What happens when you have too much T4 kicking about?

[Nanaedake]

Does anyone know what the symptoms, or the effects of having a lot of T4 kicking about are? I have to have a rather high FT4 level to achieve a high enough FT3 level to feel ok. Just wondering what happens to all that T4 that doesn't get converted to active T3?

[puncturedbicycle]

If this is the case if maybe you're not converting very well - ?

[Nanaedake in reply to puncturedbicycle]

Yes, I think that's the case but I wondered if there's a document or some research that explains this so I can show my doc?

[Gardenofeden]

I have the exact same problem!!!!!

I believe we are at risk for having a high reverse t3 which means our body will not use the thyroid hormone properly thus experience hypo symptoms.

My advice would be to drop your t4 dose to the point where your free t4 is in middle of it's range and add cytomel (t3), to get your free t3 around top of its range.

[Hidden in reply to Gardenofeden]

Similar story for me. A very recent blood test showed T4 right at the top of the range, but T3 right at the bottom and TSH 3.59 which I understand should really be much lower to feel better. I was thinking of having a private test done for Reverse T3 but you need to have Free T3 done same time to work out some sort of ratio thing for accuracy and its quite expensive, having already had a few private ones done already

[puncturedbicycle in reply to Hidden]

Georgina61 I would assume the way to treat this would be by adding t3 or trying ndt. If your t4 is at the top of the range there will be no point increasing levo to raise t3 and lower tsh. Have you tried t3 or ndt? And if those don't work it may be that no t4 at all suits you, in which case t3-only treatment may be the way to go.

I understand the desire to test rt3 etc but if it's expensive you may want to think about whether you need to know all the adjacent gubbins or if you'd rather spend your money on effective treatment. Unless there's a compelling reason to test?

[Hidden in reply to puncturedbicycle]

Hi Puncturedbicycle, many thanks for your comment. I don't want to gatecrash this person's post but sometimes other information is useful. So briefly, I recently saw an Endocrinologist in London as I've been concerned for some time about my continuing symptoms and also have tried an increase in T4 earlier in the year from 75mcg to 100mcg but couldn't tolerate the increase. Just told GP I was sticking at 75mcg. Discussed everything with the Endo. He listened well and I had sent him a history prior to the appointment.

He came up with 2 avenues for treatment to try. 1st being NDT (Erfa) and 2nd being hormonal patches, much to my surprise. He seemed at the appointment to be saying I had the option of trying either or even both. However in an email exchange later, he said see how you get on with the patches and let me know in a few weeks. I had a private prescription for the patches and went and purchased them, but they have so far remained on my bedside cabinet for around 10 days now. I cannot bring myself to use them. I'm 61 and periods stopped 9 years ago and there are risks attached to the patches. My husband asked me today why hadn't I started using them and I explained my reluctance. So he said well perhaps write to the Endo and explain and say you'd like to try the NDT instead. So this is what I intend to do.

In addition to the above, some months ago, I actually purchased a supply of T3 as I intended to try it, but wanted to try and get support from somewhere. Mentioned it to the Endo and he said well hang on to those for now. So this is where I'm at just now. Could try the NDT on a very low dose trial or go with NDT via the Endo.

[Nanaedake in reply to Hidden]

Are you in the UK? And is your Endo private or NHS? I only ask because I would like to know whether people in the UK are getting NDT prescribed?

[Hidden in reply to Nanaedake]

Not sure if that question was for me, but offering an answer anyway. The Endo was in the UK in London, recommended by someone on this forum. And yes he would prescribe NDT but the appointment and the NDT prescription are both private. GP not interested, probably thinks I'm a hypochondriac. Well one GP said to me 2 weeks ago when I asked to be referred to an endo 'we don't need to refer people to an endocrinologist, we deal with thyroid issues here' when I replied that I still had symptoms, she said (flippantly) yes we do find some people do despite being on medication'......... I went away thinking (my husband was there too) so you just leave us to suffer then!

[Nanaedake in reply to Hidden]

Hi Georgina61 That's a horrible reply from the GP but that does seem to be a general response. It's miserable and senseless when there are alternatives that help. I would be interested to know who the private Endo is by private message if at all possible? Many thanks.

[humanbean in reply to Hidden]

You could get reverse T3 and Free T3 done together using this test :

bluehorizonmedicals.co.uk/T...

It's a vacutainer test, meaning that you need a full blood sample taken for it from the arm.

See these links for more info about ordering from Blue Horizon :

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

You could get the same set of tests done by medichecks for rather less money. I've never used medichecks, but I know some people on the forum have :

medichecks.com/find-a-test/...

I think both sites also allow you to get Reverse T3 and Free T3 measured separately. I haven't worked out whether this would save you money.

[Hidden in reply to humanbean]

Thanks humanbean, sorry I don't want to gatecrash the other person's post, but I already had a test with BH but hadn't been aware of doing RT3 at the time. They do say the sample is still viable for 7 days and I rang to ask if they could do RT3 but they said it has to be done first so another test would have to be done and they offered me a slightly discounted price to have RT3 and Free T3 done, but I decided not to go ahead at that time as I was short of money.

I don't have a problem getting blood drawn as I work as an Administrator in a Care home and good friends with 2 of the Registered Nurses. They will take a blood sample if offered cake

[Musicmonkey]

For me personally (and I did have high levels of rT3) I seemed to have persistent hypo symptoms despite increasing dose of Levo and a seemingly non-stop increase in other niggly health problems and feeling increasingly unwell and feeling that if this was life, I wasn't sure it was worth living.

Feeling so much better now that I have learned how to manage my condition myself thanks to this forum. If you want to know more, click on my username and read my posts.

[SmallBlueThing]

High FT4 is linked to atrial fibrillation, particularly among older men.

[Nanaedake in reply to SmallBlueThing]

Thank you for all your suggestions, I am thinking about various options and I think I might get FT3 tested privately to find out if it's still the same/similar result as last time then take it from there.

[dolphin5 in reply to SmallBlueThing]

I suspect that the atrial fibrillation link only holds true when a high level of FT4 has led to a high level of FT3, but not when a conversion problem has led to high FT4 and low FT3. It is probably one of the misleading pieces of research done by scientists who do not understand how thyroid hormones work.

[martinthevet]

Manchester NHS has suggested to us having an available genetic test for ability to produce peripheral deiodinase, as the blood tests for calculating FT4 and FT3 ratios are not particularly cheap and as levels can fluctuate, upsetting usefulness of the results. If you have a deiodinisation problem, you have clinical and surely irrefutable evidence that you need T3 supplementation in your medication armoury. To withhold it would be negligent clinically, and politically embarrassing for a determined NHS Trust!

[Nanaedake]

I thought the deiodinase genetic test was not widely accepted by the NHS as proof of a deiodination problem?