Looks like I'm back to square one...private endo appointment :-(

[lare73]

Hello everyone, hope our all having a good day.

i had my private endo appointment this morning. My GP referred me to him and sent my info to him.

He was lovely, pleasant attentive. But he thinks my thyroid is fine as my TSH is within range.

The 50mcg Of levothyroxine i fought for through my GP I now have to stop.

He is testing me for celiac (which is said is a long shot) due to very low vitamin d levels.

he is also testing my cortisol, growth hormone, IGF1 (don't know what the lady one is).

He expects they will all come back normal. But said he will monitor me whilst coming off thyroxine.

He said I will get better and it might just be one of those things that they never know what it was.

i went along with everything he said. I Agree if. I Don't need thyroxine I shouldn't be on it. And he said he would expect a massive difference in symptoms not the subtle ones I've had.

the cyst I have on my left lobe is small enough not to concern him and was quickly dismissed.

I have to go back in 3 weeks for the results.

£180 + cost of blood tests so far.

any advice?

[helvella Administrator Thyroid UK]

When I started levothyroxine, my symptoms slowly resolved.

When I was taking Teva levothyroxine that was not delivering the claimed dose of levothyroxine, my symptoms started to return.

When I switched from Teva (have since had both Actavis and Mercury family products), my symptoms slowly re-resolved.

My symptoms were never at the worst end of the scale. I would have to classify some as being subtle.

Improving vitamin D also helped - but I do not think that the one overlapped and confused the other.

I am on 100 micrograms so must have some thyroid function remaining.

Advice: If you are going to try coming off levothyroxine, make sure you take careful note of what happens.

Rod

[lare73 in reply to helvella]

I have no choice rod, I've been on levo for 4 weeks with some improvement but he said as my TSH is normal then my thyroid is not my issue, my t4 came back 11.5 (12.0-22.0) and T3 was 4.4 (3.1-6.8) TSH is 1.9 (0.27-4.2).

. So he said if my symptoms come back they will re-look at the thyroid possibility.

I think I Have gone full circle.

[Ansteynomad]

I think you do have a choice. If you feel OK as you are, I don't think they can reduce your dose without your consent or agreement, so you may need to go and talk seriously to your GP about the improvements you have seen while you have been on this small dose of levo. You're not showing any hypER symptoms are you?

While you're there, you should probably point out that your FT4 is below range, which makes your TSH unreliable in any event.

The endo may have spotted that below range FT4 as he is looking at your pituitary function (IGF-1), but whatever you do, get the vitamin D sorted - I found that made as much difference as anything to the way I feel.

AN

[lare73]

Hi I reited to press reply to this but it isn't working?

Anyway, I have no hyper symptoms at all, I still have hypo symptoms but not as severe since taking the thyroxine.

I am at a loss... I emailed the endo, no reply yet, sayingi do not want to come off the medicine, and on reflection feel my symptoms were overlooked. I will go for the blood tests to rule out any pituitary issue I may have.

[Hidden]

I think I would be looking for another Endo (not that I think anything of Endos at all!) to spend the money on, for one thing, 4 weeks is barely enough for levels to "settle" after taking any thyroid replacement anyway.

Your TSH might well have been in range but T4 wasn't, and your T3 wasn't exactly high!

Looks as if this fella is a TSH only man!