Blood test result help please

[Eimear78]

Hi there

I need a little help with the blood test results attached please. Before I start I am daily on 100mcg of levo and 25 mcg of Turkish Tiromel plus Better You vit d and K spray, Magnesium Malate, selenium and a vit B with foliate complex. All blood tests are done, fasting, in the AM before I take my levo. They haven't done a nutrients panel in a while and don't unless you hound them but I am taking all of the supplements in the world and have been consistently for a while. It was late last year when my antibodies were tested and I had no antibodies then and haven't had any before.

I had an appointment with a replacement endo (mine left after 2 years) at the start of March. I was getting symptoms and we agreed to increase my levo dose from 75mcg to 100mcg and monitor it. I had a blood test mid April (results on the right in bold) and a telephone consultation with the endo and when I asked why my ft4 was towards the bottom of the range he said that the Tiromel could be doing that and we could reduce it (is that a thing?). He also mentioned reducing my levo but I was feeling a bit better although I was getting joint ache and swollen feet. My weight is still a problem and I asked about that and he didn't really have an answer. I know that getting the meds right is really important but I have cleaned my act up with food, I am eating well and walking with short low impact strength training session with a PT.

In between all of this I had a prescription of Accord Northstar which disagreed with me and my symptoms got worse. Tiredness, anxiety, terribly swollen leg, grumpiness off the chart. I have subsequently switched back to Mercury.

I had another blood test 3 weeks ago and got the reading on the left not in bold. My FT4 is the same my T3 has dropped. He sent a letter this time.. no call. To paraphrase he said depending on your symptoms and if you are feeling well you may want to drop your dosage on the weekend or if not you may want to continue as you are. Not helpful. No mention of the FT4 conversation or the change in FT3. To be fair I have led the conversation in the 2 appointments I've had.

So I have a few questions:

My TSH has been suppressed for over a year and has never been a problem but I can't get my FT4 over 16 and have never seen in higher I don't think(ref range 10 to 25). Is this a problem?

My FT3 is artificially inflated because of the Tiromel. I have noticed improvements since I started taking it so I don't want to stop taking it but could this be causing me FT4 a problem?

What does a balanced thyroid blood test look like and how can I achieve it based on where I am now? Do I need to change my medication approach? Can I get NDT somewhere? What is my course of action

Will I ever lose weight or am I destined to stay this way forever? I am trying to reduce my gluten and eat a more Mediterranean diet?

Will my symptoms ease at all?

Am I better off trying to afford going private? Will it work or is it a waste of money?

I have had a NHS endo for 2 years and I feel no further forward. I lead the conversations and recommendations. It was me who said to him in March that we should increase my dose to 100mcg. I feel like I am just in the system. The only boost I've had was T3 and I had to go get that myself. I am frustrated and not feeling great, not losing weight despite doing the right, rattling like a pill box for the tablets I take. I am wondering if it's worth taking the financial hit trying to go private because I am sick of feeling old and frail with poor mobility and edema.

Any thoughts? I would really appreciate it. Sorry for being so gloomy... My endo letter has done my head in a bit.

Thank you.

[fuchsia-pink]

I feel for you. The main reason for sticking with a rubbish endo is to get NHS lio - but you self-source! There's no guarantee that a private endo will be much better, so you might try and get a referral to a different NHS endo who is more knowledgeable/helpful. You can see anyone you want, although obv must be reasonably convenient. I'd get the list of T3-friendly endos from Dionne at Thyroid UK - [e-mail] (there's an off-chance you might get free lio that way ) or ask if anyone can recommend someone near you.

But to answer your questions, I suspect you need MORE medication, to bring up your free T4 and free T3 results. Both of my frees are nice and high (I take lio and levo) and I feel good - so it's possible! It's absolutely not a problem that your free T3 is "artificially" inflated because of T3 meds - that's kind of the point! And I've found it possible to lose weight when both my "frees" were nice and high - but not otherwise. Good luck x

[Eimear78 in reply to fuchsia-pink]

I asked to be referred endo at another hospital in Manchester after seeing her name on the TUK list at the beginning of this 2 years ago but was told I couldn't. Thanks for your advice. I will try again x

[Localhero in reply to Eimear78]

Do they see private patients? If so, you could try to approach them directly.

[Eimear78 in reply to Localhero]

The nearest one in Salford Royal wouldn't see private patients no. He's against private Healthcare I think.

[Localhero in reply to Eimear78]

That's a bummer.

[Eimear78 in reply to Localhero]

There was a great female endo there and she moved on 🙄

[Eimear78 in reply to fuchsia-pink]

fuchsia-pink is your TSH suppressed and your FT3 and FT4 are high?

[fuchsia-pink in reply to Eimear78]

Yes. TSH 0.03 and free T3 and free T4 both towards the top of range - and I feel like I did before I had any thyroid problems. So it's possible

[Eimear78 in reply to fuchsia-pink]

I feel like I need to have a good chat with the endocrinologist. They get quite worried of having a suppressed TSH for a long time don't they?

[fuchsia-pink in reply to Eimear78]

Sadly the vast majority are diabetes specialists who know very very little about thyroid. They also get very confused between suppressed TSH in someone who isn't on thyroid meds (which I understand is not great), and someone whose TSH is suppressed because they are on thyroid meds - and especially lio, which suppresses your TSH in the same way that a heavy downfall of rain makes your garden wet - ie it's a direct and inevitable consequence.

Look at the thumbnail biog of your endo on the hospital website. Does it mention thyroid at all?

As I've said to someone else recently, I use my endo to get lio; I use this forum for expertise and advice

[Eimear78 in reply to fuchsia-pink]

There's nothing on the NHS website under his profile and they haven't updated the consultant details on the hospital website.

[SlowDragon Administrator]

Essential to regularly retest all four vitamins

Please add most recent results and ranges

Strictly gluten free diet does need to be absolutely strictly gluten free to be effective

How do you take your T3?

As single dose or split dose....2 or 3 small doses per day

Thyroid test should be as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before and last half or third of dose of T3 eight to twelve hours before test

Is this how you do test

[Eimear78 in reply to SlowDragon]

That is how I test. I have done since coming on here.

The last vit test I had was 6 months ago I think so I will check my results and get a vitamin test. My previous endo told me to talk the Tiromel at the same time as the levo so I take the tablet whole first thing.

[SlowDragon Administrator in reply to Eimear78]

Many of us find it much better to split the T3 into 2 or 3 doses

Personally I split as follows (20mcg tablet prescribed by NHS)

1/2 tablet 7am

1/4 tablet 3pm

1/4 tablet at 11pm

100mcg levo at 11pm

Always same brand of levothyroxine

We are all individuals and it takes a lot of experimenting to see what works best for you

Even if you normally take T3 as single dose... On day before test it's important to split and take last half or third of T3 dose at 8-12 hours before test

[Eimear78 in reply to SlowDragon]

I will have a play around with the T3 then. I have considered switching to night time meds

[SlowDragon Administrator]

TSH is almost always suppressed on any dose of T3

Do you remember to stop taking any supplement that contains biotin a week before ALL blood tests...eg vitamin B complex

[Eimear78 in reply to SlowDragon]

I checked the vitamin B complex and it has Biotin. I didn't know you had to stop taking it.

Is it true the T3 would lower your FT4?

[SlowDragon Administrator in reply to Eimear78]

So you need to ALWAYS stop taking vitamin B complex a week before ALL blood tests

[Eimear78 in reply to SlowDragon]

What does it do to your blood test?

[SlowDragon Administrator in reply to Eimear78]

Many labs use biotin in their test kits

So biotin supplements can falsely affect any test results

[SlowDragon Administrator in reply to Eimear78]

See my last reply in this post

healthunlocked.com/thyroidu...

Gives links about biotin

[Gingernut44]

Did you leave 24 hours from your last Levo and T3, if so, your FT3 result will show a false low.

[Eimear78 in reply to Gingernut44]

It was 24 hours. I take my meds at 6.45am when I wake up and had my blood test at 8.40am the following day.

[Gingernut44]

To get a true picture you need to leave 24 hours for Levo and 8-12 hours for Lio even if it means splitting your dose the day before your blood tests

[Eimear78 in reply to Gingernut44]

Yes. I definitely don't take either of those at least 24 hours before at the moment and will remember that if I split or move my dose

[humanbean]

One point to bear in mind...

Levo has a long half-life i.e. if you took a dose today you'd still have half of it in your body in a week's time.

T3 has a short half-life (I can never remember what it is, sorry).

People can alter their doses of Levo throughout the week e.g. alternate 100mcg/125mcg and do perfectly well on that.

But T3 can't be alternated - they should take the same dose(s) every day at the same time(s). Unfortunately some doctors don't know that and they think they can dose T3 the same way Levo is dosed - but it just doesn't work like that.

[Eimear78 in reply to humanbean]

When I asked my original Endo how to take T3 he didn't really know.

[humanbean in reply to Eimear78]

People have to experiment to find out how to get the best out of any T3 they take. There is no universal "best" method.

You'll find some people who take it in one dose with Levo in the morning. Some take it alone. Some split it into two or three doses, or occasionally they divide it into more doses. But since food and drink will interfere with absorption of thyroid meds of any kind life becomes very difficult the more doses T3 is split into.

Some people take their entire dose of T3 at bedtime, some people find they do well with just a small crumb and take the rest earlier in the day.

It's really up to you to experiment for yourself. Don't alter the total amount of T3 just experiment with the number of doses and the size of doses.

The worst that might happen while you experiment is that your heart rate may rise a lot - but since T3 doesn't stay in the bloodstream for long you would only have to put up with it for a few hours. Another possibility is that you end up with insomnia. If either of those things happen you would have to change your plan for dosing.

In the event that T3 does cause a problem temporarily, just don't take any more until your heart rate has subsided back to normal and has stayed normal for a few hours.

Doctors are terrified of T3 and often manage to pass on that terror to their patients.

The MHRA holds information on adverse drug reactions going back to 1967, although the majority of their information on liothyronine is from 2000 onwards. Between 1967 and 2020 there hasn't been a single death attributed to liothyronine (T3).

[Eimear78 in reply to humanbean]

The problem it seems is that the docs and endos have minimal knowledge of what they should have.

[Eimear78]

Plan of action.

Email endo today to say I want to tackle the low FT4 because my bloods are still not optimal and I want to do that by increasing my levo.

I will get my nutrients tested in the interim and stop taking the b complex for a bit while I wait for the test

If he says no they I will start making a fuss with my GP to see if I can get referred elsewhere.

If he says no I will write a letter of complaint and go private/consider a Functional approach

Why the chuff is this so hard???