I don’t think they have taken all the right ones and have an appointment with the doctors on the 15th so want to know what they should be taking and what I should be being tested for.
I have been looking into the effects of levothyroxine long term. I’ve always been told I need to be over medicated to keep the thyroxine suppressed but I’m concerned this is doing me damage....
I’m basically just after a little bit of advice/ammunition that I can take to the doctors as I don’t think they fully understand or want to understand, but the only one it is affecting is me and my health.
Thanks in advance!
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Kaylee1211
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How do you feel? And have you tested key nutrients? - ferritin, folate, vit D and B12
Your results aren't that unusual: they show
* suppressed TSH. This wouldn't worry me (mine is also suppressed) because there is a world of difference between having a low TSH when you are on thyroid meds and when you are not - although this is often too subtle for GPs who see a low TSH and assume you need to reduce your meds
* over-range free T4. This also wouldn't worry me, but may freak out your GP and make him/her want to reduce your meds.
* low free T3 - a feeble 28% through range. This is the reason why a high free T4 wouldn't worry me: you are such a poor converter that the only way you can get free T3 up to this feeble level is for free T4 to go over ...
Assuming nutrients are good, if you feel good, you can carry on as you are. Or (and particularly if you don't feel tip-top) these results would say to me that it's time to drop a bit of levo and add a bit of lio into the mix. Which means seeing a T3-friendly endo, as lio is endo-only on the NHS. You can get a list of T3-friendly endos from Dionne at Thyroid uk - tukadmin@thyroiduk,org - and/or it's worth a sep post asking for recommendations near-ish to you. You don't need to see the nearest person, but must obv be reasonably convenient
I’ve always been told I need to be over medicated to keep the thyroxine suppressed but I’m concerned this is doing me damage....
Don't you mean keep the TSH suppressed? Thyroxine is T4 and you don't want that suppressed. Who told you that? And why?
Your TSH isn't suppressed at the moment. But, even if it were, it wouldn't cause any damage. TSH is a chemical messenger from the pituitary to the thyroid to make it produce more thyroid hormone - T4 and T3.
On the other hand, if that FT4 range is correct, your T4 is well over-range for just a mid-range FT3, which suggests poor conversion.
These are the correct tests, but the antibody tests are missing: TPO antibodies and Tg antibodies.
It's also advisable to get your vit D, vit B12, folate and ferritin tested because the body needs optimal nutrients to be able to use thyroid hormone correctly.
Sorry, yes meant suppressed TSHI had my b12 etc tested and was told they are normal
I’ve put these results below too
Serum folate level 8.4ng/ml (3.1 - 19.9)
Serum ferritin level 27 ng/ml (11 - 306.8)
Serum vitamin b12 153 ng/L (144 - 915)
I feel awful, all of the time. At first I thought I was under medicated because most of what I was feeling could be put down to similar effects of an under active thyroid (I don’t have one) but the more I look into it the more I’m concerned that the levels I’m currently on are doing me damage.
By chance while investigating other issues a few years back it was discovered that I have a leaky valve in my heart. It wasn’t a concern back then because they were looking fo cancer, so my consultant suggested reducing my medication. Fast forward a few years and increases in thyroxine and I’m feeling worse than ever and nervous that I’m doing damage to my heart by taking a higher dose...
Does that make sense?
I’m constantly being fobbed off by the doctors to the point where I generally don’t bother going apart from having my bloods done. I don’t know if it’s because I’m “young” or what it is but it’s so infuriating when I know there is something wrong with me.
Are you in the US? I have no thyroid (cancer) and my health has declined so bad with a variety of ailments I did not have prior to thyroidectomy…. Im constantly struggling with anemia that absolutely sucks the life out of me and Im menopausal haven’t had a period in 17 years (hysterectomy).
Do you think your mitral valve issue is directly a result of thyroidectomy ?
I definitely know my psoriatic arthritis, massive weight gain, migraines, small fiber neuropathy(burning skin) and the constant battle with anemia is definitely related to my thyroidectomy but try to get Endos to understand Is laughable and honestly they only care about your lab numbers.
I thought I had developed asthma about a year ago (horrible breathlessness) only to finally figure out I have anemia and this was my cause of my breathlessness….. your iron doesn’t have to be super low to feel anemic in the US any ferritin below 30 is considered anemic according to my Primary doctor.
I wish you luck because being thyroid-less is not easy.
I’m not in the US but every single thing you have described apart from being menopausal I have! I’ve been to the doctors countless times and I get nothing.
I’m not sure if the heart thing is linked as they only started looking after my cancer came back so it could have been there before. I guess there’s no way of knowing!
I was super naive at the beginning, and at the start I was ok. Took a while to get my levels right but then it worked. Now I genuinely feel awful, all of the time and I don’t even think that’s being dramatic.
I don’t get everything at once, but there isn’t a day goes by that I don’t feel “ill” in some way!
I think we are all naïve when it comes to thyroid issues and trusting the doctors to take care of us but as you can see most of us get tossed away at some point to struggle alone anyway, my neurologist who just diagnosed me over a month ago with small fiber neuropathy said she believes its related to my hormones and I definitely agree but which hormones (female or thyroid or both) she has no idea and no doctor cares to try and find out either, so I move forward at a turtles pace and hope for a miracle .. lol
The anemia for me is pretty traumatic when it hits.
These results are far from 'normal'. They are all too low. I'm not surprised you feel awful. Your B12 is so low that you should be investigated for Pernicious anemia. The level should be at least over 550. And ferritin is low enough to justify a full iron panel. Folate should be over 10.
I see in your last post that you had a TT for cancer. That is why your TSH should be kept suppressed, to stop the cancer coming back. A suppressed TSH will not harm your heart. What will harm your heart is not having enough T3 in your system. The heart needs a lot of T3. I would say that yours is too low.
I’m feeling worse than ever and nervous that I’m doing damage to my heart by taking a higher dose...
Does that make sense?
Given your levels, no, it doesn't. You are under-medicated.
I don’t know if it’s because I’m “young” or what it is but it’s so infuriating when I know there is something wrong with me.
No, it's not personel, they're like that with all thyroid patients. They just don't like having to treat thyroid.
Thank you! I thought they were on the low side, but because they were in range and it said “normal, no further action” I took it that it was ok.
To get more T3 will that mean an increased dose of levothyroxine? Sorry if that’s a silly question, I’m still very much in the early stages of having my eyes opened to all of this!
My oncologist suggested additional T3 a while back, then COVID hit and he retired and I’ve got a bit lost in the system so just been left to kind of work it out as I go along!
At least I don’t suffer alone. Doesn’t make it any better but at least I now know others also feel my pain and I don’t feel like such a burden!
Oh, you're not a burden, never think that. It's just lazy doctors find thyroid too complicated for their tiny brains and can't be bothered!
Adding extra T3 really would be the best way to go because your FT4 is already very high. The difficulty is in persuading ignorant doctors - and most of them are very ignorant where thyroid is concerned - that you absolutely need it. Which you do.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a storage hormone that needs to be converted by your body into T3 which is the active hormone that the body needs to fuel your brain and body to function and run on.
Too little T3 in your system and you may have symptoms of hypothyroidism and conversely too much T3 in your system and you may have symptoms of hyperthyroidism and everyone's optimum level of 3 is unique to them.
The body runs on T3 - synthetic Liothyronine - and it is said to be about 4 times more powerful than T4 - synthetic Levothyroxine, with the average person needing to utilise around 50 T3 daily just to function.
So as you will see from the above without replacing your own natural T3 thyroid hormone production you have, in effect, been down regulated by some 20% of your overall well being and this, over time, is bound to pull you down further.
It just seems logial to me, that if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both T3 and T4 are put on the patient's prescription for if, and probably when, they will both be needed to be prescribed to restore balance between these two vital hormones and at a high enough level to be acceptable to the patient.
Your ability to convert the T4 into T3 can be compromised if your core strength vitamins and minerals are not maintained at optimal levels.
I know now I feel at my best when my keep my ferritin at around 100, my folate at around 20, my B12 at around 75++ and my vitamin D at around 100. and I continue supplementing these vitamins and minerals on a daily/weekly basis.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Some people can get by on T4 only, some people find T4 doesn't work as well as it once did, some people need the addition of a little T3 alongside their T4 and some people can't tolerate T4 and need to take T3 only, whilst others prefer to take Natural Desiccated Thyroid which contains all the same known thyroid hormones as the human gland.
I think it will help you to ask Thyroid uk to send you the list of sympathetic endos, specialists, and doctors, and ask your doctor for a referral to someone on this list who is more likely to help you with a treatment option other than monotherapy with T4 - Levothyroxine.
Start reading up on the Thyroid uk website as this is the charity who support this amazing forum aand where we all start off on our own thyroid health recovery and where we now come back on and support back other people struggling to recover their own health.
I'm with Graves Disease post RAI thyroid ablation and became very unwell around 8 years later and found this amazing site and have now turned much of my health issues around for myself.
Thank you so much for your explanation on it all 😊
I will definitely have a look at the website. This site has been a god send to me. I genuinely thought I was on my own or that I was being dramatic. But as time goes on I feel worse and I can’t put it down to anything anymore. Used to put it down to stress, lack of sleep, anything really just so I had a reason. But it’s gone on so long and is only getting worse so there is definitely something going on!
Yes, I know, there are many of us on here, wearing the same T shirt !!!
Start reading up, and the corner stones of your jigsaw will be found and the other pieces will start to fall into place.
You are not alone, and there is always support and knowledge on this amazing forum and start reading other peoples posts, as the basics are the same, no matter how you got here.
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