Insights on 4 years of results?

[FrancesD]

Hello to everyone on here. Does anyone have any insights to share on my results, please? I'm due another blood test with my GP next week and I have asked for a full thyroid panel, but so far they haven't agreed to that. I asked last year too, but they were only willing to measure TSH. I have read on this forum that I should also get Vit D, B12, iron, and ferritin tested, alongside free T3 and free T4. I feel tired and have massive brain fog, often. Thank you so much.

[TiggerMe]

Welcome aboard

So your last result that actually means anything... (assuming 24 hours after last dose of T4?)

Free T4 (fT4) 22.7 pmol/L (7.9 - 14.4) 227.7%

Free T3 (fT3) 3.9 pmol/L (3.8 - 6.0) 4.5%

T4:T3 Ratio 5.821 

Not surprised you feel awful ☹️ but then this is 3 and a half years ago!

You have always been a poor converter and could do with some T3 ( you don't actually say what your current dose is?) You need to request a referral to Endo, check the list and hopefully there is a T3 aware one in your area that your can specify... thyroiduk.org/contact-us/ge...

In the mean time you really want to push for folate, ferritin, B12 and Vit D at the very least

Are you sure these are the correct ranges?

[TiggerMe in reply to TiggerMe]

I've just seen your reply to Tara last week about how you used to be well on T3... your other option whilst waiting for your hopeless GP is to contact rosewaylabs.com/patients/

Where you could have a private consultation and they can prescribe and supply

[FrancesD in reply to TiggerMe]

Thank you so much. I really appreciate the comments, and the support. It's hard to deal with this alone, when not feeling well. I will go to the GP tomorrow and queue for an appt from 8am, as they have asked me to do and I will ask for a referral. Thank you for the Roseway Labs recommendation too. I didn't know about them.

[Lottyplum in reply to FrancesD]

Roseway Labs are excellent and far more knowledgeable than the general medical populace!

[FrancesD in reply to TiggerMe]

p.s. I *think* they are the correct ranges. The results are taken from 3 different sources however. as I have moved areas during this time.

[FrancesD in reply to TiggerMe]

Hello again, what sort of T4:T3 ratio is good, please?

[TiggerMe in reply to FrancesD]

Something like 3-4... your fT3 should track up just below your fT4 when on T4

e.g. Free T4 (fT4) 20 pmol/L (12 - 22) 80.0%

Free T3 (fT3) 5.6 pmol/L (3.1 - 6.8) 67.6%

T4:T3 Ratio 3.571 

[FrancesD in reply to TiggerMe]

Thank you. The consultant that px'd T3 in 2017 said I was a 'poor converter'. Then my NHS GP cancelled the T3 in 2019 without warning. I thought I might be able to improve the conversion with diet, exercise, relaxation, gluten and dairy free diet. It did improve in autumn 2019, but it has bounced around a lot, and I've not been able to get NHS to measure it of late.

[TiggerMe in reply to FrancesD]

I think a lot of people 'lost' their T3 prescription when the price was ridiculously high and turned to self sourcing but things have changed and it should be easier to get your hands on via the NHS

There is only so much you can do with diet etc as many of us have the DIO2 gene issue which means we just can't convert well enough. NHS has a TSH testing only policy these days which occasionally triggers a fT4 result... they really aren't interested in treating correctly unless you twist their arm 😠

[FrancesD in reply to TiggerMe]

Thank you. That certainly mirrors my experience. I’m in the queue for the GP now… wish me luck!

[TiggerMe in reply to FrancesD]

🤞

[FrancesD in reply to TiggerMe]

I got a referral to an endocrinologist. I couldn't get full thyroid and vitamin blood tests. I will pay for these myself while I wait for the referral. Thanks for your help     TiggerMe  SlowDragon pennyannie

[TiggerMe in reply to FrancesD]

Great news 🤗 It could be quite a wait but once you have an appointment you can keep checking back for cancellations to pounce on.... your GP should be shamed into doing some proper tests before you see the Endo

[FrancesD in reply to TiggerMe]

That's a great piece of advice, thank you. I wouldn't have thought of checking for cancellations. 💡I did ask for full bloods and vits, but there was no way the GP was going to test anything but TSH. I took my historical data and showed how I was always a poor converter. I really pushed, while remaining polite. That said, I narrowly escaped being judged as depressive, because I said I was tired/low energy... so that's a plus! 😉

[TiggerMe in reply to FrancesD]

I don't know how the Endo is going to agree to see you without them doing some proper tests?? Endo's do have the option of declining referrals if they think is should be handled by the GP so at the very least they need to supply them with full thyroid results to show your poor fT3 levels

[FrancesD in reply to TiggerMe]

It's a v supportive endo (good listener too) that I've seen before. The GP said I could be referred anywhere, so I chose the one I'd seen before. I got on very well with the endo and I've dropped them a line this morning to let them know the referral is coming. Hopefully that will help.

[TiggerMe in reply to FrancesD]

Ah, excellent 👏 as I can't imagine what the GP is going to write on your referral when they don't know anything other than your TSH?🙄

Worth getting the testing done and results into them direct 😉 though you would like to think they would organise them?

[FrancesD in reply to TiggerMe]

Brilliant idea to send the results into them direct! Thank you. I will send my self-paid blood results to my GP and to the supportive endo. I feel more positive about this already.

[Lottyplum in reply to FrancesD]

Your GP is a pillock!

[SlowDragon Administrator]

next step get FULL thyroid and vitamin testing including BOTH TPO and TG thyroid antibodies

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

come back with new post once you get results

[FrancesD in reply to SlowDragon]

Hello and thank you. I take Vit D, Selenium and Zinc, as advised by consultant that px'd the Liothyronine. I have Hashimoto's. I eat a very good diet (no sugar, no processed food, gluten and dairy free), I exercise and I do yoga. I have recently started taking my Levothyroxine at 10pm at night so I can have 4 hours between any thyroxine and food/caffeine/supplements - I watched a British Thyroid Foundation video and one of the speakers suggested this approach, and I thought it might help me. When would you say my last dose should be before a Tuesday mid-morning test, please ?

[SlowDragon Administrator in reply to FrancesD]

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

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

Do you always get same brand levothyroxine at each prescription

If taking any supplements that contain biotin, eg vitamin B complex, stop these 5-7 days before test as biotin can falsely affect test results

I find it better/more convenient to take levothyroxine at bedtime. I get my T3 on NHS - testing positive for heterozygous Dio2 certainly helped - I split the dose

[pennyannie]

Hello FrancesD and welcome to the forum :

September 2019 your T3 actually looked good at 5.50 but then fell away again -

so reading through I guess this was when you were ' allowed to feel better ' and taking a T3/T4 combo :

Can't offer much else to what has already been written but when you get home why not see if this surgery you are waiting at actually supports T3 prescribing ?

If you go into - openprescribing.net you can see how supportive your NHS primary care provider is compared to other surgeries in writing prescriptions for T3 -

just enter Liothyronine as the drug ;

and similarly see how your ICB compares to other ICB areas - as to allow the prescribing T3 -

as even with a referral to an NHS endocrinologist there are pockets in the country where ICB financial constraint rather than the medical need of the patient are in place -

Sadly we can't see if these stupid rules apply to ' new patient ' prescriptions or not - but you can get an idea if you are going to be wasting your time - or not :

Many forum members have been forced to self medicate over the past years but now, at least, specialists do still offer video consults so distance need not be the issue it once was

and with Roseway Pharmacy offering both a consult and prescription service offering all the thyroid hormone replacement options, and supportive of hypothyroid patients, we have a few more options up our own sleeve.

[FrancesD in reply to pennyannie]

Thank you for the welcome! It's very reassuring and affirming to have a community that understands.

I was doing a lot of yoga and relaxation at the time that the T3 was good at 5.5. The consultant who was (given the job?) of getting me off T3 asked what I was doing and said keep doing it.

I didn't know about open prescribing.net thank you I will check this out now.

I have my appt with the GP now and I am going back to the surgery later.

Huge thanks again.

[FrancesD in reply to pennyannie]

p.s. My NHS primary care provider is in the top prescribers on openprescribing. What a useful resource, thank you.

[pennyannie in reply to FrancesD]

Ok - good - sadly we have no way of knowing - if a group surgery - which doctor is supportive of T3 - but this is a very good first step -

Step 2 - see the reaction when you explain what happened and ask for your T3 prescription to be reinstated - fingers crossed :

[FrancesD in reply to pennyannie]

Thank you very much. I'm starting to feel nervous before I go back to the surgery. Am I alone in that? It's high stakes for us patients.

[pennyannie in reply to FrancesD]

No - we have all been there - gave me / increased my PTSD !!

just put one foot in front of the other and advocate for yourself as you would for a loved one -

[FrancesD in reply to pennyannie]

Great advice, thank you. I can be very persistent... but only for other people! But yes I'll aim to get into that mode for myself! I am so sorry you have had such difficulty. I hope you're now feeling a lot better. It's day by day, I know.

[FrancesD]

Very good, thank you. I haven't noticed what brand I get, other than it isn't the one that I always request, Teva (and that's just because the tablets are larger and easier to pop them out of their blister packs). The GP ignored that request after countless polite requests, so I gave up.