Looming Endo Appointment

[Gbunny]

I had RAI in 1998 and been on Levo since 1999. Last time I saw an endocrinologist was in 99. Been on 200 initially, reduced to 175, then 150 which made me feel absolutely awful, so increased to 162.5 and feel absolutely fine. Doc stated I was overactive on this, suggested m that I reduce to 125 and we debated over phone which felt like a ‘covering her backside’ conversation and wouldn’t accept that small increase from 150 to 162 made me feel better and that 125 would probably make me feel ‘written off’. I told her that I have Graves’ disease and had RAI 25 years ago. She had to write to Christie’s in Manchester for confirmation. She suggested that I see an endocrinologist, which I agreed with. I have a telephone appointment with a member of Endo team, without request for blood tests, I’m assuming this may be a wrist slapping exercise to encourage me to reduce my Levo, I’m actually really anxious about this appointment, as there’s no way I’m going to reduce my Levo, I feel absolutely fine. No signs of being overactive, blood pressure, cholesterol, sugar and all tests came back normal. I’m 62 working full time and I’m scared of someone wanting to change this. Has anyone else experienced this and if so, how did they get on ?

[TiggerMe]

Have no fear they can't drop your dose unless you agree as long as you are within their range... so hold firm... they certainly shouldn't be even thinking of meddling without a full thyroid panel to see where all your levels are... it could actually be that they take a proper look and listen to you and leave you be 🤗 or offer you something better 🙏

Or to put the wind up them you could say that if the Levo goes any lower then you'd be needing Lio 😏

What are you number like any idea, presumably you test privately?

[TiggerMe in reply to TiggerMe]

Just looked up your last results... it could work in your favour I would have a discussion with them about trialling T3 as your fT4 is a little over range which isn't great for you, but if they drop your T4 your fT3 will suffer as your conversion isn't great, so slightly less T4 and a little T3 would be a step in the right direction!

TSH 0.01 mIU/L (.27 - 4.2) -6.6%

Free T4 (fT4) 23.2 pmol/L (12 - 22) 112.0%

Free T3 (fT3) 4.66 pmol/L (3.1 - 6.8) 42.2%

T4:T3 Ratio 4.979 

[pennyannie]

Hey there again :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.: with T3 said to be around 4 times more powerful than T4:

Some people can get by on T4 only :

Some people find that by adding in a little T3 - likely to replace that little bit of T3 lost - when they lost their thyroid - they find their T3/T4 hormone balance restored and their health improved.

Some people can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others feel improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

You feel well on T4 monotherapy but can't get your results in the ranges and the NHS are fixated on having a TSH in the range, which when you haven't a thyroid and have Graves Disease can likely only be achieved by compromising your health as this reads very similar to the circle of continued ill health I suffered in order to get my readings in the ranges.

If you drop your T4 to fit in the ranges your T3 will also drop as will your health and well being and your TSH may move into the range- but may not - there is no guarantee :

There could be an option of the endo suggesting a trial of T3 with a reduced dose of T4 :

This would bring both T3 and T4 into the ranges - but TSH will likely still be suppressed and the trial likely abandon if the focus is still on having a TSH in the range.

If it weren't for the guidelines and ranges you do not feel you have a problem :

Were the guidelines written for Graves patients post RAI thyroid ablation - a medical intervention we are encouraged to take, told is totally safe and that will resolve our health issues - no :

Are there specific guidelines for Graves patients post a thyroidectomy - no:

I too had RAI thyroid ablation for Graves Disease back in 2005 and reducing my dose of T4 to fit into the ranges started off my health issues - details on my profile page : just press the icon alongside my named reply and go to my Profile Page :

I have been self medicating now for around 5+ years and settled on NDT and am much improved. I run my own blood tests and supplement the necessary vitamins and minerals as necessary.

Did you get any of those books I recommended ?

We do now have this research paper regarding QOL after RAI thyroid ablation ;

ncbi.nlm.nih.gov/pubmed/306...

I do just wonder how much this is due to lack of knowledge, blindly following guidelines and not offering full spectrum thyroid hormone replacement to all patients dealing with this poorly understood and badly treated stress and anxiety driven auto immune disease.

[Milkyway88 in reply to pennyannie]

That’s interesting Pennyannie, should be a compulsory read by all GPs and endos.

[SlowDragon Administrator]

You need to retest FULL thyroid and vitamin levels

7 months ago you were taking levothyroxine with coffee

Presumably since then you have been taking correctly

That’s Levo on EMPTY STOMACH, then nothing apart from water for at least an hour after

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

ESSENTIAL to test folate, B12 and ferritin at least annually

Vitamin D twice year

[Gbunny]

Many thanks for the advice. I’ve been taking my Levo with water last 7 months. Didn’t realise caffeine would obscure blood tests ! Should I have private full thyroid function / vitamin test prior to my appointment, or should I wait until appointment and suggest they conduct this blood test? If pushed I will suggest combining Lio but concerned about transitional side effects. Maybe this would help me lose some weight ? I have healthy diet, and regularly exercise 5-6 times/week, gym and run but find it almost impossible to lose weight, put it on fairly quickly though, so could combing Lio help this ?

[pennyannie in reply to Gbunny]

Yes - arrange your own private blood tests now so we have time to explain all the results to you before you go to the appointment and can offer you advice on what to say when there.

You will likely do better on a combo of T3 and T4 and this is more easily prescribed than NDT on the NHS.

If you go into openprescribing.net and then analyse you can see by surgery and area how active your ICB / CCG are at prescribing Liothyronine and for NDT enter Armour as the drug.

Hopefully you are in an area where T3 is prescribed and this appointment is not just a conversation on your TSH being too low and the assumption made that you must be ' over medicated and or hyper ' but a conversation about prescribing T3 alongside a reduced dose of T4 thereby restoring your thyroid hormonal balance and well being.

Private blood test companies are listed within the Thyroid UK website who are the charity who support this forum. thyroiduk.org - it's around 10/11 analysis and generally referred to as an Advanced / Full / Thyroid Blood test.

Between them, Medichecks and Blue Horizon pretty much cover the country with a nurse home visit service , at an additional cost, if this suits you better.

You need an early morning appointment - preferably at the beginning of the week and the turnaround is generally a couple of days.

Stop all supplements around a week before the test so we measure what you body is holding and do not take your T4 the day of the test until after the blood draw - so around 24 hours from last T4 dose - and fast overnight just taking in water.

[Gbunny in reply to pennyannie]

Thank you so much. I used blue horizon last time, so will do as you suggest ! Thanks again !!!