Hi everyone.After 8 weeks of being on 50mg of levothyroxine I got my results and found them confusing.My results are :
Serum TSH 13.61
Free T4 13.4
Eights weeks ago my test results were:
Serum TSH 27.69 so it's fantastic that it has gone down but my confusion is this-
Free T4 11.8(why has is only gone up a couple of points if TSH has gone done so many points?)
I mean is this normal?
And I'm feeling sooo much more exhausted with no motivation whatsoever.I now take vitamin b complex (ingennus) recommend on here,the vitamin d spray by better you.
I feel so much more poorly on levothyroxine than I did without it and I don't know what to do- I will be buying the test kit from blue horizon in the new year,but is there any else I could be doing until then?Thank you so much for your help and support,i truly appreciate it.
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No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
the aim is to increase dose levo slowly upwards, usually in 25mcg steps……until TSH is below 2. Aiming for Ft4 at least 60-70% through range and resolution of symptoms
Thank you for getting back to me .I have been put on 75 now ,accord 50 and 25 of a different brand.I take my levothyroxine at 6.30 and do not eat or drink until an hour after,but I do then take my other medication and supplements also an hour later so i need to be leaving a bigger gap.The lady at the doctor's kept on asking me if I'm drinking coffee with my medication which i found weird,i told her i don't but it's as if she expected my results to be different to what they are,i honestly do not eat or drink anything until an hour after taking my levothyroxine.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
The 25 is Wockhardt.I had my weight done at the doctor's,I was 49kg so I should be on about 78/79mg levothyroxine?I did ask at the doctors what my tsh should be and she said "they like it to be 2" so i have a long way to go.Can i ask if the 75mg doesn't bring the levels down enough and they increase it by 25mg wont that be too much for my weight and would that cause a problem?
My next bloods are the start of January.I didn't know about the gut issues -are there ways to improve it's absorption?I cannot wait to do the text kit in the new year so I can see all the other things the doctors do not text for,once I buy my kit from blue horizon should I just not take my levothyroxine in the morning and should i not take my vitamins or does that not make any difference?
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
Take your morning dose levothyroxine AFTER blood test
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if taking
, unfortunately it's also fairly normal to have a hard time with ups and downs during the first few months of finding the right dose .
The high TSH , and the fact you feel lousy, shows that your GP now needs to increase the dose to probably 75mcg .
it's a tedious process finding the right dose and waiting for the body to respond . you are still on a very low dose , so your body is not able to perform properly yet . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A (hopefully) 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."
Serum TSH 27.69 so it's fantastic that it has gone down but my confusion is this-
Free T4 11.8(why has is only gone up a couple of points if TSH has gone done so many points?)
Because progress is not linear. The number of points of TSH reduction is not tied to the number of points of increase in FT4. That's not how it works. For one thing, so many things can affect TSH levels - time of day, for example. Were both blood draws as the same time of day?
And, don't forget, it's not just about the FT4. There's also the FT3 to consider. And T3 has a greater suppressive effect on TSH than T4. It's really a lot more complicated than x amount of TSH equals y amount of FT4.
And the important number is the FT3 - although they rarely test it - seconded by the FT4. The TSH isn't that important - or reliable - once you are on thyroid hormone replacement.
Can you put the ranges, please? We always need the ranges because they vary from lab to lab.
What were your B12 and folate results?
It often happens that one feels worse when starting levo than one did before. For one thing, levo does not 'top-up' the hormone made by your thyroid, it replaces it. And the hormone you're taking now may not be enough yet to completely replace it So, the effect could actually be a reduction in the amount of thyroid hormone in your system, rather than an increase. 50 mcg is only a starter dose. But with hormones we always have to start low and work up slowly, to give the body time to adapt. Did your doctor not give you an increase to 75 mcg after this test?
Also, when your thyroid slows down and stops working, you become entirely reliant on conversion of T4 to T3 in the cells. You no-longer have the T3 made by the thyroid itself or the conversion that is done in the thyroid. So, that is going to make you feel worse in the short-term, until things settle down, and you get on the right dose of the right thyroid hormone replacement for you.
Thank you for explaining.They did not give me the ranges this time,but I will try to find out .Both test were done around mid morning but my first one was not fasted the second(this recent one)was fasted and no levothyroxine taken in the morning (I've been trying to follow the advice on this forum). Obviously when I buy my test kit that will include a t3 and antibodies so i will learn more.All i know now is i was subclinical hypo to begin with so high tsh normal T4.Ive been trying to find reasons for this,so far ive come to understand it can be hashimotos or epstine barr(im sure there are lots of other things to discover).
So, at mid-morning your TSH would be getting low. And, as doctors only tend to look at the TSH - they don't know about much else - we always advise having the blood draw before 9 am.
Subclinical doesn't mean much. It's just an excuse to avoid treating as many people as possible! Being hypo is like being pregnant: either you are or you aren't! You can't be subclinically pregnant, can you. And a so-called 'normal' FT4 would be around mid-range. I bet yours was lower than that.
The Epstein-Barr virus can trigger Hashi's, it's true, but having the virus is not the same as being hypo. There are many, many other reasons for becoming hypo, but Hashi's is the most common one in the Western World.
Oh my goodness you made me laugh when you said "you cannot be subclinically pregnant" thank you for cheering me up,I'm so down right now and yes you are absolutely correct about my T4 when I was first diagnosed was exactly on the start of the labs range so I guess that means i am simply hypo- I'm just so poorly on levothyroxine and it's taking all my will not to stop taking it,i know that probably sounds silly to you as you know everything there is to know about thyroid issues (im just missing the old fun not exhausted me)and i want the old me back.Also since starting levothyroxine the bottom of my throat hurts sooo much even when i walk it pounds with pain and i cannot sleep on my side as it causes more pain in my throat(i did not have this before the levothyroxine).
One other thing I've noticed,for three days now I've had a rash exactly where my thyroid is-it looks like an allergy rash(red spots but some white spotty bumps like you get with an allergy)I have woken up this morning and my sore throat is worse and the rash is going onto the back of my neck where my hair line is-is this something to do with hypothyroidism or levothyroxine or something else -in your opinion?
It is quite normal that you will start feeling worse before finally getting better, especially at the beginning until you are finding your optimal dose. It is up and down at the beginning, as GG explained it is not a linear or steady process, it can be good one day and the next it's all up in the air. Be patient and try to optimise your nutrients as best as you can (if not already done so, do a test for iron, folate, Vit B12 and Vit D), as these will help your thyroid hormones work more efficiently and will assist in the conversion of T4 to T3 (active hormone).
Important thing is to keep on testing 6-8 weeks after each dose increase, so you know exactly where your FT3 and FT4 levels are and if you need to adjust them. If the surgery only tests TSH and perhaps even T4, I would do a private blood test and test your T3 as well. Even if your TSH and T4 look okay, your T3 might still be low and could give you symptoms, but you would not know if it is not tested.
The dosing by body weight is just a guidance and can be applied for example, if a GP refuses to increase the dose; but it might not work for everyone. Some people are okay with lower doses or others might need much higher doses to feel well. It all depends on the individual, as we all react differently to thyroid hormones.
Hi,thank you for all your helpful advice,I truly appreciate it.Do you think if I asked my doctor to test my T3 they would do it?the two blood test I have had they only test the TSH and T4.Since starting levothyroxine i have had really bad pain in my thyroid,when i walk it hurts,i cannot sleep on my side because it squashes my throat which makes it hurt more,i now have a rash exactly on my thyroid -im just worried that the levothyroxine is doing something terrible to me-i really want to stop taking it,but i know i should not do that-honestly i had no symptoms of hypothyroidism before i started levothyroxine but now i have them all ten fold.I cannot stay awake and have no motivation,before levothyroxine i was alert,motivated,happy now um just not me.I understand i have to wait to get to the correct dosage but what if i get there and still feel this way?Does everyone go through this when starting levothyroxine?like from no symptoms to full blown symptoms?is it normal?sorry to burden you with all my questions,I just feel terrible.
I know how you feel and yes, it can be really terrible at the beginning, making you question if this is the right thing to do - but it really is, as your body literally depends on it.
You need to remember, that even though you may not have had many symptoms before, your TSH was very high and this was in response to your low T4 (and likely very low T3 as well). TSH is the thyroid stimulating hormone, it is a signal that is send from your pituitary gland in the brain to ask your thyroid to produce thyroid hormones. However, as your thyroid could not produce the hormones, the TSH just kept getting higher and higher, basically 'screaming' at your thyroid to produce more hormones, which your thyroid cannot do. You were started at 50 mcg levothyroxine, which is a normal dose and your system has 'mopped' this up already. And your system is now getting used to having some hormones, which can be confusing, hence the symptoms. In response to treatment, the TSH has come down a bit (but still quite high, we aim for a TSH of around 1), as it 'sees' the T4 hormone (e.g., levothyroxine), but your free T4 level indicate that this is still not sufficient for your needs, and that you will need more. The next step is to increase by 25mcg again and then test again in 6-8 weeks (I think you are on 75mcg now) and continue until your hormone levels have come to a level that will make you feel better.
It can be quite difficult at the beginning as your body gets used to having thyroid hormones again after a period of not having them, so it can cause quite a bit of upheaval. However, you cannot live without thyroid hormones and if you do not take them, you would deteriorate and eventually you could fall into a myxedema coma, which you certainly don't want.
The general NICE guidance is that replacement should be given at 1.6 mcg per kg of weight. But this is only a rough guide, some people are okay with less, some people need more - but it gives you a ballpark idea of how much levothyroxine you might need. So just bear with it at the beginning and eventually you will get better - try to be patient.
Most surgeries will not test T3, even if GPs would ask for the test, some labs have been known to override a GP's request and refused the test - so not sure how your surgery would fare.
Most people here test privately and get TSH, T4 and T3 tested. I would also advise you to do a test for iron, folate, Vitamin B12 and Vitamin D, as many patients with an underactive thyroid are deficient in these nutrients. If these levels are low, your thyroid hormones cannot work effectively, which will contribute to you feeling not well and having symptoms. So I would think about doing these tests. Some of the private labs are affiliated with Thyroid UK, so if you enter THYROIDUK10 as a code, you will get 10% off the costs.
GP is unlikely to be allowed to test fT3 , (even if they wanted to , and they usually don't want to cos most of them don't agree it's necessary) , their labs often have restrictions/ protocol ... so most of us test privately if we want to know TSH / fT4 /fT3 at same time . (this doesn't need to be too costly ~ eg NHS run service called Monitor-My-Health costs about £30 for TSH / fT4 / fT3)
however in your case it is far too early for you , (or the GP) to be paying to look at your fT3 level .... even if the result was stupidly low at the moment, the best course of action would be just the same .... ie gradually increase levo dose in stages testing TSH and fT4 , until TSH is around 1 ish , while keeping fT4 within range ... and THEN look at fT3 level if symptoms are not resolved.
you can't tell anything very useful from an fT3 result until you are taking enough T4 to see how much T3 the body is capable of getting from it ~ at the moment your very high TSH was showing you need more levo , which has just been increased .. so now it is a case of wait another 6wks to see what your body does with 75mcg .... (sorry, i know how frustrating that sounds when you are feeling so unwell you wonder how you'll even get to tomorrow , let alone 6 wks , but welcome to hypothyroidism , the disease that gives you an enforced lesson in patience, whether you want to learn it or not )
most people end up needing somewhere between 75mcg and 150mcg levo. Some feel better with some added T3 , or various other combinations, but adding T3 too soon before you are on the right dose of levo usually just complicates/ confuses the issue .
Keep plodding on , one day at a time for now , and try not to panic about how horrible it feels during the first few weeks of any new dose ... the first 4/5 weeks of any new dose are not a true representation of how that dose will feel once the body has had long enough to make proper use of it ... and remember this always take weeks/ months , not days.
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