Anyone with some advice/insight?

[Jayneywales]

Up until 2019 I was taking T3 plus T4 for a couple of years after a successful private endo appt Then the summons to the NHS endo who ‘demonstrated’ I didn’t need it. After nearly 3 years, I can’t get back to feeling great nor lose much weight. I have posted a series of results for any insight. GP made me REALLY cross last week by sending a text to tell me to revert my dose of T4 from 150/200 every other day to 125 - when my previous dose was 150! Unbelievable! I may have calmed down now enough to call him tomorrow and be passive aggressive enough to tell him the error of his ways. Back to seeing private endo? Any ideas gratefully received. Thanks

[greygoose]

Well, it would appear that you've always been under-medicated, both on levo and T3. But, I suppose, doctors have only been looking at that low TSH and want to get it higher. How long were you on T3 altogether? Because it's possible that your TSH might never rise. And, most doctors have great difficulty understanding that. Just as they don't understand that low TSH is not the problem.

[Jayneywales in reply to greygoose]

Thanks Grey Goose - was on T3 with T4 for about 2 years. Just a bit fed up of not feeling 100% but perhaps I am being unreasonable in my expectations. Despite being about (at least) 4 stone overweight, I sleep for 6.5 hours a night, have a resting heart rate of 59, and run 3-5 km twice a week at the age of 57(nearly 58)!

[greygoose in reply to Jayneywales]

Well, that's all very laudable, but could very well be that your FT3 is not high enough to sustain all that exercise, and it's affecting your conversion.

But, no, you're not being unreasonable to want to be optimally medicated. As I see it, that is a human right. And, at the moment you are under-medicated. And being dosed by a bunch of ignorant doctors that only look at the TSH, when they should be looking at the FT3. You need either an increase in dose, or to be put back on T3.

[Localhero in reply to Jayneywales]

FWIW I don’t think you’re being unreasonable in your expectations. I really don’t see why having a thyroid issue should mean a less than good life from a felt-wellness perspective. Keep chipping away at it. You’ve got loads of great advice here to work with 😊

[pennyannie]

Hello Jayneywales ;

The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when their conversion of T4 into T3 comes in at around 4 or under.

So to find ho well your are converting T4 into T3 you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.25 - so wide of the centre showing your conversion compromised.

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels so this might be an area to look and conversion can also be compromised by any physiological stress ( emotional or physical )m inflammation, depression, dieting and ageing so this again be an area look at.

I have read that switching back from T3/T4 combo to T4 only a challenge - your TSH may never respond as your doctor may like to believe it should - and in all honesty once on any form of thyroid hormone replacement the TSH is not a reliable measure of anything.

On monotherapy with T4 we should all be dosed and monitored on our T3 and T4 levels with the intention of trying to maintain around a 1/4 ratio- T3/T4 and with both T3 and T4 high enough in the ranges to be acceptable to the patient.

It may help you, it may not, just a thought and I'm sorry you've had this upset :

[Jayneywales in reply to pennyannie]

Penny Annie. Thanks. Maybe next steps are checking the levels of folate, b12 and vit D. Thinking of trying to see a medical practitioner who is interested in the ‘whole picture’ rather than just those magic TSH numbers Thanks

[pennyannie in reply to Jayneywales]

Yes, your not too far out from the mid point -

Optimal vitamins and minerals may just do it for you and the logical next best step that you can supplement yourself, as you'll likely be in the NHS ranges, but not high enough for optimal thyroid hormone conversion.

For reference the TSH was originally introduced as a diagnostic tool to help identify a patient suffering with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.

I didn't see your ferritin result this morning - so when mine came in at 22 and I started my research, everywhere I read stated that ferritin needed to be over 70 for thyroid hormone to work well and this was when I found this amazing forum.

I now find I feel at my best with a ferritin at around 100 - and weekly keep topped up with a little tub of Asda frozen chickens livers - defrosted, flash fried and whizzed down into a pate which I keep in the fridge and having a daily spoonful and a dollop of Hellmans helps this medicine go down - you might find iron bisglycinate - frequently marketed as a ' gentle iron ' kinder on your stomach - if this is the first step your considering to rebuild ferritin.

[Jayneywales in reply to pennyannie]

Thanks will look at gentle iron as chicken livers fills me with dread. 😁

[SlowDragon Administrator]

Ferritin is too low, but not low enough for GP to treat

You need vitamin D, folate and B12 tested

Was thyroid test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Do you have autoimmune thyroid disease (hashimoto’s)

Are you on strictly gluten free diet

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

Meanwhile working on improving low ferritin

Come back with new post once you get other vitamin results

[Jayneywales]

SlowDragon. Yes Hashis. Yes to testing regime - even stopped my Vit B for a week as previously hadn’t appreciated the cross-contamination issue. Take Vit D 1000 units but not b12/folate. Mostly gf. Various dosages of Levo - all 3 levels different brands! Inc Teva which I appreciate causes some problems. Back on the Iron then. And take GreyGooses advice too re dosage. Grrrrrrrrrr - why does it have to be so difficult.

[Charlie-Farley]

Hi Jayneywales - all becomes a lot easier when we realise the situation (dire) and start to advocate for ourselves as you are now doing. Many of us have had our conditions mismanaged.

I have read a whole book (🤣) some scientific papers and importantly lots of lived experience, which has deepened my understanding considerably.

The knowledge imparted and advice given by thyroid UK has literally saved my life…

[Jayneywales]

I read a whole load of books when first diagnosed. I think I may need to revisit and remind myself. Thanks for replying