any one like me??

[Clauds123]

***Edited post to add bloods history***

not as many T3 readings as often they refuse to test it

T3 (normal range 3.1-6.8 pmol/L)

20/3/23 - 2.8

13/11/23 - 2.8

Started taking Tiromel December 23 so yet to test

T4 (normal range 11.3 - 21.6 pmol/L)

20/3/23 - 12.3 (after which started on 25mcg levo)

9/5/23 - 13.8 (after which increased to 50mcg levo)

4/8/23 - 14

13/11/23 - 16

Kept dose at 50mcg since May 23

TSH (normal range 0.27 - 4.20 mu/l)

20/3/23 - 1.41 (after which started 25mcg levo)

9/5/23 - 1.5 (after which increased to 50mcg levo)

4/8/23 - 0.65

13/11/23 - 0.75

Hi, I’ve had a right struggle to get any doctor to listen when it comes to my issues with years of Amenorrhea (Lack of periods), struggle maintaining healthy weight despite strict diet/exercise, sluggish digestion, low HR.

Finally in March 23 after a boarderline t4 blood result (12.3pmol/L), my endo agreed to letting me try low dose T4 (25 microgram levo) as the other alternative was HRT. At the age of 41 they didn’t want lack of menstrual cycle and therefore low progesterone impact my bone health. Infact both progesterone and estrogen are low, as well as a clearly struggling thyroid.

My T4 has been on the low side for as long as I can remember but I’ve always been told I’m not hypo as my TSH is normal rather than high, pre Levo it was 1.41mu/L. I was so happy when they let me try Levi thinking it would be the solution to all my problems..

In May they reluctantly let me increase Levo dose to 50micrograms. I’ve had none of the side effects they warned me about such as rapid heart rate, palpitations etc.though my resting HR did increase slightly from being really low (sometimes as low as 46bpm) to 55bpm.

Amazingly my periods that have been non existent for the past 6 years, returned and are on a regular 30 day cycle which I’ve never known. My energy is slightly better too.

Unfortunately my digestion is still sluggish and I still struggle with very easy weight gain, to the point I feel I have to constantly restrict and it’s really miserable! Infact since taking Levo it has increased by around 7lbs which is a lot considering I’m only 5ft3.

My T3 results have remained low at 2.8pmol. My endo said he couldn’t prescribe T3 but said it may help so I sourced it privately through a recommendation from this forum. My endo advised 5mcg Tiromel/day which I’ve been taking, but just after Christmas feeling no different I increased it to 10mcg/day (he doesn’t know this yet!!). Still not seeing much difference but it’s only been a few weeks..

What’s best to do? Endo wants to re-run my bloods in Feb. He is keeping an eye on my TSH which dropped to 0.75mu/L since taking Levo. People have said on here that my Levo dose at 50mg/day needs to increase but I am terrified endo will withdraw it altogether!

Anyone had a similar journey, particularly with PCOS or low progesterone/estrogen?

Any words of advice or ideas what to do next?

Current bloods on 50mg Levo and 10mcg Tiromel:

T3 2.8pmol/L

T4 16pmol/L

TSH 0.75mu/L

thanks!

[FallingInReverse]

Hi there, your bloods from 1 month ago before you added the T3 are identical to the ones you posted above.

Are the above actually pre- or are they post-T3? Based on your posts it looks like these are maybe from 4 weeks ago when you were on Levo only?

If you can provide the dates and also the reference ranges of your bloods that would help the forum better respond!

[Clauds123 in reply to FallingInReverse]

Sorry t3 is the same, March 23 - Nov 23 so Levo had no effect. Started T3 December 23.

I’ve updated post with full bloods history and normal ranges.

Thanks

[Fizzwhizz]

I don’t have great advice as I’m learning all this and am undiagnosed currently but I’m in your situation with similar low T3/4 but just in range and TSH in range. Your symptoms are similar to mine other than my appetite has disappeared so I’m not gaining weight but maintaining it on very little food. I’m on HRT and have attributed so many symptoms to menopause which were in fact due to hypo. I’d always suspect thyroid issues for years but just accepted my bloods were normal. My HRT is private and so I’m constantly having my doses adjusted as I have never really had my hormones balanced which is the aim of the treatment. Obviously now suspicious my thyroid isn’t working it makes sense as HRT can’t be optimal to find that sweet spot unless other body systems are functioning. My body’s also slow to clear out the oestrogen which I know from tests and this concerns me. I read this is due to thyroid dysfunction as well. The aim of treatment is to feel well and you know how that feels for you so if you’re still symptomatic keep notes, read, research then go back and calmly present you case.

[Clauds123 in reply to Fizzwhizz]

Thanks. They were really pushing for me to start HRT at 41 but I wasn’t menopausal and my bloods proved it (basically all hormones low). The one thing is the return of my periods to a regular monthly cycle which I’ve never had, ever! As in early 20s was diagnosed with pcos so had my 2 babies via clomid. So in that respect the Lego has helped, but general metabolism needs a further boost I think!

[Fizzwhizz in reply to Clauds123]

Yes, don’t be pushed into stuff. I’m wondering now if lots of my menopause symptoms were in fact thyroid, huge overlap, and if I get thyroid improved whether I’d need HRT or as much!

[Clauds123 in reply to Fizzwhizz]

Who knows!! See how you go.

[WaystarRoyco]

I’m not an expert but I think it would be helpful to others if you edited your post to put ranges in brackets after your results. Based on ranges I’m familiar with, your FT3 looks below range and your FT4 not even mid range. Also 50mcg levothyroxine is a starter dose and I’d have thought you would want to see if you could raise FT3 with more levothyroxine before adding T3.

[Clauds123 in reply to WaystarRoyco]

Thanks I’ve added those in now.

[Clauds123]

thanks I’ve edited with blood results now

[SlowDragon Administrator]

50mcg Levothyroxine is only standard STARTER dose so hardly surprising your Ft3 was low

In ideal world dose levo should slowly be increased up to full replacement dose over 6-12 months BEFORE considering adding T3

Because adding T3 will reduce TSH making it difficult/impossible to get dose levo increase

Why on earth didn’t endo increase Levo ?

ESSENTIAL to also test vitamin levels at least annually

Current bloods on 50mg Levo and 10mcg Tiromel:

T3 2.8pmol/L

T4 16pmol/L

TSH 0.75mu/L

Please add ranges

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

When were vitamin D, folate, ferritin and B12 last tested

Have you had thyroid antibodies tested ever

[Clauds123 in reply to SlowDragon]

I’ve added ranges to my post now. Vit D tested a few years back so prob need to repeat though I am taking daily 3000IU spray.

Antibodies last tested March 23 and were normal at under 0.4 (range 0.0 - 0.4 IU/L).

I’ve pushed and pushed even for endo to let me try Levo, it’s literally taken years as I’ve always been told thyroid normal as TSH not high. But as you say, I am still on starter dose and I fear they may reduce or remove altogether if TSH drops further. Which it will if I’ve started T3.

For all my blood tests they were taken in the afternoon and after meds as only seen the advice on forum recently. Got to retest in Feb.

[SlowDragon Administrator in reply to Clauds123]

Test folate, ferritin and B12 as well as vitamin D

And need to test BOTH TPO and TG antibodies privately

Significant minority of Hashimoto’s patients only have high TG antibodies

PCOS and Hashimoto’s frequently linked

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

[Clauds123 in reply to SlowDragon]

Thank will look into that

[SlowDragon Administrator in reply to Clauds123]

Suggest you get FULL thyroid including BOTH thyroid antibodies and vitamin testing privately BEFORE next consultation

[SlowDragon Administrator in reply to Clauds123]

I fear they may reduce or remove altogether if TSH drops further. Which it will if I’ve started T3.

For all my blood tests they were taken in the afternoon and after meds as only seen the advice on forum recently. Got to retest in Feb.

As it was your endocrinologist who suggested you add T3 you should still be able to get dose increase in Levo

The most important results are ALWAYS Ft4 and Ft3

Many (most?) on Levo plus small doses of T3 find they need BOTH Ft4 and Ft3 at least 60-70% through range

Ensure you test correctly

[SlowDragon Administrator]

Approximately how much do you weigh in kilo

Which brand of levothyroxine are you taking

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

[Clauds123 in reply to SlowDragon]

Hi I’m 59kg. Using Teva brand of levo. I am 42 years old. Thanks

[SlowDragon Administrator in reply to Clauds123]

So likely daily dose levothyroxine if JUST on levothyroxine ONLY is approximately 94mcg per day

[Clauds123 in reply to SlowDragon]

I’ll need to convince my endo .. otherwise find more levo elsewhere.. it’s a constant battle..