Advice on TSH levels: Hellooooo, so I have... - Thyroid UK

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Advice on TSH levels

cmelve1
cmelve1

Hellooooo, so I have Hashimoto's and my first "normal" blood test result this time last year was TSH 2.09 and T4 17.5. I can't say I've felt anywhere near back to how I used to feel before I got ill with all of this but I've been doing pretty damn well! However lately I have been feeling pretty tired and sluggish all the time despite sleeping better and I have been very emotional, sometimes uncontrollably crying, sometimes just a general down sort of feeling. Other times I am ok, and I have been through quite a bit lately personally so have put a lot of it down to this. I also get a strange heavy head feeling, not really a headache as such, but I had this at the beginning too so not sure if related. I had a blood test this week and my latest results are TSH 4.9 (normal range 0.35-5.5) and T4 16.3 (normal range 10-19.8). I am now wondering if some of what I have been feeling could be down to the slight rise in TSH? I have heard although within the normal range most people only feel really "well" with TSH around 2.0 - does anyone think this would be something to bring up with doc? But kind of think they are not going to be bothered as I'm within their generic normal ranges... I am alternating 75mcg levothyroxine one day and 50mcg next day. If anyone has any advice I would really appreciate it! Thank you.

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shaws
shawsAdministrator

Once we're diagnosed and taking thyroid hormone replacements, the aim is a TSH of 1 or lower - :

" I had a blood test this week and my latest results are TSH 4.9 (normal range 0.35-5.5) and T4 16.3 (normal range 10-19.8).

which I assume your GP is 'happy with'.

Tell him you've taken advice and have been advised that once diagnosed the aim is sufficient levothyroxine to bring the TSH to 1 or lower and if he'd like to also test your FT3 and FT3 at the same time, it will give a bigger picture as both have to be towards the top of the range. He probably doesn't know this, so we have to educate them a little, slow steps.

Ask for an increase and tell him/her you need a TSH of 1 or lower and if he'd also do a Free T4 and Free T3 at the same time. Increases are 25mcg each time until TSH is 1 or lower.

'Normal Range' in blood test results is if we have never been diagnosed at all. Once diagnosed the aim for TSH is 1 or below and FT3 and FT4 towards the top of the range.

thyroiduk.org.uk/tuk/testin...

cmelve1
cmelve1 in reply to shaws

Thank you, they definitely go along the lines of "you're normal, case closed"...but it would be nice to actually feeeeeeeeel normal too! Thanks for your advice :)

TSH doesn't make you feel anything. It's low FT3 that gives you symptoms, and you haven't had that tested.

However, your TSH is much too high for someone taking thyroid hormone replacement. Even 2 is too high! Whoever said it should be around two has never suffered with an under-active thyroid. It should be around 1 or under. Even though TSH doesn't cause symptoms, if it's under 1 then there's a good chance that your FT3 is at the right level to make you feel well. But, even then there's no guarantee. The TSH is a very bad indicator of thyroid status, and should not be used to dose with. Once you are on thyroid hormone replacement, the TSH is not of much use.

Your FT4 is not too bad, but there is room for improvement. So, if I were you, I really would insist on an increase in dose. And, if your doctor won't test the FT3, I would advise you to get it done privately, once your TSH is down to 1 (not much point before). If you get the FT4 and FT3 tested at the same time, it will show you how well you convert. :)

cmelve1
cmelve1 in reply to greygoose

Thank you this is very helpful!

greygoose
greygoose in reply to cmelve1

You're welcome. :)

So...I saw the doctor today. He told me that my levels (prev. posted above) were perfect. But I don't feel perfect!!!!!!!!! He said that must be down to something else... I told him the advice I'd received about TSH being a bit high even though it is within the "normal" range. He said that my case is different as I am on alternating doses therefore my TSH is unreliable or will vary or something. So I asked if he could test T3 but he said this is completely unnecessary. I told him what I really wanted to do was to see if I could feel better with a small increase in my dose, aiming to get my TSH down to around 1. He still insists that my levels are perfect, and said my FT4 was a better indication than my TSH and that was also perfect. He was VERY resistant but in the end agreed to let me try a small increase for a month and see if I feel an improvement. I'm not sure a month is quite long enough to feel a difference but I will be increasing from alternating 75mcg/50mcg to 75mcg every day. This doctor is honestly a really lovely guy and I don't doubt that he is trying to do his best but I feel like he is missing what feels so obvious to me, all of these symptoms I have are the same symptoms I had when I was diagnosed just not to the degree I had them then thankfully. He told me I may be emotional and tired because of depression and to look up some information on that - but if I am depressed I believe that is a symptom of this, not the other way round!? I just want to feel good! But he has a degree in medicine and I do not...

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