age 18 three years post thyroid cancer and total thyroidectomy.

[janedudman]

My daughter takes 125 levothyroxine T3 4.9, T4 23.2, TSH 2.2 she is feeling generally very tired, has started getting persistent acne which she hasn't had before and has very painful periods. Something is clearly not right with her hormone balance. Has anyone got any experience of this? She is currently trying to get an appointment to talk to her consultant as her appointments have fallen off the map with covid and her moving to university.

[shaws Administrator]

Welcome to our forum and am sorry your daughter has hypothyroidism especially being so young,

I am not medically qualified but believe that anyone who has had their thyroid gland removed altogether should be given - at the very least - a combination of T4/T3.

We used to be prescribed the original thyroid hormones 'called NDT i.e.' Natural Dessicated Thyroid Hormones'. NDT is made from animals' glands and contains all of the hormones a healthy gland would do. It was first introduced in 1892 and from then on patients didn't die.

Unfortunately if you're in the UK, the people you'd expect to be more knowledgeable/sympathetic seem to be the opposite nowadays. They've withdrawn T3 and NDT from being prescribed. Maybe your daughter's endocrinologist can prescribe either or a T3/T4 combination. Only endocrinologists can prescribe T3 but the 'organisation' have withdrawn the NDTs without notice and we would expect 'experts' to be knowledgeable/sympathetic but don't appear to be.

T3 - also known as liothyronine - is the 'active thyroid hormone' needed in the millions of T3 receptor cells. T4 also known as levothyroxine is an inactive hormone and should convert to T3 but not everyone does so effectively but might do if dose is gradually increased after the most recent blood test.

This is the method for blood tests - so that the results are more accurate.

It is a fasting test (water can be swallowed). It should be the very earliest appointment, and allow a gap of 24 hours between last dose of thyroid hormones and test and take it afterwards.

Also ask GP to test B12, Vit D, iron, ferritin and folate. Everything should be optimum.

Always get a print-out for her own records and she can post them if she wishes.

Many thousands seem to do fine on levothyroxine when they get to their optimum dose, i.e. they feel well with no clinical symptoms.

[pennyannie]

Hello Jane :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg :

T4 - synthetic Levothyroxine needs to be converted by the body into T3 which is the active hormone that the body runs on, and is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function.

Your conversion of T4 into T3 can be compromised by low vitamins and minerals and so we need to ensure that ferritin, folate, B12 and vitamin D are maintained t optimal levels, and these may well fall inti the NHS ranges as being adequate and not needing a prescription but without a thyroid we need to maintain core strength at optimal levels to help conversion.

The thyroid is a major gland responsible for fully body synchronisation, including the mental, physical, emotional, psychological and spiritual well being, the inner central heating system and the metabolism.

I just think it makes common sense that one replaces like with like, and if nothing else at least a prescription for both T3 and T4 synthetic hormones needs to be sanctioned so that if, and more likely, when both these vital hormones will need to be prescribed.

Ideally we need T3 and T4 balanced in the range and most feel better when both these essential hormones are towards, or in, the top quadrant of the ranges.

Th accepted conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 with most people preferring to come in at around 4 or under.

So to find the conversion ratio you simply divide the T3 into the T4 and I'm getting 4.70 :

Do you have the ranges as I suspect the T4 over range and a dose reduction on the cards :

In theory the higher the T4 the more likely a higher T3 - but it's not necessarily what happens.

logically the solution is to drop a little T4 and add a little T3 to restore well being:

As you will see from the above having " lost her own T3 production " your daughter has in effect been down regulated by about 20% of her overall well being and ultimately the body can't keep compensating and one's overall health will suffer as a result.

Some people can get by on T4 only, some people find that T4 seems to stop working as well as it once did, and some people simply need both these vital hormones dosed and monitored to restore balance and at a high enough level acceptable to the patient.

I'm with Graves Disease and following RAI thyroid ablation became very unwell some 8 years later.

I was refused any other thyroid hormone replacement by my surgery and local hospital and resorted to self medication.

Adding some synthetic T3 - Liothyronine to a slightly lower T4 dose worked for me, as did Natural Desiccated Thyroid which is full spectrum thyroid hormone replacement and am now in my third year on NDT and much improved.

I am indebted to this amazing forum and the support of Thyroid uk who are the charity who support this forum and where you will find a lot more information to equip yourself better to understand all things thyroid.

[SlowDragon Administrator]

Please add ranges on these results

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common on levothyroxine

Ask GP to test vitamin levels or test privately

Acne linked to B12 issues

What vitamin supplements is she currently taking

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)

Is this how your daughter does her tests?

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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 ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[janedudman in reply to SlowDragon]

She is not currently taking any vit supplements and as far as having a set way that she takes her blood tests goes, she just gets the test when she is called for it so there is no attention paid to the timings. We will change that now. Thankyou.

[SlowDragon Administrator in reply to janedudman]

So you/your daughter need to be pro-active

Always get same brand levothyroxine at each prescription (can be time consuming if you don’t have helpful pharmacy)

Levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour after.

No other medications or supplements within 2 hours

No iron, magnesium or vitamin D within 4 hours

Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Many/most patients on levothyroxine will need to supplement to maintain optimal vitamin levels

Test vitamin D twice year when supplementing

Test folate, ferritin and B12 at least annually

Remember to stop taking any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results (eg vitamin B complex )

Come back with new post once she gets results

[SlowDragon Administrator]

Most people when adequately treated will have TSH well below one

Most important results are ALWAYS Ft3, followed by Ft4

Low Ft3 leads to low vitamin levels

Low vitamin levels tend to result in poor conversion of Ft4 to Ft3

Many people after thyroidectomy need addition of small doses of T3 prescribed alongside levothyroxine

But important to get vitamins optimal first and always same brand levothyroxine

Aiming for Ft3 at least 60% through range

[jrbarnes]

Low T3 definitely caused a change in my cycles and acne.

[janedudman in reply to jrbarnes]

Did you rectify it with a change of meds or dosage?

[jrbarnes in reply to janedudman]

I was looking at your daughter's labs and the ranges. They are a lot like mine were and I also had surgery on my thyroid when I was 27 due to a hurthle cell adenoma. I had the same FT4 levels and my FT3 was closer to the low end of the reference range. My TSH was also still elevated. I had to be dosed a little over 24 to be able to function on Levothyroxine and even then my TSH was still over 1. I don't often see people that have an elevated TSH despite having high FT4 levels but I'm one of them. The difference it made for me to go from FT4 of 23 to 24.5 for example is that it brought my FT3 levels from the bottom of the reference range up to 70% in range. Some people might be okay with that but it may not be enough to get rid of lingering hypo symptoms like hoarse voice and coldness, and it wasn't for me but I was young and resilient! I didn't know any better. Some people need larger amounts of thyroid hormone to bring down the TSH but that doesn't always make you feel better. The FT3 levels are the most important and when a person is on Levothyroxine the optimal range is not as wide as these reference ranges are. Very few feel good unless FT3 is towards the top. Since she's already over the top of the range on FT4 you could try to increase the Levothyroxine in tiny amounts and it will be very slow. For example, add an extra 12.5mcg one to two days a week, wait 6 weeks, then test and see if the FT3 is going up. Levothyroxine is a storage hormone so it has to build up and takes a long time. If she doesn't feel better then you may want to look into adding T3(liothyronine) to her Levothyroxine. I'm currently taking T3 only but I took Levothyroxine(T4) for ten years. T3 is the active hormone.

[janedudman in reply to jrbarnes]

Thankyou that is interesting. We will see what the consultant says next week.

[janedudman]

wow thankyou everyone for your replies. Lots to think about and digest here. The ranges that are listed on her blood test results are:

T3 3.90 -7.70

T4 11.0 - 22.0

TSH 0.3 - 4.50

Which I don't understand at all. Is this supposed to be normal for her or just a general figure according to that particular lab? I know her TSH should be very near to 0 because of the cancer so that is a worry that the GP didn't flag it as a concern. Anyway she has left a message with the specialist nurse to have a telephon conversation with her oncologist and endocrinologist and I have urged her to keep pestering until she gets an appointment. I think it would be wise to go for a private test to get everything tested, making sure she sticks to the timings very helpfully outlined here. Taking reponsibility for her own health is just a part of growing up but its quite tough along with everything else that has happened this year for her. I'm just keeping informed so I can answer her questions or prod her to do what is necessary - a fine line to tread with a head strong teenager.

[SlowDragon Administrator in reply to janedudman]

My daughter takes 125 levothyroxine

T3 4.9, (3.90 -7.70)

T4 23.2, (11.0 - 22.0)

TSH 2.2 (0.3 - 4.50)

Was this test done as early as possible in morning

Looks like she took levothyroxine before blood test?

Ft3 is only 27% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Most people when adequately treated will have TSH well below one and ft3 at least 60% through range

First step is to take levothyroxine correctly, always get same brand

Test as advised

Come back with new post once you get results

Likely to need dose increase in levothyroxine and/or improving low vitamin levels

[janedudman in reply to SlowDragon]

She takes her levothyroxine last thing at night, so that doesn't explain it but we will have another test and make sure everything is done properly just in case the testing has had an impact. I can't remember what time the blood test was done. Ongoing will keep in touch.

[SlowDragon Administrator in reply to janedudman]

If she normally takes levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[janedudman]

I think she needs to have some more blood tests and do everything to ensure they are as accurate as they can be first. Then see her oncologist and endocronologist. She has a consultation over the phone at the end of the month when she can flag some f her concerns and hopefully will get some follow up. Thanks Scrumbler.

[janedudman]

Will do. I am encouraging her to join so she can ask her own questions. 🤔

[janedudman]

Thankyou so much. I will imprint this on my retina!

[Hidden]

I have no personal experience of total thyroidectomy (TT) as I have Hashimoto´s, but I have a very good doctor (not in the UK) who, although "only" a GP, seems more knowledgeable than most specialists. That being said, I am not saying your daughter should not be seen by one, only that a GP told me some interesting things. First of all, he said that a TSH above 1.5 should make you suspect something is off about the treatment. For patients with autoimmune hypothyroidism (Hashimoto´s) he wants a TSH between 0.1 and 0.03, and <0.01 in TT patients. He also told me - and this could be interesting for you - that, while he prefers to prescribe levothyroxine only for Hashi patients, a person having had a TT needs both T3 and T4. This doctor is not a fan of NDT so prescribes +/- 100 mcg of levo and 10 mcg of T3 daily to TT patients. Just as a rule of thumb, although some need more and some less, but that equals more or less the total daily output of the thyroid gland.

This may not be of much help to you if in the UK, but what I wanted to say is that some people without a thyroid gland need some T3 in addition to T4 as well. Don´t be afraid to look for doctors who are willing to prescribe T3 if your daughter fails to make a complete recovery even on a higher dose of levo!

[janedudman in reply to Hidden]

Thankyou for your reply. Elsewhere in replies people have said that my daughter's results look like she is not efficiently converting T4 to T3. There seems to be a big gap between what I am told on this forum and through research, and what I am told by my daughter's clinicians. We are trying to get to the bottom of it, there is so much resistance to being questioned from doctors. She has ordered more blood tests an dhas an appointment at the hospital next week, so we will see.

[Hidden in reply to janedudman]

Unfortunately, that seems to be almost always the case when it comes to thyroid disease...that is, most doctors claiming one thing, while patients´ experiences do not at all corroborate their statements. So there seems to be a huge gap (as you so aptly put it) between patients´own experiences and doctors´opinions (based mostly on what they are told to thhink

[Raoudha in reply to Hidden]

Thounsand of thanks I me scheduled for TT and this post is interesting