Wow the GP experience is real…

[N5girl]

I was recently privately diagnosed with autoimmune Hashimoto’s by a (NHS) endocrinologist with autoimmune Hashimoto’s. I was diagnosed via bloods and a scan, and there is a significant family history of Hashimoto’s. There was also a record of increasing TSH etc due to employer health checks. I think I am an example of a patient with a thyroid getting worse, where the blood test results were marginal, but the scan and symptoms were conclusive.

Today, I went to my GP to get my Levo prescribed via the NHS instead of privately. I am only on 50 mcg at the moment because my Endo is v conservative in increasing dosage. My fatigue hasn’t gone but is getting better.

My T4/T3 levels now are within the NHS ranges - although not where the Endo wants them to be yet.

The GP actually questioned whether I should have a prescription given my blood test results. I had to point out repeatedly that the levels weren’t within range before and there was a scan showing a Hashimoto’s thyroid. Other measures like my cholesterol have improved dramatically over a couple of months since taking Levo - which the Endo says shows it is the appropriate treatment.

The GP’s biggest issue seemed to be that I had seen an Endo privately and therefore this seems to invalidate the diagnosis. Lots of pointing out from me that they are a highly regarded NHS consultant.

Thankfully sense prevailed after 20 mins… but it was still an uncomfortable conversation. Luckily, uncomfortable conversations are my day job. I feel sorry for anyone scared to argue with GPs etc.

So why am I writing this post?

1. To say thanks for all the advice and resources on this forum. I was able to use the correct language when arguing my point.

2. Be prepared and practice your conversations. Find the most argumentative friend or family member and get them to be the GP.

3. Have copies of everything - records, NICE guidelines etc.. and get any private letters uploaded separately so they are on your NHS record.

4. Know your audience. I have moved recently, so this is a new GP. I will do my research and find a different one for future conversations. .

Thanks once again for all the advice.

[Sparklingsunshine]

Haha well done for fighting your corner, and welcome to the club no,one wanted to join, ever. The useless jobsworth GP club.

Frankly he or she has no business querying your treatment if you are under an Endo. Its none of their beeswax and they should just write the prescription. This GP is best avoided.

[J972 in reply to Sparklingsunshine]

“Welcome to the club that noone wanted to join”, lol!

[J972]

Absolutely brilliant post, thanks so much for creating it. As I was reading, my incredulity and annoyance increased as I muttered to myself, “This should not be happening!” Your insightful comments about needing to be well informed and confident when dealing with GPs is bang on the money and I too despair for all of those who are fearful or deferential.

[helvella]

And the irony that, had you not started treatment, the whole GP appointment (understanding the issues, preparing for it, arguing your corner, etc.) would likely have been more difficult to manage.

Ending up that if you weren't already being treated, you might have failed to persuade your GP that you need treatment, even though you would have been in more serious need of it.

(You might have managed - I'm not really speaking of you personally - but others in parallel situations might not.)

Thanks for the post. Explaining as you have does provide encouragement to others.

[N5girl in reply to helvella]

This is spot on… if I had gone via the NHS I would not have had an ultrasound and it would have gone untreated until I was far worse. Realistically, I probably would have lost my job by then as well. ‘Luckily’ my employer wants us chained to the desk and pays for extensive medical courage. ‘Luckily’ I also work in a tough environment and can negotiate with people basing decisions on policy, not evidence.

In a way, I would understand an argument based on cost (although Levo is pennies). This argument seemed to be more a dislike of people having followed a non-GP route.

I knew his specific knowledge was limited when he didn’t understand the difference between the different manufacturers and I had to explain it to get him to prescribe my preference.

[Sparklingsunshine in reply to N5girl]

Levo is pennies but thyroid patients need regular blood tests which costs the surgery money, and we can claim a medical exemption on ALL prescriptions, which if you take several can mount up, cost wise. I often think this is a factor in why the NHS is so notoriously reluctant to initiate treatment for hypo.

[helvella in reply to Sparklingsunshine]

I do not think prescription charge exemption is much of an issue.

I'm not aware there is any significant difference in rates of diagnosis and treatment between England (where prescription charges apply) and the other three nations (where they do not).

However, it is a long while since I looked so it might not be quite as even as it once was,

[Sparklingsunshine in reply to helvella]

Well as I said its just a suspicion of mine but at nearly £10 per item, if you are on several meds per month then a ME is quite costly for the NHS.

[helvella in reply to Sparklingsunshine]

Yes - it can be a cost.

But if the GPs were avoiding diagnosis for that reason, I think we would expect to see a difference across the UK.

Also, if you really are on several medication per month, then it would clearly be worth doing almost anything to get hold of sufficient funds to buy a prepayment certificate, and by so doing cap the cost at:

£32.05 for 3 months

£114.50 for 12 months

(Pretty close to one prescription charge a month.)

The people who get caught on charges are:

a) Those who do not know in advance it would be worth getting a PPC;

b) Those who despite the advantages cannot get the money together;

c) Those who simply do not know about PPCs, charges, etc.;

d) Those who get their medicines prescribed in small quantities hence have more prescription charges.

[N5girl in reply to helvella]

It’s an interesting discussion because I have always thought of myself as an ‘ideal’ low-cost NHS patient that a GP would like on their books, but I don’t know if this is actually true or not.

I see a private GP via my employer. My only NHS prescription is HRT and I have the prepayment certificate for that - £20 pa. That equates to 12 x oestrogen and 12 x progesterone so I am paying just under £1 per item. Based on previous private prescriptions, I think that probably gets quite close to the cost of it to the NHS.

I will probably still pay for the one-off private cost of something like antibiotics because I so rarely get prescribed them and getting a NHS prescription is such a hassle for me (ie staying at home, trying to get a GP appt). So fingers crossed I will not be making use of the prescription cost exemption apart from for the Levo.

I have an annual (very extensive) physical including all the additional female stuff you have to get done. The private GP runs bloods whenever necessary. I don’t think I have ever had a NHS blood test.

I did explain all of this upfront to the GP so he knew that he is probably never going to see me again…(fingers crossed). He did refer to cost quite a bit during the conversation so I think there was some ‘policy’ thinking going on there.

[arTistapple in reply to Sparklingsunshine]

But the blood tests are incredibly cheap too. Just another one in the eye for us, making us feel ‘surplus to requirements’. It’s a horrible game.

[TiggerMe Ambassador]

Great job well done ⭐👏👏 People don't believe how much of a battle it is

Like you say it's all about the knowledge and therefore power this forum gives to enable people to prepare and fight their corner

My GP still refers to my treatment as Levothyroxine and that other stuff you take!!😕 Liothyronine prescribed by the NHS Endo after I insisted on a referral due to her failing me and no doubt all the other poor thyroid patients she must see 🙄

It is bizarre how GP's generally know very little about thyroid issues but they will interfere with treatments laid down by Endos and Consultants

[SlowDragon Administrator]

well done on standing your ground

It definitely shouldn’t be this hard

With an official diagnosis of hypothyroidism you now qualify for free prescriptions going forward

nhsbsa.nhs.uk/check-if-you-...

Who is entitled (medical conditions)

You're entitled to a medical exemption certificate if you have either:

myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)