Any Advice Please I'm not seeing Endo for 4 Months I've Just Got these Results I think I need to increase ?

[Kazbe]

Hiya Everyone after a disastrous week I'm back on Levo 50mcg the Endo doesn't want to see me for 4 months but had another Cortisol and TFT Blood Test on Feb7th she was suppose to ri g or write with result but she never! (Suprise Suprise) I rang yesterday as I feel awful the Endochrinology Nurse said she's on study leave so she wasn't prepared to do anything but I insisted on k owing my result !

My TSH has shot up to 5.7 !!!!

(Dec 2017 TSH was 3.4)

My Cortisol levels are raised too I'm so fed up what an earth shall I do ? I'm cold my temp is 35-36 pulse rate has dropped to 76-78 my face is so pale I can not sleep at all lying awake despite taking magnesium hot bubbly bath and lavender on my pillow nothing's working !

Shall I just increase my Levo to 75mcg and insist another appointment because last time I saw her she said take heart tablets and go for counselling !

I feel like I'm getting nowhere in fact my TSH is shooting back up it was 10 last year !

Any advice I'd be most grateful

Thankyou

Kazbe

[shaws]

I would be apt to treat myself as you are getting no positive action from the Endo or the Nurse. They have no compassion as they don't understand how disabling symptoms can be. They are in the wrong profession.

You can source your own levothyroxine and increase the dose by 25mcg every six weeks and take note, as you are doing already, of your temp/pulse.

Request your GP to test your results and the aim is a TSH of around 1 or lower with a FT4 and FT3 in the upper part of the range.

If in UK, GP might not test the 'frees' but you can get those privately. As you increase your dose by 25mcg every six weeks you should begin to feel better.

Your GP should also test B12, vit D, iron, ferritin and folate. If he's not already tested thyroid antibodies ask for these to be tested next time.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24hours between the last dose and the test and take afterwards.

Get a print-out of your results, with the ranges. Ranges are important for members to comment upon.

[Kazbe in reply to shaws]

Thankyou Shaw's

I will do I've changed from MP Levo to Wockhardt and I haven't got the awful headache so far so good ! Il increase tomoro morning to 75mcg and do as you suggest increase every 6 wks until I feel better if this doesn't work il be sourcing my own NDT I feel like I've almost reached the end of the road with Levo NHS Drs and Endos

Kind Regards

Kazbe

[shaws in reply to Kazbe]

They really do not understand that it is the lack of thyroid hormones which prevent us from recovering and most times they seem to not understand it at all. Always take note of pulse/temp and if you feel you are on a bit too much you can lower dose slightly.

[marsaday]

Try the t4 at bedtime as it works much better for many people. It can aid sleep if that is an issue

[Kazbe in reply to marsaday]

Thankyou Marsaday

I've never tried taking Levo at night because I thought it was levo that was causing my insomnia , but I will give anything a try because I've heard it helps with conversion of T4 to T3 too hopefully it will help

Thanks

Kazbe

[ThyroidObsessed]

From my experience of going through hell on levo, i notice i cannot sleep at all on anything less than 75, when i stopped levo altogether i did not sleep at all! 75 makes me sleep like a baby...

Im in a situation where i cannot go any higher than 75 without getting severe mental side effects..

My ft4 is high in range tsh is at 10 and ft3 is low t o mid range..

Im thinking i need t3...

[Kazbe in reply to ThyroidObsessed]

Hi Thyroid obsessed

I'm gonna try 75 mcg tonight so hopefully Il feel better tomoro

Take care

Thankyou for replying

Kazbe

[marsaday]

T4 is known as the night hormone. We naturally make it when we go to sleep.

After the first half of the night we then make cortisol. The two hormones match production. So you can help raise cortisol naturally if low. This is why many thyroid patients have a low cortisol reading on their first saliva test of the day.

With insomnia you are actually running on adrenaline at the wrong time of day. Adrenaline is a temporary fix to a low functioning energy system. Thyroid hormone is often the best way to lower adrenaline.

[Pinkpeony in reply to marsaday]

As a matter of interest , does that work with NDT or Levo only . TIA Pp

[marsaday in reply to Pinkpeony]

You can take t3 at bedtime, but it is better in smaller amounts, say 3mcg.

So 1 grain has 36mcg T4 and 9mcg T3 so you are getting a lot of T3 and not much T4.

I always say give these things a try. It may work well for you, but i prefer to use T4/T3 because you can use the ratios which suit your body and you can dose to your own routine.

[Pinkpeony in reply to marsaday]

Thank you ! Pp

[Kazbe in reply to Pinkpeony]

??

[Pinkpeony in reply to Kazbe]

That was to Mandalay lol

[Kazbe in reply to Pinkpeony]

Sorry I'm useless with these messages I never know if I'm replying directly or if it appears for everyone to see ! Lol

Any advice or suggestions are helpful thanks to everyone on this forum

Kazbe 😀

[Pinkpeony in reply to Kazbe]

Lol Kazbe , my fault nipping with a query during your posts . Very sorry Pp

[Kazbe]

Thanks Marsaday

That's really interesting and makes sense I took my Levo last night and I woke at 3am feeling cold clammy sweaty fast heart rate felt faint pale face felt dreadful had to get up and make cup of tea ! I took my Levo in morning yesterday then tried the night dose to see if it helped but I think it was too much ! I want to increase my Levo but not Cortisol!

Il get there in the end hopefully !

Thanks

Kazbe

[marsaday]

Try sticking with bedtime dosing. You can always try 4hs before bedtime as well (approx).

Dr Blanchard likes to dose around teatime in the evening.

Experimentation is the only way to work out what is best. You may also find twice daily dosing is better. So evening/ bedtime and lunchtime dosing.

There is a lot you can tinker with.

Your reaction even though it was negative is a good sign because it shows you are having some direct control over how your body works.