% through the range but they (G.Ps and endos) are fixated with TSH. As Thyroid sufferers its a constant battle to convince them isn't it that TSH in regards to prescribing thyroid meds are only one factor in the equation and minimal at that. I suspect that my new G.P. isn't going to take too kindly to my pointing out that their knowledge is somewhat lacking, even if I put it in the nicest possible way and go armed with research papers to prove my point.
It's all so draining, isn't it?
Thank you for all the links. I will add them to my arsenal.😀👍
Okay, when you speak to a GP and they mention the low TSH and say you need to reduce your dose, ask them which one because both your results are within range. Then mention you take T3, that you see a private Endo for that and that they are happy with your results. Hopefully that will get them off your back and let you get on with it.
Also telling them you’re seeing a private endo may get you out of having to go see prof and having to take part in his trial, because you’d need to okay with the private one, who wouldn’t want anyone interfering with their patient. And you’re happy with the private one (so long as you can afford it) and so wouldn’t want to burden the NHS with this aspect of your treatment.
Good points! I'll try as you suggest and see what happens. I don't know these new G.Ps at all so not sure how they will react but hopefully they back off at the mention of a private endo. I probably would have thought to take this tack normally but the Covid has addled my brain and I'm feeling c*ap and can't think straight.
I think this is a good suggestion. It seems that as long as you don’t use the GP’s resources these days (T3 prescription) you are good to go. Shocking but fact.
Quick update. Met with new G.P. earlier today and as expected she mentioned the dreaded low TSH and the need to lower Levo dosage because of all the horrendous things a low TSH will be doing to my poor body. Taking your advice I asked was she sure about that? She looked a bit perplexed and I said my FT4 was only 40% through the range blah, blah and 75Mg was only a starter dose and according to the NHS dosing guidelines etc. I then coolly mentioned about the private endo and the T3. Game, set and match!
She ended conversation and went on about another issue....
Thanks for the game plan! Wish all my thyroid conversations had been this easy.
Taking part in medical research or any health related projects is entirely VOLUNTARY and you are under NO obligation to do so. If the GP or surgery insist on your participation, you can politely tell them that you have not been impressed with this individual in the past, that it is your decision and not their's, and that you will not take part in any research conducted by him. That should be the end of it, as they cannot force you.
I agree with others, that your T4 and T3 especially are far too low and reducing your levothyroxine would be counterproductive; if anything you would need an increase. Your TSH is very low due to you taking T3, but that is normal when supplementing with T3. Could you not change GPs? Sounds like they are bullies and have no compassion for someone in your situation. AND seem to have no clue either.
The appointment went well and new G.P. didn't argue much when I mentioned being only 40% through the range for FT4 and getting T3 from a private source. It remains to be seen whether my next prescription for Levo will be altered in 2 weeks time. I am keeping fingers crossed that it isn't as the conversation was swiftly moved onto other issues by G.P. She seemed to have no stomach for a lengthy discussion on factual thyroid info with a patient who knew more than her. Long may that last.
She didn't even mention the project with the Prof. I'll see if they contact me again via text and politely decline taking part. I do wonder what he is up to though and who he is snaring in his web.......?
Well, I hope it goes well and you start to see an improvement. With GPs I find you just have to be assertive and tell them what's what. And at the end of the day, it is your health and you are the one who has to live with your condition. And if you think that your decision will improve matters, they should at least listen.
I feel better now Covid has loosened its grip and feel more able to fight the medics. The true test will be in 2 weeks time she I try and get my Levo prescription. Hopefully, it won't be a reduced dosage.ATVMWF
If they prescribe you a reduced dosage, I would tell them that this has not been discussed and that you have not agreed to it and that they should reinstate the original dose. Try to speak to that new GP who at least did not argue when you told that you are only 40% through the range. Good luck and I hope things will improve!
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