Follow up to follow up of Referral letter **

[Gingernut44]

For anyone who remembers my recent post regarding the letter my Doctor received from the Pathologist re my future testing, here is my letter to him regarding that. I anticipate dropping it into the Surgery by hand so haven't done that yet. Do you think I have laid it on a bit thick - I don't want to put his back up. Any amendments you think I should make, please let me know.

Dear Dr (My GP)

Many thanks for the copy of my referral letter to The Spire Hospital. Thanks also for the copy of the letter you received from Dr XX(Pathologist) in response to your request for my free thyroid hormone markers. My comments on that letter are as follows:-

What makes this Pathology Consultant think she knows me or my symptoms as, how could she from just the simple TSH test. This tells her nothing about my conversion rate nor if my T3 and T4 are balanced and in the appropriate area of the range for me to feel well. As for her statement at the end of paragraph two, suggesting that I was taking adequate replacement but suggesting erratic compliance - this was the “six weeks” test after you had withdrawn my Levothyroxine (8 January 2019 - 25 February 2019) due to the adverse side effects I was having. As it happens, Dr XX(Private Endo) said that it was a pity the FT3 test was not done at that time as this would have given him a greater knowledge of my situation. As I recall, I had requested that test to be done in my letter to you dated 13 February 2019.

The reason that the FT3 test is denied to GPs is not the cost of the actual test (approximately 93p when carried out alongside FT4 and TSH) but the cost to the NHS of prescribing T3 (Liothyronine) should it be shown necessary, since the manufacturing Pharmaceutical Companies have hiked the price, this despite the hormone being available to purchase in Germany with a private prescription for approximately E1.15 for 30 tablets. It is also available over the counter in Greece. Even those patients previously prescribed T3 on the NHS have since had their prescription withdrawn leaving those in need of this medication having to self source and fund. This is an absolute disgrace.

Many hypothyroid sufferers also have to self fund appropriate private blood tests (which includes FT3) as I have had to do in order that Dr XX(Endo) had the full picture of my thyroid function at my appointment with him.

As to her being “slightly wary” of changing clinical practice based on the articles by Dr John Midgley (who, by the way, was the inventor of the FT3 and FT4 test now being used) and Dr Anthony Toft, eminent Endocrinologist, past President of the British Thyroid Association and author of several thyroid disorders books, does she presume to know better than they do with regard to thyroid disorders?

I am aware of the new “extensive guidelines” of NICE and also the supposed “much more full and evidence based review” which is causing quite a stir (and nervousness) in the world of thyroid sufferers, both hyper and hypo. It remains to be seen whose evidence they decide to take as “gospel” in an effort to avoid prescribing T3 and/or NDT.

Dr XX (Pathologist) can rest assured that should I need my free thyroid hormone markers checked in future, they will be done privately, under my own funding and any “opinion” I need on the health of thyroid I will seek from an Endocrinologist.

Yours sincerely

……………………………………………………………………………………………………………………………………...

The Lancet

Diabetes and Endocrinology – Liothyronine cost and prescriptions in England

doi.org/10.1016/S2213-8587(...

……………………………………………………………………………………………………………………………………..

Thyroid hormone replacement- a counterblast to guidelines (A D Toft)

rcpe.ac.uk/college/journal/...

[shaws Administrator]

I congratulate you Gingernut44 and your communication is precise and to the point. The majority on this forum can agree wholeheartedly with you about the dismissive way hypothyroid patients are diagnosed and prescribed with levothyroxine alone. Those who are 'in charge' seem to believe in fairytales i.e. that levo alone will restore all hypo patients to good health but many on this forum know that's untrue. Also taking more notice of the TSH alone than symptoms is wrong. We should be offered options regardless of cost and the Authorities could source T3 and other thyroid hormones at a lesser cost than the NHS is being charged.

Good health should not be a 'cost effective' method by giving the cheapest possible thyroid hormone replacements despite the patient not recovering . He/she should be prescribed options, i.e. T4/T3, NDT or T3 alone but who are given prescriptions for other than thyroid hormones to try to control disabling symptoms.

[MaisieGray]

The price of Thybon Henning is 31 Euros for 100 tablets, which equates to 9.3 Euros for 30, rather than 1.15 Euros for 30. 🙂

[Gingernut44 in reply to MaisieGray]

Thanks maisieGray, I'll change that before I deliver it

[greygoose]

I like it!

[Nanaedake]

What do you hope to achieve? There's little your GP can do on the political issues you raise. You could raise them with your MP though.

[Gingernut44 in reply to Nanaedake]

I might even do that - I just wanted my GP to know how I felt about the arrogant Pathologist who wrote him a very nasty letter regarding my blood tests, after all, he was only asking for them to test my FT3 at my next test - see my previous post

[Nanaedake in reply to Gingernut44]

Sounds like you have a supportive GP. Maybe just thank him/her for their support and address your complaints to the path lab, as suggested below, or MP. You could copy your practise manager into letters instead if GP. I think you want to keep your GP onside in terms of your direct health concerns and not embroil them in the politics.

You can always tell your GP how you feel next time you visit rather than on paper. It doesn't always come across the way you intend.

[SlowDragon Administrator]

As you say ... It is primarily the price of UK T3 that is preventing prescribing, ignoring clinical need of patients.

There is ample research to show many patients benefit from the addition of small dose of T3.

A few more links you might like

british-thyroid-association...

If your GP wished to put their head above the parapet .....they could prescribe

thyroidtrust.org/a-gp-write...

Research shows 20% Patients with no thyroid function can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

thelancet.com/journals/land...

Overall, current pricing of liothyronine has substantially reduced its prescription, engendered widespread variability in patients' access to it, and increased its overall cost to the NHS

endocrine-abstracts.org/ea/...

No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated.

Approximately 3% of UK population are prescribed Levothyroxine

bmcpublichealth.biomedcentr...

From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].

UK population =66.04million = 3% is approx 1,981,200 on Levothyroxine

It’s widely accepted in medical circles that approximately 10-15% of patients do not recover full health on Levothyroxine mono therapy

sciencedaily.com/releases/2...

ncbi.nlm.nih.gov/pmc/articl...

….”authors have questioned the efficacy of l-thyroxine monotherapy because about 10% to 15% of patients are dissatisfied as a result of residual symptoms of hypothyroidism”

10% -15% remaining unwell on Levothyroxine is a large number of UK patients, (approximately 200,000-300,000 patients.) No wonder UK Thyroid support groups are inundated with dissatisfied patients only prescribed Levothyroxine.

Thousands of UK patients on Levothyroxine remain unwell, often with severely curtailed life, frequently unable to work or contribute to society..

It should not be left to the patients to fight for testing and recognition that, for some patients, Levothyroxine is not enough.

[Gingernut44 in reply to SlowDragon]

Thanks SD - I'll have a good look at all my replies tomorrow- I've been out all evening and it's time for bed ( 1.20 am)

[Gingernut44 in reply to SlowDragon]

SlowDragon I've now had chance to look at the links you kindly gave in your reply and have printed some of them out - I think I will have to drip feed them to my Doctor as I don't want to end up with him disregarding them all because it's all too much to read in one go

[m7-cola]

@Gingernut44

I like your letter. How about sending it to the pathologist with a copy to your gp?

[Gingernut44 in reply to m7-cola]

Hi m7-cola, I see your point but I don't want to put my Doctor in an awkward position - he was good enough to let me have a copy of this letter from the Pathologist. He was doing what he thought was best for me, considering about 4 months ago he said in his letter to me that it was "not appropriate to test FT3 and FT4 when taking Levothyroxine". I had managed to change his mind on that. I need to keep him on side. I'll see what reaction I get from him after he's seen my letter!!

[Fruitandnutcase]

I like it. Apart from the cost of T3 being one of the reasons doctors don’t want to test T3 and find that your T3 or lack of it is keeping you ill, your main gripe is really with the pathologist though who had the utter cheek to say your poor results had come about because you were not complying.

As if someone who is absolutely desperate to feel better would ‘not comply’. I definitely think the pathologist needs their own personal copy of your letter as does your MP.

[Gingernut44 in reply to Fruitandnutcase]

Hi Fruitandnutcase , I agree fully with that sentiment, I certainly was not "non compliant", I wasn't prescribed Levo during that time, but, as I said to m7-cola, I don't want him to think that I've gone behind his back. I want him to see how disgusted I am with the Pathologist first and then perhaps I'll take it further.

[Gingernut44]

Just another thought that came into my head (surprisingly enough that such Pathologists, if they knew that patients were getting copies of their letters would probably spout their discriminating ideas to Doctors over the 'phone instead of putting them in writing, then we wouldn't have any idea of their arrogance.

[NWA6 in reply to Gingernut44]

Yes that happened between my GP and pharmacist. I went to pick up my usual prescription and the pharmacist said that my GP had called him and asked him to have word with me about how to take my tablets. He didn’t give me any privacy, took me completely by surprise when he basically said I was making myself I’ll because I didn’t understand how to take my tablets and I need to stop chopping and changing my dose. I asked him where he got such information because after 8yrs of picking up my meds at his pharmacy is only ever spoken to him once about a completely different matter. I tried to not to be too rude but I was livid and told him where to stick his advice as he didn’t know what he was talking about 😩 They’ve a bloody cheek I tell ya!

Best of luck with your letter Gingernut44 🤗

[Gingernut44 in reply to NWA6]

Thanks for that Paula, I would love to tell this Pathologist what she can do with her advice but I think I'll wait for my Doctor's reactions first

[NWA6 in reply to Gingernut44]

😂 quite! Easy enough for me to change pharmacy’s and ask for a change in GP. But I’m not winning anyone over 😬

[Gingernut44 in reply to NWA6]

I'm sorry you're not winning anyone over - I absolutely agree that those who are not actually treating you should keep their nose out of it - I'm actually being kind to my Doctor for once