Scared Newby

[Toryinhampton]

Hi. I’m fairly new to the post and have learned a lot from reading the posts but have confusion regarding my own issues. A few months ago, I had regular labs done and was told my TSH levels were high (19.810) and was started on a low dose of levothyroxine. Over the last 2 months my levels are now TSH 12.030 and my T4 is 1.25. I am up to 100 mgr. of levothyroxine daily. Can someone please explain what is going on and could this be the reason for my exhaustion? Due to Covid, I am doing labs as recommended and communicating with my doctor via email. I am due for a face to face visit in mid September. Any insight would be GREATLY appreciated.

[SeasideSusie Remembering]

Toryinhampton

With a TSH of 19.81 you were clearly hypothyroid (it's diagnosed in the UK when TSH reaches 10) and you should be retested 6-8 weeks after any increase in dose to check your levels.

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

Your TSH is still obviously far too high and you have a long way to go with dose increases to reach your optimal dose. Please ensure that you are regularly tested and have 25mcg increases every time until your symptoms abate and your levels are where they need to be.

Signs and symptoms of hypothyroidism can be found here and I expect you are still experiencing many of them:

thyroiduk.org/signs-symptom...

When posting test results, we also need the reference ranges as these vary from lab to lab. TSH doesn't vary very much so we know how to interpret that, but your T4 we have no idea about, nor do we know if it's Free T4 or Total T4. It's the Free T4 test that is needed, Total T4 is an obsolete test that doesn't tell us anything useful.

[Toryinhampton in reply to SeasideSusie]

Thank you so very much for the information, it’s helped answer many questions. I’m surprised to see just how much of the list I can identify with. Thank you again for taking time out to respond to my post. 😊

[fuchsia-pink]

Welcome to the forum.

When your TSH was 19.8 you were very severely hypo. Now it's "only" 12.03 you are merely extremely hypo. You will feel well when it is lower than 2 - probably lower than 1 - and when your free T4 and free T3 are in the top third of the range.

To see where your free T4 is now, we really need the lab range [these vary from lab to lab]. You can edit your post by clicking on the "more" button on the right.

But you really need full testing doing - TSH, free T4, free T3, thyroid antibodies (if not already done) and key nutrients - ferritin, folate, vit D and B12. The NHS rarely tests enough so you will see lots of posts about private testing.

It's good that they are regularly testing you - and presumably increasing your levo after each result. It's worth getting your results each time [don't allow the GP to fob you off with words like "normal" or "in range" - you are aiming for "optimal" - which isn't necessarily the same. It's where you are in range that matters, not scraping into the very bottom.

Try and get early morning fasting blood tests [your TSH is highest first thing] with a 24 hour gap from your previous dose of levo - and in the meantime, remember to take your levo on an empty stomach, just with water, and don't eat or drink anything else for an hour afterwards or two hours before. It doesn't matter if you take your levo first thing, last thing or split the dose.

Many hypos need to take supplements to keep their nutrients optimal - and you need your nutrients testing as your levo works best when these are good.

Good luck

[Toryinhampton in reply to fuchsia-pink]

Thank you for the info and support. I am overwhelmed with surprise when I see the support being shared. 😊 Thanks again. This gives me a better understanding of what I’m coping with as well as others.

[greygoose]

Your high TSH and - presumably - low FT4 are undoubtedly the reason for your exhaustion. It means that your thyroid - for whatever reason - is no-longer able to make enough thyroid hormone (T4 and T3) to make you well. Therefore, your pituitary is secreting a lot of TSH to stimulate your thyroid to make more hormone, but your thyroid can't respond.

This means that you need to take thyroid hormone replacement for life - thyroids do not regenerate or recover. You are taking levothyroxine, which is T4, the storage hormone. T4 needs to be converted to the active hormone, T3. Eventually, when your TSH comes down to around 1, it would be a good idea to get your FT3 tested. But, at the moment, that's obviously going to be low, so testing would be superfluous. It's low T3 that causes symptoms.

The protocol is to start on a low dose of levo, and slowly increase by 25 mcg every six to eight weeks, until your symptoms are gone and you feel well again. You must insist on your doctor doing that because they're not all very good at treating hypo!

So, when you go for your next test, make sure your appointment for the blood draw is early morning, and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. That way you will get the highest TSH - which is all most doctors look at - and the level of your normal circulating T4.

Did your doctor tell you how to take your levo? On an empty stomach, leaving at least one hour before eating or drinking anything other than water. Leave at least two hours before taking any other medication or supplements.

Not sure if there's anything else you need to know, so if you have any questions, don't hestitate to ask.

[Toryinhampton in reply to greygoose]

You’ve been great and have answered a lot of my questions! I appreciate the time you took to respond to my post. 😊

[greygoose in reply to Toryinhampton]

You're very welcome. If any other questions come to mind, don't hesitate to ask them. That's what we're here for.

[Toryinhampton in reply to greygoose]

😊

[SlowDragon Administrator]

So you need next 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

[Toryinhampton in reply to SlowDragon]

Thank you!! I really appreciate your time and the information you’ve provided! I’ve gotten a lot of feedback and everyone has been kind in sharing their stories and/or information. Thanks again!😊

[SlowDragon Administrator in reply to Toryinhampton]

Come back with new post once you get vitamin results. Members can advise on what needs improving

You need thyroid antibodies tested too

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

[Toryinhampton]

Thank you for your support!