Please don't tell me that you die if you have low T3. I don't want to be frightened but I also feel panicky because my T3 is low.
I'm feeling quite teary because I have such severe PEM after doing anything that I feel like I'm dying when it happens and its starting to make me panicky each time I have PEM now.
I've had a full endocrine panel done recently including an SST, prolactin, thyroid, everything and my cortisol levels are perfect. If anything my SST values were slightly high, they were great, everything else was absolutely fine.
The only things that were low and remain consistently low are my T4 which was 12 (10 - 22) and my T3 which is 3.7 (3 - 6.8).
I've been put on levothyroxine, 25mcgs but I can't convince anyone to put me on T3, not the private endo or the NHS endo and I'm just feeling frightened that if I dont go on T3, then I'll die as the PEM i have feels so severe.
I feel like my body is shutting down with the PEM.
I think overall I'm feeling slightly better on the levothyroxine but I'm still getting severe PEM.
I'm also looking into ATP / mitochondrial testing in Germany but I guess I just want some reassurance that I'm not going to die from having low T3 as I'm getting very teary and frightened on my PEM days.
Thanks
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Lucy___
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As your dose of levothyroxine is slowly increased over coming months BOTH Ft4 and Ft3 will slowly increase
Starting on levothyroxine ONLY is standard treatment and by far the best
Starting on only 25mcg is a low dose, push for increase to 50mcg daily AFTER next blood test
which brand of levothyroxine have you started on
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Thank you, I think I'm just feeling panicky at how bad the fatigue is some days now. Though I do honestly think overall it's slightly less severe since starting the levo. I've only been on it about 3 weeks so I know it's going to take a while to start building up. I think their plan is to build my levo up slowly over time. I think I'm on the tevo ones though I can't remember as I empty the blister packs into bottles when I get them.
My TSH tends to swing between 1.8 and 3.2 generally but my T3 and T4 always remain on the low side. My T3 has been as low as 3.1.
My antibody tests were negative but I might have them repeated so I can compare.
I take betteryou iron spray, vitamin D and K2 and also bioactive B12 drops.
My vit D is always lowish as is my ferritin and active B12 but any iron supplements give me severe stomach pains so I can only have the spray and vit D tablets give me heart palpitations so I have to have the spray for that aswell and i wont have B12 injections because my heart reacts to most things with an increase in heart palps so im not prepared to risk it.
Hi, I’ve never heard of iron spray, does it actually absorb and increase your iron? My iron levels are low but I can’t take any iron meds or supplements as it’s not good for my stomach
You can buy iron sprays, and also iron patches, both of which claim to work by transdermal absorption. What works for one may not work for another though, so possibly the only way to know is to try it yourself.
You would need to get a test before starting to see where your levels are, then test again after using the transdermal iron after a reasonable length of time. Maybe after a month of using this method.
For a long time my T3 was lower than yours and I am still here. Be kind to yourself and the T4 will slowly start kicking in and your dose get ramped up.
Thank you, ive been under the most horrific levels of stress for the last 4 months and the endocrinologist thinks that might have contributed to my thyroid not functioning so great. I cry all day every day most days and have headaches most days due to the amount I cry.I know I need to find a way to reduce mental stress to help my body recover and I am trying but it's tough and it's even harder when it feels like I'm dying so many days.
Oh love, I know know how you feel. When just taking a shower makes you feel like you're going to collapse! This time last year having to crawl on my hands and knees to the toilet I was so weak. It will get better, but it will take time. Taken me 18 months to get up to 112.5mcg and I'm no where near normal but my anxiety is much better which helps alot.
Have a read of my posts from last year, I was in an awful state but things can get better x
You need to be taking gradually increased T4, under doctors supervision, with repeated blood tests as above.Things will get better as your thyroid levels improve.
I’m new to the forum but just wanted to say you are not alone in feeling this way. I became really poorly 2 weeks ago and have been in bed since. I had a good day yesterday, felt more normal and went in the garden to do a bit of weeding and pruning - I was only out there 20 mins but big mistake! I felt really ill again and had an awful night.
It’s really hard mentally and physically and so difficult to explain to anyone else! I told my doctor I felt like I was going to collapse and die and he wrote ‘felt faint’ on my notes and asked me what I’d had for breakfast! So patronising.
Try to rest and distract yourself as much as possible, I know it’s hard when you feel so anxious. Have you got someone with you at home? Really hope you feel better soon. X
Hello, I’m sorry you’re so awful. I have post exertion malaise too, I have for years. It’s tedious. Pacing your activity is vital so, at the moment, do as little as you can while you wait for the improvement that will come.
The biggest boost to my levels of stamina apart from thyroid hormones was starting LDN. You can self refer to clinic158.com. You’ll be given an phone appointment with a prescriber & then drops will be sent to you in the post. It takes 3 months to reach the full dose but there is light at the end of the tunnel. After awhile I felt much stronger & was able to walk my dog for longer. Do some research & see what you think.
Concentrate on your vitamin & mineral levels too. They’re vital. I use Time Health supplements as they only use good quality ingredients . Don’t use multi vitamin tablets.
Is clinic158.com purely for LDN, or do they prescribe T3 too? Far , far too early to tell if Lucy___ will need T3 sometime in the future or not, until her FT4 is in the upper quadrant, to see how her conversion is. But, handy to know for future reference, if a need for T3 indicated in the future.
I was hoping that Clinic158 .co was an independent prescriber service like Roseway, and therefore an alternative to that if the independent prescriber there withdraws.
Hypothyroidism can make one feel abysmally low and depressed and what you are feeling is one of many symptoms of the disease.
Your FT3 is still in range so absolutely no risk of death from low T3....it's just making you feel miserable.
You should be tested again 6 weeks after starting levothyroxine/ T4 and dose increased to 50mcg.....this test/ increase/wait should be repeated until symptoms improve.
Be aware this will take time, it took me about a year to find my therapeutic dose but my case was complicated with poor conversion and a form of Thyroid Hormone Resistance. As a result I need high dose T3-only which eventually I had to self medicate. I very much doubt you need to go there!
Your FT4 is far too low which is why your GP initiated replacement thyroid hormone treatment/levo.
Normally the body converts T4 to T3 in various tissues in the body....mainly the liver.
In some people this function is impaired, most often by a genetic polymorphism (Dio2) the result being low FT3. I have inherited this gene from both parents which impairs my T4 to T3 conversion.
Only if poor conversion is evident might an endo prescribe T3.....high FT4 with low FT3
It would be a very rare medic who prescribed T3 at your stage/ with your labs.
To support thyroid health/ conversion we need optimal vit D, vit B12, folate and ferritin....have these been tested?
Thyroid autoimmune disease / Hashimotosis a common cause of hypothyroidism
Not to get too complicated at this stage.... your aim is to take levo in a dose that relieves symptoms and for most people correct T4 medication is all that is required.
T3 would need to be very low before death is a possibility....in any case testing should identify a problem long before then!
Right now you are hypothyroid and undermedicated. Slowly increased doses of levo should ease the anxiety and other symptoms meantime .....stick with the treatment and expect bumps along the way, but don't be tempted to stop treatment? You need it for life
We've all experienced similar problens caused by thyroid disease and the collective knowledge and experience of members here is greater than most medics. It's a huge subject.
Thank you, what you've said is so kind. I am finding it so tough because some days I feel ok and other days I literally feel like I'm dying like yesterday and as I'm getting older, I'm finding that the days where I feel like I'm dying are getting worse and I'm panicking more.
Looking back on my bloods over the years my F4 in particular has always been low, going back 10 years and it's never been picked up on and my F3 has always been low but not tested as much as the F4 and my TSH has always been higher rather than lower, up as high as 6. Could that factor into why over time I am gradually getting worse? Does your body start to get worse over time if it is hypothyroid for a long time?
The anxiety and heart palpitations and depression has been so utterly severe over the last year, I've felt like I want to die so much and I'm just constantly shaky and teary.
They thought for a long time that it was my adrenals but my adrenals seem to be working well now from the testing with no signs of anything wrong there.
No one looked at the thyroid until I kept saying to them that people online were telling me my numbers were shit then they finally started taking notice of it.
All my vitamins are the low side of normal especially vit D but I can only use sprays as tablets of all vitamins give me bad side effects. So I do the best I can with the sprays and take iron, vit D and B12.
I really hope I do start to see an improvement on the levo because the daily symptoms plus perimenopause is absolutely grim for me 🥹
I understand. Been there and at age 79 have got the Tshirt, indeed, a box of T-shirts.
I had to push for a thyroid test but thankfully back then (2000) FT3 was still routinely tested
I became very ill and could barely function....my thyroid hormone levels were seriously wrong....not just straight forward hypothyroidism.
The endo I saw couldn't understand them! But with help from a few knowledgeable members here and a great deal of reading I found the answer
You are not alone, far from it, it's grim for all of us....and in extremis it has driven people to take their own lives.
We have to be strong!
Yes! If TSH is constantly high it indicates hormone levels are constantly low and if FT3 is low that can affect any or all parts of the body....possibly increasingly.
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply. Low cellular T3 = poor health!
As the old song says, " accentuate the positive, eliminate the negative!".....The positive being that there is light at the end of the tunnel, the negative being despair.! Easier said than done I agree but being bloody minded and determined helps!!
Stick with your levo medication as the dose slowly increases, because I doubt the answer is any more complicated than optimising your thyroid levels...and don't start looking for complicated problems or solutions until you have solved the straightforward ones!!
No need for mitochondrial testing...just more thyroid hormone!
Let us know how you are getting on....it helps to share.
Long term inadequate levels of FT3 is simply awful. Many of us have experienced years and years of it, and it ends up effecting everything. However, you have only recently started on Levo so can't assess conversion ability or your need for separate T3 meds yet.
I wouldn't waste money on ATP/mitochondrial testing yet. There are multifactorial aspects of hormones working and the mitochondrial function should improve as FT3 levels rise. However, be aware it can take a while as all hormones work together and you will have a lot of out of synch hormones to reverse.
Spend your money on supports that allow those rising FT4 and FT3 levels and other hormones their best function. Supports would include optimised cofactors such as iron and vits, and not stressing adrenals further by removing external stresses and resting when you can. Anxiety is incredibly common with hormonal issues, especially adrenals and should improve as hormone right themselves.
Everyone here has had to put that first foot on the ladder to recovery. And some of us started this journey with much worse blood results than you have. When I was diagnosed my TSH was sitting at 120 (no, I haven't missed a decimal point out!) and my T4 was at 3.8 with a range of 12-22. No idea about T3 but can only assume it was barely there.
I could hardly get out of bed and when I did, all I wanted to do was sleep. I was eating very little as my body wouldn't let me eat but my weight was going up and it took me an age to walk/crawl upstairs to the bathroom. As for exercise - ha! Not a chance.
I too felt like my body was shutting down and it scared the hell out of me.
I'm still not 100% but I'll get there. My T3 is still hovering round 4 (3.1-6.8)
I'm not belittling what you're going through, I'm letting you know that you're not alone and that you're going to be just fine ❤️
My FT4 and FT3 plummeted last year to below the range and they were both very low when I was diagnosed. I'm still here. Low thyroid hormones will make you feel awful but it will take a long time at very low levels to make you in need to medical attention.
There is a supplement often recommended for low ATP/ mitochondrial function. People with CFS often use it and I believe Dr Sarah Myhill recommends it. Called D Ribose. You can buy it as a powder you mix with a bit of water or as capsules. It might be an idea to tide you over whilst you are getting your Levo dose optimised. I prefer the powder as I think its faster acting. Available online.
I have not tried D Ribose but I have thought about.
I reluctantly put this in a list of ‘stimulants’ and decided not to bother.
The reason for this is I am concerned that ‘false’ stimulants do even more damage. They encourage one to to more, when really one does not have the most important things in place - e.g. optimal thyroid meds, to help.
If D Ribose did this to me I would be even more ill and I am not willing to take the chance.
If I recall, even Dr. Myhill put a comment in her book, something along the lines of ‘emergency use only’, or at least that’s the impression I got!
I dont think its a stimulant in the same way as say caffeine is. Dr Myhill always said CFS was " mitochondria not hypochondria" and low ATP production is one of the alleged causes of CFS/ME so that being the case surely things that help increase its production could be beneficial.
Its like anything else really, try it and see. I've tried coutless supplements over the years. Some I've found useless, some actually made me worse and others I've stuck with. Its a very individual thing. I found D Ribose helpful before I went to the gym. It gave me stamina and energy for workouts.
Just a quick comment. We talk about FT3 and FT4. F stands for Free. When we mention T3 and T4 we are also talking about FT3 and FT4 as that's what we need to know.
In the time before any thyroid hormone treatments were available, people could deteriorate very slowly - over years, even decades.
It wasn't a good situation for them, of course, but they would so often survive for extended periods.
Having relatively low thyroid hormone levels in blood tests might be horrible to endure, you might feel terrible, but it is when the person continues to be untreated indefinitely that the worst outcomes occur.
I just wanted to add my voice to others saying being low on thyroid hormone feels terrible. It can feel like hanging between life and death.
It's important to know that it can take quite a long time to start feeling better. Even thought hopefully you are on the right track now, it will still take a few months to get settled on your perfect dose and feel better. In thyroid everything is slow.
Its very important to keep getting tested regularly and get your dose adjusted until it is exactly right for you. Best practice is to retest and adjust every six weeks, but on the NHS I was often made to wait a bit longer than that.
Currently you are on 25mcg of Levothyroxine, which is a very low dose and often doesn't make people feel any better. So for the first few adjustments hopefully you will be getting a raise, until you get close to your own ideal dose. Best practice is to adjust by 25mcg each time. Once you have raised a couple of times and are on at least 75mcg you can hope to start feeling some real improvement.
Levothyroxine is made up of T4. This is the storage form of thyroid hormone. Your body will be able to break this down into the active form of the hormone, T3. So you should see an improvement in your freeT3 levels, too.
Theoretically, you can get well on Levothyroxine alone, with your body using it to raise your T3. Most people do not need to take T3 directly. You will only find out if you are one of the people who needs to take T3 once you are further into your thyroid hormone replacement treatment. Keep going with that treatment, raise your levels, and hopefully you will be one of the lucky ones who does well on Levothyroxine only.
As others have possibly said, there is no need to waste your money on ATP testing. ATP is a kind of fuel for the cells of the body. It is made using food, oxygen, and a few other things including thyroid hormone. This happens inside the mitochondria, a tiny structure inside our cells. Because we know you have a thyroid condition, your ATP production will be low. This is just part of thyroid illness, and it is what makes us feel weak and fatigued. So if you do this test, it will probably point out that something is wrong. But that is just the thing we already know is a problem.
Maybe you could consider that further testing if you still feel unwell in 6-12 months. But on the other hand, you might be better off working on getting your vitamin and mineral levels in good shape, as those will definitely make a difference to how well your body can use thyroid hormone.
Good luck! I found your post very moving, and it helped to remind me how hard we have it with this illness, and how important it always is to be kind and gentle with ourselves and with each other. Please take care of yourself, and do whatever you need to do to stay as comfortable as you can while you wait for the thyroid hormone to start working for you.
Hi Lucy, it is a fact that T4 has to change to T3 for your levels of T3 to rise - and you probably do need T3 or cytomel (as it is called in some places). It is quite a journey (it shouldn't be) to get T3 prescribed. The T4 to T3 reaction needs a catalyst to be efficient. This catalyst is the element Selenium. You might want to try increasing your selenium level so that you squeeze every bit of T3 out of the T4 you have in your body. Get your Se level measured and if you are low, before you buy a supplement, you might want to try eating Brazil nuts, they are a great source of selenium. Give that a try for about a month, get your selenium levels measured again and if still low, buy a bottle of the supplement. Don't overdo the Selenium supplement, start low and increase slowly.
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