Request for levo increase

[Fran_scarbs]

Hi there. My friend has been on levo for a number of years after having a tumour on her thyroid removed. She’s got a history of depression (although this has been a more recent thing) and is always very tired, recently having days in bed with no energy. She is only on 50mg levo a day, so I have been pushing her to get her bloods checked as I’m on 100mg and we’re similar weight etc. (I’ve had an under active thyroid since I had my baby a couple of years ago). I know I feel ‘normal’ now as my TSH is around 1/1.5 and I’ve read on this forum that around 1 is usually where people feel better. I also know it’s better to get full tests etc, but anyway she’s got her TSH results back and it’s 4.4. I’ve told her to ask for an increase to her levo but as hers is caused by the thyroidectomy should she still ideally get her TSH to around 1? I didn’t know if it was different in this case? I’m really hoping this could help her depression and lethargy. Thanks in advance.

[helvella Administrator Thyroid UK]

As you'll know, most of us don't like to hang everything on a TSH number. But, broadly, you are right regarding somewhere around 1, or possibly lower, usually being where people feel best.

And it makes little difference whether they have a thyroid or not. (Though, as a partially functioning organ, a thyroid can convert some T4 into T3, so it is not an exactly equivalent situation.)

[Fran_scarbs in reply to helvella]

Thank you. She had no clue about the numbers or anything as they always just tell her that her bloods are ok. I’ve been thinking for a while could this be contributing to how she feels mentally as well…hopefully it’s a step in the right direction.

[Anthea55]

It certainly sounds as if your friend needs an increase in her meds. 50mg is a very low dose. Lack of energy and depression are among the many symptoms of hypothyroidism.

She can get bloods done by her GP, but those results will show her current TSH, but probably won't include FreeT4 and Free T3. TSH may be useful for diagnosing in the first place, but after that we need to know Free T4 and Free T3 to get a better picture of thyroid hormones.

Suggest that she gets private bloods done, then she (or you) can post them on here for people to comment.

[Fran_scarbs]

Will do, thank you for your help.

[helvella Administrator Thyroid UK in reply to Fran_scarbs]

You meant to reply to Anthea55 - but actually replied to your own post! Called out so she'll see.

[SlowDragon Administrator]

Ask her to consider joining the forum herself

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Unfortunately often all GP tests is TSH

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near her, or private nurse to her own home…..for an extra fee

[pennyannie]

Hello Fran-scarbs :

If your friend has had a thyroidectomy the TSH is an unreliable measure of health and well being -

the TSH thyroid function test relies on the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop working well - but without a thyroid in situ this feedback loop is broken and not a closed complete circuit and can't be relied upon.

It is essential that she should be dosed and monitored on her Free t3 and Free T4 readings with a view to have these two vital thyroid hormones balanced in the ranges at around a 1/4 ratio - T3/T4.

We generally feel best when the T4 is in the top quadrant as this should convert to a decent level of T3 tracking slightly behind at around 60/70% through it's range.

I fully understand and appreciate that in primary care she may only be getting a yearly TSH reading with an occasional T4 reading thrown in - but it is not enough - and it's obvious to you that her health and well being are compromised and it is not the case that she needs anti depressants - most doctor's fall back prescription - when their options to treat are with only T4 - Levothyroxine.

The thyroid is a major gland responsible for full body synchronisation including one's physical, mental, emotional, psychological and spiritual wellbeing - one' inner central heating system and one's metabolism.

A fully functioning working thyroid would be supporting you daily with trace element of T1. 2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Some people can get by on T4 only - Levothyroxine.

Some people find that T4 seems not to work as well as it once did and find by adding in a little T3 - likely replacing that little bit they lost when they lost their thyroid - they can restore T3/T4 hormonal balance.

Some people can't tolerate T4 and need to take T4 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

I hope this helps - but at the end of the day your friend needs to start reading up and understanding all this for herself - and that can be difficult if she has the horrible disabling brain fog - but no one can do it for her - just encourage her to read these messages and register with Thyroid UK - the charity who supports this forum - and hopefully she will write of her own thyroid journey - which is cathartic in itself - and we can offer the support to help her improve her thyroid health and well being.

[Fran_scarbs in reply to pennyannie]

Thanks so much, really useful info. I think they’ve left half her thyroid gland and took the rest away. So not sure how much difference this makes but I’m encouraging her to speak to her GP and have the full thyroid tests even if she has to pay for them. And will certainly be telling her to join this forum and register with thyroid UK. Thanks again, her mental health has been so debilitating these last few years I really hope addressing her thyroid better can help. Terrible they’ve been just giving her various antidepressants when her TSH has been above 4 (she thinks it was definitely this last year too but she was told that was fine).

[pennyannie in reply to Fran_scarbs]

I know - been there - but now self medicate and have my life back and why I write on here giving back where I think I can help someone else.

Irrespective of it having been a full or part thyroidectomy - the same applies - good luck :

[Litatamon in reply to Fran_scarbs]

Make sure her b12 is checked. And have her get an actual number, just not 'in range'.

[SlowDragon Administrator]

Please consider signing this petition for much needed funding for helping to get better testing, treatment and understanding of thyroid disease

healthunlocked.com/thyroidu...

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