Seeing Endocrinologist next week, finally!

[Jenny583]

Seeing Endocrinologist next week, finally!

I can't find the blood test results - which I'm sure I posted on here, from my last printout from a few months ago.

The only thing I recall is that the TSH was 0.2 in a starting range of 0.5. So it was under range, & the FT3 & 4 were around a third into range.

I had not seen a GP for months, the printout came in the post about a fortnight after the draw, with the usual "everything fine & dandy" header. And this time everything was - except for the TSH, everything else was in range, although there were very few things tested.

Then out of the blue around 6 weeks ago I got a letter (NOT from the GP, from metabolic medicine dept ) it must have come via the hospital where I had the blood taken, asking me to get a blood draw again 1 week before appointment with an Endocrinologist.

The test was just for tsh, t3 & t4.

I have been taking Metavive, which is what would have put the FT3 & FT4 in range, & it would have suppressed the TSH, which was already low, in spite of a borderline t3/4 which before self medication made me feel very ill, then privately sourced T3, then metavive ndt got me on my feet.

I wonder what the Endo will make of all this? Would he perhaps have me clapped in irons & try & persuade me that I'm hyper, & want my thyroid ripped out - like a nasty GP did? I cut the dose in half the day before, & left 24 hours before draw. I was fine going out, so I figure I'm likely in range now.

Jersey is no place for the decrepit, so I'm extremely grateful to you guys xx

I will report back with any news.

[green-rose]

Good luck! Im very new to all this but after months of feeling ill and a disastrous g.p. Appointment two weeks ago I've opted for a private endo appointment. Hope it goes well and you get something helpful-i really do feel that we have to become experts on our own conditions when faced with such inadequate medical care.

[Jenny583 in reply to green-rose]

Hi there!

So pleased you found a good private Endo. Sadly we can't see private Dr's here. We pay for GP, but not for specialists, hence it's impossible to act on our self education, as we have to resort to trickery & panic the Dr's into referring us to specialists!

Not always possible though.

Take care.

[Jenny583 in reply to green-rose]

Let us know how you get on with the private Endo.

Good luck!

[SeasideSusie Remembering]

Jenny583

To find your previous posts, click on your username or your avatar and that takes you to your profile page where you will see all previous posts/replies.

These are the results that you posted here 7 months ago:

TSH - 0.62 mU/l (0.50 - 5.00 )

FT4 - 11.7 pmol/l ( 10.0 ) - 25.0 )

FT3 - 4.3 pmol/l ( 4.3 - 8.1 )

healthunlocked.com/thyroidu...

I cut the dose in half the day before, & left 24 hours before draw.

That wont give a true reflection of your normal circulating hormone. When on Metavive you treat it like NDT for blood tests - you take your normal dose the day before the test but ensure your last dose is 8-12 hours before the blood draw (even if it means splitting the dose and retiming it for that day).

What the endo makes of it depends on what your new results look like and whether you tell him what you are taking and if he agrees with it. If your endo is anything like many NHS endos here in the UK, then you might not have the best outcome.

[Jenny583 in reply to SeasideSusie]

You said; "If your endo is anything like many NHS endos here in the UK, then you might not have the best outcome."

Yep. that's what I'm afraid of. I was resigned to just trying to put my affairs in order & quietly slipping away, but then it seems I may have to write a very important book! -among other things...

The brain fog would mess things up for a lot of people, if I can't get my act together & I don't even know if I'm brain damaged. Also severe chronic depression complicates things even more. I can't find a way of getting my adrenals or HPA axis tested either - as private consults are not an option here.

[Jenny583 in reply to Jenny583]

I tried finding the last printout, but all I could find was the Oct 2008 one that you mention, that was the one where I had to take NDT hours before the test - as I could not get out of bed before I took that 2nd dose.

After that I titrated up slowly to where I am now, which is quite a high dose. I don't suppose the endo would consider letting me have a thyroditis antibody test? I am always totally honest with everyone, even Dr's BTW.

[Jenny583]

I forgot to add; I bought some Abdi Ibrahim Tiromel a few months back, I will test them again'st the Metavive after Iv'e seen endo. I could buy some more right now a lot cheaper than the last lot.

I hope they are the real thing, as I felt much better on the T3 than on the present regime of ( mostly rice flour) "Metavive".

Anyone else tried "Tiromel" from a UK shopping site?

Thanks.

[Jenny583 in reply to Jenny583]

Update!

In order to help me decide whether to buy the T3 that's on offer online, I took 15mg of the T3 that I bought last year, yesterday PM, (in addition to the metavive that I take AM.

I had several cups of coffee this AM though, so that may be a factor. I have a sudden craving for eggs & coffee this week - strange.

But anyway.

Wow! it's the real thing. I feel almost normal - for the 1st time in decades!

The T3 is more economical than the metavive too.

I was clearly not taking enough T3 before.

I will tell all this to the Endo Dr I'm seeing on Wednesday, & compile a report on my clinical signs.

I just hope he's not a Psychopath, like most Dr's in Jersey, ( they are brought over from the UK NHS after all.)

I just hope the offer on the T3 is still available to buy, I'll check now.

[Jenny583]

I'm gutted. It's gone. The last 1 sold.

Now I'll have to wait till another offer comes by, & probably have to pay through the nose for it.

Hope I don't run out before the next available offer!

I need this hormone to function on a basic level. Brain fog costs me dearly, & the T3 definitely helps me to make phone calls & emails.

[mikkymouse]

Good luck with the encro. There is no end to all the ignorant drs out there is there. I hope this one is the answer to your prayers.

[Jenny583 in reply to mikkymouse]

Gee thanks mikkymouse.

This is to be the 1st, and possibly last visit to the Endocrinologist.

After which I will - like others have to source T3, & adjust by symptoms.

I suspect the only reason that I was summoned to endo is because the TSH is all but

disappeared lol! & yet T3 & T4 are - although in range, still rather low.

I just pray that the Endo can be persuaded to allow me scans, as the thyroid i.e. FT3 is the least of my problems now.

[mikkymouse]

I was very encouraged to hear how well the T3 worked. I just started taking a new med that had it in it. THYROID. A A natural one. NHT or something like that.

[Jenny583 in reply to mikkymouse]

That's great news! do you know how much T3 is in it? Were you able to get it on prescription?

I wish you all the best with the "Thyroid".

[mikkymouse]

Why do you want a scan? I don’t have a clue how much T3 is in the med. I was wondering if you felt bad when you first started taking the T3? I feel crummy after the second day on it. Why do we have to go through all this crap eh. Like my husband said, I must have pissed someone off in my past life.

[Jenny583 in reply to mikkymouse]

I was told by many on this forum that my blood serum results (after I was told by a then friend & this forum that I needed to get FT3 & FT4 tests), rather than just TSH.

When I got the results (twice a year thereafter), the steadily falling TSH AND the steadily falling FT3 & FT4 indicated a problem with the pituitary gland or the hypothalamus gland, rather than with say hashimoto's thyroditis. When friend gave me some old T3's to test myself with, this confirmed that I was indeed hypothyroid.

However here where I live (in a tax haven) GP's charge around £50, & you can't get private tests or treatment, No private Dr's (other than skin Dr's) & no investigation - at any cost, & so you have to study medicine via the internet, & then buy the only hormone available to buy on the black market, which is T3.

If you go to a private skin Dr, I have seen 2, he will be able to judge by your skin and hair if you have a failing pituitary gland, but you still can't get an appt with the only Endo. Phew. Sorry, but it's a tiny island, & the health service here is a private business.

Nothing like in UK. I am hoping that I can persuade the metabolic dept to monitor my self treatment too.

[mikkymouse in reply to Jenny583]

Wow. And I thought we had problems here in Canada. That’s too bad.

[mikkymouse in reply to mikkymouse]

On a plus note, the weather is probably way better than in England it Canada. Lol

[Jenny583 in reply to mikkymouse]

In your next life, try to ensure that it's not a. Budhist, or b. Hindu. Try to be Catholic, then when you die you won't come back to relive the same old sh*t storm all over again lol!

Oh, and 1 other thing, study and consult with the experts on this forum, & titrate up the dose slowly, that's what works for me anyhow.

Good luck!

[mikkymouse]

Darn. I had written you a funny response and lost it. I didn’t push reply hard enough. Karma must be getting me for all the bad things I’ve done lol.

Actually I was born and raised Catholic so instead of coming back to the same crap I will be in Hell lol.

You did make me laugh. Thanks for it. I need it today. I’m off to get a hair cut and the way our day is going she’ll probably butcher me lol. Not going to repeat my day or rather my husband’s. Too long and you may see it on here anyways.

[Jenny583 in reply to mikkymouse]

Hope you had a good hair cut, and that you won't end up in hell on a charge of vanity lol.

How are you doing? I'm just about to have a look at your latest post, but I can only have a quick look, as I need to get on with some chores. I will have a better look this evening - I hope.

You are in my thoughts and prayers.

I am Catholic BTW!

Take care.

[mikkymouse in reply to Jenny583]

He there. I had a feeling you might be Catholic but because you came from Belfast I didn’t dare ask lol.

Yup, haircut was good but not good enough to go to Hell because of vanity lol. Too old and feeling ugly to be accused of vanity.

Sheila

I do believe in prayer so even one would be lovely.

[Jenny583 in reply to mikkymouse]

Aw, bless you. I'm sure your not ugly! or vain. I wouldn't mind a hair cut myself, but I have virtually no hair left. So I will have to resign myself to dying a virgin.

BTW, I am not from Belfast lol. Jersey is a small self governing tax haven banana republic 10 miles from western France! commonly known as a 'Crown dependancy' or as we proles call it a 'kleptocracy'...

My Mother was Italian, that's why I got dunked as a baby.

Now to find those rosary beads...

[mikkymouse in reply to Jenny583]

Boy, am I ever getting mixed up here!! I can’t believe it. Anyways, gotta day that you are one of the fun ones in this forum. I LOVE that! Life sucks enough so why not add a bit of humoured. Kind of got told off for that lol. I meant to be pm someone who I thought was you.

I guess where you live there isn’t any naturopath that can prescribe T3 eh.

Were you originally from England?

Why do you have the cue ball look going on? Alopecia? I feel so bad for you because I know what it’s like. When I was going through chemo two years ago I resembled Humpty Dumpty hair wise. You can tell from my photo here that I am hairy once again. It came in grey though and I was blonde before it all.

No, small children don’t cry when they see me so I guess I don’t look too bad lol.

Nice talking to you. Hope you find those beads lol. I lost mine a few years back.

Sheila