3 months ago I wrote a post about my daughters results since 2018 & her vitamin levels which are dire. It has taken her this long to manage to get a telephone appointment with a GP next Wednesday. My question is what does she say to convince them to test more than just her TSH. I went through lots of old posts & wrote things down for her & now cant find it. any help grate fully received.
Quick recap No ranges unfortunately.
2018 TSH 6.1
2019 TSH 0.05
2020 TSH 0.13
2021 TSH 0.07 Feb
2021 TSH 5.4 April
2021 TSH 1.1 Aug
2022 TSH 0.48
2023 TSH 4.0
Vitamins B12 290, Ferritin 24, Folate 92, Vit D 39
Im not sure how she can convince the GP to retest all of these & her T3 & T4. What should she say?
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Otto11
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Hi, My GP regularly requests the labs at my local NHS hospital but they refuse to do it.They will only test TSH.As I have no functioning Thyroid ( Radioctive Iodine treatment)my GP referred me to an NHS Endocrinologist who is great, and if HE requests a full thyroid can they must do it.I had been feeling rough for a while so my GP contacted my Endo who saw me and authorised a full screen which picked up my T4 was too high, so he adjusted my medication.This could have been avoided if some ignorant Lab technician hadn't refused to allow a full thyroid screen, I live in Scotland, so it might be different for you.IMO it is a disgrace that NHS labs here always refuse a GP 's request to do a full Thyroid screen, so as usual the patient suffers. Maybe you should push for a referral to Endocrinology, but be prepared to push very very hard! There is an excellent and helpful website I also use( called Thyroid Patients Advocacy If I remember,) but if you google that the site should come up.
Thanks. I have only half a thyroid after surgery 30 years ago. I’ve struggled greatly for past 7 years but did eventually get a referral to Endocrinologist 2 years ago & now on T3 as well. The hospital have been doing TSH T4 & T3 whilst I’m under them but GP doesn’t unfortunately.
My daughter’s symptoms started as a teenager. She has been on Thyroxine for 25 years ( I should have put that in the post). She takes 75mcgs 3 days & 100mcg 4 days. Her results are all over the place. I doubt she will get a referral considering they havnt even bothered doing a T3 or T4 or tested her vitamins again. It really is a nightmare. I had exactly the same problems with my GP who said TSH of 4 was good as within range. This was relayed by reception. I told them to tell the GP to go back to med school. It didn’t get me anywhere.
I had this very problem, no thyroid full thyroidectomy, my gp requested full thyroid panel but lab refused, I was on T3 at that time and explained to the gp T3 must be done along with TSH T4 is not relevant as it's always low when taking T3.
On the next blood test I asked my gp to write in bold type... PLEASE DO T3 AND TSH AS THIS PATIENT IS ON T3 ONLY!
this actually did the trick, but as we know we very rarely get to see the same gp, so when going in to have blood taken its just tick boxing the nurse does, and the gp only puts the normal request in.. Ticking those boxes, so inevitably no T3, T4 gets done even if they tick those boxes, gps must write in "please do full thyroid panel and explain why" 🤦
Thanks. I've been in the same boat but luckily now being treated with T3 & things are improving. I have all this information thank you so much for sharing again I will pass it on to her.
What I'm asking is what should she say to the GP to make them do blood tests? All they have done before is TSH & say all her levels are fine. It's not possible to force them to do a blood test or even listen to you so I don't know how to advise her as she isn't very assertive especially as this is all new to her. She didn't tell me she was having all these issues. I've advised her regarding all the vitamin issues & bought her a B12 spray. Its how to persuade the GP that her TSH shouldn't be up & down like this when they say its fine.
Unfortunately I can’t be with her & she is actually giving a full training day & the phone appointment can be anywhere between 8.45 & 12.45 but it’s all they could offer her so she after deliberation decided she had no choice but to accept. She will have to tell everyone to have a 10 min toilet break or something 🤷🏻♀️ Ridiculous situation.
She will need to get FULL Thyroid including thyroid antibodies and vitamin levels privately via Medichecks or BH ……if GP won’t
Presumably she has autoimmune thyroid
Come back with results on new post for advice on next steps
take results to consultation with endocrinologist
Waste of time initially trying to get NHS referral
A) waiting time is over a year
B) if TSH within range referral will be refused
C) average local endocrinologist will be diabetic specialist and useless for thyroid
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
Thanks for all this. Maybe she could see my Endocrinologist but its out of her area so I doubt it. TBH the one who prescribed my T3 isn't fully qualified yet. she lives in Leeds which should have plenty of scope for Endocrinologists being a large city.
They were done in 2022. She is only getting a phone appointment as her bloods are due for TSH. She has been using Better health B12 Spray & Vit D Spray. TBH I doubt she has done much more. She is incredibly busy at work often not getting home till 9pm so has no energy left to cook. Then there's the dog walks. she comes bottom of the list. I've sent her lots of information so hopefully she can go through it & try to help herself more.
Tell her that 99% of GP's treat thyroid conditions the wrong way and should leave it to the Endos ( that was said to me by my Endo, when I first saw him. As he read my notes he was clearly very angry that I had been suffering for 40+ years with useless GP's mucking about with my Levo!)That man sorted it all out, put me onto t3 and God bless him, he gave me my life back within 4 months.
She needs to get referred urgently to an NHS Endo. and NOT tale NO for an answer. GP's are not capable of dealing with thyroid issues, she needs the expertise of an NHS Endocrinology Consultant. I hope she gets the right treatment soon,
I'm glad you got sorted out eventually. I was also a long time undermedicated about 15 years we think. I don't think anyone took into account I only have half a Thyroid. I have now got T3 although currently still on a trial. I do hope she gets somewhere with this GP & get help. Thanks
I put in a complain to my GP practice just this past Thursday and got a phone call on Friday. I had sent in my situation, low dose levo symptoms never resolving along with the NICE guidelines. I said why is this the suggested route but the GP isn't even allowed to order the tests when appropriate.
The business matter looked into it. She said she asked a doctor and was walked through it on the system. The system attached to the lab to make the test request actually greys out the box for t4 (no mention of t3) if the information in the tsh box is in normal range. So its not even possible to make the request before it's rejected.
The business manager has given me to information I need to complain to the actual lab, will do that after I get mt private test results as they may be evidence.
Yes its all a nightmare. I doubt weather it would make a difference complaining at our surgery as they cover their tracks. After I saw an Endocrinologist he said I had been undermedicated for years (which I knew). Once the GP received the letter he wrote on my notes that I had said I had preferred my TSH to be over 2! I had actually never in 30 years had my TSH under 1. Of course not true but he is covered now!!
I know it does. I don't think she realised the importance of all the vitamins & why would she. Like me she just thought she took thyroxine at the prescribed dose & all was OK. It wasnt until I realised that I had thyroid issues & with the help of this group have managed to get an Endocrinologist & T3 that she started to understand a bit more. I've asked her to tell the GP this needs sorting immediately so fingers crossed. Thanks.
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