Recent thyroid review, help

[Annienixo]

Hi on 75mcg of levy for past two years just had test and tsh 7.7 t4 10..6 t3 3.6 cortisol at 10am 240 they want to increase levy to 100 does that make sense? I think I need t3 but I’m not a doctor. Also going to have short synacthen test to check adrenal glands. Any comments? Anyone had similar?

[fuchsia-pink]

Can you add the reference ranges for the free T4 and free T3 please? - these vary from lab to lab so we need your specific ranges to see where you are in range. This will help us see if you do need T3 meds. You can edit your post using the "more" button on the right. Did you have an early morning, fasting blood test and leave 24 hours from your previous levo?

It's clear, though, that your TSH is much too high - you must feel dreadful - so you need another 25 mcg of levo and re-test after 8 weeks. It would also be worth testing your key nutrients - ferritin, folate, vit D and B12 - as your levo works best when these are nice and high. You also need to ensure (if not already doing it) that you take your levo on an empty stomach, just with water, at least 2 hours after /1 hour before other food and drink and away from any non-spray supplements

[Annienixo in reply to fuchsia-pink]

Yes it was after eating nothing and I didn’t take my medication before the test. I take it on empty stomach each morning and have nothing for at least an hour, I haven’t got the ranges as it was a consultant appointment on phone because of covid measures. I’m more interested in the t3 and cortizol do you know much about that?

[fuchsia-pink in reply to Annienixo]

I don't know about cortisol. Re the T3, this is why we need the blood ranges, so see if you can get them from the consultant or his/er sec. What you are looking for is for these to be in balance - even if they're both rubbish. Then you add more levo until they (both) rise. If your free T4 is much higher in range than your free T3, it is an indication that you are likely to benefit from adding in some lio.

I suspect both of your frees are currently rubbish, and as I said before, your TSH is much too high, so hopefully you will feel better just with more levo - it's certainly MUCH easier for you if all you need is (enough) levo

[SeasideSusie Remembering]

Annienixo

Yes it makes sense.

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.

Even though you haven't include the reference ranges (please always do so when posting test results as ranges vary from lab to lab), we know that your TSH is far too high and you need an increase in your Levo to bring TSH down to around 1.

From your previous post we know that you have Hashi's and SlowDragon gave you some links about Hashi's. Fluctuations in test results and symptoms are common with Hashi's. Here are some more links:

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

I think I need t3 but I’m not a doctor.

You can't know if you need T3 until your TSH is 1 or below to give you the highest possible FT4, then you can see what your FT3 is like (from the same blood draw), that will tell you how well, or not, you convert T4 to T3 and whether you would benefit from the addition T3.

Also, before adding T3 we need optimal nutrient levels.

SlowDragon previously pointed out that it's important to test:

Vit D

B12

Folate

Ferritin

So for now, take the increase in your dose of Levo, repeat tests in 6-8 weeks, post all new test results (with reference ranges) like this example (one test per line makes it easier to read):

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

FT3: 4.5 (3.1-6.8)

Plus vitamins

[Annienixo in reply to SeasideSusie]

I didn’t get the ranges as it was done on the phone with the consultant. I’ve not had a diagnosis from an endo of hashimotos but will try gluten free and see if it helps. They wouldn’t test vit d iron etc as it was normal last time it took a lot of persuading to get them to do t4 and t3! Interesting what you say about t3 though but my tsh has never yet been that low And wondered if keep upping t4 was the answer to it?? Any comment regarding Cortisol?

[SeasideSusie Remembering in reply to Annienixo]

Annienixo

I’ve not had a diagnosis from an endo of hashimotos but will try gluten free and see if it helps.

Doctors in the UK don't call it Hashimoto's, they call it Autoimmune Thyroiditis.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms, but you know from SlowDragon's reply to your previous post that those Medichecks results clearly showed Hashimoto's. Hashi's is not treated, it's the resulting hypothyroidism that's treated. And because of the fluctuations that Hashi's causes then adjustment of dose of Levo is appropriate at times, eg if going through a "hyper" phase you lower your dose of Levo, when things settle down and more Levo is needed your raise your dose of Levo again. However, it's important not to have your prescription lowered because it may be difficult to get the original dose prescribed again. Probably best to listen to your body, learn when dose needs adjusting and just do it yourself.

They wouldn’t test vit d iron etc as it was normal last time

"Normal" only means one thing - somewhere within range. But it's where within range that matters. Do you have those results from last time? Low levels are very common when Hashi's is present. If necessary, test them privately.

Interesting what you say about t3 though but my tsh has never yet been that low And wondered if keep upping t4 was the answer to it??

You need enough Levo to bring TSH right down. See article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

You can also refer your doctor to NHS Leeds Teaching Hospitals who say:

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

[Annienixo in reply to SeasideSusie]

No mention of lowering in my post I was just checking it was right thing to do to up it as the consultant suggests! I will ask for vit d check when I go in 6 weeks, I don’t know the results from before except the consultant said it was normal

[SeasideSusie Remembering in reply to Annienixo]

Annienixo

No mention of lowering in my post I was just checking it was right thing to do to up it as the consultant suggests!

I didn't suggest there was??? I was just explaining that if you go through a "hyper" phase of Hashi's then it makes sense to lower the dose, then increase it again when the hyper phase is over. That's the way it works with Hashi's.

they want to increase levy to 100 does that make sense?

I did say that I agreed the increase in dose made sense because of your high TSH and that means that at the moment you are in a rather hypo phase so increasing your Levo will bring your TSH down.

[Annienixo in reply to SeasideSusie]

Great thanks I misinterpreted this comment ‘However, it's important not to have your prescription lowered because it may be difficult to get the original dose prescribed again’ I hadn’t considered lowering it

[SeasideSusie Remembering in reply to Annienixo]

Annieixo

That's just to warn you that if you see your GP when you are going through a hyper phase he will likely tell you to lower your dose and he may very well alter your prescription, if he does lower your prescription it can be very difficult to get it raised back to it's original amount, simply because they don't understand the ups and downs of Hashi's. So, as I say, listen to your body and you'll know if you're in a hyper phase so just adjust the dose yourself if and when necessary. Resist any attempt to lower your prescription.

[Annienixo in reply to SeasideSusie]

I’ve never felt hyper in at least two years

[SlowDragon Administrator]

Yes you definitely need dose increase in levothyroxine up to 100mcg and bloods retested in 6-8 weeks

If your endo/gp won’t test vitamins you need to test yourself

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks JUST vitamin testing

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service )

monitormyhealth.org.uk/thyr...

The aim of levothyroxine is to increase dose slowly upwards until TSH is under 2

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[Annienixo in reply to SlowDragon]

They did tsh and ft4 ft3 last time will up levy to 100 and ask for vit d Too next time in 6 weeks, What else?

[SlowDragon Administrator in reply to Annienixo]

Vit D

B12

Folate

Ferritin

So for now, take the increase in your dose of Levo, repeat tests in 6-8 weeks, post all new test results (with reference ranges)

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)

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[Annienixo]

Yeah I have always had tests like that (eg early and noThing to eat taken levy after etc) I have same brand all time, not heard of them in uk will do that. Didn’t have ranged because consultations still over phone here