Fast heart and feel no better on t3: I have been... - Thyroid UK

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Fast heart and feel no better on t3

B0896 profile image
21 Replies

I have been on t3 only for over a month now, and I am currently on 100mcg t3. However I am a bit concerned by my heart rate which is 25bpm faster than normal. I also had some initial improvements in mood and physical symptoms which seem to have vanished. I don't know whether to stay on t3 and give it more time, but my heart rate concerns me and makes me feel I'm overmedicated but haven't given the t3 long enough to metabolise on the previous doses. In some ways i feel worse than before though it might just be a reaction to not feeling better as soon as i wanted and just waiting to start living again.

Maybe I Should try NDT as my first hormone replacement as my heart rate indicates that t3 might be too much to handle for now, and I even felt better on Metavive 2 porcine which isn't prescription quality.

Another unusual aspect to my scenario is that i have high in range ft3 and ft4 but a tsh of about 4. I felt that maybe it was resistance however my elevated heart rate makes me think not.

All I know is that i have clear hypo symptoms such as: bodywide non pitting edema that is spongy, very dry hair, extreme fatigue and depression, air hunger due to swelling, enlarged tongue and nose, red and dry eyes, yellow face, feel disconnected, (perhaps due to crippling fatigue) ascites, sparse hair, (had improved) flushing of face, slow wound healing leading to minor scarring on face, adrenaline rushes, blurred vision since age 12, poor memory, low temperature of 35.7c, stiff joints and muscles, hoarse voice due to swelling, abnormal liver function tests. However i have some more unusual symptoms such as massive weight loss, anxiety, muscle wasting.

This has to be hypo right? I have been to several doctors and none could work out what was going on, and some even admitted that my symptoms indicated hypo but they could not treat as i was in the normal ranges. My private doctor diagnosed me as hormone resistant but i didn't trust the metavive 2 as a reputable replacement so self medicated on t3. I had improvement in areas such as: eyebrows are thicker, eyes are whiter and glow occasionally, less depression and fatigue at times, less brain fog, normalised complexion, softer and glossier hair.

However, this was short lived and i feel dreadful again. Why did I feel better and then worse, and should i maybe consider swapping to NDT since my heart rate has been elevated consistently the last few days and has at times been over 100.

Many thanks, and sorry for the long winded message but I feel really desperate at the moment and I'm finding it hard having to stay at home with my parents and no life at age 20.

Just thought i would add that my mum has hypo too and we look and feel similar with regards to our symptoms. She has a tsh of 7, but that was two years ago and she hasn't been treated.

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B0896
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21 Replies

You've increased too quickly and are overmedicated. Did your private doctor not advise you on how to take T3?

Clutter profile image
Clutter

B0896,

Fast heart rate indicates over medication. T3, like Levothyroxine and NDT, isn't a quick fix whch will make you feel well. It should be gradually increased over weeks and months until symptoms improve. You probably felt better initially because of the T3 but as it has built up and you've become overmedicated you are feeling wretched. I was over replaced by my doctors to suppress TSH and I felt desperately ill.

100mcg is a very high dose to have reached within a month. There are dangers in over medicating ie atrial fibrillation and, over a long time, osteoporosis. I suggest you either have a FT3 test to check FT3 remains within range or, if you insist on dosing by symptoms, radically reduce your dose. I would advise skipping T3 for 3-4 days at least to see whether heart rate reduces and resume T3 at 25mcg.

Your symptoms could be hypothyroidism but could also be due to other illnesses. Weightloss, anxiety and muscle wasting are more commonly hyperthyroid symptoms.

B0896 profile image
B0896 in reply to Clutter

I will significantly reduce the dose and increase more slowly from now on. I am almost certain these are symptoms of lack of thyroid hormone as the swelling i have is non pitting and thickened and the hallmark of hypo. However, i can pinch most of it despite how it's thickened. I agree that the weightloss etc is more hyper. So i am very confused by everything.

Clutter profile image
Clutter in reply to B0896

B0896,

If the symptoms were due to low thyroid hormone, which high in range FT4 and FT3 doesn't support, your FT3 won't be low after a month of 100mcg T3 but it will still need time to metabolise to work on the symptoms.

I recommend you guide your dosing by FT3 levels. thyroiduk.org.uk/tuk/testin...

B0896 profile image
B0896 in reply to Clutter

Would my high tsh suggest resistance? From the studies i have accessed my tsh is high and can imply resistance despite my high ft3 in the blood. Surely with resistance you would not dose according to hormone levels in the blood? I am open to other conditions causing my symptoms. But this seems textbook hypo and i have a family history of thyroid dysfunction.

Clutter profile image
Clutter in reply to B0896

B0896,

Thyroid hormone resistance is outside of my experience. The doctor you saw obviously didn't think massive doses of T3 was the answer or he wouldn't have prescribed 2 x Metavive.

B0896 profile image
B0896 in reply to Clutter

That is true- he diagnosed me with ISTH though and told me he uses t3 to treat this at the previous meeting. Maybe i need another doctor then haha

Clutter profile image
Clutter in reply to B0896

B0896,

He didn't say 100mcg T3 though did he?

B0896 profile image
B0896 in reply to Clutter

Fair enough, I see that I have approached this the wrong way. Maybe the fact that supra physiological doses are used for the condition led me to increasing way too quickly. But i have all the signs that I'm overmedicated so will wait a few days and decrease.

Clutter profile image
Clutter in reply to B0896

B0896,

Even when taking supra physiological doses the dose will have been titrated gradually.

The 'dry sponge analogy' in this link explains why dose should be gradually increased.

thyrophoenix.com/adjusting_...

Scazzoh profile image
Scazzoh

Hi Bo896, if you have gone from zero to 100mcg T3 in four weeks that is way too much and too fast. T3 is four times stronger than T4. It takes about six weeks for the T3 to get into your cells from the bloodstream, but if you are taking too much, you will get symptoms similar to the ones you are describing. What does the information in the packet advise you to do? The usual advice is to take 10mcg twice a day for a few weeks and increase slowly. I think you should reduce the dose, but I don't take T3 so not sure how to do that. I guess you'll get some advice about that from someone else on the Forum.

Why didn't you trust the Metavive 2? I hadn't heard of it and it looks quite interesting - British as well.

Marz profile image
Marz

Are you taking any other medications ? Have you been tested for Ferritin - Folate - B12 - VitD ? - and do you have thyroid anti-bodies ? Sorry another question - how do you take your meds ?

B0896 profile image
B0896 in reply to Marz

I have done these tests. If i remember they were around halfway up the ranges. But i will definitely test again :) I take the t3 first thing in the morning with a single dose. I have no antibodies and my tsh of 4 is statistically high given this fact.

Marz profile image
Marz in reply to B0896

I only asked because we need good levels to feel well and for thyroid hormones to work :-) Hope you get it sorted soon.

Do you wait an hour after taking your T3 - before eating or drinking anything other than water ?

Rapunzel profile image
Rapunzel

Maaaan B0896 that's a whole lotta T3 - especially in a month. I so understand that you want to get well - and quick - but please take a moment.

Quick ain't going to happen. Your thyroid started kicking off ( if indeed it is your thyroid - your bloods are way off to be sure ) a long while ago and you will need patience to help get it back to normality. Looky here

thyrophoenix.com/adjusting_...

You have to go s-l-o-w whatever thyroid hormones you're using. I'm sorry. I know that's not what you want to hear. But if you want to get better, you have to be patient. BTW I would be wary of Metavive also as there is no definitive measurement of what it contains.

B0896 profile image
B0896 in reply to Rapunzel

I agree with everything you've said. i will probably skip the dose for 3 days and start again on 25mcg like Clutter recommended. I don't trust the metative either and i am surprised my doctor led me to this as he mentioned t3 at the previous meeting :/

I've been on Metavive II and adrenavive II for 8 weeks now. I had to start on 1 tablet and have very gradually worked up to 3.. Ive stopped taking any other synthetic drug and feel better than I have in 25 years..

Rapunzel profile image
Rapunzel in reply to

Link to helvella 's post on this healthunlocked.com/thyroidu...

'Gradually' 1 to 3 tablets in 8 weeks ? thyrophoenix.com/adjusting_...

I'm really glad you're feeling well Hidden but I'd definitely stick at your present level for a couple of months now and see how you feel then. :)

Gazebo profile image
Gazebo

I haven't got the hang of all these thyroid levels yet but am wondering whether you might possibly have Hashimoto's - which, I believe, is more of an auto-immune response than simple hypothyroid. The reason I ask is that I was diagnosed as hypothyroid many years ago but it got to the point where I became zombified. According to the routine tests I fell within the normal range so was basically told that I should continue taking my Thyroxine - as normal however, I was feeling like death warmed up so got tests done privately - which revealed that I have Hashimoto's with a touch of Grave's thrown in for good measure - so my symptoms can fluctuate between hypothyroid and hyperthyroid. The standard response from doctors seems to be to keep on taking Levothyroxine and ignore the other side - which we know will probably end in the thyroid gradually attempting to commit suicide -requiring radioactive iodine / surgical removal etc. I feel frustrated at this aproach and feel that allopathic medicine has a habit of simply treating or suppressing symptoms rather than looking for the underlying reasons that we have the condition in the first place.

Dr Izabella Wentz is championing the cause of Hashimoto's and lays great store by identifying the root cause (s) of the condition and tackling it. By doing that, she, herself, has managed to come off all thyroid medication and is leading a happy, healthy life - and has managed to help others through the morass too. She's written books, made DVDs and has a Hashimoto's forum on Facebook where she posts blogs and answers questions. She has also set up a website: thyroid pharmacist.com

Another person I found to be a mine of information about autoimmune type conditions is Dr John Bergman who has hundreds of YouTube videos on various autoimmune conditions. A Google search for JOHN BERGMAN THYROID reveals loads of videos on this topic. Both he and Izabella Wentz point out the necessity for getting to the root cause and dealing with it rather than simply treating the symptoms since treating the symptoms doesn't make them go away. They just remain there waiting to resurface / spread to other conditions.

What emerges is that they indicate that causes can be many fold - stress / allergies / sensitivities / environmental factors / dietary issues / malabsorption/ hereditary issues etc. The big hot potato though is intestinal (hyper)permeability or leaky gut syndrome where toxins, microbes, undigested food particles etc leak through the intestines into the blood stream and are carried to other parts of the body -such as the thyroid - resulting in inflammation that then apparently activates the immune system to attack itself leading to autoimmune conditions such as Hashimoto's. It has also been posited that, if root causes are not sought and dealt with, the door is left open for further autoimmune and health conditions to arise. That would certainly seem to have happened in my own case so I am starting to look sideways at other ways of dealing with issues. Eg: gluten and lactose intolerance have often been implicated as causes of leaky gut. I eliminated both gluten and lactose from my diet and gradually lost over two stones in weight without trying. I happened to mention to my GP what I was doing and she said it was a shame to eliminate gluten unless I had to so she tested my blood to see if I had coeliac's disease -which runs in my family along with hypothyroidism / Hashimoto's. I didn't so re-introduced gluten to my diet. Several months later, my stomach had expanded markedly and I had gained a lot of weight. I advised her I was concerned about this so she arranged an ultrasound and discovered I have developed a fatty liver and gallstones -which also run in the family. Discovered that often there are no symptoms to gluten intolerance and that sometimes one might not be intolerant to gluten -merely sensitive - but that that is enough to trigger things off so, a few days ago, I started to eliminate gluten from my diet to see if that will help.

I was concerned about brain fog and memory issues so did a bit of research into this and came up with Ashwagandha which is reputed to be an adaptogenic that can help with various endocrine disorders - hyper / hypo thyroid / Hashimoto's etc ( good article on it in: naturalendocrinesolutions.c...

Am now thinking of consulting with an Ayurvedic practitioner to discuss ashwagandha further -as Ayurveda tends to look for root causes and treat the person as a whole - instead of simply trying to suppress / eradicate symptoms only for them to reappear or come out in a different form.

Am now beginning to wonder if the reason why most GPs insist that, if the tests come back ok, then the patient should just accept that to be the case - even when there is definite evidence to the contrary - is less to do with ignorance and more to do with them knowing that, once one starts having both hypo and hyper symptoms, it would become notoriously difficult to manage. The reason this occurs to me is that, at one point my Thyroxine was reduced from 150 to 125 and then to 100. I naively asked if that meant the thyroid was improving - although it felt far from it - and was advised that it didn't mean that at all but rather, there were changes taking place in my thyroid which might necessitate further action at some point in the future so they would simply monitor things until that point and deal with it when it happened. With hindsight, I am wondering if they are waiting for it to self-destruct to the point that it requires removal / radioactive iodine etc - so that acts as another impetus to look sideways for treatment -to find and treat causes rather than symptoms. Hey ho....'Happy' 'daze'!

B0896 profile image
B0896 in reply to Gazebo

Thank you for such a detailed response :) I have done antibody testing which came out negative. I have low cortisol in the morning so it is possible this could be causing cellular resistance. I have had positives on taking t3 and metavive at times, but they have been very short lived and i feel ill again. It's early days atm though, so i planned to try metavive 2 and if necessary add t3 to it and see if this works. A month ago i felt a lot better on metavive, albeit inconsistently. It may be that im just becoming hypo and have a higher requirement for t3, or partial resistance for some reason (maybe morning cortisol). I would say most of my symptoms are hypo related, and the heart rate could be explained by a noradrenaline response which also explains the weight loss. Taking the metavive at night certainly helped lower my heart rate down 61bpm which is what it used to be a few years back. Before any medication, my heart rate was in the high 70's. I will see how it goes with the metavive, increasing at appropriate intervals. I just hope it was the metavive that helped before and not coincidental fluctuation of symptoms. However, i felt mental clarity that i had not felt in years. I'm sorry to hear about your issues; it all sounds pretty complex. I hope things get better for you if they haven't already!

It's interesting you mention food intoelrances as cutting out gluten, and eating healthily helped my swelling at times, but I feel that i was jsut retaining less water for the mucin to grab on to as it was only intermittent improvement. It's definitely myxedema which i find unusual considering my high ft3's. This makes me panic a bit as i don't know if there is a secondary issue going on. However my tsh is 4 which is more than just suspect.

Gazebo profile image
Gazebo in reply to B0896

Looks like things are pretty complex for you too. Wish we had a John Bergman over here to turn to. Think he does Skype consultations for those that live at a distance. Hmmmm. .....

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