So reading through posts and peoples experiences I came across something that made me want some clarity. The anon had been taking 25mg of Synthroid and had just switched to 50mg. A conversation ensued about how she felt, other things pertaining to the medication etc and I noticed that someone responded and this is not verbatim, said something along the lines “once you start Synthroid your body stops making the hormone so if you aren’t taking a therapeutic dose you will be in a worse place and doctors don’t understand this.” — So my question is, is this true??
I can only take 25mg right now, I have to go low and slow because of my heart/arrhythmia, and I don’t want to be in a worse situation because I can’t take the proper dose yet. I know the first week of taking 25 I felt like crap. It’s going to be weeks before I’m allowed to take even just 50 and I also know it can take weeks after that before it actually helps. So I have a bit of a road ahead of me. My ft4 and t3 are still normal although ft4 is right on the cusp, so I’m assuming my thyroid is still working in some capacity even though my TSH at last check was 96 and my antibodies were almost 2600. I would just hate for it to stop all together and worsen my condition until I’m on the proper dose. That seems pointless. Plus once I’m on a proper dose does my thyroid still work at all on its own or does it just rely on the medication? Good grief.
It’s interesting how clueless I feel when it comes to Hashimoto/hypothyroidism yet my other conditions I completely understand. It’s very Frustrating.
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Tiffw28
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I would say: more or less. But, it does depend on so many variables - nothing is ever simple with thyroid.
Whether or not you feel worse on 25 mcg would depend on how much hormone your thyroid was making before you started taking the Synthroid. If your TSH on diagnosis was 96, then it's pretty certain that your thyroid wasn't making much hormone at all. So, you probably wouldn't even notice if it stopped making any. And, you might even feel better on the 25 mcg - some people do. So, how long have you been on 25 mcg? And, how do you feel?
Whilst a normal starter dose if 50 mcg, not 25, that is just a low dose. And, everyone has to start low and increase slowly, whether they have heart conditions or not. That's the way it is with all hormes, not just thyroid hormones. You don't start on a high dose because it's likely to stress your body. Nobody starts out on the 'proper' dose.
And, another reason for starting low and increasing slowly is that you cannot know how much you are going to need in the end. That is unpredictable. And, if you increase too fast, you're very likely to miss your sweet spot. So, increases should be made every six to eight weeks.
My ft4 and t3 are still normal although ft4 is right on the cusp,
Who said your FT4/3 were normal? 'Normal' is an opinion, not a result. And, if your TSH was over 90, I very much doubt that your Frees were anywhere normal. It just means in-range, anyway, which isn't always good enough. But, what do you mean by 'on the cusp'? What cusp? Do you mean the bottom of the range? If so, that is far from normal, I'm afraid. But, can you post your actual results - with the ranges? That is always easier to understand.
so I’m assuming my thyroid is still working in some capacity
You cannot assume that at all. You've been taking 25 mcg Synthroid, so your results are the results of taking that, not what your thyroid is doing.
I would just hate for it to stop all together and worsen my condition until I’m on the proper dose.
I don't think it's going to get any worse. I would imagine that right now, it's as bad as it's going to get.
Plus once I’m on a proper dose does my thyroid still work at all on its own or does it just rely on the medication?
It's not your thyroid that relies on the 'medication', it's your whole body. Thyroid Hormone Replacement - Synthroid - does not cure, heal or improve the thyroid itself. It just keeps you alive and well. But, your thyroid won't be working, no.
It’s interesting how clueless I feel when it comes to Hashimoto/hypothyroidism yet my other conditions I completely understand.
Well, I expect you've had your other conditions longer, and have had time to learn about them. Plus, I imagine, you've had doctors that know something about them, and could explain them to you. Doctors know next to nothing about thyroid, and if you question them, either make something up or avoid answering. I'm afraid that's just the way it is.
So I just started the Synthroid last week, my blood work was all done before I started it. I haven't been retested since it’s only been a little over week. I think she said in a few weeks she wants to repeat it. I see her at the end of the month so I plan on getting clarity on her long term plan.
What I meant was My FT4 and T3 were in range, the t3 was smack in the middle while the Ft4 was closer to the lower end of the range.
And yes, I’m for sure learning nothing is simple with the thyroid! Lol. I sometimes feel like I’m chasing all the new information that’s out there and often doctors have no clue but pretend they do. It’s a bit crazy!
Well, it's perfectly normal to stay on any given dose for 6 to 8 weeks. Everybody does it, not just you. Then, you retest and increase the dose by 25 mcg and test again after another six to eight weeks. And, you continue like that until all your symptoms are gone, your TSH is one or below, and your Frees are where you need them to be for you to feel well. That is the protocol.
When you post on here, it's really best to give the exact numbers: results and ranges. 'Closer to the end of the range', is just meaningless. We have to be far more precise than that.
It's completely crazy, I'm afraid. Doctors don't have a clue because they don't learn much about it in med school. But, they can rarely admit they don't know. But, that's the way it is with thyroid, and it's a universal problem, not just in the UK - although probably worse in the UK!
Yeah even here in the states doctors don’t seem to know a lot about thyroid and they certainly don’t like to admit when they don’t know something. You can always tell when they are clueless because you will usually get a “well we will watch it and see...” and it doesn’t matter what it’s about either that seems to be the go to excuse. I would just rather them say “hey I don’t know, let me look into it or find someone who does.” But I do feel in the endo field they still practice like it’s 1950 not 2020. They need to figure it out.
And yeah I posted the ranges and lab values on another post I didn’t even think to add them again here since I was more concerned about the medication question than anything else. I’ll make sure I always add those in the future though. Thanks again!
“hey I don’t know, let me look into it or find someone who does.”
Yes, that would be the response of a normal, reasonable adult. But, endocrinology doesn't seem to attract normal, reasonable adults, it attracts infantile demi-gods!
Question, have you ever heard of anyone having NSVT because of Synthroid? I had two episodes of it yesterday about 30 mins apart. The cardio said they looked completely different from anything I’ve ever had so it’s new. I had one episode a year ago but looked completely different. I’m sure it’s not but I know the thyroid meds can make hearts excitable or so I was told.
Actually, I've never heard of anyone having NSVT. I don't know what it is.
Thyroid 'meds' aren't drugs. They are synthetic hormones - thyroid hormone replacement - exactly the same chemical make-up as the hormones your thyroid makes. They don't make anything excitable. They simply replace the hormones your thyroid can no-longer make enough of naturally. Whoever told you that knows nothing about thyroid or hormones.
The heart needs a lot of T3. Synthroid is T4, which has to be converted into T3. Perhaps you don't convert very well and your T3 is too low. But, we don't know how well you convert, because you haven't given us the actual numbers yet.
Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear here regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being too waylaid by the many irrelevant possibilities web searches tend to return.
I continue to update the document quite frequently!
Tachycardia is a term used to describe an abnormally fast heartbeat caused by irregular electrical impulses to the chambers of the heart. When it occurs in the lower chambers of the heart (the ventricles), it is referred to as ventricular tachycardia. Ventricular tachycardia that stops by itself within 30 seconds is called non-sustained ventricular tachycardia (or NSVT). Any ventricular tachycardia is considered, at least potentially, a dangerous cardiac arrhythmia.1
Because NSVT does not persist, it is substantially less dangerous than a sustained ventricular tachycardia (SVT) and may turn out to be completely benign. Still, NSVT can cause potentially worrisome symptoms and may indicate an increased cardiac risk.
That's usual when the thyroid is failing as your body puts all its resources into making T3 as without it you die, so a failing thyroid before meds or in early stages will often show high TSH, low FT4, and FT3 even as high as mid range, but after a while, the thyroid just can't cope and everything falls.
Thanks for the reply! Yup I still have my thyroid although I have a pretty significant nodule on my right side that I’ve been putting off getting biopsied. The annual ultrasound shows it slowly getting bigger with each scan.
So yes my TSH was 96.50 on 7/1
70.20 on 6/12 and
12.90 on 3/25
Before the March test it had always been normal minus one test in 2016 that was too low and they told me I was sub clinical hyper. A few weeks later that test was also normal again.
I spoke with my doctor and the lab about interference and they said the results were correct so I have no idea what’s going on. I don’t understand how it’s so high in comparison to my ft4 which was .81 on the 1st.
I am not medically qualified but when you mentioned "heart/arrhythmia" both can be a symptom of being hypothyroid as we aren't producing sufficient thyroid hormones.
Has GP has tested your Free T4 and Free T3? The reason being that our heart and brain have the most need of T3 (we have millions of T3 receptor cells). Levothyroxine is T4 only and has to convert to T3 so your dose has to be eventually increased for you to be on an optimum i.e. that you feel well again with a TSH around 1 and both FT4 and FT3 in the upper part of the ranges.
Just for information, all blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as most GPs only take notice of this result.
Also B12, Vit D, iron, ferritin and folate should be tested. Everything has to be optimal.
I find it interesting you bring up hypo causing arrhythmia because my arrhythmia has gotten worse since I was diagnosed with Hashimotos and more active Atrial wise since the elevated TSH. I asked both my endocrinologist and EP cardio if hypo can cause arrhythmia and I was told no that Hyper can but hypo usually doesn’t that’s why they want to take extra care with the medication so I don’t go to far the other way. However I don’t believe that at all. Plus just reading what your saying about T3 (which I didn’t know) puts it even more in perspective! I find it hard to believe that hypo wouldn't aggravate the heart especially if your levels are all off. It’s really frustrating when doctors don’t listen.
So thanks for the blood work tip. I have never gotten my thyroid panels done fasting or early in the morning. I only thought cortisol had to be done that way. I just started the Synthroid so I will make sure I follow that tip from now on.
I regularly get my iron panels, potassium, vitamin levels etc done even before this. I’m on my way to try and get that optimal since I have always been deficient or insufficient.
It may help if you can read my history if you click on my name and it will take you to it.
I was struggling before and after I was given levothyroxine, I am now a member of Thyroiduk who work in the background trying to change attitudes of the medical professionals.
I was in and out of the A&E like a yoyo. No-one to advise or tell you anything at ALL. The cardiologist was completely puzzled and was considering putting an implant into my heart to 'see what was going on'.
Around a couple of years after levo and still being very unwell - the Endo added T3 to T4 and it was if my body had suddenly become alive again and I then had no need of an implant.
The more I reduced T4 the better I improved. Many people and a number of scientists/researchers have proven that options other than levothyroxine can restore health. One who was an Adviser/scientist to Thyroiduk.org.uk and I am also a member of TUK and the more members it has the stronger it will be. The small number of staff work in the background trying to change the attitudes of the medical professionals who do NOT believe patients who state that they do not improve on levothyroxine, although many thousands seem to be fine on it. TUK has scientific Advisers but it seems very hard to get those who should know better but are not changing their attitudes towards.
Once upon a time (1892) - before blood tests and levothyroxine were introduced in the UK, we were diagnosed upon our clinical symptoms alone and given a trial of NDT - if we improved we stayed upon it.
The great pity is that those who we'd imagine knew the inside/outside of thyroid hormones removed T3 from being prescribed and then through 'misinformation' also had Natural Dessicated Thyroid Hormones removed too, despite it being in use since 1892 - without blood tests - and saved many, many lives worldwide thus forcing people to try to source their own.
One of Thyroiduk's Advisers (now deceased) wrote the following to the BTA who never had the courtesy of a response from them (Dr Lowe died through an accident).
Some of us need options to recover our health, be it T4/T3, or NDT or T3 alone.
I just am astonished that 'experts' really do not listen to those patients who cannot improve - and I think they must be in the wrong profession, as 'healers' they are not and ignore scientific evidence neither do they listen to patients.
Wow. I’m going to look through your posts. And yes I have had a go around with almost all my specialists at one time or another. A hospital back in 2003 almost sent me into critical care because I didn’t fit the average mold and they had a hard time believing I was actually sick. The longer they took the sicker I got and still pay the price for their lack of care. It was horrible. I really don’t get why these doctors won’t think outside the box. Not everyone fits the standard. At one point diabetes didn’t exist yet it does now so why wouldn’t things like that remind them the world of medicine is an ever evolving story?! Ugh.
So how do you find out about whether T3 would help you? I know they do test for T3 but they seem so focused on TSH only and medicating with Synthroid only. What a mess.
You are correct in that they are focused upon TSH alone - if they take a blood test. I believe thousands of people are taking prescribed medication for the 'symptom' i.e. anti-depressants, pain relief, etc etc. That's why it is important that we take our health into our own hands.
Those of us who've had children, very young children, you automatically knew if they weren't well by 'symptoms' and took them to the doctor. Nowadays, I doubt any doctor know clinical symptoms at all of hypo and rely upon the TSH (if taken) and may just give anti-depressants, pain relief instead of essential hormones.
T3 may not be a miracle cure as it has to enter our T3 receptor cells or the fillers/binders in it could affect us negatively. (I've never had that problem) and it is trial and error.
A number of researchers have found that a T4/T3 combination helps lots of people.
There is also NDT (natural dessicated thyroid hormones such as Armour etc) that contains all of the hormones a healthy gland would do i.e. T3, T2, T1 and calcitonin, as it is made from animals' thyroid glands.
As so many people do well on levothyroxine alone, I doubt the professionals will be keen to prescribe 'other' replacements
I asked goose this above but I wanted to ask you too.
Have you ever heard of anyone having NSVT because of Synthroid? I had two episodes of it yesterday about 30 mins apart. The cardio said they looked completely different from anything I’ve ever had, so it’s new. I had one episode a year ago but looked completely different. I’m sure it’s not but I know the thyroid meds can make hearts excitable or so I was told
There is a book on Amazon - The Thyroid and Heart Failure. Full of research papers selected from around the world. The book was created by an Endocrinologist and a Cardiologist who came together for the purposes of research- a first.
The book is expensive but once on-line you can 'Look Inside' and read the Contents. Liothyronine / T3 is the star of the show. I did bite the bullet and save for the book and share with others in the ex-pat community I lived in at the time.
Not a doctor but surely your ‘slow heart/arrhythmia’ is due to your crazy tsh??? Goodness, I’d be super keen to get going on t4 (as fast as doc will allow). My slow heart and arrhythmia was one of many symptoms that persuaded them to give me 25 levo. But then I went back a week later and said seriously I’m pretty heavy and it’s barely a dose and they said yeah here’s 50. I never found levo too hard to take. T3 is a different story. (Heart rate and arrhythmia fixed pretty quick.)
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Totally confused now....help with understanding endocrinologist please
Thyroid Ultrasound for Hashimotos?
Confused!
Needing advice/suggestions re tweaking NDT
