T3 meds and a pounding heart

Hi Shelly, sorry I didn't see your reply as I didn't receive an email notification for some reason! 

Since posting this I built up to taking 20mg of lio wit 25 of Levo again and my heart went crazy and scalp started burning and hair loss worsening. So I am now taking today 10mg of lio with 75 of Levo (I believe it still needs to increase the Levo slightly to achieve the equivalent dose). Still getting the pounding though, so maybe 5mg is all I would be able to tolerate. I had to take the last week off work as I felt so exhausted (and cold and hair falling out so felt very depressed). I find lio has a good impact on the fatigue/brain fog and mood so I'm reluctant to give it up completely as Levo just does nothing for me. 

Im going to request the DI02 test to check and see whether I convert T4 to T3 as I feel this is crucial in my treatment going forward. Got a private appointment with an endo in two weeks time that I am paying for as I am so desperate now for help.

is 5mg all you take? That seems a very low dose? I was told by my GP that most people need a bit of T4 in their system as well as T3- what is your opinion on that?

thanks for taking the time to reply, it is so lonely sometimes between doctors appointments I feel very helpless and rely on these forums for advice when things go wrong and I can't access any advice for a while

Hello:

Sorry to hear your heart is pounding. Don't forget T4 Levo will convert if your thyroid is working well enough into T3.  T3 or T4 in large doses could cause it.

Yes, I am on 5mcg of T3 Liothyronine, and my TSH has been good. I did try 10mcg and it was too much for me. It all depends on YOUR BODY.

So I just need that small amt.  We are all different so maybe you need 50mcg of Levo and 5mcg of Liothyronine.  Also get a pill cutter, some of us need to cut up a pill and make a dose smaller or bigger.  It is hard since we may fall in between a pre-made dose. example 35mcg Levo or 40mcg levo.

Try this,  take the LEVO in the morning and T3 at bedtime so you don't get a big dose all at once. You need to play around with the doses and when you find one that works, then stay there on that dose.

Doctor's do not know the exact dose you need.  They base it on weight and symptoms and then we need to adjust it. Many of us have had to do this so it is trial and error a lot.

Keep us posted,

Shelly

Hi Shelly,

yes all the above makes sense and yes you may be right about the Levo converting into even more T3- I need to get this checked ASAP to try and get to the bottom of it. 

I bought a pill cutter recently and I have used it a lot during this experimental phase - I've been cutting the 20mg tablets in half.

yes I agree that as well as dose, I may need to adjust/spread out the drugs throughout the day so I don't get a big surge of hormones at once.

thanks for your help- will let you know if I have any luck over the next couple of weeks!! Fingers crossed

Hi Shelley, did you mean take the T3 at night? With the kickstart T3 gives to the metabolism and energy levels, logic suggests it would be better to take it in the morning so one gets the benefit of them. Or does logic not apply here?

Hello Barbara:

Caz could take it at morning if she prefers or in the evening/night as long as she spaces them apart.  I take mine at night.  Trying to avoid the Bolus-BIG DOSE, all at  once and it may help to space it.

Shelly

 

Hello Shelley, thank you for the clarification. I wondered, because for me splitting my NDT dose in the ratio of 2/5, 2/5, 1/5, spaced 6 hours apart works best. Barbara

Sorry, I meant add: my preference would be to take the T3 in the morning an hour before breakfast and the T4 at night 4 hours after eating. This keeps the medication spaced out like you suggested.

Hi Barbara:

That is what I mean by trial & error, it would be okay to space it like that.  At least 6 hours apart. Caz, could do the T4 Levo at night, and it would be fine and maybe help eliminate the pounding heart.  I just think it is too much all at once.

She also will have to find a dose that works for her, which is the hardest part. The doctor has prescribed a big dose for her which seems to be the main problem.

XO, Shelly

Hello Shelley, you're right getting the dose right is tricky and takes time and trial and error. When I was on levo, if asked to increase the dose by 25mcg I used to chop a 25mcg tablet in quarters and increase the dose by a quarter every two days - that way I avoided the swings and side effects that resulted from increasing the dose.

XO Barbara

Hi Shelly, totally agree that it's about the right dose, then maybe different times of day would also help.

I've heard a few people say they feel much better taking levothyroxine at night (not sure why but it's worth a shot!).

I agree that the dose may be too big. I don't know whether you have had any dealings with the forum "healthunlocked" but they were suggesting to start with 20mg lio and increase my Levo to 100mg!! Baring in mind every increase I did made the problem worse, I thought that was very bad advice- I much prefer this forum and the people on here are generally very knowledgable about such issues

Thanks for your comments Barbara, I've also heard a lot of people take T4 at night- how do you find it? Did you find that taking all the meds in one go in the morning was too much? Did it have a positive difference taking them at these times?

Hi caz, I've read somewhere that the body processes thyroxine better when asleep. That is why I suggested taking the [readily available thyroid hormone] T3 in the morning and the [needs to be converted by the body] T4 at night. It seemed the best way of juggling the variables. (Though vice versa if you work shifts snd sleep during the day.)

Oh right, I will definitely add this into the list of things I am going to try as I find Levo makes me feel groggy, so maybe that might help me with this too if I take it at night.

thanks

Hello Sahitocaz:

I used to be on Levo way back in 1987, (before my converting problem was discovered), and I took it at night.  Mostly because of no food in your stomach and I have other meds in the morning I had to take. 

I am for whatever works for you.  That is why I say "Play Around" with it.

I would say, 20 mcg of Liothyronine is way too much and so is 100mcg of Levo.  Try 10mcg or even 5mcg then later more than 6 hours or at bedtime do your Levothyroxine.  T3 LIO  is a very powerful hormone and is faster absorbed and more readily available in the body.  So 20 mcg would put me in orbit....LOL.

The problem is doctors  use guidelines and go by weight and symptoms. Some doctors start low and adjust upwards depending on the blood work. Some go straight in at a certain dose.

Our bodies have to be able to tolerate it all, so that we do not experinence bad or adverse symptoms. This is the hardest part of the disease and finding that dose is paramount!

I have been there and done that as they say. Do whatever makes you feel better and if you need to take the pill and cut it into small pieces then do it.  I would add in slowly.

Keep us posted on how it goes, it is nice to see if we can make a difference and help someone.

XO Shelly

Hi Shelly, yes it's such an experiment most of the time. Dreading going back to work tomorrow when I'm feeling so awful. I'm not sure there is a great deal more my doctor can do for me and I'm not keen on him trialling these things when he doesn't understand it fully (through no fault of his own, he is not an expert). Looking forward to seeing the specialist next week and seeing if he has come across these issues with other people. I have a feeling they will try the liquid slow release liothyronine or NDT. I will start taking my Levo at night in the meantime to see if it makes a difference.

ill let you know how I get on!

Caz, how are you doing?

Hey Barbara thanks for asking

They have managed to track down my notes from the point of diagnosis eight years ago and my doctor reckons I was only borderline and my specialist was dubious that I ever needed thyroid meds in the first place - I'm totally devastated as they may never be able to take me off them due to being massively over-medicated for years. They are sending me for an ultrasound in a months time to rule out other causes (such as thryoiditis and thryoid nodules), as I don't have hashimotos, but the specialist couldn't even feel my thryoid gland on examination so he thinks these causes are probably unlikely too.

Im already down to 75mg of levothyroxine (was on 125/150 alternate days) and feeling pretty faint, but still early days.

They are also going to treat me for lymes disease (which I wasbt expecting). They said this causes similar fatigue symptoms but is almost impossible to diagnose so they give you a course of antibiotics for a month to rule this out as an additional factor.

In addition to this they will carry out a cortisol dexamethasone suppression test to rule out adrenal problems as my random results were double the "normal" amount.

I am relieved that they finally seem to be doing some investigations for me, I just hope they are not too late to put things right. If it turns out I do need some medication, they have agreed to trial me on NDT, but would have to pay for this myself which would be a shame.

How are you getting on hun? X

Hi caz, that's a bit of a downer, though at least you now know. Have you heard of the pharmacist that was diagnosed with hypothyroidism and 'cured' herself through diet and certain healthy interventions to get her body and thyroid working peoperly? I'll PM you her name as you may want to investigate whether there is anything you can do to help yourself. If you register on her site you'll get lots of good information free. As to how I'm getting on, I'm now taking Natural Desiccated Thyroid (NDT) and feel great on it. The stiffness in my joints has gone, as has the muscle weakness. No more shooting pains through my muscles. No longer cold to my core despite being at the top of the T4 range. I have a pet theory that the patients who do well on NDT are those without a functioning thyroid to convert the T4 to T3, so they convert it less well. My thyroid is totally defunct which, given that your thyroid isn't, would explain why you didn't get on with NDT. I'm now trying to fix all all the things that have gone wrong because I was under medicated (according to my symptoms, not the blood tests), specifically food allergies and intolerances. Good luck!

You do seem to be decreasing the dose rather quickly. You could try decreasing by a quarter of a 25mcg tablet every two days, to give your body time to adjust. You will have decreased by 25mcg after 8 days.

Hi Barbara - good to hear you are doing well! Yes I think the fact that I may not need medication may be the reason my heart went into overdrive on T3 meds. Having said that, if I do need to take something I will be giving NDT a go (but hoping a reduction of levothryoxine on its own may help me see an improvement as taking synthetic meds is never as good as producing your own hormones). 

The the reason for the quick drop in dose was that I reduced the Levo previously to 75 whilst taking the liothyronine, so thought it may be silly to increase the dose again, just so I can reduce it anyway, so I dropped the 5mg of lio instead. I wanted to just bite the bullet and let my body try and catch up over Christmas. But if I reduce it further, I will be dropping it much more slowly as like you say it is better to do it this way rather than a big drop quite quickly. 

Ive not heard of that pharmacist but would be curious to find out - I'm always willing to try new things- does she have a book out?

caz 

Barbara

Is it possible to pm me with the name of the  pharmacist who cured her hypothyroidism with diet etc?

Many thanks

Cindy

Name pm'd. I don't know how scientific her ideas are, though the one on the parasite blastocystis hominis checks out on the US National Institute of Health website when I researched it, so I have bought the probiotic yeast saccharonyces boulardii she recommends as one of the treatments - on the basis that it won't do any harm and I can buy it from a reputable supplier.

Generally I tend to use the ideas that are free and harmless - I need to do something to address the food allergies and intolerances I've been left with after being under medicated for hypothyroidism for 20 years (on symptoms, not blood tests).

At the moment she is giving a link to a free webinair during 18-25 January 2016.