TT and tsh

[paul1979]

Hi all

Just a quick question

Has TT due to cancer. It was contained with in the thyroid so no spread

I know TSH has to be suppressed under 1

What will happen to me if it stays above 1 for a long period of time?

Thanks you

[Hay2016]

They want it below 1 so any remnants won’t be activated to try produce t4 which may lead to any cells that escaped being activated elsewhere in body and producing a growth there. If def nothing escaped then theoretically nothing but but but ......... did they do rai?

[paul1979 in reply to Hay2016]

Hi

Yes I had rai.

My T4 is high and T3 in middle

But I am having really bad anxiety and all the endo wants to do is put my levo up

I know this well make me worse

I was think of dropping levo back to 150 we’re I was ok and good energy

But my TSH will go up

What to do. I am at my wits end

[shaws Administrator in reply to paul1979]

What have you been prescribed to replace your thyroid hormones?

[paul1979 in reply to shaws]

Levothroxin shaws

[shaws Administrator in reply to paul1979]

Well, I feel very sorry for you Paul1979 - the reason?

I have my thyroid gland but levothyroxine made me far more unwell than before I diagnosed myself when TSH was 100 (not one professional diagnosed me but gave me plenty of other reasons).

Considering that our body cannot function without sufficient T3 (should convert from the inactive hormone, i.e. T4).

Our body has millions of T3 receptor cells and it needs it in order for our body to function normally. Our brain and heart have the most T3 receptor cells.

Therefore, it would be kind if they could prescribe a T3/T4 combination for you as you have no thyroid gland at all. I have my gland but was so unwell on levo that the addition of T3 was amazing. Even my skin felt as if could breathe.

I know they've withdrawn this Active Hormone because of the expense but it is our life and we didn't ask for the thyroid gland to pack in. On compassionate grounds they should give you a T4/T3 combination to see if it improves your health. Research has shown a recommendation or 3:1 or 4:1 combination T4/T3.

A test which includes Free T4 and Free T3 should show where these two are in your blood.

[paul1979 in reply to shaws]

Thank you

[paul1979 in reply to shaws]

In the endos letter has put the following

Indicative of peripheral thyroid hormone resistant

And

Paul is aware that therapeutic options are limited is the beta blocker strategy does not work

[shaws Administrator in reply to paul1979]

So to quote endo "Paul is aware that therapeutic options are limited if a beta blocker strategy does not work"

Well, if you are Resistant, you need T3 alone. Not T4 as you're body cannot convert it to T3. It is a ridiculous comment he's made as it seems he will not prescribe - even a trial of T3 if you are resistant.

If we are resistant there's no way T4 will help you, as far as I've read and also keep in mind I'm not medically qualified but am going by my own personal experience of hypothyroidism.

If he states or cannot provide T3, I'd write to Lord Hunt in the House of Lords and I'll give you some information.

Just last week the Scottish Parliament who've been dealing with this Bill for four years of the problem of people not being prescribed optimum hormones that 'suit the patient' have passed a Bill that enables people to be prescribed, NDT, T3 only, and whatever makes them well i..e T4/T3 etc.

healthunlocked.com/thyroidu...

thyroiduk.org.uk/tuk/campai...

Also contact your local MP.

[Hay2016 in reply to paul1979]

Yep. Grey hair territory!! Fight for t3 and fight some more!! I bought some with script privately but gp has now left so fighting with head of surgery!!

Wanted to see if it would make a difference it does but now hubby having fits after reading gp letter so will go to levo for 6 wks till endo in April.

I’m sure shaws will advise infinitely more eloquently than me as seem to be battling to do anything last few days.

Xx

[paul1979]

Thank you.

My T4 is 22 over range on 175mcg

And T3 4.3

I must be converting something?

[SeasideSusie Remembering in reply to paul1979]

Paul1979

Yes, but not well enough, as pointed out in previous replies to your other posts, you need T3.

[paul1979 in reply to SeasideSusie]

Thank you. I am going today and going to kick off In a nice way lol

[SeasideSusie Remembering in reply to paul1979]

Good luck. Let us know how it goes.

Just as an example - my own personal experience (and I didn't have TT, I'm just bog standard hypo) my old GP, trying to help, kept raising my Levo. I ended up with FT4 being 165% of range with FT3 55% of range so I was converting some but needed a massively high FT4 to reach mid-range FT3. This is when I'd had enough of the NHS not understanding how to treat, discovered all the information I needed here, sourced my own T3 and lowered my Levo. I have sorted myself out ever since.

[paul1979 in reply to SeasideSusie]

Cool. Can I ask is there a difference between T4 and ft4 and ft3 and T4

They only do

The

T4

T3

On me

Thanks

[SeasideSusie Remembering in reply to paul1979]

Paul

Yes. Often T4 and T3 mean Total T4/T3 and those aren't useful tests, it gives total hormone amounts - bound to protein and unbound (free). The amount of unbound hormone available to the cells is very small compared to the total amount.

FT4/FT3 are Free T4/T3 and the amounts of each hormone available to your cells. It's the Free hormone results that tell us what we need to know.

However, when just "T4/T3" are used, we don't know if it's Total or Free (which is why we ask when members don't differentiate).

We can often tell from looking at the ranges that go with the results, the Free tests tend to have much wider ranges than the Total tests can be very narrow (especially if US ranges), although Blue Horizon's Total T4 range is 66 - 181.

Looking at your results of:

T4 22.4 (10-21)

T3 4.3 (3.5-6.5)

I am 100% certain that these are Free tests.

FT4 usually has a range width of 10, 11 or 12, which fits your your range of 10 - 21. Medichecks and Blue Horizon are 12 - 22, and we often see here on the forum 7 - 17 (my NHS lab's range), and another NHS range seen is 9 - 19.

FT3 usually has a range width of 3 - 3.7. Medichecks and BH range is 3.1 - 6.8. My NHS is the same as yours: 3.5 - 6.5.

[paul1979 in reply to SeasideSusie]

Gp was a waste of time. Told Togo back to endo. So I am going to write a very strong letter and get an earlier appointment with him. Demand time

[SeasideSusie Remembering in reply to paul1979]

Oh dear. Hopefully better luck with the endo. Don't hold your breath though

[paul1979 in reply to SeasideSusie]

Hi susie. Would you know what risk I would be taking to my self if I drop my levo and let my TSH go up?

I would rather be hypo than anxiety

I did have rai

[SeasideSusie Remembering in reply to paul1979]

If you reduce your Levo, your FT4 will go down, your FT3 will probably go down too. I don't know how long it will take for your TSH to rise or how you will feel during this time.

My own personal experience is that I saw an endo who didn't like my suppressed TSH and wanted it in range. At the time my FT4 was 23.7 (11.8-24.6) and FT3 was 5.2 (2.8-7.1) so both FT4/FT3 in range. But he insisted I reduced Levo to bring TSH into range. It took 4 months and I achieved a TSH of 0.4 (0.27-4.2) and my FT4 reduced to 15.6 (11.8-24.6) and FT3 was 2.8 (2.8-7.1). As you can imagine, with my FT3 right at the very bottom of the range, I was extremely unwell and remained so for many years until I found this forum, learned a lot, and helped myself.

But I didn't have a TT, I was just bog standard idiopathic hypothyroid when diagnosed 26 years before. And I've never suffered from anxiety.

[paul1979 in reply to SeasideSusie]

I was great on 150mcg levo

Good energy and no anxiety

I am just worried that if my TSH goes up the cancer could come back ?

[SeasideSusie Remembering in reply to paul1979]

I don't have any experience of thyroid cancer, so that's an area I haven't looked into I'm afraid.

Anxiety is a symptom of hypothyroidism. We know from your results that you are a poor converter, you have low FT3 compared to your FT4. You need T3. It's low FT3 that brings about symptoms.