I am three months in to taking Liothyronine in addition to levo and all was going swimmingly until about two weeks ago. I had gradually increased T3 to 10 mcg/day, with ~ 80mcg levo. I was feeling good & results on first look test were also good. T3 had increased from 3.7 to 5.2. T4 had dropped from 21 to 17.9 (normal Medichecks ranges). I was feeling fine at this stage.
About 10 days ago I started to experience severe pain in my neck & shoulder which could well be a muscular skeletal issue from some gym work. My heart rate has been extremely high, sometimes over 100 BPM just on moving from room to room. Heart feels like it's beating too fast all day, symptoms seem to start in the morning & settle quite well in the evening (70BPM).
I thought I must be a little hyper so I reduced the T3 dose to 5mcg, one dose in the morning but problems continue. I am not brave enough to consider taking additional thyroid hormones of any type at this stage.
My GP referred me to the local hospital last week due to combination of pain & fast heart rate but they did not find anything of immediate concern, they will send me a follow up appointment to rule out irregular heart rhythms but 2 x ECG's were normal. The GP thought the heart rate could be a response to the shoulder pain.
Adding to the problem & my stress levels is that I am due to fly abroad short haul in under 3 weeks time.
The T3 situation is very much on my mind. I was feeling reasonably OK on levo only, to help my stress levels & rule out the T3 as a contributor, can I just stop taking it & revert back to original level of levo. Am I likely to feel ill effects of messing about with dose like this? At this point in time I would rather live with being a little hypo than be dealing with this rapid pulse daily. I am quite afraid, especially to fly.
Thanks for any input.
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Will_blue
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If your FT4 was 21, it's not a good idea to go back to your original dose because the FT4 is too high, and that's not a good thing long-term. Plus you are a very, very poor converter, so you do need T3. With an FT3 of 3.7, you were not a little hypo, you were very hypo. And that's not good, either.
Thank you, you will understand my reasons for trialling the T3. Do you think it is sensible to just row back on the dose to 5mcg for a period. I am trying to address the shoulder pain & will follow up on arTistapple's advice below.
Most things are worth a try. You cannot know in advance what will work and what won't. So, try splitting the dose. But, 5 mcg is such a small dose that I'm not sure splitting it will help - the split dose will be so tiny. But, if you never try it, you'll never know.
I had a broadly similar experience. Very broadly. I did very well on T3 for about one month. Looking back there are a number of mistakes I made, some might apply to you.
1.) Taking T3 only once per day is not recommended. T3 has a Circadian Rhythm which benefits from it being taken at least two times per day - but its very individual.
2.) I did not drop my Levo at all. On reflection I think I should have, although not everyone would agree with that.
3.) I got ‘cocky’, I was doing great and got lazy around my food intake. T3 ups your metabolism and that needs fed! If you take T3 and don’t feed it properly you can come up against problems. Hypoglycaemia and fast heart rate being an important one.
Thank you for advice. I may try splitting the dose tomorrow into 2 x 2.5mcg. I have requested a medichecks kit to see what T3/T4 levels are like, I followed a consultant's advice on the levo drop - it was minimal. Levels were OK a few weeks ago (as above)
I'm interested in your advice around food, I take the T3 first thing & don't normally eat until lunchtime. Perhaps I'll try breakfast aswell. I have never suffered with my weight in all of this but I have been losing weight recently, nothing drastic.
Could I please ask if things settled for you & was your response to slow the dose as I've seen some suggest?
Have you got a ref, or refs for your third point..I’m interested in blood sugar and fast HR, plus food intake, being linked to increased metabolism from upping T3? 3 weeks ago my Gp reduced my levo from 75 from 100 ( still taking 3x5 mcg T3) because he was convinced over medication on levo was causing high HR, meanwhile my blood glucose has changed obviously ( I am a diabetic with two insulins and continuous blood glucose sensor) and I can’t find any link to thyroid hormones and BG except in initial diagnosis of hypothyroidism/ diabetes.
You'll want to search for papers that research FT3/FT4 ratio significance in Thryoid disease. There's quite a lot out there. Such as a too high FT3/FT4 ratio has an association with metabolic syndrome, elevated triglycerides, lower HDL and insulin resistance.
Thanks these levels might well have been off 25/20 years ago, when no medic I came across offered much help, I started self treating hypothyroidism with T3 , probably too late, but now my cholesterol/ triglycerides are fine even without statins which gave me leg pain. I would hope if I appeared with some of these symptoms/ blood results now as new, younger, patient something more inclusive would be done …doubt it as no thyroid endo in Trust!
Thyroid issues are all about metabolism. Diabetes is a problem of metabolism too. Professor Leilani B. Mercado explains all this much better than me. helvella ages ago put up a webinar “Thyroid Disorders as Cardio-Vascular risks” where she is the speaker. Third world endocrinologist paying proper attention to thyroid research old and new. Hugely matter of fact. It’s brilliant. She covered virtually the whole kit and caboodle of so-called Co-morbidities of thyroid issues. Chances are you will find it still on YouTube. Slow metabolism means all sorts problem re: food issues for hypos. Slow gastric emptying (or fast if your main problem is hyperthyroidism) directly affects your insulin activity and glycogenesis. Meaning basically your whole system of energy production (health) is just not working.
I hope you find it Judith. I look at your case/history and see so many complications. Basically if I had been recognised (many opportunities have arisen in my history, with hindsight) as having/being subclinical hypo and treated properly I would not be in the mess I am either. I trusted the ba..ards and I am still trying to disentangle myself from their errors, whilst trying at the same time to get their help. A monumental task.
Combination of my Long Covid brain fog, difficulty hearing what Prof was saying while trying to find point on slide plus two advertising breaks that seemed to break the flow of talk meant I had some difficulty understanding everything unfortunately. But from what I could tell again it’s the separation of hypo / hyperthyroidism into two very different diseases before any treatment that we can see the effects on for eg heart, obesity etc…I have never found anything that indicates over treatment with thyroid hormones for a hypothyroid alters their symptoms to become like a hyperthyroid. So how does my very low TSH but mid range FT4/3 cause high HR or high BP? I presume I can’t pick and choose which symptoms I have from her hypo/ hyper graphics eg raised systolic not diastolic pressure, raised HR but on standing not so obvious at rest? I think something else is happening ( tho I had independently researched the renin angiotensin axis and followed the related health protocols there) caused by LC and not thyroid/ pit. axis. I have asked to referred to the endo in Newcastle , Salman Razri, who has a particular interest in thyroid/ heart but as an almost full time academic this might take months!
Judith I will PM you. Just had another unfruitful meeting with my GP although this time without rancour because basically I have given up with them. About as much use as ……
I assume your doctors have checked your iron levels? Even if they have checked ferritin it's worth asking that they do further checks, sometimes a ferritin test misses anaemia.
My iron panel indicates iron at bottom of range & a transferrin saturation percentage below range. Ferritin is always OK @ mid range & CRP levels are low (<1). This is a bit of a puzzle to me.
I have had to stop the T3 due to ongoing racing heart, weight loss & anxiety so seemingly overdosed.
I'm disappointed as my levels on T4 alone have been T4 @ 20, T3 @ 3.7 for a long time. I don't suffer with too many symptoms, some constipation, puffy eyes, a bit cold, high cholesterol. Endo thought I would benefit from T3 and for first 10 weeks or so I felt really good.
Do you have any information on the link between low iron & unsuccessful treatment with T3?
I am wondering what to do next when the dust settles.
As far as I remember hypothyroidism is associated with low iron levels. It looks like hypothyroidism causes iron deficiency sometimes. It is sometimes claimed that low iron causes hypothyroidism but I don't go with that theory, a large part of the world population is anaemic and not hypothyroid.The salient point is you have low iron levels and have cardiac signs of low iron. This needs to be addressed, to get your iron levels up. Your GP may be able to sort this out or else refer you on. Your cardiac issues need to be addressed before anyone blames thyroid medication.
Yes I remain unsure of how much Levo should be dropped. Professor Toft made it a modest drop. Endos now talk about bigger drops - a suspicion as to the why? Setting us up to fail? Your endo does not seem to have done that. The Forum often seems to support no Levo drop.
All not much use when you don’t feel well. If people don’t have this problem and many don’t seem to, it makes you feel more alone making your decisions. Recently my endo discussed a 50% reduction in Levo but then refused to treat me, so I still have no idea what drop might be suitable. It’s like everything else thyroid - it’s very individual. There are people like greygoose and DippyDame who can only take their T3 in one dose!
I agree with greygoose though your T4 was too high so aiming for that is not an option. Make your decision around the T3. You have three options. Stop it at least temporarily. Split the dose. Split it and drop the dose a bit (if you can cut the dose up even smaller). Your remark “At this point in time would rather remain a little hypo …..”. Believe me I totally understand!
However ultimately the decision is your own. If you decided to drop it completely temporarily, you can attempt it again later from a more knowledgable and experienced viewpoint. It’s always a choice, no matter what point you are at.
Unfortunately I must add, I have had no luck with re-introducing T3 as I have found I have a continuing problem with hypoglycaemia. For me I must seriously attempt a keto diet. Intermittent Fasting has got me out of Type2Diabetes but not out of the hypoglycaemia trap. I just put up a post today covering my experiences to date.
It’s a guess but if you don’t eat breakfast you may be going too long without food. That Intermittent Fasting style of eating may not be suiting you. The hypoglycaemia phenomenon e.g. increased heart rate, anxiety, sweating, tremor, faintness and more, may be the effect being created. T3 makes it more noticeable. Just being hypo alone, makes some of us more likely to have these episodes. PaulRobinson says in his book CT3M, these must be attended to, same as with adrenal issues before having success with introducing T3 - for some patients.
It depends on the level of the FT4. Most of the time a drop in levo is not needed, given that starting T3 will reduce the FT4 level, anyway. As you say, it's very individual.
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