NHS endo refused LIO trial based on these latest test results

[bluejourney]

I still feel lousy and hypo. I’ve been on 87.5 mcg Levo since December 2022. I weigh 9 stone (57 kg), usually cold - basal temperature 36.2, or sweating, basically poor temperature control, fatigue, digestive problems, constipation, exercise intolerance. My LDL cholesterol is high at 3.4 nmol/L (1.0-3.0). Having said that, I have more energy and sleep is better than on my previous dose of 75 mcg. I’m on Levo monotherapy and a steroid, Fludrocortisone, for low BP. Am post-menopausal.

I have an annual appointment with an NHS endo, and I asked him for a trial of T3, which I know in theory I am entitled to ask for if I’m not well on just Levothyroxine. The blood tests he did (9am fasting before meds) were as follows:

TSH: 0.07 mU/L L (0.35-5.00)

FT4: 15.5 pmol/L (9.0-22.0) ( 50% through ref range)

FT3: 3.4 pmol/L (2.4-6.0) (27% through ref range)

25 OH vitamin D: 101 nmol/L (50-200)

Vitamin B12: 554 ng/L (200-910)

No folate or ferritin tests, but folate usually high in range and ferritin usually too high.

My test results when on 75 mcg Levo December 2022 (Medichecks) were:

TSH: 1.69 mU/L (0.27-4.2)

FT4: 15.4 pmol/L (12-22) (32% through range)

FT3: 4.29 pmol/L (3.1-6.8) (34% through range)

So it looks to me like on the higher dose of Levo my FT4 has gone up but my FT3 has gone down and is too low for me to feel well, and conversion has got worse, and TSH is suppressed, to my mind a good case for a trial of T3, but the endo ‘s letter states:

“The FT4 was 15.5 ie well within our normal range. The FT3 was 3.4 which is nicely in range (2.4-6.0). The TSH was suppressed at 0.07. These results do not indicate thyroid hormone under-replacement, if anything they suggest that there is somewhat over replacement. Given that FT3 is in range, there is no suggestion of poor T4 to T3 conversion issues. There is no indication therefore to change to a T4/T3 combination.”

All I can say is that I’m not functioning well on this “nicely in range” FT3.

I’d be extremely grateful for any advice or comments before I write a reply to him.

[Jaydee1507 Administrator]

How are you taking your blood test? Do you remember to leave a 24hr gap between last Levo dose and the blood draw?

The fludrocortisone might be affecting your TSH, I hope your Endo realised this.

Your December results show reasonable conversion but you likely needed at least one more dose increase.

Not all Endo's are on board with T3, in fact many aren't. You can email [e-mail] for a list of T3 friendly Endo's.

How are your vitamins looking and what are you supplementing with? This is important to help thyroid hormone work well. Low vitamin levels can also reduce TSH.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

[bluejourney in reply to Jaydee1507]

Thanks for your reply. Yes left 24 hour gap before testing. Same brand of Levo. Yes have Hashis. Vitamins are reasonably good - have posted test results. I supplement vitamin D, B12, A and C. Am gluten and lactose free, and only have a small amount of lactose free dairy. My stomach acid is high not low (tested on the Heidelberg test). I also have methane SIBO - waiting for a gastroenterology appointment. I mentioned to the endo that the steroid might be lowering my TSH, but he didn’t think so. Am only on a low dose (half a tablet).

[Jaydee1507 Administrator in reply to bluejourney]

Sorry, didn't notice the vitamin results. B12 should be higher is supplementing. I'd recommend an active/methyl type B complex to keep all the B's in balance. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...

Has anything else changed between the December and current results?

Might be an idea to try a different Endo.

[Lalatoot]

In a normal person ft3 would lag slightly behind ft4. So normally you would expect ft3 to be into the late 40%s through range with an ft4 at 50%. So going by normal your ft3 is out of step with ft4 suggesting the need for a low dose of lio.My TSH was under range, ft4 60%, ft3 17%. I pointed out that ft3 was consistently out of step with ft4 and that I was symptomatic. I also pointed out vits were optimal and I took my levo away from food etc. This got me lio on the NHS.

[bluejourney in reply to Lalatoot]

Yes, that’s what I was hoping for, a low dose of Lio. Saying I was symptomatic didn’t hold any water with him. Well done on getting your prescription.

[SlowDragon Administrator in reply to bluejourney]

Suggest you consider seeing someone else…..privately if necessary

List of thyroid specialists and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

Roughly where in U.K. are you

Have you done Dio2 gene test?

[bluejourney in reply to SlowDragon]

Hi. Yes the gene test was ok.

[bluejourney in reply to bluejourney]

I’m in SW London.

[SlowDragon Administrator]

have you signed the petition

petition.parliament.uk/peti...

[waveylines]

Sorry to hear the Endo seemed to think everything is trickety-boo. 🙄😤 I'd definately see someone else. Did he not even suggest raising your levo? I know that might seem a bit mad but it's worth a try... You have room to do so.

[bluejourney]

No, he suggested lowering my Levo! I gave a very firm NO to that, so he didn’t lower it in the end.