I don’t believe it!

[Daisywhoopsa]

Morning all- apologies for the length of my post but I need your help. I emailed my (private) endo. I do get my T3 via NHS prescription. All tests are following the advised protocols.

I sent the following- Please see my most recent test results. This is with 75mcg Levothyrine daily and 30mcg Liothyronine daily (3x10).

I note both the TSH and T3 have decreased (%) further despite the increase of an additional 5mcg Liothyronine and the decrease of Levothyroxine from 100mcg to 75mcg following the previous test result. I have attached also the previous result from 100mcg levo and 25mcg T3.1

As I still have symptoms would you advise a further increase in Liothyronine and/or a further adjustment to the Levothyroxine?

Results from 17.01.22

TSH: 0.06 mU/l (Range 0.27 - 4.2) -5.34%

FT4: 11.4 pmol/l (Range 12 - 22) -6.00%

FT3: 4.4 pmol/l (Range 3.1 - 6.8 )

35.14%

Previous result 02.12.21

TSH 0.19mU/l (Range 0.35-4.94)

-3.49%

FT4 9.6 pmol/l (Range 9-19)

6.0%

FT3 3.8 pmol/l (Range 2.6-5.7)

38.71%

His reply-

“This is how it works: Lower the TSH the more over treated you are. In your case the TSH is still suppressed, so you are still over treated.

Within range fluctuations of T4 and T3 does not matter - it depends on metabolic demand. What we are effectively doing those for is to see which component we need to change to bring the TSH within range.

So since the T3 is where I want it to be, we need to take down the Thyroxine further based on these results - down by 25 mcg please. “

I want to run as fast as I can from this endo but Don’t want to risk losing my NHS T3 (shared care thing the endo advised me about it and my GP is happy to prescribe as long as an endo is overseeing it)

[Hidden]

‘The T3 is where I want it to be’ 🙄 seriously, what about where YOU want it to be/ where it needs to be for you to feel well. Speaks volumes. We are not lab rats.

Sorry can’t help with the medication side of things- novice here- Just noting the arrogance/ patronising tone of the ‘this is how it works’ etc

Obsessed with TSH. Only over range T3 can indicate over medication- that’s my understanding from reading on here.

[SlowDragon Administrator]

How do you do your thyroid test

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Day before test last 10mcg dose T3 approx 8-12 hours before test

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

What vitamin supplements are you currently taking

Are you on strictly gluten free diet or dairy free diet

[Daisywhoopsa in reply to SlowDragon]

Yes all tests done as you indicate. Supplements - selenium magnesium vit D spray and ferrous fumarate. Am due to retest vit D etc - last tests about 9 months ago showed low everything except B12 and have worked hard to improve them, eating pate etc. vit D 3,200 unit for over 6 months, now using spray. Trialled gluten free for several months last summer , didn’t help my symptoms and was very costly/ stressful to stick with etc. so didn’t continue. I haven’t trialled dairy free.

[DippyDame]

I'm not surprised you want to flee from this endo, he is clueless. Possibly a diabetic specialist...most of them are.Being a private endocrinologist doesn't make him more knowledgeable!!

He isn't capable if improving your health.

Can you speak to your GP and ask him to refer you to another endo, hopefully one who is better educated

For your information the TUK office can give you a list of doctors...

thyroiduk.org/help-and-supp...

So since the T3 is where I want it to be,

Really!! At just 35.14% through the ref range!!

Does he actually know what T3 is and how it works.

Has he ever asked you how you feel?

Arrogance personified!

Sorry, I'm ranting again, but I feel angry on your behalf.

There are far too many posts indicating a similar lack of knowledge amongst medics with patients suffering as a result.

It is a monumental scandal and, allegedly, tantemount to medical neglect

In your shoes I'd start running!!