If you are Hashi's can I ask what dose you are on?

[Syd35]

I know we are all different but wondering what the common/average dose of Levo would be for someone with Hashi's? I am currently prescribed 100 / 125mcg alternate days and for the last while have experimented with 150mcg per day which seemed to keep me fairly well but the old symptoms are creeping back, severe fatigue, reflux, sleepless nights, feeling cold etc. I am not sure what to do about an increase as I haven't told my doctor about unofficially increasing dose myself.

For info I have trialled a T3/T4 combo which didn't go well and I had to abandon 3 weeks in as felt worse than ever. Also on liquid iron for low ferritin.

Just curious how much others are taking so I can gauge if there is much room for an increase. Thanks

[SmallBlueThing]

I was taking 175 mcg of Levo with TSH under range and fT4 at top of range. I was still cold etc. (in fact, more continuously chilly than ever) so asked for a fT3 test, and the fT4:fT3 ratio was over 4.6 so I asked my GP about adding porcine extract, as a source of T3, and got the OK. I started with 100 mcg Levo plus 1 grain Thiroyd but quickly changed to 50 mcg and 2 grains. Stuck with that for three months but needing winter clothing again so have increased to 50 mcg plus 2.5 grains since the beginning of the month, but not feeling much of a difference. I feel chilly with a room temperature of 22C.

Don't forget that body weight is used as a rough guide to requirement of replacement hormone: 1.6 mcg per kg.

[Syd35 in reply to SmallBlueThing]

Thanks SmallBlueThing - was GP able to prescribe that to you? Do you feel better with that added rather than being on T4 along? I know what you mean about feeling cold in a warm room, it's the battle of the thermostat in our house, my husband always hot when I'm cold and vice versa.

[SmallBlueThing in reply to Syd35]

No prescription for Thiroyd. When I asked about T3 a few years ago there had been a shortage and I was told it was only available for those who really need it. As my GP thought "job done" when my TSH dropped below 5, I realized that help in feeling better was perhaps unlikely to come from that quarter. Despite the raised eyebrows, I was allowed to increase Levo until TSH was about 0.5. I have also trialled T4+T3 and Thiroyd (alone) in the past without my GP's knowledge, during a period when I felt a bit abandoned. This time I'm using T4+Thiroyd so the percentage (and total) of T3 looks more reasonable, just in case I ever get an Endo referral.

Body temperature and bowel motility improved straight away when Thiroyd was added, and there was a slight decrease in oedema. However, I've noticed my oedema waxing and waning, from the fit of my blood pressure cuff and clothing.

Other aspects of my well-being are due to age, obesity and a history of undertreated Lyme disease.

I heard on the news the other day that September marks the Battle of the Thermostat.

Tonight I'm feeling properly warm, after baked potato and plum crumble. Maybe I need to make sure I get plenty of carbohydrates?

[greygoose]

I don't think having or not having Hashi's has anything much to do with dose. Hypo is hypo, and you need to replace the missing hormones - levo doesn't treat or cure Hashi's.

What went wrong with the T3?

[Syd35 in reply to greygoose]

Hi GG, with the T3 added and Levo reduced symptoms returned with the addition of feeling very low and tearful something which I don't usually experience. I felt I was going downhill fast so private endo told me to return to T4 only regime. Now feel stuck in limbo land as back to how I was feeling early days. Last year was a good year and I was feeling great it's sad I haven't been able to keep it up don't know what went wrong. Guess I just have to put up with the ups and downs

[greygoose in reply to Syd35]

I would imagine that your dose of T3 wasn't high enough, then. Nothing is going to help if you don't take enough of it. And these stupid endos with their stupid 'trials', they don't have the first idea what they're doing! He obviously knows nothing about thyroid hormone replacement. The whole point is that you start on a low dose and gradually increase the dose until you feel well. If he never increases the dose, that's not even a trial. So, he puts you back on something you already know doesn't help. What sort of a quack is that? This is why we have to learn about our disease and stand up for ourselves, because they know ***-all about it. And you're paying for the pleasure of that endo keeping you ill? Time to move on, I think.

[Syd35 in reply to greygoose]

I won't be going back to him I had already decided and yes I do wonder as was only started on 5mcg twice a day. Still have 50 odd T3 tablets left wondering whether to experiment with them but not sure where to start, any ideas?

[greygoose in reply to Syd35]

Before starting T3, you need to make sure you can sustain your supply. It won't do you any good to start on them and then stop again.

But, I would recommend you start on 5 mcg and increase by 5 every two weeks. You don't absolutely have to split your dose, you could try taking it all in one go, as you increase. But, it does need to be taken on an empty stomach, etc. just like levo.

How much levo are you taking? And, do you have a copy of your latest labs? We really need to know all that in order to decide whether you should reduce the levo or leave it as it is.