My latest results- any ideas? Sheehan’s Syndrome? - Thyroid UK

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My latest results- any ideas? Sheehan’s Syndrome?

Ginny52 profile image
26 Replies

Ft3 5.2 pmol/L Range 2.4-6 pmol/L

Ft4. 14.6 pmol/L Range 9-23 pmol/L

Tsh <0.01 mU/L

A different hospital kindly did some bloods for me for unrelated reasons and tree in thyroids, so I’ll have them with me when I go to the endocrinologist next week. Do people think it’s reasonable (or sensible) to ask for a dose increase?

I’m only taking 50 mcgs of levothyroxine at the moment and pretty sleepy.

The endo has never really committed himself as to whether my lack of tsh is due to pituitary insufficiency (Sheehan’s Syndrome) or suppression by incipient hyperthyroidism as the previous hospital would have it. I spent 9 months without treatment and developed the headache from hell but still made no tsh. My pituitary is almost normal on MRI, just a bit puffy, definitely not empty sella. The endo is very nice and always says he treats by symptoms rather than numbers- I hope so! The GP however is conceited about her endocrinologist abilities and has no qualms about making me ill. She has refused to prescribe the levothyroxine the consultant asked for several times.

Thank you all very much ❤️

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Ginny52 profile image
Ginny52
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26 Replies
annabianca profile image
annabianca

Are you very slim, like under 8 stones?

The guidelines for central hypothyroidism are based on the FT4 value alone. I have seen reference to over the 50-66-75% of the reference range. You are not at this point yet, so you (well, your doctor) should increase your dose.

In theory a full replacement dose (1.6-1.8 mcg/kg of body weight) shouldn't be dangerous, unless you have hyperthyroidism and your thyroid is making large amounts of hormones on its own.

From your post history it seems that at some point you were overmedicated. Was you dose at that time greater than a full replacement dose?

Ginny52 profile image
Ginny52 in reply toannabianca

I am pretty thin, just over 8 but tall. I had some odd blips last year when my t4 which had always been about 10-12 untreated suddenly had a couple of isolated surges, once to 31, but it seems to have settled down again now. I had previously been stable on 75mcg for some years. Thanks!

annabianca profile image
annabianca in reply toGinny52

Your theoretical full replacement dose is 80-90 mcg, so you could even go a little higher than that. The average doses you see around do not usually apply to very slim people.

Your FT3 may seem high, but if your physiological level is high and your body is able to convert it from the levothyroxine I can't see a problem.

The Pituitary Foundation (pituitary.org.uk), which is sort of NHS approved and aligned, has this article on the management of central hypothyroidism pituitary.org.uk/news/2017/.... The also have a brief article about Sheehan's syndrome, but it doesn't say much.

Have you managed to get a full assessment of your pituitary function? If you have other untreated pituitary issues, no amount of thyroid hormones is going to make you feel well.

Ginny52 profile image
Ginny52 in reply toannabianca

I’m very lucky, my endo is pretty onboard and has done everything he can so far- my hgh is apparently fine and so is my cortisol], it’s just no tsh.This thing with disproportionately high t3 is just this last year and I kind of feel it must mean something but I don’t know what! I had no idea my body could do that! ❤️

SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested for autoimmune thyroid disease at any time?

FT4: 14.6 pmol/l (Range 9 - 23) 40.00%

Low Ft4 suggests that you are under medicated

Request 25mcg dose increase in levothyroxine and retest in 6-8 weeks

Meanwhile test vitamins

Ginny52 profile image
Ginny52 in reply toSlowDragon

This was a recent random test when I went to A&E about something else. They were lovely and did lots of bloods, although not vitamins.No, I’ve always been antibody negative. One of my results suggested low b12- I’ll go back and check. This was odd because I’d been taking a supplement- maybe I could have been worse!

Endo always says he’s aiming for upper range so that is most reassuring- he’ll raise it, I hope.

❤️

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

Essential to test vitamin D folate, B12 and ferritin

When not on high enough dose levothyroxine then vitamin levels likely to be low. This is because we develop low stomach acid, leads to poor nutrient absorption and low vitamin levels as direct result

Frequently necessary to supplement vitamin D and vitamin B complex virtually continuously to maintain optimal vitamin levels

Test before starting any supplements

Ginny52 profile image
Ginny52 in reply toSlowDragon

How do you get them tested?

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

Thousands of U.K. patients forced to test privately to make progress

Test full thyroid and vitamins at least once a year

Vitamin D twice year when supplementing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Low vitamin levels are extremely common, especially if under medicated

Recommended on here that all thyroid blood tests early morning, ideally before 9am

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...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Examples of test results

Medichecks

healthunlocked.com/search/p...

Blue horizon

healthunlocked.com/search/p...

Ginny52 profile image
Ginny52 in reply toSlowDragon

Thank you slow dragon!Can you direct me to that calculator I saw once to work out where in range my numbers appear?

❤️

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

Here it is

Calculator in English Made by husband of one of our members…..very useful it is too

thyroid.dopiaza.org

FT4: 14.6 pmol/l (Range 9 - 23)

Ft4 only 40.00% through range

FT3: 5.2 pmol/l (Range 2.4 - 6)

Ft3 high at 77.78% through range

These are typical results of someone taking levothyroxine plus T3……not someone on levothyroxine only

Ginny52 profile image
Ginny52 in reply toSlowDragon

🌹splendid! Thank you x

Ginny52 profile image
Ginny52 in reply toSlowDragon

It is very elegant!

Ginny52 profile image
Ginny52 in reply toSlowDragon

About your comment regarding additional t3- yes, that’s what I thought too, but I did this by myself with no additional synthetic t3. What do you think it means? These results have been the same, with disproportionately high t3, for about a year now. Thank you very much for your help

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

Well it could be that you may still have very low iron/ferritin…..or other vitamins

Or possibly a “hot nodule”

That might explain low TSH

Hot nodule makes thyroid hormones regardless of TSH

Have you had ultrasound scan of thyroid?

Ginny52 profile image
Ginny52 in reply toSlowDragon

Yes- I certainly have nodules. Very roughly, what happened was, last spring I was quite stable on 75mcg, and then at a routine endo appointment my t4 was slightly high and the endo I saw, not my usual one, reduced it to 50. Then my levels became surprisingly volatile and deranged, t4 up to 31 at one point and down to 11 a few weeks later. I stopped treatment altogether so that they could do tests including another technetium scan and it became evident that my tsh wasn’t suppressed by thyroxine because it never rose above 0.01.I had my second scan which showed some nodules but I think there were fewer than in the scan done by a previous hospital. They were very noncommittal about the productivity of these nodules.

I read somewhere, I think Wikipedia description of de Quervain’s, that these nodules could degrade and produce surges. Anyway, I managed without levothyroxine until November when I became more and more ill and developed a constant headache, so restarted at 50mcg. Now my t4 seems to be declining but t3 still disproportionately high, so I’m not sure whether a rise is appropriate or not. I didn’t know until annamaria told me above that only t4 values are given for central hypothyroidism x

SlowDragon profile image
SlowDragonAdministrator in reply toGinny52

We regularly see instability in levels starting after an inappropriate dose reduction in levothyroxine

Vitamin levels drop when dose is reduced….cortisol levels often affected too ….it takes months to restablise

If you had needed a dose reduction…..reducing by 1/3rd of your daily dose was ridiculous

Reducing by 12.5mcg to 67.5mcg 2 or 3 times a week might have been more appropriate…..if it was actually necessary at all

Only over medicated if Ft3 is over range

Ginny52 profile image
Ginny52 in reply toSlowDragon

I’m going to approach the mess that is my desk in a little while, and I’ll give you some numbers from the time.I was not pleased when completely destabilised!

humanbean profile image
humanbean

Why do you think you have Sheehan's Syndrome?

en.wikipedia.org/wiki/Sheeh...

Did you lose huge amounts of blood during childbirth?

I have sometimes thought that accident victims or victims of surgical problems or people who are attacked, stabbed or shot could develop Sheehan's but it never gets mentioned.

Ginny52 profile image
Ginny52 in reply tohumanbean

Mine was obstetric disaster- couldn’t get an ambulance during miscarriage, lost several litres of blood, hospital somehow discharged me with Hb of 6 and it was nearly 2 weeks before they noticed and called me back for transfusions- all fun!I think your pituitary is only vulnerable during pregnancy because it swells up a lot, and suddenly loss of blood pressure during birth or miscarriage can cause damage to the cells that produce pituitary hormones.

humanbean profile image
humanbean in reply toGinny52

Thanks for the explanation.

So why are doctors ignoring the Sheehan's issue?

Ginny52 profile image
Ginny52 in reply tohumanbean

Doctors tend to hugely underestimate the proportion of their interventions that go badly for the patients, in my experience. It’s still usual for texts about Sheehan’s to say that it’s rare in developed countries, but it’s certainly not that rare to haemorrhage badly during childbirth, and I’ve seen contrary texts that estimate the chances of sustaining pituitary damage from such an event as 1 in 5, so they can’t both be right! I’ve also noticed that doctors are loath to criticise one another’s efforts, possibly for legal reasons.

radd profile image
radd in reply toGinny52

Ginny52,

Have you had other hormones tested that are released from the anterior part of the pituitary gland? If TSH is low due to Sheehans Syndrome then usually one or more other hormones will also be affected, such as prolactin, GH or ACTH (in which case cortisol could be low also).

Ginny52 profile image
Ginny52 in reply toradd

Yes, as I said to annabianca earlier, my endo is pretty great, and watches these levels. I’m lucky!

radd profile image
radd in reply toGinny52

Sorry Ginny52,

Haven’t read whole thread. Just jumped in 😳 coz not all endos appear to understand the seriousness/workings of SS.

Great you have found one that does 😊

Ginny52 profile image
Ginny52 in reply toradd

I can’t believe how lucky I am! His predecessors were really really awful, and rude too!

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