Refused NHS Endo Referral but OK GP appointment - Thyroid UK

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Refused NHS Endo Referral but OK GP appointment

Jingley profile image
16 Replies

As the title really. Just seen my GP and took these results along.

Monitor My Health 23 July 2024

TSH 0.08 mIU/L (.27 - 4.2) -4.8%

Free T4 (fT4) 21.1 pmol/L (12 - 22) 91.0%

Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%

T4:T3 Ratio 5.275 

I told him they were NHS results but paid for privately an he just said that the TSH agreed with my GP results and a reduction in Levo is needed. 🥴

Tried to point out the very low T3 and he just towed the NHS line and said that they can only go off TSH. And that those results in themselves don't warrant a referral.

On the plus side he said that he'll not reduce my Levo but put a note on file saying I know the risks of low TSH

Another plus is he's agreed that it would be a good idea to raise my ferritin before I go back to him crawling on all fours cos I cant stand up screaming for help 😁

He's also arranged more bloods and fit/fecal tests to rule out any nasties (his words) with my digestive issues but with the info I gave him he said it's pointing towards dairy intolerance.

Overall, a positive appointment and I'll hold fire with an Endo appointment to see if raising ferritin levels results in an improvement in my T4 to T3 conversion.

Off to buy some oat milk so I can have my caffeine fix👍

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Jingley
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16 Replies
Sparklingsunshine profile image
Sparklingsunshine

You might need to think about adding some T3 in eventually if your conversion doesnt improve. But its looking unlikely you'll get it via NHS.

greygoose profile image
greygoose

It's not the low TSH he should be worrying about - although you'll probably never be able to convince him of that - it's the high FT4. And I do agree with him that a reduction in levo would probably be a good idea. Very high FT4 makes conversion worse, not better. Bring your FT4 down a little, and even if conversion doesn't improve, the T3 you have may be more efficient. Long-term high FT4 levels bring their own risks and problems.

Jingley profile image
Jingley in reply togreygoose

I really do agree about the very high T4 although I was told initially that high T4 was absolutely fine as long as it wasn't over range- this is the highest that my T4 has ever been.

Problem is, I've been down the reduction of Levo route and I felt, to put it plainly, bloody awful.

greygoose profile image
greygoose in reply toJingley

Yes, it's a balancing act and not everyone can pull it off.

It's a recent discovery that long-term high FT4 is bad for you, increasing risks of all sorts of problems - see the posts of jimh111 . But even without those risks, having an FT4 that high means that your T4 is converting to more rT3 than T3. And not only that, but the T3 there is is down-graded in its efficacy - can't give you the details because I don't fully understand them myself. :)

Jingley profile image
Jingley in reply togreygoose

Why is life so complicated. I really wish it was as simple as the NHS seems to suggest - Take this little white pill and you'll be fine.

greygoose profile image
greygoose in reply toJingley

Tell me about it! Their faith in that little white pill is extraordinary! But that's because they've never had to take it, and to rely on it for their health and well-being. If they did, they might change their minds!

Sparklingsunshine profile image
Sparklingsunshine in reply toJingley

Hypo isnt treated with the seriousness it merits, in the UK we get fobbed off with GP care, whereas if you are hyper then you at least get to see an Endo. Now being hype can be life threatening so I'm certainly not begrudging anyone the chance for best care but why is hypo so poorly treated and regarded as being no big deal? As the numbers on the forum show its clearly far more complex than taking little white pills every day.

Brightness14 profile image
Brightness14 in reply toJingley

I have always had high FT4 but also FT3 at around 6 plus. Your is out of balance.

pennyannie profile image
pennyannie

Hey there again ;

So is he running an iron panel or referring you for internal investigations before prescribing anything for ferritin ?

Once your vitamins and minerals are optimal you may well find your ability to absorb and convert the T4 into T3 will improve - giving you a lower T4 and a higher T3 from the same dose of Levothyroxine.

though in my experience my ferritin took a good 6 months to even build up over 50 -

Was he accepting that your thyroid hormone replacement needed to be optimal before he should start prescribing anything for the high cholesterol -

and that in order to resolve the cholesterol you need a much higher level of T3 which can only be prescribed by an endocrinologist - should your conversion of T4 into T3 remain compromised ?

Jingley profile image
Jingley in reply topennyannie

So is he running an iron panel before prescribing anything for ferritin ?

He's agreed to test in about 3 months. Last panel was so-so.

Was he accepting that your thyroid hormone replacement needed to be optimal before he should start prescribing anything for the high cholesterol -

We had that discussion but it ended with him saying that cholesterol issues are linked to hypothyroidism and I am not hypothyroid because my TSH says I'm not 🤨 I refused statins.

and that in order to resolve the cholesterol you need a much higher level of T3 which can only be prescribed by an endocrinologist - should your conversion of T4 remain compromised ?

Didn't get that far

pennyannie profile image
pennyannie in reply toJingley

OK - well done - enjoy the oat milk coffee !!

HealthStarDust profile image
HealthStarDust

I had similar results some time ago. I didn’t change dose and 8 weeks later my FT4 was over range and TSH even more under range/suppressed

Based on my experience, I no longer wish to risk being on the higher end of an FT4!

Jingley profile image
Jingley in reply toHealthStarDust

Thanks for sharing that. 👍I'm certainly going to keep a close eye on things as I don't want to make my health worse. My T4 has a habit of changing by 1 or 1.5 points either way without anything else changing or being altered.

HealthStarDust profile image
HealthStarDust in reply toJingley

I wouldn’t call that a change. More likely the margin of error in blood tests.

66olives profile image
66olives

Do you have vit D or magnedium results? There is a correlation between low vitamin D or magnesium levels and low T4 to T3 conversion.

sea-elf profile image
sea-elf

When converting T4 to T3, the body uses deiodinases. If your TSH is too low, fewer deiodinases and less conversion to T3. Since your TSH is very low, well below the limit, and your FT4 is in the upper range just below maxium, it's possible you're overmedicated and less able to convert T4 to T3. T3 is the only usable form, so you would potentially feel a bit hypo in this case, which makes it understandable why you'd be afraid to have a doc lower your dose. However, reducing it slightly might help you convert better and raise your T3, leaving you feeling a bit better. Maybe privately at home reduce your dose a bit by 25, and retest using a home test in 6 weeks, see if your T3 goes up a bit, keep track of how you feel? If you feel better, YAY! If not, you can go back up to your previous dose without having to fight the doc for it.

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