I recently have been diagnosed with underactive thyroid that was picked up during some day 21 blood test results as I have been unsuccessfully trying to conceive for a year.
I would like some help interpreting my results and wondering if anyone else has had similar levels and success with levothyroxine? I am particularly worried about my TSH levels as after multiple hours scrolling on here I can’t seem to see any as high as mine?
My serum free T4 was 5, and my TSH was 254.
Has anyone had similar levels and controlled it with levothyroxine? My Gp has prescribed me 125mg.
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Summermama31
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So we can offer better advice, can you tell us more about your thyroid condition, eg ongoing symptoms. Please add ranges (in brackets after results) for:TSH and FT4 (as these can vary between laboratories)
Was FT3 tested at all?
Have you had any antibody tests? Or key vitamin tests (ferritin, folate, vitamins D and B12)?
If your GP is unable to complete all the above (eg some surgeries may not be able to access FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Your TSH is very high, but 125mcg Levo is a considerable starting dose. Were you advised to start lower and build up to this? Are you booked for a retest with GP 6-8 weeks after starting Levo?
I would certainly push for GP (in first instance) for FT3, antibodies (to see if your have an auto immune thyroid condition) and key thyroid vitamin tests for a comprehensive view of your thyroid health.
Keep posting and asking questions- this is a supportive and knowledgeable forum and we are here to help🦋
My main symptoms are fatigue and weight gain, though neither have been bad enough to push me to get tested. It was only because I have been struggling with infertility that I went for tests. I only had the standard NHS tests done so they didn’t test FT3 or antibodies, I do think I will need to go privately to fully understand what’s going on as my GP didn’t really go into it at all. I asked to be referred to an endocrinologist as I am trying to conceive however they declined.
My GP has asked me to book in for tests in 3 months time so in May, however I am thinking I should ask for some sooner so in 6 weeks time instead? She didn’t mention anything about increasing or future treatment etc, in all honestly she didn’t say much at all.
I have attached screenshots of my results so hopefully that helps, sorry to have not included the ranges I didn’t realise they differed I am so new to this. I do think I am slightly iron and b12 deficient too so have started taking vitamins for this and am making changes to my diet too.
I haven’t had those tested, I think I will need to go privately for that or maybe ask my Gp at my next appt? They suggested monitoring again in 3 months time but I think I might push for it sooner. There is no missing decimal my TSH did come back as 254, I have attached a screenshot of my results in one of my replies above.
I have started taking the Levo, haven’t noticed any difference yet but it’s only been 3 weeks, I’m really hoping to get this sorted soon as we’re in the process of trying to conceive and have obviously had to pause it while I sort myself out.
I thought “day 21 blood” test was a private test company, but I see now it was to do with fertility & NHS have only tested TSH & FT4 in terms of thyroid.
Labs sometimes add thyroid antibodies. This will tell you if you have an autoimmune condition, where your immune system mistakenly attacks & damages your otherwise healthy thyroid. Most hypothyroidism is due to this but drs do not always check as the treatment is the same what ever the cause.
That TSH is impressively high, the higher the TSH higher the signal to thyroid to increase production of more hormone, but the thyroid is failing, there’s next to no FT4. Your FT3 would likely be very low but increased in comparison - your system will be prioritising preserving the most important active hormone. TSH also increases conversion of FT4 to FT3 , So FT3 levels would likely be hanging in there which has kept you able to function.
Push for retesting in 6 weeks & for full testing. You might like to point out even the lab notes on system state “ It takes 6-8 weeks to reach a steady state after
starting levothyroxine or changing dose” so leaving beyond that is just delaying progress.
Doctor hasn’t seemed to inform / prepare you much, this is a common story.
That is pretty high, yes. But, don't let it get to you. The TSH is the least important number, even though it's often the only thing doctors test!
More important is the FT4 (the most important being the FT3 which they don't test at all!). But we cannot tell how low/high yours is as you haven't put the range - ranges vary from lab to lab, so very important to always give the range that came with your result.
A high TSH just indicates that your thyroid hormone levels are low - TSH is just a chemical messager from the pituitary to tell the thyroid to make more or less hormone. The thyroid hormones are T4 and T3.
What worries me is that your doctor has put you on such a high starting dose. The normal starting dose is 15 to 50 mcg, depending on age. (And it's mcg, not mg. ) I suppose he did that because of your very high TSH, but that's not the way it works. With hormones - any hormones - you have to start low and increase slowly, to give the body time to adapt. For levo - which is T4 - that means starting on 25 or 50 mcg and increasing by 25 six to 8 weeks later. So, if you decide to go with that starter dose, be careful it doesn't make you feel worse.
The idea of taking thyroid hormone replacement (levo) is not primarily to 'control' the TSH. It is to raise low levels of FT4 and FT3. But it will reduce the level of the TSH, of course. How long that will take is anybody's guess, but the protocol is to continue increasing slowly until you feel well, and your symptoms are gone.
Oh thank you that makes me feel a bit better, I still am trying to get my head around what it all means my GP didn’t really say much! I have included screenshots of my results in one of my other replies so you can see the ranges. Sorry I didn’t even realise they differed, this is all so new to me.
Yeah I did think it seemed a high dose, but maybe because I am trying to conceive too as she did say it was different guidelines?
I don’t feel any different at the minute, but I wouldn’t say I had major symptoms in the first place it was a few minor things that once I realised I was hypothyroid all made sense!
Thanks so much for your reply, it’s comforting to know there are so many people who know so much about this. I hope I can get this under control soon, I am due bloods in 3 months time but I might push for sooner, and get some private tests in the meantime too to get a more complex picture.
Just book your blood test for 8 weeks from the start and turn up. I don't think it will be questioned at the point of booking.
You must get this sorted out before getting pregnant. So don't keep trying, just in case, at this stage. A baby needs to freeload on your thyroid until it's own develops and you don't have enough for you, let alone to share. Lack of thyroid hormone can cause developmental issues.
Yeah I did think it seemed a high dose, but maybe because I am trying to conceive too as she did say it was different guidelines?
Not when trying to conceive, no. It's after conceiving that the rules change.
And she probably didn't say much because she doesn't know much. None of them do.
Oh! Your FT4 is very, very low! Well below range. But even that doesn't mean your body is capable of tolerating such a high starter dose. You must have been hypo for a very long time to have such a low FT4, and to suddenly dump that much hormone into it will come as a terrible shock.
Please don't expect to 'get this under-control soon'. It's going to take a long, long time. Nothing happens rapidly with hormones. You didn't become hypo over-night, so you're not going to sort it out over-night, either.
I don't think there's much point in testing sooner than three months given the size of your starter dose. Starting on 50 mcg it takes six to eight weeks to see any difference, so with your dose it will take longer to settle in.
I didn’t think about size of dose affecting settling in time. It’s a very large starting dose. Yet the OP mentions no reactions, which seems unusual. My body freaks out with every increase in dose, even small ones.
I didn’t realise the higher the dose the longer it takes to settle in. I’ve been taking it three weeks now and haven’t had any side effects, I feel the exact same as before. Considering my levels are so poor I don’t have massive symptoms, and as I said above I wouldn’t have even gone for tests had I not been struggling with infertility. Now, I suspect I’ve been hypo for about three years since the birth of my daughter as that’s how long I’ve struggled with weight gain.
No I didn’t have antibodies tested, if NHS do them I will ask at my next bloods, although I am considering a more thorough private check in the mean time.
I really don't think there's much point in testing thyroid at the moment. You can guess what the results are going to be: high TSH and low/very low FT4 and FT3.
However, it would be a very good idea to get nutrients tested: vit d, vit B12, folate and ferritin. I would say that it's more than likely you'll have high antibodies if the problems started after child-birth. That's very often what triggers Hashi's.
I will definitely get those tested, I did have b12 and iron tested as part of these tests and both came back borderline low so I have started on supplements for those and have really been concentrating on my diet too.
I think it’s going to be a long process to get my body back to normal again!
If you're calling your B12 'borderline' low, I'm guessing it's actually very, very low because the ranges for B12 are always rubbish - well, if it's a serum B12, which is what doctors usually do. It should be at least over 550. But just taking B12 by itself is not going to help you much because all the BS work together and need to be kept balanced. So, what you need is a methylated B complex.
Did you have iron tested? Or was it ferritin? Or a complete iron panel?
Don't worry too much about your diet. It's not your diet that is at fault. Hypos usually have low stomach acid which makes it difficult to digest food and absorb nutrients. Which is why we all need supplements.
Personally I would start at 50mcg and then increase in increments of 25mcg once well tolerated, as 125mcg is a hefty starting dose. You can buy a pill cutter cheaply on Amazon to help with this.
Thank you for your advice, I will discuss this with my GP as I don’t want to go against her but it seems a few people on here think my dose is too high and seem to know much more than my GP did when it comes to hypothyroidism. The only thing I am nervous about is I’ve already been on this dose for over 3 weeks now I’m worried my body has already got used to it.
People diagnosed with high TSH often do better than others who are hypo with much lower TSH
Your TSH is obviously highly responsive and (as that’s all many medics look at) it’s easier to get diagnosed and treated
Which brand of levothyroxine are you taking
Presumably you have 100mcg and 25mcg tablets
You need to wait TTC until levels are stable and as importantly vitamin levels are tested and improved to good levels
Are you currently taking any vitamin supplements?
If yes what exactly
Are you vegetarian, vegan,
Or gluten intolerant and/or dairy intolerant
how are you taking your levothyroxine
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
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
I am taking a general multi vitamin for TTC, and have recently added in b12 and iron supplements separately as these were borderline low during my last bloods.
I take my levo first thing in the morning so on an empty stomach, and don’t eat until two hours later.
I asked my GP to be referred to an endocrinologist as I had read the guidelines, my GP did but the endo refused to accept the referral until I am pregnant.
Unfortunately I did have a miscarriage last year before I knew about my thyroid and I do believe now this likely caused it, although my GP didn’t seem to think so. I am fully aware of the risks and am pausing TTC until my thyroid is stable as I wouldn’t want to go through that again.
Yeah I feel generally okay, I’m tired most of the time but that also comes with having a toddler, and I’ve put on quite a bit of weight in the past couple of years. But to be totally honest, nothing that would’ve made me see a GP other than infertility and miscarriage.
Its a long story but I have once had a TSH that high. I can only image you must be feeling terrible.
Your GP has started you on a high dose of Levo which may or may not suit you. Usually we start on a low dose and work up to higher doses over many months. This allows the body time to get used to the hormone it has been missing. See how you get on with what you have been prescribed.
It will take a long time, many months for you to feel better but you certainly can recover in time.
Your TSH was very high and your T4 under range, this was probably why your GP prescribed 125mcg levothyroxine to start with.
However, as others have mentioned, this is quite a high starting dose and it can cause all sorts of effects, given that you probably have been deprived of thyroid hormones for a while considering your results. If you start too high, this could cause palpitations, as your body probably won't know what to do with the influx of all these hormones and might go into 'overdrive'. I agree that you would need to get some hormones added swiftly, but I would have thought he would start at 50mcg for 2-3 weeks and then titrate up to 75mcg, then to 100mcg and then see where this will lead. Testing after 3 months is not really the answer, as it could be that you don't need to be on 125mcg and that would overshoot your sweet spot.
Maybe discuss this with your GP again and perhaps ask to start more slowly with his consent and if you tolerate the doses well, you can move up more quickly? Or you could try it by yourself and see how you get on and if you tolerate the medicine well, you can increase it? We all react differently to medication, so it is difficult to judge, but I would just be cautious at the beginning with such a high dose, so you don't get too many side effects or have the feeling it is not working properly.
I have been taking 125mcg for 3 weeks now I haven’t noticed any side affects, I’m torn with what to do now as a few people on here have suggested lowering but I have already been taking it for over 3 weeks so am nervous what the effects of lowering it would be now! I don’t feel there’s much point talking to my GP about it she doesn’t seem to know too much about thyroid issues and just followed what was recommended on screen. She did say it was higher guidelines for those trying to conceive too.
I hadn’t realised you had been taking the 125mcg for 3 weeks already Summermama31. If you are settled on this dose, remain on this and retest levels after 6-8 weeks.
Hi there, if you are taking them without any effects that's great and I am glad that it is working for you. If you feel okay, then I would continue for now, as your stores are very much depleted and it is good to get your hormones to a higher level more quickly, especially since you are trying to conceive.
However, waiting 3 months to test still seems like a long time, could you perhaps do a private test after 8 weeks perhaps, just to see where you are? This should be long enough to have stabilised your levels.
I know it can all be a bit overwhelming at the beginning, but in time you will get the hang of it and get a bit more confident with your treatment. Many of us have learnt that we need to advocate for ourselves, otherwise we would not get anywhere!
I have seen that you take a multivitamin, these are not recommended. Problem is, many contain iodine (which is a no no for thyroid sufferers) and many contain iron, which prevents the absorption of any other nutrients. In addition, you do not really want to take anything that you are not deficient in?
The key nutrients that support your thyroid and the conversion of T4 to T3 (which is the active hormone) are Vitamin B12, Vitamin D, iron and folate. So I would test them privately (if your GP won't do them) and post the results on here again, and members can advise you what needs improving.
If you are trying to get pregnant, it is important to know that in the first trimester your baby relies entirely on your thyroid hormones, as it cannot produce its own yet. Therefore it is important that your thyroid is optimally treated to start with, so you can support your own metabolism as well as that of your baby.
Yes I think I will ask for some more bloods with my GP at 8 weeks, I also might have some private ones as it seems they test for more than NHS. I am slightly borderline with iron and b12 as my NHS tests showed, but they didn’t check for anything else. I will organise them to check for other things like vitamin D at my next bloods and post the results to help make sense of them.
And thanks for the heads up about the multivitamin I had no idea! I will have a research and continue my separate iron, b12 and folic acid in the mean time.
Some people do not get on well with folic acid, folate supplements (or methylfolate) are much better and easier absorbed.
You could supplement with a Vitamin B complex such as Igennus Super B complex or Thorne B-complex (available on amazon), as it is good to have all the B-vitamins balanced. Jarrow methyl folate is also a good and highly bioactive folate supplement, if you need a separate folate supplement as well.
It will all get easier in time and I hope you start seeing some improvements soon!
Skimmed posts ... this is a brilliant place. I am fairly new only a couple of years in.
Many on hear struggle with conversion of levo to T3 - so it is the scary 10/15 % club, most are much simpler - but the doctors treat all as simple it seems. Do not get spooked to much.
Main points are a and b.
a)Really Good you are having no reaction to the levo. - some do.
It is really slow to get active in your body weeks and weeks
b) I was TSH 78 and no T4 <3 on first and second tests. You were 4 which is better
At week 5, I wangled a blood test, (started on 50 mcg). With your T4 level, I would be pushing for an early blood test next week, just to make sure things are moving in right way. It is good to have more data to confirm things - tests are very good but you never know. ( See if they will do vits and minerals too etc)
I had bloods after starting on 50 and they moved me to 100 mcg(wk5). By about week 9 I was on 125 mg
c) Get antibody test done - is it autoimmune type - very likely
I think the worry and go slow stuff is your body starting to get used to but also if autoimmune attack is going on thyroid can release T3 and T4 from its stores - this can swing things around - "hashi swing". I would guess your thyroid damage is all done at your blood test levels - this is wild speculation from me.
You might not be able to tolerate gluten or dairy after all this too if AI type.
d) Ignore pre diabetes and cholesterol for a bit they will likely be showing up but will be OK once you get hormone working again
e) Take it very steady and let your body start mending itself. A few months of very reduced activity. I had brain fog.
I stopped crying quite quickly, which is important for a mid 50s bloke who had not been out of whack like this before. It affects every body a bit different but it will be months for your body to repair itself once its battery pack is working properly again.
I was pretty good by about week 11 and then the slow process of getting final optimisation. I was low conversion more complicated one but pretty reasonable level.
f) track your symptoms in writing somehow, weight, pulse on waking, blood pressure. These are faster than blood tests. I measured temperature but I do not have a 28 day cycle. My feet warmed up quite quickly. Stay away from ill people, do not have vaccines for a while etc.
g) as above a private thyroid test in a few months to see if you are converting to T3 correctly. You will likely need to budget for a few of these and if you can manage the home stabbing method they are about £30.
h) when posting - if few replies repost again after a day or so - they can be missed.
Thanks so much for your advice, I will take it all on board. It’s so useful hearing about others experiences with similar issues! I am definitely going to push for blood tests at the 6 week mark as I want to make sure things are heading in the right direction, I will ask them to check more this time too.
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