Wondering if anyone on here can offer me any advice. I have suspected that I have hypothyroidism for about a year now - very tired, sensitivity to cold, depressed, very slow metabolism (resting heart rate of 50, struggle to not gain weight with restricted diet and exercise every day).
Last summer I got bloods done but doctor said they were fine. I have subsequently had two other thyroid function tests. The latest one was with endocrinologist who also ruled out Hashimotos. He said that I didn’t have an underactive thyroid as bloods were within range.
Anyway, to cut a long story short, I got frustrated and I decided to try levothyroxine to see if that helped to make my symptoms any better. Started on 25 mcg about a month ago. Felt great for about three weeks and then last week I started to feel very sluggish again. My resting heart rate is low already at 50bpm, but decreased to 47bpm, other symptoms reappeared (feeling constipated, low mood).
I’ve therefore just increased my dose to 50 mcg per day, for the last two days, does this sound ok? I read that a low dose can actually make you feel worse by not topping up your thyroid, but replacing it, and that someone of my body weight (60 kg) should probably be on a higher dose. Feeling good on 50 mcg, although it’s early days.
What I’m wondering is, is was I ever actually hypothyroid? Or have I just being silly and messed around with my thyroid by taking levothyroxine. Feeling a bit confused and my doctor has said that I shouldn’t have self medicated, that I shouldn’t be getting blood tests on NHS. Financially it’s fine - I have booked a medichecks blood test for next week, just to see where the levels are at, although I realise you need to wait 6-8 weeks for the medication to really balance out in your system. Just feeling a bit lost in terms of where to go next. Should I persevere for the next year with Levothyroxine to see how I do, or should I stop taking and let my thyroid just do its own thing?! Results below:
July 2022 (GP , not early morning)
TSH 1.71. ( 0.3 -3.9)
Free T3 3.7 (3.7-6.7)
No T4 - they messed up
April 2023. (GP, not early morning)
TSH 1.96. (0.35-4.94)
Free T3 3.0 (2.4 - 6.0)
Free T4 9.7 (9.0 - 19.10)
May 2023 (endocrinologist, early morning)
TSH 2.5 (0.6-4.8)
Free T3 5.0 (3.5-6.5)
Free T4 12.6 (11.5 -22.7)
Thanks!
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CatACat1
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Pretty likely …..but you needed thyroid antibodies and vitamin levels tested too
You need to get FULL thyroid and vitamin testing 6-8 weeks after starting on 50mcg levothyroxine
I have booked a medichecks blood test for next week, just to see where the levels are at, although I realise you need to wait 6-8 weeks for the medication to really balance out in your system
Have you included thyroid antibodies and vitamins in test ordered
Waste of time and money testing TSH, Ft4 and Ft3 until at least 6-8 weeks after any dose or brand change in levothyroxine …..but obviously useful to test vitamin levels and antibodies now
Be aware that as you get nearer 6-8 weeks on 50mcg levothyroxine it’s common to start seeing return of hypothyroid symptoms as your body gets ready for next dose increase in levothyroxine
what vitamin supplements are you currently taking….if any?
Important to stop any supplements that contain biotin 5-7 days before test
Thank you so much for your reply. This is really helpful and will bear all this in mind going forward. The test I’m getting next week with medichecks is the one you refer to - so at least as you say, if it’s not helpful for thyroid levels yet, it will be good in terms of vitamins etc.
I’m just taking a multivitamin currently, but often forget to take as I have been careful not to take it too close to the Levothyroxine in the mornings. I think I saw one of your previous posts about vitamins. Will look into getting some proper supplements. Thank you again!
First thing I have to say is that doctors know next to nothing about thyroid. So, take anything they say with a laaaaaarge pinch of salt. They only tend to look at the TSH, and they don't even unstand what it is or how it works. Unless you have your blood draw your TSH won't be at its highest, but they think it doesn't matter what time you have it. But it could make the difference between a diagnosis or no diagnosis.
Secondly, they think that one blood test can definitively rule out Hashi's - Autoimmune Thyroiditis. It can't. Antibodies fluctuate all the time, so you might get a negative reading one week, and a positive one three weeks later. Also, some Hashi's people never even have positive antibodies, but they still have Hashi's.
Looking at your results, your FT4/3 are very much on the low side, so I'm not surprised you had symptoms. Unfortunately, your TSH doesn't reflect that, so that's why doctors are saying you don't have a problem. Even with your early morning test your TSH wasn't over-range. However, that doesn't make it 'normal'. A truly 'normal' - euthyroid - TSH would be around 1. A TSH over 2 means that your thyroid is struggling. But, doctors don't know that, they go by the range.
When this happens, the TSH not reflecting the Free levels, it's usually a pituitary or a hypothalamus problem, rather than a thyroid problem. The problem the thyroid has is that it's not getting enough TSH to stimulate it to make adequant quantities of thyroid hormone. It's what we call Central Hypo. But, very few doctors have even ever heard of CH, let alone know how to recognise it.
So, I don't blame you for starting to self-medicate. And, don't worry, you're not 'messing around' with your thyroid, the levo won't do it any harm. But, the problem with doing that is that you are highly unlikely to get any sort of diagnosis. And, that can have draw-backs where future medical care is concerned.
On, the other hand, stopping the levo would mean going back to suffering increasing symptoms. If the TSH doesn't rise - and if you have Central Hypo it won't - then thyroid hormone levels will gradually drop until they get so low that even the dumbest doctor will have to take action. But, there's no knowing how long that would take, and in the meantime, living with low thyroid hormone levels can have all sorts of consequences on the other organs of the body. Every single cell in your body needs thyroid hormone to function. So, you're very much between a rock and a hard place, I'm afraid. Unless, out of the blue, you come across an understanding, knowledgeable doctor. And, personally, I don't know one of those!
But, whatever you do, there's no point in testing too soon. That will not help you decide what to do next. The results will be unreliable. You need to wait at least six weeks for things to settle.
Thank you for taking the time to reply. This is really helpful and reassuring. My GP made me feel like a naughty school girl when I last spoke to him!
I think I am going to persevere with the levothyroxine for the next year, and see if I can find a sympathetic endocrinologist once I’ve had a few more blood tests. Really can’t face just ‘making do’ with the pre- Levothyroxine me. Thank you - not feeling quite as lost as I was a few hours ago!
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