Hrt for Endo plus Levothyroxine advice - Thyroid UK

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Hrt for Endo plus Levothyroxine advice

MajawithaJ profile image
22 Replies

Hi,

I’ve had a thyroidectomy last year and in the meantime been diagnosed with severe endometriosis & had an excision op followed by hysterectomy in March this year & further excision of the endometriosis in the rectovaginal area. I’ve kept one ovary with the hope that I don’t have to take the hrt but as well as hot flushes and troubled sleep I’ve had a pulling pain in the bladder area which might mean a prop lapse. I’ve had some blood tests done and it appears that I’m “post-menopausal” which means that that one ovary is not helping much.

I’m due to see a gyno who operated on me but I think he’ll just prescribe Tibolone as he said in the appointments prior to the op.

I’m finding the whole which HRT research so overwhelming and from what I’ve read so far, I

think I’d be more comfortable with the vaginal cream option as that is less likely to mess with my 100mg Levothyroxine by not passing through the liver but it will not solve my hot flushes (which have been bettered by sage tablets a bit)

I was wondering if you have any advice where to start with the right HRT for me considering my thyrodlessness and trying to keep endometriosis reappearance at bay (not the right medical term!)

I’ve attached my blood test results if anyone’s fancies having a look and pointing me in the right direction. Thanks in advance x

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MajawithaJ
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22 Replies
SlowDragon profile image
SlowDragonAdministrator

What are your latest thyroid results?

Do you always get same brand of levothyroxine?

Was thyroidectomy for cancer or Graves’ disease?

Vitamin levels are all too low, suggesting you are under medicated and still hypothyroid

What vitamin supplements are you currently taking?

Ferritin very low. Anything under 70 likely to cause issues

Ask GP for full iron panel test for anaemia

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

SlowDragon profile image
SlowDragonAdministrator

Do you have any low B12 symptoms

b12deficiency.info/signs-an...

If yes ask GP for further testing for Pernicious Anaemia before starting on any B vitamins

Once had testing, you may need B12 injections or just sublingual B12 supplements

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

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

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

endocrinenews.endocrine.org...

SeasideSusie profile image
SeasideSusieRemembering

MajawithaJ

I'm afraid I can't help with the HRT but I would point out the following:

Ferritin: 36 (13-150)

This is low in range, just 16.79% through range. Your GP will say this is normal because it's within range, but it's a very wide range and you'd also be normal if your level was 150 but it would make a lot of difference to how you feel. Ferritin is recommended to be half way through range.

Low ferritin can suggest iron deficiency anaemia so it might be worth asking for an iron panel and full blood count although your GP may not be willing.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.

Folate: 3.4 (2.4-15.5)

Again this is very low, scraping in at 7.63% through range. This is not folate deficiency so your GP wont be bothered. However, folate is recommended to be at least half way through it's range so it would be best to address this.

B12: 214 (197-771ng//L)

This is a very poor result at just 2.96% through range. Many people with a level in the 300s have been found to need B12 injections. You should ask your GP to test for B12 deficiency and Pernicious Anaemia.

Do you have any signs of B12 deficiency - check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Once you've been tested for B12 deficiency and started injections or supplements, then you can start taking a B Complex which is needed when taking B12 as it keeps all the B vitamins in balance and it will help improve your poor folate level.

Vit D: 49nmol/L

This is in the "insufficiency" category and it looks like your GP wont prescribe anything. Not to worry, you're better off buying your own anyway.

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L.

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 4,000-5,000iu D3 daily

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

Do you have any current thyroid test results? I'm wondering if you're optimally medicated, I have a suspicion that you may not be. Can you please post results and reference ranges for TSH, FT4 and FT3 if you have them.

MajawithaJ profile image
MajawithaJ in reply to SeasideSusie

Hi @seasidesusie

only have a TSH from the same test a couple of days ago. TSH 0.42 range 0.27-4.20 & before that in January it was 0.86.

SeasideSusie profile image
SeasideSusieRemembering in reply to MajawithaJ

MajawithaJ

Unfortunately, as TSH is not a thyroid hormone it doesn't give the whole picture. The thyroid hormones are FT4 and FT3 and those levels tell us if we are adequately medicated.

However, looking at these results from November

TSH 0.59 0.27-4.20

FT4 20 12-22

FT3 3.8 3.1-6.8

You are a poor converter of T4 to T3, which is shown by your FT4 being near the top of the range at 80%, and your FT3 being very low in range at just 18.92% through range.

If you had your Levo increased from 75mcg to 100mcg after those results (have I understood that correctly?) then I imagine your FT4 is now over range with a slight increase to your FT3. It wasn't extra Levo that you needed, it was T3 added to your Levo.

MajawithaJ profile image
MajawithaJ in reply to SeasideSusie

Yes, that's correct, they've increased my Levo after those results in November and I haven't been able to get them to test my T3 and T4 since. I had to convince my endocrinologist to put them on the blood test request for our next appointment in August.

Thanks for the other info, I just looked through my B12 history and it was 498 in April last year-a month after my thyroidectomy and then 270 in January this year. So that's quite a steep decline.

I've read through some of the symptoms and they make sense, especially the personality change, appathy which I was going to ask about on the forum here.

I've been through so much recently with endometriosis and the operation and atributing everything to being plunged straight into menopause. But maybe it's also B12!

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months...but they may jus5 say self supplement

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But on levothyroxine , improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need,

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

MajawithaJ profile image
MajawithaJ

Hi @SlowDragon,

Thanks for your reply.

Last time I had T3 & T4 tested was back in November when my Levothyroxin dosage has been upped from 75mg to 100mg.

TSH 0.59 0.27-4.20

FT4 20 12-22

FT3 3.8 3.1-6.8

and since then I’ve only had TSH tested prior to my hysterectomy in March. In January my TSH was 0.86.

I’ve recently had a phone call appointment with an endocrinologist who said that there’s no point looking at my results now as everything will be all over the place due to my op and being in “high catabolic state”. I’m due to see him in the beginning of August and having thyroid tests done then. As usual I had to fight to have T3 & T4 tested as he would have only looked at TSH.

I’ve mostly been on the Almus brand thyroxine.

My ferritin has always been a problem due to heavy bleeding and endometriosis. I’ve been on 300mg 3 tablets daily ferrous gluconate prior to the op and then I stopped after the op due to constipation issues.

It was 12 in January so I guess it’s an improvement it being 36 & after a complicated surgery.

I wonder if I should continue taking the tablets as well as the iron rich diet.

I had thyroidectomy due to Graves & not being able to tolerate Carbimazole & PPT.

Thank you for your links! I will have a read.

Also, I’ve just started to take some vitamin D, but only taking high dose turmeric with ginger supplement wise.

SlowDragon profile image
SlowDragonAdministrator in reply to MajawithaJ

Many many Graves patients find strictly gluten free diet helps reduce symptoms

Obviously essential to get all four vitamins optimal as first step

Getting FULL Thyroid testing privately in say 8-12 weeks ...at least 6-8 weeks after adding last vitamin supplement

If ft3 remains low after all these steps

Many people after thyroidectomy need addition of small dose of T3 alongside levothyroxine

MajawithaJ profile image
MajawithaJ in reply to SlowDragon

Hi, yes, I’ve been gluten & dairy free for couple of years now & that’s definitely helped.

Is T3 prescribed by doctors?

SlowDragon profile image
SlowDragonAdministrator in reply to MajawithaJ

T3 Only prescribed EXTREMELY reluctantly on NHS

Due to outrageous price charged to NHS. T3 is cheap in rest of the world

Media coverage

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

dailymail.co.uk/news/articl...

medscape.com/viewarticle/90...

theyworkforyou.com/search/?...

So you have to pick your endocrinologist with great care

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

Often has to be on private prescription...EU T3 cheap ...but Brexit in Jan may make EU option cease

Post code lottery on NHS.

The fact you are gluten and dairy intolerant suggests gut function is impaired and it likely you will need T3

MajawithaJ profile image
MajawithaJ in reply to SlowDragon

Thank you, that's really helpful. I doubt that my endocrinologist would prescribe it since I had to convince him to test my T3.

Sorry, one more question, how low does T3 have to be in order for them to prescribe it?

SlowDragon profile image
SlowDragonAdministrator in reply to MajawithaJ

Your Ft3 result is already far too low

Most people on replacement thyroid hormones need Ft3 at least over 5 or 5.5

tattybogle profile image
tattybogle

I have found research that shows your dose of levothyroxine may need to be increased when taking HRT

pubmed.ncbi.nlm.nih.gov/113...

(Thyrotropin = TSH in case you are as confused by it as i was :) )

MajawithaJ profile image
MajawithaJ in reply to tattybogle

I’ve read the same, I was thinking if I get a cream version it won’t interfere with thyroxine but that doesn’t solve the insomnia & hot flushes problem. Thank you, I will have a read

tattybogle profile image
tattybogle in reply to MajawithaJ

I get the impression that the effect is because of Estrogen (?) using the same thyroid hormone receptors as levo , but i have picked this idea up from other studies that we're 'over my head', so don't take my word for it.

So i don't think it's because of reduced absorption of levo , or an interaction between HRT and levo.

On this basis i don't know if you can get round it by using cream.

I think it's not exactly a problem anyway , it just means you may notice you need an increased dose of levo on some kinds of HRT, and when you stop HRT you may need less again.

MajawithaJ profile image
MajawithaJ in reply to tattybogle

That’s interesting, and actually comforting to know.

I think I was thinking from the aspect that it’s going to be something difficult to manage if it changes (more from my current experience with my endocrinologist & how difficult it was to up the dose to 100 from 75mg when I felt really bad) but if I just accept that it will change & I might have to monitor it via medicheck blood tests.

tattybogle profile image
tattybogle in reply to MajawithaJ

You may be lucky and find that the Gynaecologist is more informed about thyroid hormones than endo's usually are.

I saw a Gastroenterologist once who recognised the clinical symptoms of hyper/hypo....

But it's safer to do your own research isn't it.

Endometriosis sound's nasty, you have my sympathy dealing for having to cope with that on top of hypo and maybe menopause. Knowing what's causing what must more or less impossible .

I do hope you start to feel better. Fingers crossed for a helpful appointment.

Best Wishes

Tat

x

tattybogle profile image
tattybogle in reply to tattybogle

There is some discussion about Tibolone? on this thread, hopefully it's helpful rather than depressing.

healthunlocked.com/thyroidu...

MajawithaJ profile image
MajawithaJ in reply to tattybogle

Oh thanks so much, I will have a look

thyr01d profile image
thyr01d

Just a little note that might cheer you. I had a hysterectomy (when 34) and needed hrt afterwards, however, my body 'righted' itself over the next few years and I was then fine without hrt until last year when I was 63. So, you might find the same.

Also, my TSH is over 95 (coma level) yet following advice on this forum and a supportive endocrinology team I am now feeling better than I have felt for decades.

I think that given a little time and the right meds and any supplements if needed you should feel much better.

MajawithaJ profile image
MajawithaJ in reply to thyr01d

Thank you @thy01d, that’s so good to know, glad you are feeling better. You’ve hit the nail on the head, so important having supportive doctors.

I don’t feel like I am, so I’m grateful for the advice here!

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