High FT4 and Low TSH

[Verbena13]

I am new to this group but have been diagnosed with underactive thyroid for quite some time.

I have been taking levothyroxine for 10+ years titrating up to 200mcg over that time but after bloods last week I have been reduced to 100mcg.

My recent bloods (July) were FT4 31.7 and TSH 0.04. My bloods prior to that (March) were FT4 30.3 and 0.07 which is when they reduced my dose to 175mcg but my results have actually increased for FT4 and lowered for TSH which is why my GP reduced my dose to 100mcg. I have been getting awful palpitations, pressure in head, tremors, dizziness and anxiety - to a point where it has led me to a&e twice with no further progress other than being told i’m anxious / depressed. I’m hoping the lower dose will help, However, i’m still getting palpitations, dizziness and anxiety. I also have low folate which I have been given folic acid for. Every time I ask for a referral to endocrine i’m told no unfortunately.

A bit lost with what to do next but finding looking at posts on this group helpful. Would be good to get advice on how to push for a referral to endocrine?

Thank you

[Jaydee1507 Administrator]

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.

If your GP has reduced you by 75mcgs thats too much at once. Dose increases or decreases should be by 25mcgs maximum as it can be quite. shock to the body and end up with rebound symptoms and completely missing the dose point thats your sweet spot.

Obviously you do need to reduce your dose but I'd recommend going in stages of 25mcgs and testing inbetween.

How do you take your blood tests? Time of day? How long do you leave between last dose of Levo & blood test?

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.

When you finish the folic acid prescription you will need to continue to buy your own supplement otherwise your lelvel willfall back to where it was in the first place.

What were your other vitamin results?

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.

Seeing an Endo can often be disappointing. Most are diabetes specialists and dont have the skills to make us well. Recommend following suggestions from this group re vitamins and getting full blood tests done privately if necessary to show TSH, FT4 & FT3.

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.

[Verbena13 in reply to Jaydee1507]

Thank you, this is really helpful to know.

[greygoose]

Hi Verbena13, welcome to the forum.

First vitally important question: do you have Hashi's? That is to say, have you ever had any antibodies tested?

Those results, to me, do not look like the results of over-medication. If that were the case, you would have noticed your FT4 levels slowly creeping up as your dose was increased. It cannot suddenly jump to those high levels, on the same dose, with no prior warning.

Unless you have Hashi's.

Hashi's is an autoimmune disease where the immune system attacks the thyroid, mistaking it for the enemy, and slowly destroys it. And during those attacks the dying cells release their stock of thyroid hormone - T4 and/or T3 - into the blood, causing levels to rise sharply. The TSH therefore drops.

Unfortunately, doctors know nothing about that (and seem incapable of learning by experience, either!) and tend to have knee-jerk reactions and slash the dose. Which makes things complicated for the future, because those high levels are only temporary. They will eventually come down by themselves and you will become hypo again. And your GP won't have a clue what happened!

Same goes for endos. The majority are diabetes specialists with little to no knowledge of thyroid. But they do tend to have some very weird ideas and make things worse rather than better. So, you're possibly better off without one. Unless you know of one that is clued up on thyroid and recommended by his/her patients.

Did you have any other nutrients tested apart from folate? If not, ask for vit D, vit B12 and ferritin. They could all be equally low.

[Verbena13 in reply to greygoose]

I’m not certain that i’ve ever been tested for antibodies actually, it’s always been FT4 and TSH. My levels have mostly been hypo with gradual increases over time but this time they have shot up into hyper with low TSH and recent medication adjustment did nothing. I haven’t felt myself for around 7 months or so! I will have a look into a private test to see if that will give me more of an understanding and some information to go back to my GP with. Thanks for the info and advice!

Really grateful for coming across this group!

[greygoose in reply to Verbena13]

You're welcome.