Right to a Referral - does anyone know if this is a thing?

[Rosannaclare]

I'm having trouble getting my GP to give me a referral to an Endo. I'm Hashi's (finally diagnosed 2017) and recently started Levo.

My GP knows less than zero and believes that getting TSH 'up' means a well-treated hypothyroid, and I'd like a referral for a few reasons.

(1) Obviously I'd like a specialist to manage my treatment/dosing long-term since most GPs know even less than a bad Endo...

(2) I have a goiter which has appeared in the last 6 months and is getting progressively worse. It's been around before over the last 10 years, maybe twice a year for a week at a time (I never knew what it was!), but this time it's not going away and it's really awful. Retching and choking all day.

(3) my sister had thyroid cancer 15yrs ago and I'm particularly concerned about checking out the enlarged structures in my neck. An MRI in early March (investigating something else) revealed 'enlarged structures' in my neck (before I could feel a goiter).

I've read through the NHS patient rights and can't find anything - does anyone know about any guidance or rights that might help me *persuade* my GP provide a referral?

Thanks

P.S. I'm also feeling pretty terrible on the Levo and it's worsened my goiter, but because it's only the beginning of taking it I thought that maybe this was just an adjustment period?

[PurpleNails Administrator]

GPs will say they have limits to what they can refer. If a referral doesn’t meet the strict criteria specialists pass it back to the GP, often without the patient being informed at any stage. Persist in explaining your how it seems they have been unable to manage your symptoms, coupled with your family history.

Patient have some rights as to where they are treated and within a timeframe.

Unfortunately specialist are often no better than a GP to managing treatment.

They should be dealing with neck swelling. Don’t say goitre as that’s will be their final diagnosis. State you have new neck issues. Which is causing choking of your food. Make sure you tell them if it is affecting your breathing or voice.

Has there been no plan to follow up from the MRI in March revealing enlarged structures in your neck?

Do you have any current blood test results? If so post them with ranges.

[Rosannaclare in reply to PurpleNails]

Persist in explaining your how it seems they have been unable to manage your symptoms, coupled with your family history.

State you have new neck issues. Which is causing choking of your food. Make sure you tell them if it is affecting your breathing or voice.

Thank you this is really helpful. I'll stick with this approach.

The MRI was followed up by blood tests looking at white blood cells because the enlargement earlier this year was around lymph nodes, the neverending goitre followed afterwards. When the WBC normalised (although once I got my results printout I saw my GP had lied to me and they hadn't fully gone back to normal) then they considered the matter of my neck post-MRI "closed". It's my fault I didn't fight this, but with so much fatigue and the fact that I hate going to the GP with a passion, I just let it go.

I have current bloods but am doing more in the next week or so to pick up on levels my GP didn't test (e.g. FT4, FT3, Vit D).

My thyroid levels have always been within normal range (although I don't yet have an up to date full panel). A month ago TSH was 1.11mIU/L (0.35 - 4.94). Always elevated TPOAb.

Low ferritin I'm supplementing, folate dropped again so supplementing, high B12 (something weird's happening there but that's another story), and previous vit D deficiency which I'm supplementing.

[SeasideSusie Remembering]

Rosannaclare

My GP knows less than zero and believes that getting TSH 'up' means a well-treated hypothyroid

If that's what your GP believes then I think the first thing you should do is find a new GP. The higher the TSH the more hypothyroid you are, the aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

If your results are within range, even if a GP does refer you an endo can refuse to see you.

[Rosannaclare in reply to SeasideSusie]

Thanks SeasideSusie , yes it's madness isn't it. I don't know what it is but when I go in there I turn into this quiet, compliant, unsure thing... and if I disagree or correct her/them it seems to make my treatment and their willingness to work with me go down even more.

I'm in the catchment area for one GP practice (oh Cornwall...), and it's hard to get an appt with a GP that isn't her. I've found an app 'Livi' which I'm eligible for free GP consultations in partnership with practice because of my area, so I'm going to try that for an alternative in the next week.

[humanbean in reply to Rosannaclare]

Do you have a friend/relative/partner who knows you well and understands and empathises with your health problems? If you do you should take them with you to face-to-face appointments as a witness. It often makes doctors more polite. At the very least it makes them less likely to bully you and be rude to you.

Your other option... If you are forced to speak to a doctor or nurse on the phone, make the call or answer the call on a phone which can be put on loudspeaker and have a witness then too. If you have the necessary equipment you could record the call as well.

I find that having a witness gives me more confidence in dealing with doctors.

[Rosannaclare in reply to humanbean]

I had thought that for face to face appointments during the pandemic you weren't allowed to have someone with you? Otherwise I'd definitely take my husband in with me! It would be great to have a witness, and I totally agree it would help me be more confident. I never thought about it for the phone but that's a great idea, I'll do that for future phone consults.

[humanbean in reply to Rosannaclare]

I didn't know that witnesses were banned for face to face appointments - it's a good job I haven't needed to see a doctor during the pandemic then.

Not having a witness would mean I couldn't see a doctor at all. I'm very hard of hearing, and I struggle to communicate under normal circumstances. With masks on I can't hear or understand anyone because I partially lip read to back up my ears so I would need to have my husband with me to tell me what was said after the appointment.

Also, my surgery has a crap phone system that means 50% of all the words you hear from them are missing bits. So I can't speak to a doctor on the phone either.

[Rosannaclare in reply to humanbean]

I don’t know for sure that they’re banned I think I just assumed so since fathers can’t be with their partners during births! It sounds like they would definitely make allowances based on your needs, so no need to worry for you if you do need to see them face to face I don’t have any issues with communication apart from not being firm or confident enough so doubt they’d make an exception. If I have any problems today (I forced an appointment ASAP after the replies here!) then I’ll ask at least.

[McPammy]

I don’t understand why a GP wouldn’t refer you to an Endocrinologist, that’s just neglect.

If they won’t do that then request to see an ENT Dr. My sister went through something similar her GP and NHS Endo said she had depression. She changed hospital and went to see an ENT Dr. They did a fine needle aspiration and they found cancer. Her thyroid was removed within 3 weeks. Don’t wish to alarm you but you mentioned about your sister too.

Or turn up at A&E and they’ll do something straight away rather than waiting for your GP to get their act together. Don’t let the incompetence of a GP mess with your health. Sometimes we have to take action ourselves if we know there is definitely something not right.

[Rosannaclare in reply to McPammy]

Thanks McPammy , you're right, I need to get investigations now and not wait. They just manage to make you feel like what they're suggesting is the only sensible way and that you're troublesome for asking for more. I'm guessing if it was the GPs daughter she wouldn't be so complacent... I'm following up with an online GP service this week and will demand a referral. Failing that I'll go to A&E.

[McPammy in reply to Rosannaclare]

They made me feel as though I was troublesome. I kept collapsing. After months of failed NHS Drs diagnosing I finally went private only. I was diagnosed in 2 consultations. I needed T3 my bloods and a positive DIO2 gene test proved this. Once on T3 I went from being housebound ( was on Levothyroxine only for 11 years with lots of trouble) to walking 10 miles easily. I wish I’d chosen private only a lot sooner but didn’t have the knowledge. I ended up losing my dream job because of NHS neglect. Act soon. Be polite, firm and knowledgeable as you can. I’m sure you’d be like this anyway. Go for it, sometimes it’s the only way to find wellbeing.

[Rosannaclare in reply to McPammy]

Knowledgeable and polite definitely, firm not so much! That’s what I need to do better on.

It’s really positive to hear about the transformation in your health, I’m really glad you’ve finally gotten the treatment and care you needed

[Rosannaclare]

Called the practice, spoke to a Dr, made a fuss and said the all the things suggested, then went in and got seen this afternoon by him, and got a referral to an ENT at least on the "2wk cancer pathway" to investigate the lump/s. Thanks humanbean , McPammy , SeasideSusie , and PurpleNails for all the advice