Endo nurse says I must take levo before my tests!!!

[Flecmac]

I have seen another Endo who has increased my levo to 75mcg. I’m travelling a long way each time. I’m having next bloods done next month and a sanachthen test with the Endo nurse. I had to call to confirm my attendance and to check that I can have all bloods done at the same time. She said yes then she told me to make sure I took my levo as normal in morning. I explained that I have not been taking it before bloods since I discovered on here not to take before bloods in Sept 2017. She repeated that it’s VERY important to take it so they know if the dose is working or something. Doctors have never said anything like this. I do not know what to do. Please advise. Thanks for your help.

[diogenes Remembering]

The advice is nonsense as regards FT4 tests. Taking T4 just before a blood test will raise your FT4 by about 10-15%. Won't change anything else much though, so if diagnosis is being done by TSH only, this won't be affceted so long as it is tested first thing in the morning. Best to take T4 last thing on the previous night.

[Flecmac in reply to diogenes]

Thank you. Endo does look at all TFT results, my T3 is a bit low. I always thought from advice here that not taking dose until after test was the right thing to do. I am desperate to get this right and for them to be able to help me. This has been a very long 15 year journey with GP only allowing 25mcg 10 years ago, then stopping. After being very ill she allowed it again but said she couldn’t increase without an Endo’s day so. I’m on my third Endo, who is better than the others but is still bound by nhs rules, so feel lucky to have got this far. He is also looking at adrenal function as cortisol is low. I’ve looked into this and found that Levo should not be given until Adrenal function has been addressed. It’s all so confusing, I just don’t know what to do anymore. Thanks again.

[shaws Administrator in reply to Flecmac]

diogenes is a researcher and knows very well about thyroid hormones.

It's a pity more doctor or endocrinologists don't. I think it is guesswork on the part of many and especially nurses who aren't qualified - never mind the endocrinologists.

You don't have to say when you took your dose but I'd follow the forum's suggestion and allow a 24 hour gap between last dose and blood test and take afterwards.

Once upon a time we used to be diagnosed and prescribed according to our clinical symptoms - now, in its place, is blood test results alone. I doubt the professionals are aware that an early a.m. TSH will be different to a later TSH result.

One doctor I know believes that our adrenals should be helped before being prescribed, yet another who didn't agree and said they'd sort themselves out when we begin to take hormone replacements..

[Flecmac in reply to shaws]

Thanks both of you. I appreciate your help. It’s strange that for the FIRST time this Endo and Endo nurse AGREE that bloods should be done first thing and fasting, so it’s puzzling that nurse has said this. It’s been positive so far. I will take it after the bloods as before because I fear they will reduce again. I’m a bit worried about adrenals though as if this should be sorted first and taking Levo without this can be problematic then this could be why I’ve suffered xx

[shaws Administrator in reply to Flecmac]

It is amazing what the professionals don't know about hypothyroidism. Many just think a TSH and T4 blood test is sufficient: are completely ignorant about clinical symptoms and the patient remains unwell.

[Flecmac in reply to shaws]

Yes it is. I am hoping that with this one I may get a little further and at least get all tests done free, although I’m very aware that the guidelines will be followed at some point and I will be stuck.

Thanks xx

[shaws Administrator in reply to Flecmac]

The fact, too, is that they may only look at the TSH result alone and if it is 'somewhere' in the range which is up to 10 in the UK and it reaches anywhere within this they don't increase our dose. Some doctors will increase but are happy to stop when it reaches the 'top' of the range which is around 5. They do not know any of the clinical symptoms either which used to be how we were diagnosed and prescribed NDT on a trial basis. If we improved we were hypo and continued on Natural Dessicated Thyroid hormones.

TSH means 'thyroid stimulating hormone' and it is from the Pituitary Gland which goes into action when we aren't producing sufficient thyroid hormones by trying to increase the thyroid hormones. If we take dose before the blood tests the TSH will be higher than if we take dose after test.

thyroiduk.org.uk/tuk/thyroi...

The aim is for the TSH to reach 1 or lower and a Free T3 and Free T4 in the upper part of the ranges.

It is a pity that most doctors seem to do a half-hour study to cover hypothyroidism as they know little and so many of their patients suffer but are then prescribed additional meds to try to reduce disabling symptoms but they remain symptomatic.

thyroiduk.org.uk/tuk/about_...

hormonerestoration.com/

[Flecmac in reply to shaws]

Forgive me if I’m mistaken but I thought I understood from this forum that by NOT taking levo before a test ensured a higher TSH result, thus assisting with securing an increase, rather than the other way around?

[MaisieGray in reply to Flecmac]

There is no right way of doing it, or more accurately, no one right way of doing it. If the purpose of testing was to identify what is the effect of taking Levo on blood hormone levels within 30 minutes of taking it, then the right way to test would be 30 minutes after ingesting the Levo; if the purpose was to identify the blood level of hormones 30 minutes before the next dose was due, then the right way would be to test 30 minutes before the next dose is due. If they want to know if the Levo "is working" they only have to ask how you feel since starting Levo and if your symptoms have abated! Of course Levo works, in so far as it will have an effect on blood hormone levels, but no routine thyroid test they do, will show its absorption into the cells ie "it working" (there is a different non-thyroid test which allows for an assumption to be made, but it's unlikely you will be tested for that). However, it is a nonsense to tell you to take your Levo "as normal" for a practical reason as well as that mentioned by diogenes; because our "normals" are specific to each individual - some take tablets in the morning, some in the evening or at night time, some in a single dose, some split; some take them exactly at the same time each day, some aim only for a ball park time. For instance I take mine roughly between midnight and 3am, but take my T3 late-morning onwards. The nurse seems to have no concept of that, and unless some powerful algorithm is being used to adjust and standardise the amount taken, time taken, frequency taken, and ditto for any T3 also taken, it's a nonsense. If you take your Levo immediately-ish before the blood draw, as diogenes says, your FT4 will be elevated to some degree, and that may impact on your Endo's dosage decisions, which may not be advantageous to you. Hence why it's advised in patient fora, not to do that. But the decision how to play it, must be yours.

If the experience reported in patient fora is anything to go by, the routine testing of adrenal function before prescribing Levothyroxine is not very common. I'd been taking Levo for 35yrs or so, before mine was tested (although to be fair, I don't know when the short synacthen test was devised).

[Flecmac in reply to MaisieGray]

Thank you. If I did take it (around 5am) my T4 would go up a little, but would my T3 go up too? x

[shaws Administrator in reply to Flecmac]

I think you have a case of complaining about your GP, i.e. being on 25mcg of levo for ten years then withdrawing it and not switching to another hormone replacement.

I am mystified when a doctor - who is well aware that hypothyroidism is a life-time disease - and then gives the lowest possible dose then after years withdraws it altogether.

Don't worry too much about adrenals as I've read that it should also be treated whilst another states that when on hormone replacements it will rectify itself.

However you should have sufficient thyroid hormones to bring your TSH to 1 or lower with a Free T4 and Free T3 in the upper part of the ranges (that's the aim).

Few doctors will test the latter two but you can get them privately through one of the private Labs that do home finger pin-prick blood draw. If you decide to do so, make sure you are well hydrated a couple of days before.

[Flecmac in reply to shaws]

The problem has always been that the other doctors are worse!! She is actually the only one who agreed to put me on levo at all! But she’s not allowed to test TSH (only) more than once a year!! I know also that other surgeries in my area are the same or worse, it’s the whole jobs worth ‘I have to follow the guidelines’ scenario I’m afraid. Endos no better even some private ones! She’s happy to follow an Endo, but finding one who will increase has been a challenge. This one is better so far, and is doing lots of tests on nhs which is a help. On 50 TSH was 1.0 (0.5-4.4) and that was on 50 mcg. T3 5.1 (3.5-6.5) T4 15.9 (10-20) locally.

Last test at new endo still on 50 was TSH 1.63 (0.27-4.20), FT4 17.5 (9.0-26.0), FT3 3.4 (2.8-7.1).

I am now on 75mcg.

I have been gluten free for 15 months and my TPO antibodies have dropped from 1300 to 525.

[shaws Administrator in reply to Flecmac]

The fact that your FT3 is not nearer 7 would mean you don't have sufficient Active Thyroid Hormone in your body to enable the T3 receptor cells to be saturated and it is T3 that enables our whole body to function - the brain and heart need the most.

T4 is inactive and it has to convert to the Active T3. You need T3 to be added to your dose of levo but if you're in the UK, it has risen in price so high that NHS have withdrawn it even for those who've been on it for years and this decision caused a crisis amongst patients.

You could access your own T3 and I realise many are nervous of this. I was also nervous but there's no denying the addition of some T3 to T4 was amazing for me. I now take T3 alone.

There was an Adviser to TUK (he died through an accident) and he himself took 150mcg of T3 daily due to being thyroid hormone resistant. He would not have been able to function if he didn't have that dose.

He was incensed that the BTA made statements about NDT which were untrue, so that they could get it removed from being prescribed. Many on this forum who source their NDT (natural dessicated thyroid hormones - made from animals' thyroid glands) have recovered their lives. NDT was the very original thyroid hormone replacement also used to be prescribed as an alternative to those not recovering on levo.

Those who added some T3 to their T4 or took T3 alone also recovered and symptoms relieved. This is a an excerpt from the following link:-

"While most people do well on the standard treatment of levothyroxine, some people still have hypothyroid symptoms and/or low T3 levels while taking it, even though their TSH levels are within normal limits. Scientists don't understand exactly why this is, but it could be due to problems with the way the pituitary gland, thyroid, and hypothalamus—all of which work together to stimulate thyroid hormone production—communicate with each other.

If you're currently taking levothyroxine (brand names include Synthroid, Levoxyl, Unithroid, and Tirosint) and you're still not feeling well, you may benefit from adding liothyronine (synthetic T3) or switching to DTE.

verywellhealth.com/armour-t...

Some endocrinologists and doctors seem to believe that a synthetic thyroid hormone replacement (levo) will be sufficient for hypothyroid patients to be well but that's not always the case.

[Flecmac in reply to shaws]

Many thanks. So wouldn’t another increase make any difference to my T3?

[shaws Administrator in reply to Flecmac]

It depends upon how we convert levo i.e. effectively into T3.

Levo is an inactive thyroid hormone and it has to convert to T3. Some of us have no problem and wont be on this forum but with levo being an inactive hormone, if it doesn't convert to enough T3 we will be symptomatic. We are all different so one dose which suits another, might not make us well.

[MissGrace]

I personally wouldn’t take it until after the blood test if they are testing T4 and you feel you might want to increase your dose. It will increase the T4 reading temporarily as it enters the bloodstream if you take it in the morning and your blood test is in the morning. 🤸🏿‍♀️

[Flecmac in reply to MissGrace]

Thank you x