Sorry to post again but I am still having real trouble with T3 and I just don't know what to do. Levo did absolutely nothing for me and just 75mcg took me up to the top of the T4 range but a T3 only 16% through and I had just got worse - I also had low iron, vit d and was eating under 1200 calories a day so all things that cause conversion issues. Since starting on t3 as I have said I have seen huge improvements in some areas namely that it has enabled me to start eating again and reduced my gastroparesis and reflux hugely, sent my vits and mins up for the first time in years but my fatigue is better but not great.
However ever since starting T3 I have also had issues (more as treatment went on) with shaking, dizziness, palpitations and faster heart rate that sometimes coincides with an intense sensation of anxiety and panic. I had it really badly on 10mcg a couple weeks ago despite being fine on 10mcg for a time before alongside headrushes on standing but after increasing my calories it improved again. However now again its back and still on only 10mcg I am suddenly getting palpitations, shaking, periods of intense anxiety, head rushes on standing and my heart rate is reaching 84 at periods often 2 hours after a dose when my usual heart rate is 60 and it usually sometimes goes up to 72/76 at most at 2 hrs after a dose. The palpitations I experience is that it feels like my heart is having to beat harder/stronger at every beat. Nothing else about my life has changed except for the fact I have now been eating a normal intake of 2000 calories again for the last 10 days - the first time in almost a year - and that the last few days when its been happening my digestion has been worse - very constipated and nauseous full with eating. The last few days the palpitations etc didn't start until 2 hrs after my afternoon dose (and 1 hr after eating) but today they happened 2 hours after my first dose (and 1 hr after breakfast) and I also woke up with a mildy elevated heart rate and a bit shaky this morning and also still felt uncomfortable and full despite not eating since 9am the night before.
My last blood test was only 3 weeks ago and my T3 was only 70% through the range and my t4 was also 70% and my vits and mins were all good. My endo told me to persist and increase to 15mcg which I tried and I thought I would be ok as I didn't get the usual headaches I have got in the past if a dose increase is too quick/much but got exactly the same heart symptoms after only a day on it and so came back down and was OK again - at that point I was not yet eating 2000 calories. I was fine for the last couple weeks - heart stable no shaking etc but now I am like this again. I am just so confused and struggling to know what to do. I am scared to decrease my T3 dose from 10mcg and I can't see how it could now be causing this but I feel bad.
As I said I still have digestion issues which seem to coincide with the symptoms and I think my digestion is struggling more with the increase of food (which I am now going to try to rectify by improving stomach acid) and I get very fatigued and notice that the palpitations and increased heart rate is also about 1hr after I eat but could digestion issues really cause these problems? I also wondered if the increase in my food intake back to normal amounts could have impacted my conversion in any way as I know calorie deficit can cause problems. I just do not know what to do and I am really struggling. Any advice would be hugely appreciated.
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Rather than concentrating on the 'numbers' maybe concentrating upon your symptoms might work for you. I should also state I'm not medically qualified.
I think you'll find the following link helpful and it is by a scientist/researcher who only took one blood test for the initial diagnosis. Thereafter it was small increases concentrating upon relief of symptoms. He would never prescribe levothyroxine - he only prescribed NDT or T3 for those who were thyroid hormone resistant.
How’s your diet? Are you eating well & counting macro & micronutrients rather than calories? Are you eating fresh unprocessed foods that will promote good gut health? Have you tried lemon in water or apple cider vinegar before meals to improve your stomach acid & help digestion & absorption?
If the above is confusing, have a look at Chris Kresser’s website which is free. He has a lot of good suggestions for improving our digestion & general health, as well as autoimmune disease.
Thanks for the reply! Yes I am - I wanted to make sure I get as much goodness as possible after last year and I am currently eating a serving of a carbohydrate like buckwheat pasta/oats/potato etc with vegetables/fruit and a good portion of healthy fats and protein. That my next step - I have silent reflux so the acid reaches my throat and causes problems. Last year I tried the acid water before I knew I had hypothyroidism and it helped digestion a lot but burned my throat badly but now that my reflux has improved I am going to try it again - I definitely think I have a low acid problem because I did the bicarb soda test last year and never burped and I also get nausea/fulness , constipation and I also have dreadful acne right now that worsens with my digestion issues.
That's good, but don't have enough acid to burn your throat as that's not good for you or your teeth. Try a spoon of ACV in a glass of water prior to eating so it's well diluted. I put a slice of lemon in my water bottle that I carry around & take to bed for morning meds, though sometimes I'll add a pinch of ascorbic acid if I've run out. It's not strong but every little helps. I also like a splash of vinegar on food as a condiment.
Try a spoon of chia & linseeds with a big glass of water (>20 times more water to seeds as they absorb A LOT) to help your constipation. I soak mine for 30-60 minutes in kefir, though it works with yoghurt, water or orange juice. It'll be very thick but tasty. The seeds are good for protein & healthy oils, & the linseeds should help "scrub" any gunk stuck in your colon. It might not fix your acne completely, but you might feel generally better for having cleaner gizzards.
Thank you so much for the advice! I was actually looking at absorbic acid so that good to know! I was drinking the acv diluted its just the reflux after that would burn but hopefully I am improved enough now it won't! I definitely want to get the acne sorted - its rather funny I had the clearest skin as a teenager and now its sore spots all over!
I still have oily skin & outbreaks though it's a long time since I've been a teenager. I swear by witch hazel & a weekly scrub with a teaspoon of ricebran flour & a pinch of bicarb.
I'm not an authority on T3/T4 combi, since I've been on it for only three weeks, but I happened to have a little rougher week with similar symptoms.
I came to the conclusion that my thyroid was probably "leaking" a bit, and messing up my levels for few days, since I feel fine now without touching my dosage.
Have you been easing up your T3? I had to start really slow, because I would get an unpleasent wired and lightheaded feeling if I took too much.
I was thinking about that - I don't know much about the hashi swings but my situation is very confusing - I have central hypo so was diagnosed with normal TSH and low T3 and T4 and no antibodies but my endocrinologist who said I have central is also now saying I probably have hashimotos so I am very confused haha! Yeah I had to take my T3 very slowly - I had to start on 5mcg because 10mcg was too much and I had to stay on that for weeks before I could increase and I had no problems after. I've been on 10mcg for around 2 months with a couple attempts at increasing to 15mcg which caused issues but aside from that I have been ok until the last few weeks of problems becoming more intense so I am thoroughly confused!
Ok, seems to be a really confusing situation, probably beyond my "pay grade".
Maybe someone more knowlegdeable can help you, but if there is whiff of hashimotos then hashitoxicosis is something to consider. I bet any extra hormone on top of your medication will mess you up. And I guess it's possible to have both central hypo and hashis?
I wouldn't hesitate to skip T3 when feeling overmedicated, but it's up to you of course. Or try a lower dosage for a while.
The following may be helpful. Dr Lowe was an expert in the use of T3 and he prescribed for his patients NDT (natural dessicated thyroid hormones) or T3 for those who had thyroid hormone resistance.
When you have been unwell for a long time it is difficult to know how you should feel.
Your usual heart rate of 60 is much too low (unless you are an Olympic athlete) and is much better at 72/76 or even 84.
"head rushes on standing" are an indication of low blood pressure (due to inadequate T3) and these should improve with correct thyroid medication.
When you take thyroid hormones the body's control mechanism detects them and the thyroid gland makes less. For this reason a top-up dose often does not work and people need to take a full replacement amount or sometimes more. Your overall dose is less than the full replacement amount.
As you are getting improvements on 10 mcg you should continue with it, improving your fitness and diet. When ready you could try increasing to 15.
My pulse rate is 60 and always had been, until taking levo catapulted me into 100+ p.m. Cardiologist couldn't work it out but when I added some T3 to T4, pulse rate dropped to my 'normal' 60 bpm.
My hustand's pulse was 32 b.p.m.- when he played squash a lot.
My understanding is that a lot of the problems caused by hypothyroidism are due to lack of blood flow to the organs, including the skin. A low heart rate, especially if combined with low blood pressure, very much limits that blood flow.
Thank you for the help! I think I will follow your advice and stay on the 10mcg for now and work on improving digestion fitness before I look at changing anything!
I’m early days on T3 also and experience some heart pounding which is similar to what I would expect after a heavy gym session. It’s frightening if it just happens when you are sat doing nothing!! I hope you work it out. I feel for you
It's important not to have symptoms of over replacement of T3. I think if you spread out the dose that may help.
Paul Robinson's blogs can be found online. He knows a lot about T3, as he's been on it for 20 years or so and written 3 books including 'Recovering with T3'.
He might suggest that you look at your adrenals first as they work in a rhythm with thyroid hormones.
Your story is very similar to mine! I was put on combo treatment (75mcg Levo and 20mcg t3) and for a very long time I had shakes, anxiety and felt absolutely dreadful. I was convinced it was the t3 and tried reducing the dose which didn’t seem to make any difference. I’d been through a very difficult 6 months and I hadn’t been eating properly due to lack of appetite and stress/tiredness. Then I wondered if my symptoms were due to cortisol and completed a saliva test (Regenerus) which indicated early adrenal dysfunction. Under guidance from my naturopathic doctor I began to take an adrenal supplement. In addition to that I also made sure to take electrolytes as I follow a ketogenic diet and had given that up. Ten days or so later my symptoms have subsided and I’m feeling almost normal again. I don’t know if this would help you and I’m not an expert by any means but just thought I’d share my experience.
Did you ensure you had all vitamins and nutrients at optimal levels prior to starting T3? It is always best to address the easy problems first. Optimal vitamins etc also helps conversion. aMost endos do not bother with this. I think I lost the plot in your post, now cannot remember what dose the endo put you on? If it is this you cannot tolerate without all the unpleasant symptoms try asking him for a solution. Unfortunately most don’t like patients to dose outside prescribed amounts. They certainly don’t care to be told patients got advice from strangers online. I would hate to see you dismissed from endo and without any prescription.
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