Update on my appointment this afternoon

So I went in and the sign said on time!! Ha, my arse!! One and a quarter hours late to be seen!!

So I have had bloods taken to rule out lymes disease and to check my thyroid.

I am also going back to have my adrenal function tested. He doesn't think it is an issue apparently I don't look like a person typically does with adrenal problems.

Basically he doesn't think there is much that he can help me with as it is 'just' a case of tweaking my levels. On one hand he said my last few results were a bit all over the place and on the other than it is just fine tuning.

He discussed how to get a more consistent absorption of the levothyroxine. Ie by taking it in the morning before food and not with other meds. Also by asking pharmacist to always give me the same brand as different brands can actually vary a lot.

He said that levothyroxine is really the only sensible form of levo as it is measured more consistently.

He said that unless you have adrenal issues there is very little evidence to suggest that taking tsh3 really makes any substantial difference.

The thing that did surprise me is that apparently there is nothing i need to change and that taking supplements etc makes no difference to absorption.

I do not want to open a can of worms please, I am just reporting what happened.

So I am not really any further forward. Basically suck it up and get on with it!

15 Replies

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  • Well, never mind. Just get all your results & take the advice that you will find here. Sorry to say that your story is not uncommon. But you can get yourself well, despite the doctors. I did, the people on this forum saved me.

    We shouldn't have to do it ourselves, but you can get better x

  • So what did you do Harry, to get better?

  • Sorted out my dreadful iron levels & got myself on NDT. Basically worked my way through all the advice i was given. Cheked B12, vit d etc. I was refused any treatment by GP & an endo, but I was desperately ill. Now totally back to normal

  • What is NDT? I'm on vit D which I will get checked again in a few weeks. I feel less sore since then. I will phone the surgery and find out what my b12 result was.

    Good that you are back to normal :-)

  • Natural dessicated thyroid, like armour, erfa, Naturethroid etc. You will see lots of posts about it, it is what was used before thyroxine was invented. Some people do just fine on thyroxine, but you need to sort out the other deficiencies too.

    You will have to take control of your own recovery but it is worth it. You can do it!

  • Ah so that is what the doc was somewhat negative about!

  • Well he has no reason to be. It works!

  • I know that sometimes we cannot help the time we have our thyroid hormones tested. Next time make sure it's at the earliest, and leave about 24 hours between taking levo and test and I've read recently not to take food as it might interfere with the result.

  • Thank you that is helpful x

  • when you say you're having your adrenals checked is that for Addisons by NHS? Have you paid for a saliva stress test? The test for Addisons is looking at virtual adrenal failure and unlikely you will have that, but on the other hand the private stress test will give you a more sensitive analysis of what is going on and whether you need to support adrenals before thyroid meds will work effectively. Genova do the salivs stress it costs about £70 and can be accessed vis Thyroid UK's website. My addison's test was negative three years ago, but my last saliva stress showed that what I can access, what is bio available is on the floor - but the NHS don't care about that.

  • Now I'm not sure. I have to go have blood taken then wait 45 mins and have more blood taken. I presume they put something in my system in between to see how I get rid of it. Does that make any sense at all?

  • They take blood, inject you with ACHT to stimulate the adrenals and then should take blood 30 mins and then 60 mins following that. I would advise you to get a saliv stress test, the endo will use your blood test to prove there's nothing wrong with you. I produce lots of cortisol in my blood but its so bound not much of it is available - the nhs don't deal with this. They refuse to deal with it.

  • Oh yawn! I wish they would be a bit more open minded. It's so frustrating.

    So the saliva test shows another picture. What you can actually access from the medication?!

  • Not from the medication, what your body can access from the cortisol it makes. 85% of cortisol in the blood is bound to a protein, if more is bound and the body can't unbind what it needs you aren't getting enough. A saliva test measures what you are actually using not what is simply in the blood stream. This is why my blood cortisol looks good but I feel very ill and have low cortisol symptoms such as sugar crashing, hunger, nausea. Cortisol and thyroid hormones have an intertwined relationship, both effect one another and can prevent both working properly.

  • I see, thank you for explaining it!

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