My doctor agreed to raise my T4 to 88 mcg from 75. She told me it is against her better judgment because it may cause a-fib and she didn’t think I needed the increase. Previously, I was on 50 mcg of T4 since around 2006. Last August I had 5 mcg of T3 added along side that dosage. Still suffering with many Hashi/Hypo symptoms, I was asking for an increase after learning that according to my weight, my dosage for T4 should/could be 100 mcg. My new doctor agreed to raise me slowly. I’ve been on 75 mcg since Sept 4. I noticed some improvement in my symptoms, but not a lot.
Then 3 weeks ago I had blood work done (results below). Following that, I started to take Thorne Basic B Complex and Three Arrows Iron Repair Simply. I’m actually noticing even more improvement on my symptoms since starting these two vitamins. I believe it took three weeks to start to notice this improvement. So now I am unsure if I need the increase in T4 and/or if I should be concerned about starting a higher dosage. It’s not like all of my symptoms have gone away, but I am improving- my thoughts before, which expressed to my doctor, were how would I know if I will feel better if I never try a higher dosage? They kept me on 50 mcg all those years, with horrible symptoms bc I was “within range”. But my doctor’s warning is in my head now and I’m not sure if I’m making a mistake. Any advice would be greatly appreciated!
Nov 6 ( 24 hrs without meds; fasting)
TSH 0.518 (0.55 - 4.78)
Free T4 1.19 (0.89 - 1.76)
Free T3 4.13 (2.3 - 4.2)
Sept 12, 2024
TSH 0.457 (0.55 - 4.78)
Free T4 1.30 (0.89 - 1.76)
Free T3 4.35 (2.3 - 4.2)
March 14, 2024
TSH 2.193 (0.55 - 4.78)
Free T4 1.07 (0.89 - 1.76)
Free T3 3.98 (2.3 - 4.2)
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Sunsetzzs
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if you feel some improvements already , i'd continue as you are for now and see if the improvements continue to build. they might do , and increasing levo might throw that off track.
but ALSO keep the new prescription for 87.5mcg . so that you can try it later if you want to .
if you do , all fine and good ... and if you don't, then you will build up a hand stash of spare tablets giving you a little more freedom to experiment with dose a little whenever you fancy in future. It's also handy in case someone insists on lowering your dose when you are feeling ok,,, you'll still have enough to take what you want .
make your own mind up about when / if to tell gP what you are actually taking ....mine think i'm taking 125 , but i only take 100 at the moment... no way i'm telling them that though ,,, not unless it suits me to.
as long as you make sure you get prescribed some 50 and some 25's , it's very useful to have the flexibility ... it's much trickier to try small adjustments if you end up being prescribed just 100mcg tablets ,
That's not a warning, that's scare-mongering. Highly unlikely that such a small increase in levo will cause A-fib. They're just so terrified of hormones!
Yes, of course she has you doubting. She did it deliberately. She didn't want to give you the increase, and now she's hoping you'll chicken-out. You have to learn to speak endoese!
Thanks for sharing that- it’s interesting to know that the increase helps. I’m glad to know it has helped you. So I guess it comes down to monitoring my symptoms (as usual), which the doctors tend to ignore. Tomorrow will be my first day on the new dosage 🤞🏻
I experienced after my TT lots of palpitations to the point I was afraid of going out of my home. I later found out that my Iron levels were very low. Yet no Dr ever flaged it. In addition fillers can do it too for me. Being on the Optimal thyroid levels are extremely important. Thank you Helvella.
That sounds terrible! I hope the palpitations are now under control. It’s something I will now be aware of, should I develop that symptom.
My iron and ferritin have been a problem for me for over 20 years. In 2015 I had to receive two bags of iron intravenously. That helped a lot, but my ferritin has been steadily dropping since. Since I’ve tried iron supps in the past and they bothered me too much, I stopped taking them. It wasn’t until I read on here about Three Arrow, that I decided to try again. So anyway, I see what you mean about how all these things gd can work together. And yet somehow our doctors don’t seem to understand this 🤦🏻♀️
You could try copper Sunset, there is quite a bit written about how iron plays up either too high or too low if it does not have it's companion copper to activate iron and have it going into the cells where it should be rather than staying in storage. I am on high dose copper 12 mgs a day, I feel good on it. My brain liked it too.
I had the opposite, too high iron and too high iron saturation and felt awfully drained and fatigue. Iron also then collects in your organs and it is a no, no, rusts them out. As soon as I started to take copper I felt some energy. I built up from 6 mgs to 12 mgs. I may even go up to 14mgs. Last blood test my iron ferritin just tipped into normal. It had always been way over on high for years and years.
Someone I know had low iron, and could never shift it. Tablets made her feel ill tummy wise, she refused an iron infusion because they can have problems. She is on copper now, it raised her iron and she feels yards better. Morley Robbins the magnesium and copper guys talks a lot about this.
Hey Katherine, thank you so much for sharing this info about copper! I’ve been learning lately about how this mineral used to be in our soil but not any longer and that most people are deficient in it. I did not know about it working with iron. I will look up Morley Robbin’s.
I’ve not had my copper level tested, but I did start eating a serving of pistachio nuts most days- they have 45% of the daily recommended amount. I’ve also ordered a copper water bottle, which I’ve read if it’s 100% copper and you let the water sit in it overnight, that drinking this once a day will help. I figured I try bc I may not always want to eat pistachios 😃
Maybe this is something that has also been helping me feel a bit better symptom-wise 🤔
I have the copper water bottle too It is no good having copper tested it is one of those that the body robs from else where to keep levels on in the blood although you could be starving at cellular level. The only way you can test it properly is a red cell copper test from a main vein, very painful. NHS would rarely do this.
Another mineral to read up on is Boron. They thyroid loves it, so do your bones, teeth and energy.
Thanks, Katherine, I was not aware of that. I’m excited to try the copper water bottle out, but I have to wait until 12/25.
I purchased the big box of Boron (apparently that’s the only size here that it comes in) and I added a tiny pinch to my water bottle (plastic) but the taste started to make me feel ill so I stopped halfway through. This is a good reminder for me to try again, though maybe with adding the pinch to twice as much water!
I didn’t know there were capsules! That certainly would be easier for me, but I don’t feel like making them myself. It’s crazy that it’s banned! Of course here they fear-monger over the use of taking it. I’ve read lots of testimonials of people that take it and state that it has helped them.
According to Zoe, taking borax is being advocated by so called health gurus, but there's no eveidence to back it up. Just another pointless fad! zoe.com/learn/why-are-peopl...
Quote: 'Scientists have shown that boron is an essential nutrient for zebrafish and South African clawed frogs. But you're probably neither of those.'
I use an Apple Watch which claims to detect afib - and for many it works well.
For me, I get a warning every so often saying it has detected that I am in afib the entire times I have been wearing it over the last week (or something like that).
(The same is true in a hospital situation so it isn't the device getting it wrong.)
The odd day, I see a few minutes not in afib, but I suspect that is because something happens like it slips down my arm a bit.
Thanks. Yes, I did have a full iron panel. I struggle with low ferritin. I plan to have that testing repeated in 3 months.
I’ve read about splitting the T3 for testing. I’ve never done this bc I felt it would be more consistent if my tests were done with the same method each time. So do you think I should start this new way before my next Thyroid testing? Because if I do, I won’t be certain if that is affecting my results or if the increased T4 is.
Funny you should ask…. I was “doing it wrong” (not on purpose) since diagnosed 2 years ago. Then a few months ago I asked that same question on this forum. I too felt the same regards to being able compare results. I did wait a couple more tests but ultimately I decided to just make the leap.
I haven’t posted recently but I will say that my ft3 is similarly high.
I used to take my last t3 about 18-20 hours before testing. Second to last blood test like this, ft3 was just under top range.
I decided to not change my Levo/t3 dosing between my last two tests.
So my last test I switched to the 8-12 hours and it bumped ft3 up to just above range.
So it was hard to let go of the comparisons… but interesting to see the little bump. And now I do feel better and I know I’ll get better advice from the forum.
edit-here’s the post where I was asking myself that same question.
Hmm, so if I’m understanding correctly, your ft3 was just under the top of the range. And then when you split the dose before testing, the result put you just over the range? If so, did that change your prescription?
I’m so glad you’ve shared this bc it’s something I’ve been wondering about for a little while since reading about splitting the dose ~ thanks 😊
click the link I put above and see tattybogle s reply. It really spelled it all out for me, and she said it better than I could.
Regards to changing my dosing - I have also read up on dangers of going over. I’ve determined/learned here that one does not want to go over on ft4 …. But going slightly over on FT3 is ok and works for some/many of us and we go more by symptoms at that point.
I also hit a sweet spot a month ago, and for now - I’m keeping with my 112 Levo and 10 t3.
I believe I now have to work on my perimenopause issues, and a few other things.
I do need to write my own post with an update soon tho.
Thanks for sharing the link- very interesting and makes sense! I will split my T3 prior to my next test. I’m so glad to have found this site- I’ve learned more here from people sharing then I ever learned from my doctors.
It seems there’s always other things for us to work on. The list just goes on and on, but I celebrate the small victories when I can 😊
Thanks, I took my first new dosage today.! And that’s a really good point about a low dose not being good for the heart- I hadn't considered that. It’s so hard that most of us have to learn this on our own.
Raising low levels of nutrients/iron often makes thyroid hormones meds work better as they are vital components in the physiological process.
Your FT3 appears very high in ratio to FT4, indicating you are good converter. And as you didn’t test FT3 for 24 hours after the last dose, FT3 levels are likely much higher …. possibly over- range again. If you raise T4 meds you risk more conversion and FT3 reaching higher elevated levels!
It is not usual to start T3 meds without reaching your optimal FT4 level, supported by good nutrients/iron levels as only then can you assess true conversion abilities and a need for T3 meds. If this were me I would cut the T3 meds out and raise Levothyroxine to a dose that gives steady results 65-80% through range for several months, whilst continuing to optimise nutrients. You might find adequate FT3 levels raise on their own without the need the T3 meds.
Radd, you’ve hit right on my concern. I can’t get over how much the B complex and Iron are making a difference- because I’ve tried vitamins in the past, and I’ve been getting monthly B12 shots for almost a year. While the B12 injections give me some relief for a couple of weeks, definitely the week before I’m due again, I can feel that the benefits have worn off. Since I started the B complex and heme around the same time, I can’t be sure if it’s one or both that are helping my symptoms. And like you’ve mentioned, working with the hormones now, too.
Thank you for your suggestion of stopping T3 while I see what the increased dosage of T4 does since as you pointed out my T3 is high. As my doctor is leaving the practice and I won’t see the new one until mid/late January, where she will then order my blood tests, this may be the perfect time for me to do this. Thanks!
I was like you Sunset, they kept me on 25mcg for about 6 years (I am dodgy with the time limits now), I never felt well, they upped it to 50mcg and kept me on that for 10 years, I got worse. They seem to think a TSH of 4.50 was fine. Dr Chandy stepped in and helped me out with my low thyroid and low B12. On his instructions I got my doctor to raise to 75mcg and 6 months later 100mcg. Felt slightly better.
Fast forward my doctor finely decides to send me to an endo. Who found my T4 over range and my T3 just scrapping through. He dropped my T4 to 50 mcg and put me on 10 mcg of T3. A lot of good improvement for 3 weeks, then I got so bad, joints hurting (a sign for me) hair falling at madly. Blood test showed my T4 had dropped to 12 (not good for me). With help from here I put my T4 back up to 75mcg. Got loads of improvement. Had a blood test and Endo consult said T4 now back up to 17, T3 still low about 4 I think. Up I went on to 20 mcg T3 and stayed 75 mcg of T4. I am a lot better. Endo last time put my T3 up to 30 mcg. Still not had the guts to take that extra 10 mcg of T3. I am waiting to see what my next blood test shows.
I was led to understand that Afib can come from under treated thyroid.
Afib is linked to over high T4 & T3 levels.....if consistently high for a long time. Low thyroid re heart is linked to high cholesterol and consequently plaques causing restrictive blood flow to heart. Called Atherosclerosis
Good to know, Waveylines ~ thank you! My cholesterol, according to my doctors, is too high. They even did more detailed tests with my cholesterol which showed all was good. Endo refused to believe it- he even wanted to have me test again to see if results were incorrect- rather than believe it was my thyroid not being treated properly.
How we are all so different I had Afib with undertreated on thyroid medication. It completely went when they put me on T3 as well as T4. I always had low cholesterol it went high cholesterol when they were undertreating my thyroid and left me on 50mcg for years. As soon as I got my T4 up it went. I do not worry about cholesterol at all.
It’s insane how they treat high cholesterol when there are many studies that reflect this happening with people that suffer from low thyroid. I do not worry about high cholesterol either. Especially since my triglycerides and glucose levels are fine; plus the other detailed cholesterol tests the endo did- I forget what they were called.
Can you expand on the link from high t3 and a fib…
My doctor put me on 10 t3 when I was on 50 Levo. In fact, he dropped me from 50 to 25 when adding the 10 of t3.
I had immediately palpitations that lasted for about 9 months, and even now I still use my Kardia everyonce in a while, also pondering the role of low ferritin and perimenopause on my heart rate too.
But recently I think my thyroid levels are near the sweet spot…
I’m now facing my next decision - think I’ve chosen to focus on HRT as the next big move.
But I constantly wonder whether that intro of t3 over a year ago, and now just a smidge over range t3, is something to worry about. Maybe one day I’ll reduce but still deciding the order of things .
Long story short if you have links or more explanation on heart risks with high t3, let me know.
Hi Falling reverse you can't go on palpitations because you can have them whether your thyroid hormones are high or low. Uts an indicator that something not right. The arguement that Endos have is that high levels over range that of T3 is linkwd to a higher incidence of Afib. That's different to palpitations. However others eould argue eg those on a lot of T3 only that their bodies are resistant because it's what gets into the cells that count.....for example. So whilst there is evidence e it is measuring what's in the blood not cells.
So a wise endo told me a few years back......so long as you keep your Ft4 and ft3 in range no harm can be done even if YSH is suppressed. I've stuck to that. Recently when the local Endo argued that it wasn't safe to be in ndt because of its much higher t4 to t3 ratio I asked him for the body of research to substantiate his opinion. He could not produce it.
So even though my wise endo told me this 1Oyrs ago it dtill is the case.
I think the answer is to be sensible with your thyroid hormine and keep then in range......unless of course you have a big resistance conversion issue then you will have to decide what's best for you. The research isn't there. It maybe worth a chat with Paul Robinson on Facebook as he is T3 only and has written several books on it.
Your reply reminded me of something I’d forgotten - is it true/or do you agree, that much (some?) of the scaremongering around high t3 is for those who are actually hyper (ie, NOT just over-replaced hashi/hypo people )?
When you say: “Endos have is that high levels over range that of T3 is linkwd to a higher incidence of Afib. “
Is most of that based on people with naturally high t3, and not those of us on hormone replacement for underactive thyroid?
(That being said, my t3 isn’t that much over range, and I’m still sure I will be reducing at some point just to see , but of course can only do one thing every 2-6 weeks : ) and I am pretty sure my perimenopause has just taken priority 🫨)
My wise endo said keep the Ft3 in range. It's all about ure sweet spot. Getting ure co factors optimal really helps and worth doing. Then u might find u can lower just a tadge. GF made a big difference to me.....I've even been able to.lower my ndt dose twice!!
Wow, Katherine, it sounds like you were fortunate to have Dr C step up and take over. My doctor left me with awful symptoms and attributed them to fibromyalgia for years. Until I started reading and learning. I hope the endo does right by you bc I found I’ve been better off working with a pcp. The endo had the nerve to tell me that my thyroid was fine bc my thyroid blood test results were within range, and so refused to make any dosage changes no matter how poorly I felt with hypo/Hashi symptoms. I dropped him and asked my new (at that time) pcp to work with me, and she agreed. Of course now she’s leaving in a week and I’ll have to meet a new doctor and hope she will also work with me. At this point, I honestly think many here on this site know more about thyroid health then the doctors that are supposed to be helping us.
It sounds as though you’re at a good place on your health journey- still looking for improvement, but at a place that is more manageable for you. So I understand about being cautious with taking 10 mcg more. It feels like such a balancing act to just get to our sweet spot so we can have the best quality of life that we are able to attain.
I didn’t know that about afib until reading replies here- very good to know!
The heart needs the exact right amount of thyroid hormones, especially T3.
Therefore, under or over treated can result in ad-fib. I too had terrible and frightening heart issues when on Levothyroxine mono-therapy. As soon as T3 meds were added my heart issues resolved.
Oh me too radd, I had an awful weak heartbeat and such low blood pressure. I would get up from sitting and nearly pass out, I was so dizzy too. I would stand up my heart would race and my blood pressure would bottom out. As soon as I started T3 my heartbeat was stronger and my blood pressure went up a notch (still low). I no longer stand up and see stars and nearly pass out.
I am in a much better place I was going to up T3 by 5mcg but the chemist gave me capsules again. Even though I had said no capsules They play about with my medication giving me all different brands.
There is so many studies now that say fibro could be low thyroid. you would think they would get their act together. If I am not medicated right and my TSH goes up even a slight bit I get awful joint and muscle pains. It is my first warning sign.
I noticed some of your replies mentioned copper...
Copper and zinc have an antagonistic relationship i.e. if someone increases their copper intake their zinc levels will fall. If they increase their zinc intake their copper levels will fall.
It is much more common for people with thyroid disease to have high copper and low zinc, rather than the other way round, although some genetic problems could reverse that. I had my own levels of copper and zinc tested once (I can't afford to do it again), and my results were as predicted. My copper was over the range and my zinc was low in range.
I’m not sure if I should be nervous with T4 increase
A lot of doctors are really keen on scaring patients who take thyroid hormones. Personally I think one of their motivations in the UK is saving money, but another likely reason is that they confuse the effects of being hyperthyroid with the effects of being over-medicated in hypothyroidism. And to make things worse they tell over-medicated hypothyroid patients that they are "hyperthyroid", even though that can't happen. And they judge "hyperthyroidism" and over-medication with thyroid hormones solely by their TSH level. TSH is not a thyroid hormone, it is produced by the pituitary. The real thyroid hormones are T4 and T3. In healthy people 100% of the body's T4 and 20% of the body's T3 is produced by the thyroid. The other 80% of the body's T3 is produced in other tissues and organs by conversion of T4 to T3 e.g. liver, intestines, kidneys, brain. I have never seen a list showing which organs and tissues actually do t4 to T3 conversion, so take my list with a pinch of salt.
On the subject of the "dangers" of thyroid hormones I strongly recommend you read this thread :
In people who are hypothyroid over-medication is unpleasant, and yet doctors are so terrified of thyroid hormones that I think they deliberately under-dose people as a matter of policy. Some doctors believe that thyroid hormones are addictive and that is why so many patients ask for higher doses. But if that was true why would anyone who is hyperthyroid seek treatment? Doctors seem to think that such patients live in drugged-up bliss. It's 100% nonsense.
I do remember reading a quote from a doctor on the subject of thyroid hormones when I was still in the early stages of taking them. I'm paraphrasing but it was something like "You women only want higher doses so you can get your housework finished more quickly." I also remember reading another quote where the doctor concerned referred to thyroid patients as "goitre girls". The contempt for female patients was almost palpable.
Wow, thanks Humanbean, so much good information! It seems there’s always more to discover and learn on this journey for better health 🙂 I’ve started going through your links - I was really glad to read the post and statistics on the “dangers”. Doctors sure do put fear into us for wanting to try and feel normal. As I was affected with hypothyroidism around age 40, I still remember what it was like to feel normal. I think one of the things I miss the most is having energy. So when I read the quotes you’ve shared, it really is maddening how doctors treat patients, and in particularly women, as notes in the quotes. It reminds me of the spoon theory- if you’ve not heard this before-
suppose every healthy person starts each day with 100 spoons. Then everything they do, I.e., showering, fixing a meal, driving, working, walking their dog, etc, has a spoon value that gets subtracted from the 100 until there’s just none left to do anything. Well, those of us that are hypothyroid (along with other disorders/diseases) do not begin each day with 100 spoons. Some of us may only start each day with 50 spoons, so naturally there will not be enough to do all that we need or want to do- and sometimes even starting with 50 spoons is not realistic.
If only those with the ability to help us did, instead of belittling /or scaring us. I’ve found more helpful info on this site, than any doctor has ever provided me with.
Thanks, I’m going to get back to reading those links now 😊
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