Unsure whether to follow Endo’s advice

[ShonaGreen]

Hi, I had appointment with the Endo today and explained that although I felt a lot better since starting Liothyronine 2 months ago, I still have periods where I feel very unwell, no energy, dizzy with bad headaches.

I’m currently on 20mg Liothyronine and 50mg Levothyroxine. As recent blood tests showed low levels of Free T4 (10.3 with range 12-22) and OK Free T3 (4.88 with range 3.1 - 6.8) I thought he would suggest a dose increase. But he’s suggesting I reduce Levo from 50mg to 25mg whilst increasing Liothyronine from 20mg to 25mg. Some of the responses from my last post suggested I should increase to 75mg Levo, so I’m very unsure about decreasing it?

He said that taking Liothyronine will reduce my Free T4 levels and not a concern that blood test showing low levels. But my hunch is that this is probably what’s making me feel unwell as I need a dose increase.

I also asked about further tests to check for any pituitary problems, as at last appointment he said that central hypothyroidism was possible. He agreed to refer me for a thyroid scan but said it doesn’t really matter what it shows as will be treated the same why. He also did an IGF-1 test, as he thinks the other pituitary tests were normal, albeit at bottom/top of the ranges.

I just want to make sure that I find the right dose for me and avoid changing things too much. Your help is much appreciated!

[Lalatoot]

I would be thinking the same as you. At 50 mcg levo and 20mcg lio I was not feeling great. My results were ft 4 at 10 and Ft3 at 6.2. I increased my levo to 75mcg. 4 weeks later I was feeling overmedicated so reduced lio to 15mcg Been 2 weeks now and I am much better than I have been for a long time. Will keep this dose for 6 weeks then bloods.

You know your body - trust your instinct.

[ShonaGreen in reply to Lalatoot]

Thanks Lalatoot that makes good sense! I only hope the Endo’s letter to GP doesn’t mention reducing Levo to 25mg, as they’ll then change my prescription for it!

[Lalatoot in reply to ShonaGreen]

That's what happened to me. Endo reduced levo to 50mcg and I knew that would be too low but had to comply. She wasn't exactly delighted when I saw her and had altered my dosage but I got away with it.

[SlowDragon Administrator]

Many of us need good levels of Ft4 and Ft3

Many endocrinologists seem to reduce levothyroxine too much

Every person is different. It takes tweaking and experimenting to see what works for you

[greygoose]

Personally, I would increase the T3 as he suggested, but leave the levo where it is. Some endos have this weird idea that you should reduce levo with every increase in T3, but that way, you would end up on T3 only. And, I'm sure that's not their intention. They just don't think it through.

[ShonaGreen in reply to greygoose]

Thanks greygoose that’s what I’m thinking of doing. I don’t like second-guessing the Endo but starting to learn that unfortunately they are sometimes not the font all of knowledge with thyroid issues!

[greygoose in reply to ShonaGreen]

They certainly aren't!

[Hidden in reply to ShonaGreen]

With thyroid it's probably always better to only increase or decrease one thing at a time. As you are not near top of range there's plenty of room for increase and little risk of overmedication.

If the increase in T3 does seem a bit too much you could always take half the amount to start with.

[LAHs in reply to Hidden]

Oh yes for sure just adjust one medication at a time. If you try to move them both around together you may never find your solution. Hold one steady, tweet the other one both ways until you feel better then hold that steady and tweak the other one till you get even better. And even then you may not be optimal, you may need to increase both - but not at the same time. Repeat the process because you now have a higher baseline (well different anyway). Finally you will achieve a good level - oh I know it is a big drag, but it is worth the effort.

[Lalatoot in reply to greygoose]

They blindly follow the protocol which seems to be reduce levo by 50mcg and add 20mcg lio. My ft4 was 60%through range and Ft3 16%through range. To me it seemed that I should just top up on the lack of t3 by adding 10mcg lio. But the protocol said reduce by 50mcg etc so that was what I had to do......

[greygoose in reply to Lalatoot]

Well, you don't have to do anything. You do have your input to give on your treatment.

[Lalatoot in reply to greygoose]

Unfortunately she communicated the dose by letter and told the docs to cut my levo prescription! As soon as I got my hands on extra levo I increased.

[greygoose in reply to Lalatoot]

That's how they get away with murder - possibly literally! It's time someone held them to account. I have never, in 20 years accepted a reduction in my dose.

[Hidden in reply to greygoose]

What if they refuse point blank and reduce anyway and you can't afford private supplies?

[greygoose in reply to Hidden]

That's a good point, but I would kick up a hell of a fuss, complain to the practice manager, etc. Your treatment is supposed to be a partnership, and you are supposed to give informed consent to any changes. They are not supposed to dictate to you. If they do that, they are in the wrong.

[Hidden in reply to greygoose]

Accepting a decrease that time seemed the only way to prove to them that reducing Levo was not the right treatment. Which it did.

Also I'm a bit of a coward when it comes to face-to-face confrontation!

But I did complain to the practice manager about something else - a referral request that contained a number of serious mistakes. No doubt the person who did it (a "Minor illnesses practitioner I think is the title) had no idea that I was going to ask for a copy of the letter!

Since then I have had no hassle about getting an increase when needed. In fact, I've now agreed to (actually suggested it myself) a very slight decrease as T4 was well over range and T3 near top of range, with no improvement in symptoms. (as in my recent thread).

I can understand medics trying to refuse a patient's unreasonable demands - there has to be give and take - and often the doctor does know best. Except that is rarely the case with thyroid problems as we know only too well!

[greygoose in reply to Hidden]

If it proved a point, then it was worth it. But, we need to be constantly on our toes.

[Hidden in reply to greygoose]

Indeed we do!

[Hidden in reply to greygoose]

Totally, my Endo is the same, he just wants to keep reducing Levo in order to raise t3, which would mean - t3 only! It really doesn't makes sense to do this for everybody

[greygoose in reply to Hidden]

It's just a total lack of understanding how it all works.

[Hidden in reply to greygoose]

Yeah, it's not substituting, it's supplementing right ?

[greygoose in reply to Hidden]

No, it's substituting. Replacing. When your thyroid can no-longer make enough thyroid hormone to keep you well, you take thyroid hormone replacement - levo or whatever. Once you start that, your thyroid will gradually stop making hormone itself to a greater or lesser degree. And then completely.

But, as I see it, doctors believe that when you start taking T3, you need to reduce levo so that you don't over-replace the T3. Ipso facto, for them, every time you increase the T3 you have to reduce the levo to maintain the balance. It seems to totally escape them that the reason you're taking T3 in the first place is because you can't get enough T3 from levo - even the worst converters do get some though, but not enough. Reducing levo in the first instance is a good idea if your FT4 is very high. But, often they reduce it even if the FT4 isn't very high. And they don't seem to understand that FT4 will drop anyway, when you start taking T3. So, the result is that the FT4 goes down and down and down. And whilst that might not bother everybody, it does affect some. But they're incapable of thinking the whole process through, from what I've seen. They just react automatically like a robot.

[Hidden in reply to greygoose]

Sorry Grey, meant supplementing t4 with t3, not substituting one for another endlessly I agree, I need to be now on a full replacement dose. Yeah he says that my t4 will drop anyway so he will reduce it? I'm like...ehm...no? 2 months later I'm more underactive with less t4 more t3, but I'm sure he will tell me soon to drop t4 again and add more t3...

[greygoose in reply to Hidden]

No, I wouldn't say that, either. I would just say adding T3 to T4 so that you have adequate amounts of both.

[GKeith in reply to Hidden]

T3 is much more expensive than T4. So, why would he do that?

[Hidden in reply to GKeith]

It's not in Ireland, but I talked to him yesterday and he said that I don't need to reduce my Levo and to by what I feel is right

[GKeith in reply to Hidden]

Cool, hope you get well. Peace be with you.

[Hidden in reply to GKeith]

Thank you GKeith, you too!

[Hidden]

Oh dear. You could be right, your ft4 is quite low, I wouldn't be reducing it at this point! I currently feel bad with ft4 being below mid-range and my Endo is the same - keep reducing Levo and increasing t3 endlessly and so on, because, as your said too, t3 will suppress t4 anyway. I stopped believing in it and I'll be upping my Levo tomorrow to where it was!

[suztango]

When you add T3 your TSH goes very low. The lower TSH goes the lower the conversion of T4 to T3. So adding more T4 might not work for you.

My endo prescribed 50 mcg levo and 20 mcg T3. I’ve just added another 10 T3 just to see how I feel. Doing a bit better.

But it revealed there was something else wrong with me. B12 deficiency. On B12 injections now. They’re not frequent enough so another thing to battle the endo about.

[SlowDragon Administrator in reply to suztango]

I found B12 levels dropped when Ft4 dropped. (Regardless of good Ft3)

B12 improved when increased levothyroxine back up

[suztango in reply to SlowDragon]

It turns out I have had a B12 absorption problem. Must have had it for a looong time but didn't know.

[SlowDragon Administrator in reply to suztango]

Trouble is most GP’s don’t know about low vitamin levels connection to being hypothyroid

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

[BB001]

I wish I had your endo. They sound completely on the ball.

Have a look at Paul Robinson's stuff, he's got a blog 'recoveringwithT3' and has written 3 books. 'The thyroid patients manual' is the latest one and explains what's going on.

Greygoose, could you explain your thinking behind your comment "FT4 will drop anyway, when you start taking T3' please? I can't see why this would be.

I would follow your endo's advice.

[ShonaGreen in reply to BB001]

Thanks BB001 I’ll take a look at that info!

[suztango in reply to BB001]

Adding T3 makes the TSH go down. The lower the TSH, the lower the conversion of T4 to T3. More and more will become rT3. So the FT4 will reduce and the FT3 will not go up by much. That's how I understand it

[BB001 in reply to suztango]

So the answer is to increase T3.

[suztango in reply to BB001]

I think it's definitely worth a try yes

[Angel_of_the_North]

Some people do fine with low FT4 and others don't, but your FT3 is quite low for someone taking T3. How are your vitamins and ferritin?

[ShonaGreen in reply to Angel_of_the_North]

Hi Angel_of_the_North , last blood test showed OK levels for Vitamins (I think) and Ferritin was just over range which it has been for a while. I use Better You sprays for Vit B12 and Vit D and take Igennus Super B Complex.

Ferritin - 157.0 (range 13 - 150)

B12 Active - 130.0 (range >37.5)

Serum Folate - 16.0 (range 8.83 - 60.8)

Vitamin D - 70.60 (range > 50.0)

[Hidden in reply to ShonaGreen]

Vitamin D could be higher. I think someone said that the vitamin D Council recommends 100-150 as an optimal level, but the NHS won't even prescribe if it's above 50!

[SilverAvocado]

Shonagreen, Some of what your doctor said I would agree with. FreeT4 will always drop when you introduce T3, even when levels remain stable. Theoretically this doesn't matter, as freeT3 shows the active hormone and is what you really need. Some unusual people do need decent levels of freeT4 to feel well.

When reducing your Levo by 25mcg and increasing T3 by 5mcg he is trying to keep your overall dose stable. These two measures are roughly the same amount of hormone, altho a little bit stingy, in my own dosing I assume that T3 is 4x as potent, but this doctor is assuming 5x as potent. Some patients even assume 3x

The problem is, based on your symptoms and your blood test which shows both freeT4 and freeT3 quite low, I would say you need an increase not just a swapping around. Swapping in this way is more for people who feel they are close to their ideal dose but need some tweaking.

This doctor seems like they may be a shade better than the average, but are not on much of a trajectory to get you feeling well

One option is to buy or stockpile a little Levo and just supplement what you've been prescribed. Take the 5mcg of T3 as an increase instead of a swap. You don't need to mention it to your doctor, it will probably be imperceptable on the blood test, as your freeT4 is already under range.

[ShonaGreen in reply to SilverAvocado]

Hi SilverAvocado thats interesting to know what the Endo is aiming for, wish he could have explained that to me! So would you suggest that I increase the T3 to 25mg and also increase Levo to 75mg, or keep it at 50mg?

[SilverAvocado in reply to ShonaGreen]

An increase of 5-10 mcg of T3 is a decent sized increase. It's best not to mess with Levo at the same time, but to only increase one or the other, so I would keep the Levo at 50mcg for now. Most people are happy just to continue increasing T3.

Best practice is to have a blood test 6 weeks later and then adjust again. You will probably need more than one increase to take your freeT3 high in range.

The difficult part is getting your doctor to agree to all this

[ShonaGreen in reply to SilverAvocado]

Thanks SilverAvocado , makes sense to just increase the T3. I'll keep fingers crossed that the GP continues to stay out of the picture with everything thyroid related and not even try to decrease my Levo!