so I feel pretty fortunate that I haven’t had to wait to long to start treatment. Following GP blood tests last Wednesday I was reviewed today. We’re still waiting for the ultrasound results but essentially the thyroid test results were similar to my private blood test results. As a result I now have a formal diagnoses of autoimmune Hashimotos thyroiditis and I have been prescribed 50mcg per day to be reviewed in 8 weeks with updated bloods. I wasn’t given any advice on time of day just told 1 tablet per day. I have learnt from this forum that morning is best and at least 30 mins before drinking coffee as that can reduce absorption. I also wasn’t given any other advice. My family really want me to see a private specialist in the hope of a better informed plan going forward and since I have all the bloods and ultrasound result to come to take with me I agreed this would be a good idea. I am keen to learn from the experienced people of this group of what I might expect now that I’ve started medication. What side effects do people have? How do people start to feel better? When do these changes start? What changes for people? Sorry for all the questions!! I have so many 😂 Unfortunately I have been given the Tevo brand but I will take it unless it causes me issues which I will address if necessary.
Thanks in advance for any advice received.
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Well congratulations for getting the Levo! Hopefully you have a good GP who will work with you.
As you work up through the doses, expect to feel all sorts of things! Better, worse! It really is very individual but don't be surprised by feeling worse for a while then levelling out after 6 weeks or so.
That being said, as your new to levo and have Teva, keep an eye on your symptoms in case it's the brand causing issues. Come back and ask if not sure. Any allergy type symptoms, speak to the pharmacy.
Teva is Marmite—you’ll probably either love it or hate it. 🙂 So let’s hope you’re in the “love it” camp.
In terms of what to expect, you may notice nothing at all. You may start feeling better, have better energy levels etc only to start feeling worse again a week or two later (that’s often a sign that you’re ready for a dose increase).
I wouldn’t waste money on a private referral just yet. See what happens now that you’ve been prescribed levothyroxine. Make sure you go back to your GP no later than 6 weeks from now for a new thyroid blood test (I’m saying 6 weeks in the knowledge it might take another week or two to actually get a blood test—it does in the area where I live).
50mcg is a starting dose, most people will need more so expect an increase in due course and be suspicious if your doctor says your bloods are “fine” as that will be most likely their opinion rather than a fact. “In range” is not “fine” when it comes to treating hypothyroidism. And you have autoimmune thyroiditis looking at your earlier post, so ultimately this is a one way trip to your thyroid burning out and you needing to rely on thyroid replacement hormones.
Here’s hoping this is the beginning of you feeling much better. 👍 Remember, most people do absolutely fine on levothyroxine—they don’t visit us here because they never have a need to find us!
Thank you, fortunately I was given the new blood form today so I could pre book the bloods 1 week before my next appointment. I have many symptoms which I hope will improve however 1 that is really troubling me right now is a chronic itchy skin rash mainly on my arms and legs which I’m scratching till it bleeds sometimes. I asked the GP if the rash will resolve now I’m being medicated and she said “it should do” but didn’t sound very confident in her tone. I’m going to end up ripping my skin off if not 😩
Ah, the itch-scratch-itch cycle—drives you bonkers doesn’t it? You may need some steroid ointment to break the cycle—something like betnovate? Or have you already tried that?
Anyway, yes, hopefully levothyroxine will help. A common hypothyroid thing is dry skin—which is how it can get started.
I agree with Jazz its far too soon to be thinking about a private Endo, for a start you need to give Levo a chance, it could be several months and several dose increases before you are anywhere near to needing that.
I think that reading this forum sometimes inadvertently gives the impression that everyone who is hypo will end up balding, fat, depressed and knackered, when the reality is millions of people get prescribed Levo every year and the majority are doing well, getting on with life and aren't members of forums like this.
We tend to be the ones who either arent getting better on Levo, or have an ignorant, poorly informed GP who doesnt treat thyroid properly or are complex in other ways, sometimes all 3 together 😁.
Or sometimes people who like me, have optimised their thyroid health thanks to the forum and now stick around. To carry on learning, reading about others experiences and trying to hopefully offer advice and support where we can. Obviously there's a social side to any community and there's nothing like talking to other people who know exactly what you are going through.
Chronic illness/ conditions can be very isolating and trying to explain that you feel absolute pants to family, friends or colleagues, especially when you look tickety boo on the outside, can be very wearing. But we get it, we've all been there.
One thing I did notice from your post was Levo timing, ideally you take Levo with water and on an empty stomach. With nothing for an hour afterwards. No tea, coffee or food. For this reason you could switch to bedtime dosing or if you regularly get up for the loo in the night, try taking it then.
Ok thank you. Yes I wasn’t thinking about seeing the Endo right now just thinking ahead. Oh I don’t think I can wait an hour to drink my morning coffee 😩 it’s the only coffee I have per day usually. perhaps the nighttime routine would be better for me then. So when I’m due my next blood test I would refrain from the night before dose and take after the blood test instead? And how long after eating food do I take it in the evening?
I think the advice is one hour before food or two hours after. We normally advise leaving 24 hours after taking Levo before a blood test. Plus try and book a test for 9am or earlier, dont eat or drink anything but water. This gives the most consistent results and results in TSH being at its highest. Useful if you want a dose increase or to avoid a dose reduction.
Great thanks, so just to clarify If i do the nighttime routine, when having a morning blood test I would skip the previous night dose and take after the blood test and then another dose that evening or completely skip the dosage the night before the blood test and continue on the following night? Hope that makes sense
Yes as long as you leave 24 hours before testing, Levo is a storage hormone, it doesnt actually do anything until you take it and is slow to act, so take it in the morning 24 hours before your test then go back to your usual nightime. Although not recommended you could in theory take your whole week's worth of Levo in one go.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Yes they did, apart from being advised to take Vit D supplement I wasn’t advised to supplement anything else so any advice on that would be very helpful. I’ve confused my self of what would be helpful or not 🫤
( roughly.... it's a very long time ago and i wasn't taking good notes)
50mcg ~ 'nothing much' happened for a couple weeks, then maybe a week of feeling quite a bit better , followed by another 3 wks of feeling less good again, /blood test done / TSH 2.9
increased dose to 100mcg , nothing much for a week or two, then about a month of feeling a bit better, then less good again for a couple of weeks / blood test done / TSH 2.5
increased dose to 150mcg, nothing much for about a week , then felt about 75% better for several months , blood test done /TSH 2.7
felt ok for several more months ( never felt 100% though) , then felt less good again ...
didn't test , tried 175 ish for a couple of wks to see if increase helped , but felt worse / blood test done T4 very high/ TSH totally supressed, so reduced dose back to 150mcg , GP wanted me to do 125 . tried it, but no good so went back to 150mcg and stayed there. This process of 50 >> 100 >> 150 >> 175 >> 125 >> 150 took about a year and half
note ** re. my increases of 50mcg at a time ~ i would not recommend that to anyone now .. at the time i had no idea what i was doing .... i had no problems from doing it that way , but 25mcg at a time is a much better idea , it's easy to overshoot if you go up by 50mcg at a time... now that i am close to the right dose (and have a bit more sympathy for my body) i will only adjust by 12.5mcg at a time, as that is enough to make the difference between a bit too much and not quite enough.....
also, note** when i tried 125mcg i only gave it a couple of weeks before spitting my dummy and insisting i went back to 150mcg .... with hindsight 2 weeks is nowhere near long enough to know how 125mcg would have felt , i now give any dose change at least 6 wks before deciding how it feels.
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ quote taken from this post which has other stuff that may come in handy at some point : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-
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Blood results in - not convinced!!
New to Levo - what to expect 
First results for T4. Are they OK?
Recently Added T3 - what should I expect
T3.... what to try next
