Endo results - meno or thyroid?

[klfaz]

55 year old hypo diagnosed 20+ years ago, family history of hypo ( nan, mum and sister) .

I also have vitiligo from my early 20s.

I was tested for dry eyes when I was a teenager , so I think I've been hypo a long time.

Oct 23 GP bloods showed TSH 0.1, T4 18.9.

This was 12 hrs after my last dose thyorxine, which I now know should be longer.

I referred myself to a private endo as had been feeling so rubbish. The usual, brain fog, fatigue, lethargy, achey joints, low mood and low pulse ( RHR 50).

Dec 23 bloods - 36 hrs since last thyroxine and fasted.

TSH 2.46 range 0.27-4.2

TF 16.80 range 12-22

T3 3.4 range 3.1-6.8

Estradiol < 18 range < 18.4

Blodd count fine.

Endo says it's NOT my thyroid but my oestrogen is too low.

I was using 50 Everol , he's upped that to 100, retest early April.

I've been on 100 patch previously but I never felt sparkling then .

I'm a non drinker, non smoker, exerciser, not overweight, so I really feel I need to find out why I feel so rubbish!

Any advice would be a appreciated. Endo has talked about meno and thyorid hormones and balance but my gut is that it's not the meno ones causing the problem.

[TiggerMe Ambassador]

What are the ranges for your results?

It very much looks to me like it is both!

[klfaz in reply to TiggerMe]

Sorry, edited post to give ranges. for latest test . The NHS ranges Oct 23 are wider.

[TiggerMe Ambassador in reply to klfaz]

Great..ok so this is how your levels look...

Free T4 (fT4) 16.8 pmol/L (12 - 22) 48.0%

Free T3 (fT3) 3.4 pmol/L (3.1 - 6.8) 8.1%

T4:T3 Ratio 4.941 

As you can see your fT4 is only mid range and your conversion to fT3 is awful (fT3 being the active form).... this is the conversation you need to have with your Endo who doesn't think it's your thyroid!

So a two pronged attack is need to deal with thyroid and HRT

[klfaz in reply to TiggerMe]

Thanks Eeyore. I'm going to email him later. I had a follow up on Zoom and he very much focussed on the meno side, which threw me.

I may ask the GP to retest my TSH plus get the D etc tested , the nurse there is really good and they said they would retest my TSH 3 months anyway because of 0.1 TSH.

If I leave 24 hrs since last dose, it will give me a higher TSH, am sure.

If I increase my levo from 125, will this help my T3 ?

[TiggerMe Ambassador in reply to klfaz]

I would try and get him to concentrate on your thyroid issues, as a vague rule most people need a fT3 of at least 50%... your TSH is stopping them seeing you low free's, ask to be treated on these and not TSH 🤗

I've walked in your shoes and you need to be quite firm with them or they just fob you off!

You can say you have had guidance from Thyroid UK about correct treatment which might make him listen

[klfaz in reply to TiggerMe]

Thansk Eeoyore. I've suspected for a long time that it was T3 and i should have investigated it sooner. If he won't listedn then perhaps I need to look elsewhere. I'm with BUPA, so I haven't invested too many £££s in him and his secretary is dire at admin.

[TiggerMe Ambassador in reply to klfaz]

Yep, I spent years getting worse and worse and then menopause pushed me into action and thankfully found this forum...

Perhaps ask Thyroid UK for the Endo list and see if there is a T3 aware one in your area 🤗

You could ask for an NHS Endo referral but it takes a while

[klfaz in reply to TiggerMe]

Thansk Eeyore, I will. I will email him tonight, meanwhile ask Thyroid UK as back up . I'm reluctant to increase my HRT again as I worry about the BC risks, I've already had a couple of cysts and I don't think that the utrogestan helps mood. I feel flat most of the time, a combination of thyroid and meno.

[TiggerMe Ambassador in reply to klfaz]

Have you had your testosterone levels check?

[klfaz in reply to TiggerMe]

Yes FAI was 1.145 Dec 23.

2 years ago I was prescribed testosterone privately. I used it for 6 months but it didn't make a massive impact on my levels,s o I stopped using it. I have been on this journey for a while!

[TiggerMe Ambassador in reply to klfaz]

It is certainly a journey which involves juggling and kissing frogs 🐸🙃

[TiggerMe Ambassador in reply to klfaz]

Could be that you just aren't absorbing it well? Have you tried the gel or the spray which are body identical... I've a couple of cysts too but I only keep my oestrogen at around 240... so even with HRT levels are much lower than it would have been before menopause

I felt like I was ready for the nursing home when I finally took control

[klfaz in reply to TiggerMe]

Yes, he said that and so did the private meno lady who prescribed testosterone. She wanted to push me over 100 patch , which I resisted as it's not licences. He says no to testosterone as my oestrogen is too low, which I think is the right way . I think I'm heading that way! Luckily I only work part time and my kids are adults , or I think I'd be on my knees.

I haven't used the gel for a few years as 4 pumps was a lot to put on. I am thinking, perhasps that's the way I go.

[TiggerMe Ambassador in reply to klfaz]

In desperation I experimented and would stick 3 x patches on! When I realised this helped I booked myself into a menopause clinic as dealing with my GP was soul destroying... I like the control I have with the spray and no more sticky goo 😏

[klfaz in reply to TiggerMe]

I know the NHS won't go over 100. I saw NHS Gynae and she said no way. Taking your oestrogen orally was suggested but I said no as it can interfere with your levo and goes through your liver. My late mum has surgical meno in her 40s and suffered with ill health there after, so I really want to get sorted.

[TiggerMe Ambassador in reply to klfaz]

I'm actually on a lower dose with the spray than the extra patches as I seem to absorb it better 🤷‍♀️your oestrogen level is remarkably low

[klfaz in reply to TiggerMe]

Okay - I will also question the endo about why not spray ? He did mention surface area , I use Everol which I have been told are best for absorption. Prhaps taking my dose back to 100 will help.

[TiggerMe Ambassador in reply to klfaz]

Meaning more surface area would be better? That would suggest the gel might be the way to go?

(It was Evorel that I experimented with)

[klfaz in reply to TiggerMe]

Yes. Everol are big , the Estradot , which you can't get hold of are tiny. Yes, perhaps gel or spray are the way to go.

[klfaz in reply to TiggerMe]

Thyroid UK have sent me the list, will look. I'm near Manchester, so perhaps have one.

[klfaz in reply to klfaz]

There are a few local ones ( Manchester , Bolton , Liverpool ), which is good news.

[klfaz in reply to klfaz]

Thansk for your advice. I'm on it tonight!

[greygoose]

Well, your TSH is too high, for a start. Should be down to 1 or under. So, you're under-medicated. Your FT3 looks low, but can't really tell without the range. But, it's low T3 that causes symptoms such as you describe.

[SlowDragon Administrator]

please add ranges on Ft3 and Ft4

Ft3 looks rock bottom

Last dose levo should be 24 hours before test

Presumably your have autoimmune thyroid disease aka Hashimoto’s

Have you ever had thyroid antibodies tested to confirm

You need vitamin D, folate, ferritin and B12 tested too

If you normally take 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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

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/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

[klfaz in reply to SlowDragon]

Thanks SD, have added the ranges now.

I do usually take levo at night , so I possibly left it too long after last dose and my TSH is probably somehere inbetween 0.1 and 2.4.

I've never had my antiboides tested and I feel that I should contact the endo to ask why he didn't test them. I do supplement D/K2 every day, all year, magnesium , B vits and NAC.

[SlowDragon Administrator in reply to klfaz]

Come back with new post once you get results

How much vitamin D do you take

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Remember

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Currently your under medicated and poor conversion of Ft4 to Ft3

[klfaz in reply to SlowDragon]

I'm just composing my email now. Iam questioning him, as he told my GP my thyroid levels are fine! I think I need a change of endo.

He is focussing on the meno, which is not where I want to go.

It's 2000iui, which is probably too low for winter. I am very good at getting light in summer and I suplement all year, plus walk every day. I only started B vits after Dec appointment but I know that you need to stop, thank you .

My ferritin was 84

[SlowDragon Administrator in reply to klfaz]

Vast majority of endocrinologists are diabetic specialists and useless for thyroid

Roughly where in U.K. are you

[farrellkl68 in reply to SlowDragon]

Just said exact thing to my husband . Between Manchester and Liverpool

Going to contact GP with blood results to say I disagree that they are satisfactory.

[SlowDragon Administrator]

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists including those who will prescribe T3 if/when necessary

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[farrellkl68 in reply to SlowDragon]

That’s a good idea . I think one in Bolton and also Liverpool .