T4 or not T4 - That is the question

[Kangagirl]

I have been offline for a while because of moving house, and now having to get to grips with a new GP. Probably nobody has missed me but I've missed you!

I would appreciate any comments on my latest thyroid test please:

TSH: 32 (she didn't give me the range and I forgot to ask as she phoned me and I wasn't expecting it). I know of course that it's too high, but this time last year it was 150 +. On a TINY dose of T3 - can't tolerate more - it went down to 95, then 40 about a month and a half ago. My main aim, after trying four times to get back on Levo and feeling like hell, and also trying Erfa and Amour with much the same effect, was to find something, anything, I could take without feeling so much worse. Taking nothing at all wasn't an option - after initially feeling loads better for about 6 weeks after ceasing the Levo, I then of course felt worse and worse and worse, until plainly something had to be done. It took from July to December 2012 to finally retrial T3 after initial failure and trying 2 NDTs, with the patience and help of my lovely private endo who sadly is now hundreds of miles away.

I didn't expect T3 to suddenly cure everything - I had no expectations of the 'lightbulb moment' that many speak of when on T3, and expected a long haul. I take my dose at around 4.30am which seems to have the least bad effect.

T4 in any shape or form, synthetic or natural, seemed to be a no-no. I hoped that even if it took ages, the falling TSH would eventually have some beneficial effect. The rate of descent seems to have slowed down now and I'm wondering if I should try to add in some T4, in view of the low result. Or is T4 largely irrelevant if you are on T3?

The new GP so far doesn't seem to think the low T4 is anything to be concerned about, although my former one had said I should try to up the T3 or add some Levo. I am still pretty loath to try Levo again - but I did get some Naturethroid (as it's supposed to be hypoallergenic), and wonder if it really is any different to the others. If I take anything that disagrees with me the results are pretty devastating, so I am undecided. Although the way I feel has improved since last year, it isn't consistent and I can't say I feel great, so If I'm honest I'm a bit scared to try any T4, although I know sometime intolerances can fade over time and you can re-introduce things that might have formerly disagreed with you.

T4: 7.1 (7.9 - 20)

T3: 5.1 (3.8 - 6.0) The highest it has ever been, even when I was on Levo and felt more or less 'OK'. It was then barely in range at 3.6 (3.5 - can't remember).

I would be grateful for any comments, advice or tales of other people's experiences. Many thanks.

Kanga x

[Moggie]

Ever looked into liquid T4?

Moggie x

[Kangagirl in reply to Moggie]

Hi Moggie - I did try and find out something about it right at the beginning when nothing seemed to be working, but at the time my GP was supremely unco-operative and I knew there was no chance of getting anything like that unless I could source it by some underhand (but legal) means as people do for T3 etc. I was astonished he even agreed to T3, although that was down to my endo, as he had refused point blank when I asked about it.

I had actually forgotten about it - so I will do some more research. Thanks for the suggestion.

[Heloise]

Hi Kanga, I've been posting this series of five minute videos on low thyroid symptoms even when medicated, #10. This one is about deficient co factors but one of them talks about fast conversion of T4 to T3 or maybe OVERconversion which you seem to show on your test since your T3 is higher than T4. I'm not sure which of the 24 videos he mentions that but if I can locate it, I will post it. #6 and #7 talk about antibodies.

[Kangagirl in reply to Heloise]

Hi Heloise - I'm not too sure about overconversion if I'm not actually taking any T4 - how would that work? I know my antibodies were sky high when everything went pearshaped, but no idea if they change over time, and if so what they might be now.

I don't know if this is a dumb question, but how do I access the videos? Thank you for your comments.

[Heloise in reply to Kangagirl]

So sorry, Kanga.

I thought I posted the link. These are only five minutes in length so I hope you have time to watch them because after years and years of trying to figure out why we don't become exceedingly well by taking replacement hormone, I truly believe this functional medicine doctor explains why. He of course cannot treat from the internet but I think you might see the sense in what he is saying. He is speaking of Hashimoto as an autoimmune disease in all these videos. #1 explains kind of an overview. #7 on TPO, several point out the glucose problem or cortisol which I feel is quite frequent because of stress and adrenal disfunction.

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

youtube.com/watch?v=IIX2Z_i...(Not working as expected?)

youtube.com/watch?v=BwWqj1E...(Not working as expected?)

These are all on YouTube if you want to find the rest. I hope this helps.

[Kangagirl in reply to Heloise]

Thank you Heloise

[missdove]

I have missed you Kanga...Have you more light where you livenow, as from your previous posts it seemed your home was very dark and we talked about light pods...I am in the same boat as you and still stuggling to find that combination that will work, but me thinks I would have a better chance of seeing little flying piggies...But hey ho on we go!!! Hope you will be happy in your new home....D x

[Kangagirl in reply to missdove]

Hi missdove, how kind of you to remember me! We do have more light in the lounge, which is where I am most of the time, and the view (only of other houses unfortunately, but nice ones) isn't blocked by a huge tree and 10 foot hedge so although the weather is absolutely pants at the moment, dark and wet and gloomy, yes it is much better all things considered.

But, you win some and you lose some! My husband came down to look at houses because I was not well enough, and for some reason failed to notice that the kitchen, although large and potentially lovely, is as dark as the proverbial Black Hole of Calcutta! It didn't show up in the pictures as of course digital cameras light up everything.

When I walked in, the first thing I noticed was the off white carpets which look beautiful but require a LOT of tiptoeing and TLC and when I went into the kitchen I almost screamed in horror. And this was on a sunny day! I couldn't believe it. It has a small conservatory on the back and faces due north, so is very dark all day - for some reason the lighting is only recessed 40 watt spotlights which look 'cool' but don't actually help much! It's a shame because it is large and very well equipped. But you can't have everything, I'm just glad to get away from where we lived before. And actually the kitchen isn't my spiritual home! On the plus side it does have a waste disposal unit which I am loving, once I got used to the noise and worrying that it might explode!

We are looking into a business venture - which I won't say more about here as I'm paranoid about jinxing it - and if this works out we will be on the move again in a few months time. As you say, hey ho!

Yes, pigs might fly - tell me about it! I don't know if things will ever really get much better healthwise, and this makes me sad and angry in equal measures. I keep hoping that getting my TSH down will help as time goes on, but it seems very hit and miss. I'm probably not doing enough to help myself, but I feel a bit as though I've spent so long researching and exploring every avenue I could find out about, and taking this that and the other, that it has taken over my life more than I'm prepared to put up with. At the moment I try to make the most of any good days and more or less give up on the bad ones.

It's somewhat ironic that you really need to feel better in order to have the energy and motivation to search out all the treatments, let alone get them down your throat, but until you find that elusive combination or whatever, you're never going to feel better - so it's three steps forward and two backwards, or more often two forward and three backwards! But, we plod on.

Lovely to hear from you, I hope things aren't too dire.

Kanga x