Preparation for First Endo Appointment

[AtemiM]

Good afternoon all,

Just looking for some advice to arm myself before my first Endo consultant appointment next week.

I’ve been taking 50mcg Levo for the last 8 weeks. I requested GP review bloods (prior to my first appointment with the Endo consultant on 5th April) so I could control how the tests were taken (i.e. no food, early morning, adjusted Levo schedule). Newest results are as follows (I will put a table of the previous results in the replies):

TSH – 4.77 miu/l, 0.49-5.23 (90.30%)

T3 and T4 not done – quite irritated at this as the GP had specifically listed them on the bloods form (at my request) but the lab did not complete them. I assume based on a cascade system (as TSH was “in range”). Annoying.

Ferritin – 10 ug/L, 10-291 (0.0%) - still rubbish even after a month of ferrous fumarate tablets.

Folate – 5.8ug/L, 5.4 –

B12 – 361ng/L, 211-911 (21.43%) - B12 supps are next on my list to add.

VitD wasn’t included (even though I’d requested it). Seems this is pretty standard after they have given a loading dose though, they just assume it is miraculously fixed?

I’m seeing the Endo as I had very high TPO Antibodies in June 2021 (413.0U/ml, 0-59 (700.0%) and the GP agreed to a trial of Levo (as I argued under the NICE guidelines that I have had more than 2 TSH levels above 5 in recent tests).

I can see from the many helpful posts here that when taking Levo I should be aiming for a TSH level between 0.5-2.0 and T3/T4 in the higher end of the range.

I thinking its appropriate to request a step up in Levo prescription to 75mcg? My symptoms have been greatly improved with only a couple of flare ups of joint pain, much less fatigue and brain fog, less hair loss and cold sensitivity. I do still have some peripheral neuropathy and tinnitus (although I suspect the tinnitus is B12 related. That will be the next supplement I add, I’ve been slowing adding things with a few weeks to adjust and check for reactions).

I have no idea what the Endo I’m seeing next week is like (I’ve emailed the thyroidUK email to ask if there is any available feedback on him). My appointment is scheduled in the diabetes centre at the local hospital (which just about sums up my expectations after reading posts on here!!).

I’ve printed all of my results over the last year, calculated percentages through ranges, printed some articles recommended here regarding optimum TSH levels.

Is there anything else I need to think about to be forearmed before I go for the appointment? Really don’t just want to be binned off because my TSH is now “in range”.

On a (somewhat) separate note but for info, I also have an endoscopy for a small bowel biopsy on Friday (1st) after a Gastro appointment last week to confirm diagnosis of coeliac disease.

Thanks in advance for your input.

Mx

[AtemiM]

Previous results table:

Table of test results

[shaws in reply to AtemiM]

Before supplementing with B12, your GP should check that you do not have pernicious anaemia.

Your TSH is too high - the aim being 1 or below.

Your vitamin D is too low.

[AtemiM in reply to shaws]

Thanks shaws

There was a Full Blood Count included in my most recent bloods. Haemoglobin results (including MCH and MCV) were all fine and erythrocyte Sed rate has fine, so I don't think there is indication of pernicious anaemia.

I suspect the B12 deficiency relates to coeliac disease (I have moderate/strong positive IgA test and have endoscopy this Friday for small bowel biopsy to confirm coeliac diagnosis).

I've had loading dose of D3 since the last VitD test (January) and am continuing with a maintainance dose (3000 ui daily with the BetterYou D3/K2 spray recommended here). Unfortuantely, the new bloods didn't include a repeat Vit D (despite me asking for it). I will continue supplementing for a few months with the spray and get a private Vit D test done to check levels again.

Mx

[shaws in reply to AtemiM]

That sounds as if you've got things under your control at present.

Best wishes.

[greygoose]

Just a couple of points I'd like to make to stop you dwelling on irrelevancies.

1. There's no such thing as an 'optimal' TSH.

TSH - Thyroid Stimulating Hormone - is a chemical messenger from the pituitary to the thyroid to tell it to make more thyroid hormone. So, the lower the thyroid hormone, the higher the TSH (with certain exceptions).

A euthyroid (i.e. with no thyroid problems) TSH is around 1. So, once the TSH goes below 1, it ceases to be of much relevance. The important numbers are the actual thyroid hormones: T4 and T3. Once the TSH gets below 1, it doesn't drive the thyroid hormone levels, it follows them. But, the TSH can go down quite a bit while your FT4/3 are still too low to make you well. The TSH level doesn't always correlate with the FT4/3 levels, so you cannot have an optimal TSH level.

2. Percentages through the range are only really useful for the FT4 and FT3 to make it easier to compare them, to understand conversion. For the TSH, not even the range is useful once you know that a euthyroid TSH is around 1, never over 2, and you are technically hypo when it gets to 3.

With antibodies, if they're under the top of the range they're negative. And over the top of the range is positive. It really doesn't matter how much over the range they are, positive is positive.

With most nutrients they need to be at least mid-range, etc. So, there's really no point in working out the percentages for everything. And, I very much doubt if any doctor would take any notice of that, anyway. So, not worth the effort.

[SlowDragon Administrator]

GP could/should have started levothyroxine in June 21

Dose levothyroxine should be be increased slowly upwards in 25mcg steps until TSH is always below 2

Most people when adequately treated will have Ft3 at least 50-60% through range. On just levothyroxine that’s likely to mean needing Ft4 (levothyroxine) at least 60-80% through range

NHS only tests and treats vitamin deficiencies

They are rarely interested in patients having optimal vitamin levels

Essential on thyroid replacement hormones to have all four vitamins improved to optimal levels and maintain at good levels

Low ferritin likely to take many months to improve, and low thyroid levels and still eating gluten won’t be helping

Once you have had endoscopy you can go absolutely strictly gluten free

When Ft4 and Ft3 are optimal, and absolutely strictly gluten free, you may find it easier to maintain optimal ferritin (that’s ferritin at least 50% through range )

Test vitamin D twice year when supplementing

Are you currently taking any magnesium supplements

[AtemiM in reply to SlowDragon]

Sadly, my GP missed the TPO antibodies and high TSH in June as I also had raised Rheumatoid Factor so he was sure I had Rheumatoid Arthritis (rheumatology consultant confirmed definitely not RA with xrays).

I've started taking magnesium about 10 days ago. I will give that another week before I add the B12 complex as well.

I will push for 25mcg incremental raise when I see the Endo consultant next week.

Thanks

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

The only brand that makes 75mcg tablets is Teva

Teva brand upsets many people

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...