I have been summoned to see the local Endo at Addenbrooke's as I take T3!!!

[Jayneywales]

Right - tomorrow is the day - I was summoned to see the NHS Endo back early summer and the appointment is tomorrow. Funny isn't it that they have never wanted to see me before and were happy for my friendly BUPA Endo to look after me and move to prescribe T3.

So in anticipation of an argument - suggested to GP that it might be a good idea to have some recent blood tests to better inform all parties.

Results are:

Feb for comparison TSH <0.03 [0.35 - 5.5]

FT4 13.4 [10 - 19.8]

FT3 4.5 [3.5 - 6.5]

March for comparison TSH <0.03 [0.35 - 5.5]

FT4 10.4 [10 - 19.8]

FT3 4.0 [3.5 - 6.5]

Sept TSH <0.03 [0.35 - 5.5]

FT4 11.4 [10 - 19.8]

FT3 4.2 [3.5 - 6.5]

Ferritin 194.7 [10-291]

Folate 18.63 [>5.38]

B12 607 [211 - 911]

My dose of Levo is 100 and I take 20 of Liro

I supplement with zinc, magnesium, vit d, vit c, selinium, vit b complex. NO Folate NO Iron - just wanted to check that those were ok.

Talking to the Pharmacist at our practice she let slip that out of 6.5k people in our practice 3 people have been summoned - 2 for T3 and one for Armour!!

I will look at the advice given to Katy from SlowDragon and Diogenes and prep for the meeting - but any thoughts/advice/inside track?

Any comments gratefully received.

[shaws]

You can say there is a Petition before the House of Lords at the withdrawal of T3 from patients due to cost. (It's not the patients' fault). It is ongoing at present.

Thyroiduk.org.uk/tuk/newspage.html#debate3

[Jayneywales in reply to shaws]

Gonna be restrained and professional and see what they have to say.

[Marz in reply to Jayneywales]

I thought the response yesterday from diogenes sounded a helpful approach. You could suggest that as they are only guidelines and NOT rules then perhaps your wellbeing should come first 😊 Hope all goes well. Your results suggest an increase of both T4 & T3 are needed !

[shaws in reply to Jayneywales]

You will find that we, the patients, probably know far more than the endocrinologists although, of course, there are good ones but many are restricted by the Rules they're given, i.e. that levo alone is sufficient and the fact that they have been told not to diagnose a person until their TSH is 10, I find abomnable when ignoring our disabling clinical symptoms. Diogenes is a Researcher/Adviser to Thyroiduk.

[katey]

Good luck. Be proud and powerful. I spent hours reviewing everything yesterday and it really does seem that nhs England and even NICE are in agreement that patients can and should have T3 where it is clinically appropriate and initiated by an nhs consultant. It’s just ccg’s that are budget managing. It would be brilliant for you if you can get this cons on your side, but if not just carry on as you’re doing.

Good luck, let us know

[amasufindme]

I wish you all the best Jayneywales. I have a conversion issue DIO2 gene so am on combination LT4 75mcg/LT3 20mcg. Latest results TSH <0.05 [0.4-5.5], FT4 10.9 [11-26] and FT3 [4.3 3-6]. I wrote a supporting letter to hand to the endocrinologist upon Paul Robinson's advice with my data points for the past year showing suppressed TSH.

An extract:

"I am writing to confirm what I need to discuss with you at our appointment today. My GP Dr xxxx has stated my latest TFT results are “abnormal but expected”. I am continuing to be symptomatic with fatigue and poor cognition, in particular. I request that my Liothyronine is increased, regardless of my suppressed TSH, to ensure I am in the upper quartile of the serum T3 range. Previously I have felt better with a higher serum T3 value as per TFT results 5/3/2018. I understand patients on combination therapy, with such conversion issues, have reported improved wellbeing when the serum T3 is in the upper quartile of its range. Due to the complexity of my case, I would like to have my symptoms considered centric to my treatment plan rather than my blood ranges being exclusively used to treat my condition.

The tabulated four TFT data points are collated since changing to tablet Levothyroxine from oral solution.

Please note that I commenced LT4 monotherapy in November 2013 and LT4/LT3 combination therapy in November 2016 and during this time there has been no monitoring of my bone density nor in depth heart health. I understand that the clinical evidence for and against the effect of TSH suppression on bone and heart disease continues to be non-definitive. However, I appreciate that it is good medical practice to have a baseline measurement and monitor any significant changes in bone density and heart condition during the course of my treatment. Therefore I am more than happy to receive a DEXA scan and any further heart monitoring to ensure a baseline measurement is in place on my medical file. As you know I have been calcium and vitamin D deficient, and over the past 3 years require supplementation to sustain good ranges.

My basal body temperature is currently averaging 36.4 oC and previously on the higher LT3 30mcg averaging 36.7 oC. I personally do not observe any heart issues nor have any family historical data to share. My cholesterol level, resting pulse rate and blood pressure were monitored November 2017 by xxxxx Group Surgery as attached. My daily exercise protocol is brisk walking to ensure elevated heart rate and yoga. As you are already aware I am working with a functional nutritionist to identify root causes of my autoimmunity and make appropriate lifestyle changes to enhance my quality of life.

Thank you very much for your support."

So perhaps some ideas for you in that text ... do not be disconcerted, but my Endo was fixated by the suppressed TSH - THIS MIGHT BE THE SUMMONING FOR YOU - and he has now changed my dose to LT4 100mcg/ LT3 15mcg (which means I am having to change over to Sigma 5mcg tablets so there will be different absorbency issues).

As I left the clinic I said to him you are knowingly going to make me unwell and his response was I was being manipulative and my symptoms could well be due to my CFS !!!! WTAF

I am seeking a new Endo ...

[Jayneywales in reply to amasufindme]

Thanks 👍

[Debsoxford]

Sorry can't comment as no knowledge, that's why I'm here learning from you great people, but I wish you all the very best deep breaths smile and know you are self empowered to keep yourself well. Xx

[greygoose]

Were you on the same dose for all three of those tests? It might be helpful to include a set or results on T4 only, if you have one, to show your poor conversion. You can't prove poor conversion once you start taking T3.

[Jayneywales in reply to greygoose]

Same dose all the way through Greygoose. Been on both for 3-3.5 years

[greygoose in reply to Jayneywales]

So, you can't demonstrate your poor conversion?

[Angel_of_the_North]

I don't really understand why you need to go if you are paying to get your T3 privately

[Jayneywales in reply to Angel_of_the_North]

I’m not paying. I got a private endo to put me on a trial of T3 three years ago and the GP has been happy to play along until this Spring.

[holyshedballs]

Take with you the BTA response to NHS England's "recommendation" that T3 is swapped.

Even the BTA are up in arms about this recommendation. they say

"The BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or as an endorsement for its discontinuation"

and

1. Patients already established on Liothyronine and experiencing symptomatic benefit should be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being. Changing to Levothyroxine therapy should only be considered if the patient is not experiencing benefit from Liothyronine and any change should only be made following informed discussion with the patient and, if necessary, advice from an endocrinologist.

2. For patients with hypothyroidism who are not on Liothyronine but wish to be treated with Liothyronine, the principles guiding decision-making should follow those outlined in the BTA statement [1]. Combination treatment with Levothyroxine and Liothyronine should only be initiated and supervised by accredited endocrinologists [1]. Patients experiencing symptomatic benefit on a combination Levothyroxine and Liothyronine regimen should be able to continue such therapy prescribed from primary care.

you can download and print their statement here

british-thyroid-association...

[Jayneywales in reply to holyshedballs]

Cheers

[Muffy]

Know this is too late for you, but you cd send it in to the endo and your GP. Dr A Toft,. 'Thyroid Hormones - A Counterblast to Guidelines' .

[Jayneywales in reply to Muffy]

Thanks. Will take it with me next time 😀