Hello,I'm new here and have very little knowledge if thyroid issues.I would like some advice/help.I have been prescribed 50mg of levothyroxine which I have been on for six weeks as my blood test were showing-Serum free T4 11.8
Serum TSH 27.69
My question is do I really need levothyroxine if my thyroid is working?I had no symptoms (well I'm not exactly sure about that)as I'm suffering from what I believe to be perimenopause symptoms which started July 2022-hot sweats constantly, dizziness, anxiety, tiredness ,only a handful of mensural cycles since then,but I've read this can also be the thyroid.I also have very high blood pressure -could that be caused by any of my issues?and I'm going to the doctor as I believe I have tmj(extremely painful suffering for months can hardly open my mouth and when I yawn oh my goodness the crunching and pain is unbearable).
I realise I've posted a hundred and one things but I just need help and support as I'm really low at the moment and don't know how to help myself get back up.Thank you,I truly appreciate your help.
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
It sounds to me like you have a lot of symptims but they are all so different it can be hard to mentally put them all under one cause. Thyroid hormone is needed by every cell in the body, so if you dont have enough then symptoms can be many and varied, often different from person to person.
Your TSH was fairly high above range and no doubt you've been suffereing for a long time before it was discovered so recovery will be slow.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thank you so much for getting back to me .I will buy one of the online tests so I can check all the relevant levels.The knowledge you have provided me with is fantastic and so helpful (especially to someone like me who knows nothing).I do not think the doctor tested for antibodies,there is a full blood count and then the two thyroid results of T4 and TSH.You mentioned vitamins-should i purchase some now or wait until I've been tested?thank you
Your TSH is very high, the TSH is the thyroid stimulating hormone, that signals your thyroid to produce more thyroid hormones (which are T4 and T3). The normal range for TSH are somewhere between 0.4 and 4.0 (can vary between different labs), so your high level suggests that your thyroid is really struggling to produce enough thyroid hormones. The normal range of T4 is between 9 and 23 pmol/l (again can vary from lab to lab) and again your T4 level is very low. There is also T3, which is the active thyroid hormone and which will be converted in our body from the T4, but most GPs do not measure this. I suspect that your T3 will also be low, hence your tiredness.
The symptoms you describe might overlap with symptoms of the perimenopause, but I would attribute the majority to your lack of thyroid hormones. Tiredness and anxiety are classical hypothyroid symptoms, as is hypertension, as the low amount of thyroid hormones in your blood can lead to a slower heart rate, it can effect the elasticity of your blood vessels and hence the blood pressure can rise. Many hypothyroid patients also have elevated cholesterol levels, as the lack of thyroid hormones will slow down your metabolism, so you cannot easily clear lipids, such as cholesterol, from your circulation, therefore the levels can increase. Lack of thyroid hormones can also lead to weight gain, again due to the slowed down metabolism, but it is not a dietary issue. Once you are on the right amount of replacement, these problems should go away.
50 mcg is a starter dose and you should have another thyroid function test after 6 weeks on that dose. It is important to test TSH, T4 and T3, so you can get a clear idea of all your thyroid hormones and how they have improved on your last dose. There are private tests available (for example monitor my health offer a thyroid panel, TSH, T4 and T3) and most of us here do private testing, as most GPs only test TSH and maybe T4.
A normal replacement dose of levothyroxine is 1.6 mcg levothyroxine per kg of weight - so as an example a person weighing 63 kg should receive 100 mcg levothyroxine replacement. This is set out in the NICE guidance as well:
Therefore it is important to test 6-8 weeks after you had a dose increase, so you can get another increase when your levels are still not optimal. Most patients feel well when the TSH is around 1 or below and both T4 and T3 between 60 and 80% through the reference range.
You also will need optimal levels of vitamins and minerals such as ferritin (iron), folate, Vit B12 and Vitamin D. This will help your body to process your thyroid hormones and will also help you convert the T4 you are getting to the active thyroid hormone T3, which will help with your energy levels.
It all sounds a bit daunting at first, but we are all here to help and support you.
Thank you so much for helping me.Can I start by saying wow you are one hundred percent better than a doctor (so much useful information).Can I now ask what is probably a really silly question -if levothyroxine is T4 and my T4 levels are ok does that not mean the medication will make my T4 levels too high?I am definitely going to get a private test as it sounds a lot easy to do that then struggling to get a blood test appt at my doctor's(they are short staffed right now)my next blood test it at 11am and i think thats 10weeks since i started the levothyroxine,i take my medication at night (when should i stop taking it)?oh and should i buy vitamins now or wait until ive had a test? thank you
There are no silly questions here, on the contrary it is good to ask if something is unclear.
Your T4 is a hormone and it has got what is called a 'normal range'. This range is based on the levels that can generally be found in people without thyroid disease. I don't know what the lab range is for the test you had, but generally the range is between 9 and 23 pmol/l, which is quite a wide range. Your level was 11.8 and would perhaps just fall into the normal range, but it far from an optimal level. It is like with a car that has got a very low levels of fuel in it, yes you can perhaps drive for a short while, but you run out of fuel very quickly before the engine kinks out. Only when you fill your car up to a much higher level, you will be able to go further distances. It is similar with your body, with the low thyroid hormones, you get some fuel that your body needs, but this is quickly mopped up and you are running out fast, as the dose is too low, even if it is in the 'normal' range. And as you are still having severe symptoms, you need much more, so your 'engine' can run more efficiently. You would need a lot of T4 to go over the range to have too much of T4, and your dose is very low at present (many people take between 75 (if petite) and 150 mcg). You certainly do not have enough to just be able to perform your normal metabolic functions, hence your tiredness, anxiety and hypertension.
If you can, I do a private blood test, monitor my health do a test and if you enter THYROIDUK10 you get 10% off the price.
You need to be fasted for the blood test, you should not take your levothyroxine 24h before the test either, as this will give a false high T4 level, and do the test ideally around 9-10am, as this is where your TSH is the highest.
I would also get a test to check your vitamin and mineral levels before you start supplementing, as this will guide your supplementation routine. No point in supplementing what you don't need, however most people are deficient in key nutrients. Slowdragon has given you good links where you can test vitamins and minerals.
Once you have done the tests come back here and post the results (please include the reference range of the lab, as there are different ranges for different labs) and people can advise you on the next steps.
Thank you for your explanation,I understand it a lot clearer now.I looked at the lab range and it's 11.5-22.7 so that must mean I'm only just in the range .So does that mean my thyroid is dying?as in my TSH is so high because my thyroid is coming to an end?I mean why is my thyroid struggling (I do wish body parts could speak).If you replace all the T4 with levothyroxine -wouldnt a thyroid gland just say"well i don't have to do anything anymore"or is that completely wrong(as you can see I'm just still very confused).As i understand it the TSH is very high because the thyroid is not doing its job ,so that must mean it's in poor shape or is that not it?Thank you for putting up with me,I honestly appreciate all your help and the fact that you put it into words I can understand.
Hypothyroidism is an autoimmune disease. An autoimmune disease occurs when the body's immune system mistakenly attacks healthy cells, tissues, or organs. This can happen when the immune system can't tell the difference between the body's own cells and foreign cells. So in your case, your body thinks that the thyroid is a foreign object and produces antibodies that attach to your thyroid. They basically 'tag' your thyroid cells to signal your immune system that this is a foreign object, that needs to be dealt with (just like they would do with a virus or other foreign object). Then the cells of the immune system come and attack the thyroid cells and thereby destroy it. As a result, the cells of your thyroid can no longer produce the thyroid hormones you need for the normal function of your body. When the thyroid hormones are low, the TSH increases, as this is the signal from your pituitary gland in your brain to produce more hormones. However, as your cells are depleted or destroyed, you cannot produce the hormones you need and the TSH just rises higher. When you are on replacement therapy, you increase your thyroid hormones again, therefore the levels will slowly rise and as a result the TSH will come down, as it 'senses' the hormones. It is all a fine balance. The TSH is a good diagnostic tool, but when you are on replacement therapy, it is better to check the T4 and T3 levels, as this will give you a more accurate idea what your hormone levels are, as the feedback from the TSH is not reliable enough. After all, you are having an autoimmune disease, so why should the TSH feedback work as it would in a healthy person?
And yes, your thyroid is slowly giving up and will not function as it has, so you will have to take replacement therapy from now on to replenish your levels. And this is why you need to be tested on a regular basis to see how your therapy is working and so you can top up those levels if you are under-replaced. As I mentioned before, your 50 mcg is only a starter dose and you need to test again 6 weeks after you have been on that dose, so you can get another increase to 75mcg. It is a slow process at the beginning, but once you are getting towards your full replacement dose (remember the 1.6-1.8mcg levothyroxine per kg of weight), you will see a difference. Your T4 of 11.8 is just in the range at 2.68%, which is very, very low - as I mentioned earlier, most people need their T4 between 60 and 80% through the range, which would be a lot higher than you currently have, hence you are feeling so unwell. And I suspect that your T3 levels will be very low as well, which will be important to check too, as this is the active thyroid hormone that impacts your energy levels.
So the best thing would be do a full thyroid panel and check your nutrients as well as previously advised and then you can make a plan. Hope this helps?
Oh my goodness your explanation was so clear and precise,I completely understood what you were trying to get across (which for me is a miracle, especially with the way I'm feeling right now). I can't thank you enough for just taking the time to explain things to me,if I could I would give you a big hug .I will definitely order a full thyroid/vitamin test and send you the results,oh and I've checked when my next blood tests are at the doctors and it's the 26th at 11am so if im correct I do not take my medication sunday or monday night and i do not eat breakfast?(i really want to get this right)
It can all be overwhelming and confusing at the beginning and I am glad I could help you understand it a bit better. And don't worry, you will get on top of this and things will get better, I promise!
I would not take your medicine the night before your blood test, and in the morning of the test, just have water, nothing else (no breakfast). This will give you the best and most accurate results.
It is good that you will get tested at the doctors, but as I mentioned they will not test T3, which is the important active hormone, and if the levels are low you would not know. Hence if you can do the private testing as well, that would be really helpful together with the nutrient testing. You should have been tested much earlier, 10 weeks is too long, especially since you are so symptomatic. The next time insist on a test 6 weeks after you had an increase in dose.
I am sending you a big hug, hang in there and things will start to improve soon. 🤗
hot sweats constantly, dizziness, anxiety, tiredness ,only a handful of mensural cycles since then,but I've read this can also be the thyroid.I also have very high blood pressure -could that be caused by any of my issues?and I'm going to the doctor as I believe I have tmj(extremely painful suffering for months can hardly open my mouth and when I yawn oh my goodness the crunching and pain is unbearable).
All these are hypo related symptoms
Bloods should be retested 6-8 weeks after each change in dose or brand of levothyroxine
50mcg is only the standard STARTER dose of levothyroxine
You will almost certainly be ready for anchor needing next increase to 75mcg after next blood test
Which brand of levothyroxine have you started on
Request GP include testing of thyroid antibodies for autoimmune thyroid disease at next test
Plus testing vitamin D, folate, ferritin and B12 too
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Thank you so much for all your great information -you are like a doctor online,well better than a doctor as they give you no information or when they do it's ultra complicated.I am taking the teva brand.The earliest I could get an appt at my doctor's for bloods is in a couple of weeks time,i think that's about ten weeks since i started the medication (they are short staffed)and my appointment is 11am-so when should I stop taking the levothyroxine my test is on a tuesday?I take it at night just before bed .I'm going to buy a private test as i think it will be quicker then trying to get an appt at my doctor's.Oh and ive had tinnitus for a few years ,could thyroid issues cause that?I'm sorry for all the questions,i just want to understand more.Thank you for helping me,i have never been on a forum before but its nice to know there is support for people like me.
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