Endo NHS wait

[TrainWreck59]

Just wanted to update...I had my second ultrasound yesterday with a view to doing a FNA for my nodules. However, they didn't even bother doing the FNA in the end, as they were confident that there were no cancerous concerns, which was great news. They pretty much agreed I have Hashimoto's.

They are going to refer me to endocrinology, as my TPO antibody test was so high, and owing to all my symptoms. I'm guessing I may have rather a long wait for my initial appointment. What are other people's experiences of wait times (NHS) please for endo? Meanwhile, I feel like I've been left in limbo a bit, very symptomatic and not been offered levo or anything. GP completely disinterested.

I will get the private blood testing done after Xmas. Is there anything else I could/should be doing whilst I wait for my appointment? I've already cut out gluten, and don't consume dairy anyway. Trying to cut back on sugar and soya, too.

I realise this is just the beginning of my journey, and that I have many likely battles ahead, as have many of you experienced already. I appreciate everyone's input this far. Thank you.

[pennyannie]

Hey there again :

You might like to start reading up on the research and suggestions of Dr Izabella Wentz who has Hashimoto's and writes as thyroidpharmacist.com

Thyroid UK the charity who supports this patient to patient forum also has a website full of all things ' thyroid ' and related subjects and information - thyroiduk.org

and reading this forum is an education in itself - !!

[TrainWreck59 in reply to pennyannie]

Thank you, it's now on my ever-growing list!

[Obsdian]

Wait time in my area is 42 weeks.

[TrainWreck59 in reply to Obsdian]

😯

[Obsdian in reply to TrainWreck59]

Yes, rather discouraging. My second go at a referral too.... No rejection letter so far. Even my GP suggested private and googled one nearby. Still considering.

[TrainWreck59 in reply to Obsdian]

Ridiculous! What happened the the legal right of 18 weeks NHS rule?? If you don't mind me asking, roughly what part of the country are you? Wondering if it'll be the same where I am 😞

[Obsdian in reply to TrainWreck59]

I have no idea what happened to that. When I needed a cardiologist I was told up to 9 months wait, paid privately and saw one in three weeks.

I am in West Sussex.

Your GP should have access to tell you what the current estimated waiting time is.

[Sparklingsunshine in reply to TrainWreck59]

I dont know about Endo but I'm waiting for a migraine clinic appointment with Neurology and its not until March. I got the appointment in September. I'm going private, I live in East Midlands. I think the 18 week rule has gone out of the window. The NHS was struggling before Covid and now everything is on a go slow.

[MikeM46]

Back on the GP aspect, given you are very symptomatic are you saying you’ve requested a GP appointment & either had this refused or had the appointment but either your request for basic thyroid testing was refused or you didn’t ask for one & neither did the GP suggest having the blood test done?

[TrainWreck59 in reply to MikeM46]

I've had the basic bloods done, and that coupled with the 2nd ultrasound have led to me being referred on the waiting list for an endo appt. Had a GP appt last Fri. Can't get another follow-up GP appt (at least this side of Xmas/New Year) for love nor money. Receptionists just say 'go to A&E or urgent care' (and sit and wait for 10 hours). GP told me last week I may get referred to an endo (upon me prompting). I have researched many endos (private and NHS) in my area and all surrounding counties (including the ones at my local hospital), and they all appear to have their specialisms and interests in diabetes and associated losing weight. Can't seem to find one that specialises in thyroid dysfunction...not sure whether this is a red flag...

[MikeM46]

Pop those blood test results here together with range(s) for others to consider if in the meantime your GP could be doing something?

[TrainWreck59 in reply to MikeM46]

I put them on my post the other day, but here they are again, if anyone's interested:

TSH Level: 2.72 miu/L (0.34 - 5.6)

Test came back 'normal'. GP note states 'no further action'.

TPO Antibody: Thyroid Peroxidase Antibody 265.3 iu/mL (0.0 - 9.0) - above high reference limit.

Test came back 'abnormal, but expected'. GP note states 'what you need to do: other (recent thyroiditis pic on scan, been referred').

Full Blood Count: Red Blood Cell Count: 4.97 10*12/L (3.8 - 4.9) - above high reference limit. Also states underneath platelet count - observation 208 10*9/L (150.0 - 450.0 'Occasional Reactive Lymphocytes'.

Test came back 'satisfactory'.

I will be doing private bloods after Xmas/New Year.

Thanks.

[TrainWreck59]

I hear you 😞. Trouble is, what do you do when they all specialise in diabetes within a 60 mile or so radius?! It then starts to become very costly as well as impractical, particularly if you don't drive!

[Sparklingsunshine in reply to TrainWreck59]

I had a similar issue, I dont drive either and as I'm being investigated for vestibular migraines and vertigo, travelling long distances via public transport whilst dizzy isnt an option. Many of the best headache specialists are based in London but honestly I just couldnt cope with the noise, crowds or the underground. Especially so near Xmas.

I've found a foremost specialist about 30 miles away and am travelling on Monday by bus. Thankfully a very straightfoward trip. I wanted to be seen in person as I want balance and ear tests which obviously cant be carried out over Zoom.

But a virtual consultation might be ok in your case. It would certainly mean a much greater chance to see a thyroid specialist. I think a lot of consultants offer these.

[TiggerMe Ambassador]

There was a years wait to see an Endo in my area but by checking into the appointment system several times a day I was able to grab a cancellation (we have one who is T3 aware) hopefully you may have a similar system?... as for whether the Endo will be any good 🤷‍♀️😕

Have you checked the list? thyroiduk.org/contact-us/ge...

[TrainWreck59 in reply to TiggerMe]

I'm very naive with all this - at what point do you get access to an appointment system please? I have checked the list, none remotely nearby, so looks like travelling would have to be an option. Thanks.

[TiggerMe Ambassador in reply to TrainWreck59]

I seem to remember the letter with booking system details came quite quickly after the referral request was accepted and then you log in to find appts available a year later 😖but you are able to book one and then swap if an earlier one becomes available

Of course I don't know which system they might run in your area?

[Sparklingsunshine in reply to TrainWreck59]

You can ask to be put on a cancellation list as well so if people drop out ( happens all the time) the clinic could offer you an appointment at short notice. Its in their best interests as well as they dont want unused appointment slots. Make sure they have your upto date contact details.

[SnowQueenOne]

Hi TrainWreck59

I was referred back in February, doctor couldn't wait to get rid of me. When trying to book got given between 38-40 week wait. Had 2 text messages since then asking "do you really need an appointment?". ! Replied yes , still waiting. Looked to go back to the endo who originally diagnosed me (had to go private as NHS wait was 4-6 months then) but she's absolutely inundated so I'm in no man's land at the moment. Wishing you all the best .

[TrainWreck59 in reply to SnowQueenOne]

Oh God, that's terrible 😞. I have no idea how the system works, when you say 'when trying to book'. Do they give you some kind of booking schedule?? I'm so sorry you're going through this, it's awful. I really hope you get somewhere soon with it all.

[SnowQueenOne in reply to TrainWreck59]

Hi I was given a link which took me through to a portal where I had several hospitals I could choose from. Every hospital kept coming up with the amount of weeks I'd have to wait. But still couldn't book anything. Finally got a number to ring and was told I had to choose 1 hospital & wait for them to contact me. When I asked if I could be considered for 2 hospitals as I live 15 mins from 2 I was told rather rudely, "No, I said choose 1"! Might resort to going private again.

[TrainWreck59]

Well, it's looking more likely that this is something I'll need to consider. I think if I'm going to have to pay for a decent endo, I want to see them in person, and not online, though, if possible 🙂

[Stickybiscuit]

Hi Trainwreck, Definitely take vitamin D and calcium, especially if you're cutting out dairy. I have osteoporosis from having Hashimotos and taking Levothyroxine. Calcium tablets can be a bit rough on your guts though so I go for the dairy option.

If you haven't been medically advised to cut out gluten and dairy and you're not doing it for other personal reasons, then there's no need to.

I gave up tea and coffee and that's really helped me sleep.

I hope you get some resolution from the health service and start to feel better soon.

Best wishes for Christmas and the New Year.

[TrainWreck59 in reply to Stickybiscuit]

Hi, thank you. I've not had dairy for over 35 years, so it's not a new thing for me. Gluten certainly is, though! I thought it was beneficial to see if being gluten free (for a trial period at least) helped with Hashimoto's, unless I've got the wrong end of the stick? I've not been medically advised anything, can't even get to see anyone! Thank you for your kind wishes. Best wishes to you also for a lovely Xmas and New Year.

[Stickybiscuit in reply to TrainWreck59]

Thanks TrainWreck59,I guess you're pretty organised finding alternative foods. I've had attempts at being dairy and gluten free but found it difficult. I even bought some raw foodist cook books to give that a try. I suppose it takes time and money to change habits of a lifetime.

All the best,

[Lottyplum]

Wait times depend on where you live. My choice was a private Endo off Thyroid UK list.

[Juli_a]

Hello my wait is 3-5 months even with an urgent referral so I ended up going for a private consult and now waiting for NHS as a follow up. But before that within 2-3 weeks of referral y GP I got a letter with a PTU (for hyper) prescription from NHS endo who reviewed just my blood results. I just can't get an appointment yet.