Newbie needing your help, please!

[Mellybedhead]

Hello everyone,

I'd really like some advice re my recent blood test results. For background I was diagnosed with ME 9 years ago, thyroid was apparently fine. In 2011 after much reading I sought private treatment with Dr P including thyroid tests which revealed poor T3 conversion. After some joy on T4 I crashed badly and became unable to tolerate even a tiny amount of T4. Eventually I started on T3 and gradually built up to approx 55 micrograms (2 and 1/4) in three doses. I have ticked along quite happily and have definitely improved - I'm not bed bound and can read and type now, which is amazing. Anyway I foolishly went to the GP as I am losing my body hair ( have also gained weight ). She did blood test. 2 problems....

1. I haven't told them I'm on thyroid meds cos there's 'nothing wrong' with my thyroid and I am truely phobic of medics since some terrifying experiences around the time of my ME diagnosis.

2. The results are a bit off, I think so anyway but you guys will know better than me.

TSH = 0.01, FT3 = 7.3 ( top of range 6.5) and FT4 = 4.

NB My pulse has been a bit higher than usual over the last few weeks, but not beyond my healthy normal and certainly not troublesome. I am plannig to reduce the T3 by a quarter, initially and review.

Any advice or suggestions would be really appreciated, thank you.

[Clutter]

Mellybedhead,

If you allowed 12 hours between your last dose and your blood test then you are slightly overmedicated with FT3 above range and the 1/4 tablet (6.25mcg) dose reduction sounds like a good idea. Has your doctor not commented? One would think s/he would be concerned that your TSH is suppressed and your FT3 is elevated if you haven't advised that you are on thyroid hormone replacement.

I was also over range recently, FT3 8.4 (3.2-6.2), and reduced my T3 by half for 12 days to allow levels to drop before resuming reduced T3 30mcg + 75mcg T4. No ill effects so far and slight tremors have improved.

[Angel_of_the_North]

I think the lab techs would have guessed at T3 even if the GP doesn't. Or a T3 producing tumour of some sort. Be interesting to see what GP says.

[Mellybedhead in reply to Angel_of_the_North]

Thanks Clutter and Angel,

I have a telephone appt to speak to the GP on Wednesday ( # terrified!). The receptionist rang me to arrange it. She said the Doc had spoken to someone at the lab who suggested I might be taking herbal supplements with T3 in. She (Doc) probably not concerned about the TSH in that I feel she will have expected my symptoms of loss of body hair, weight gain, goitre to be hypo so the TSH would fit. For info I am miles better than a few years ago and these symptoms are the least of my problems in comparison. I have spoken to a couple of the other GPs in passing abou me trying thyroid t/t. One thought I was mad the other more understanding but has left. I don't know whether to write a letter instead because I am a gibbering wreck around medics/ nurses/ hospitals following mid staffs type issues a few years ago.

Back to dosage, I imagine I should reduce by 1/4 (6.25 mcg) with a view to maintaining /reducing further, going back up, etc depending on response. Does that seem enough?

Thank you again.

[Mellybedhead in reply to Mellybedhead]

PS my test was at approx 10.30am and last T3 at 5pm previous evening.

[shaws Administrator in reply to Mellybedhead]

You should preferably have 24 hours between the last dose and your blood test. So it probably skewed your results.

As I take my T3 all at once in the morning, I don't have the problem of having a reasonable gap between dose and blood test.

It may be a bit of a surprise to your GP as she didn't know you are self-medicating but you are so much better. It really doesn't matter re your blood tests. This is a link which may be helpful. T3 itself will not relate to the blood tests the GP takes when patients are undiagnosed/unmedicated, or on T3 alone.

As you are feeling so much better, just tell her you are taking medication but your blood tests are not true and are skewed. Can you get another one. Take your last dose in the morning and get your next blood next day at the earliest possible time.

See first question on this link.

web.archive.org/web/2010103...

[Clutter in reply to shaws]

Shaws, Melly had 17 hours between her last dose and the blood test. 12 hours is long enough on T3 as it's short half life means it will be out of the serum in 6/9 hours.

[shaws Administrator in reply to Clutter]

O.K.

[greygoose in reply to shaws]

I disagree with that! I would say 24 hours too.

[Clutter in reply to Mellybedhead]

Melly, see how you do on the 6.25mcg reduction and have another thyroid test is 8/12 weeks. FT3 takes longer than TSH to respond to dose changes.

You could email your GP prior to the teleconsult if you think you may not handle the phone call well. Maybe helpful to your GP to have some background prior to the call too.

[Mellybedhead in reply to Clutter]

Thanks Shaws, Clutter.

I will read your link and try to compile an email which sounds logical as I've come to the conclusion I won't be able to make any sense on the phone.

Thank you so much for your advice.

[greygoose in reply to Mellybedhead]

I would love to know what those herbal suppléments with T3 in are. Would save us all a lot of trouble.

Melly, when you are hypo, your TSH is high, not low. A very low TSH indicates hyper in someone not on thyroid hormone replacement.

Could you also ask her to test your testosterone. That could be the reason for the loss of body hair. You're not taking statins, are you?

[Mellybedhead in reply to greygoose]

Hi greygoose,

sorry about the hypo/hyper thing, brain fog - maybe it's my thyroid. lol!

I'm not sure of my chances of getting a testosterone check. I'll try to ask when I speak to her. I seem to think there is a supplement/herb that sounds like google, maybe guggull? Which can influence T3. I should really have checked that before sharing my brain bin. Heyho.

Oh and not on statins but Drs receptionist also said I am menopausal - cheers! So maybe I'm just an old, bald and chubby 47 year old.

Thanks again clutter too. I have emailed the GP and do feel better to at least have it off my chest.

To clarify the advice so far....

6.25 mcg reduction of T3 should be enough initially to see if I can come in range but still feel well.

For testing take the normal morning dose then none until after the test the following (early) morning.

How longish might it take for my body to adjust to the lower dose being its norm?

Thanks again guys.

[greygoose in reply to Mellybedhead]

Takes the body about 6 weeks to adjust to a dose change, usually.

Yes, I know guggle - although I've never tried it - don't know how much of an effect it has on T3. As I said, if it were that easy, we'd all be well! But what does a technician know! Doctors don't even know.

Come to that, what does a doctor's receptionist know?!? How dare she say that to you! What is her source of that information? I would complain to the doctor if I were you. She has no right to say things like that. (Think I would have slapped her! lol)

You have some good advice there, so good to try. But remember, it's how you feel that counts! Not some number on a lab test. Some people just need their T3 over range.

[Mellybedhead in reply to greygoose]

Don't we all love a Drs receptionist!

Thanks for the support, it really helps.

[greygoose in reply to Mellybedhead]