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Author Topic: Thyroid issues & support  (Read 12553 times)

Wrensong

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Re: Thyroid issues & support
« Reply #30 on: March 15, 2023, 02:38:35 PM »

Hello Helly1977 &  :welcomemm:  So sorry to hear of all you've been through, which sadly is not uncommon when thyroid probs meet menopause.  Circs not conducive to writing much at present, but just wanted to welcome you & say that you are not alone with it all now as the many wonderful women we have on this forum will want to do all they can to help.

Will try to come back to this thread at some point, meanwhile  :hug:
Wx
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Wrensong

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Re: Thyroid issues & support
« Reply #31 on: March 16, 2023, 07:44:24 PM »

Hi again Helly1977.  Would you be happy to tell us your current symptoms, together with any recent TFT, testosterone & oestradiol results, if you know them (i.e. since starting HRT)?  Also how long you have now been on this regimen, how many sprays of Lenzetto you use & how much Tostran?  That might help us get a better idea of how things stand. 

Your body has had to accommodate a lot of hormonal changes, becoming menopausal, Thyroxine dose reduced, then back up, starting T3 & the 3 components of your HRT regimen, it's no wonder you are not feeling as well as you need to.  I'm afraid it can take quite a bit of tweaking to get it all in balance, which can be frustrating as you have found, but it should be possible to improve on how you are feeling now, with perseverance.

The good thing is that you have had help from a good Endocrinologist who listened to you & validated your symptoms, which must have been a relief, so you are at least now on the right road.  Can I ask, are you in a position to go back to him/her for reviews or was it a one-off consultation? 

Like you I'm on T3 & T4, but very long term hypothyroid & also long postmenopause.  I remember only too well though, how difficult & frightening a time were the initial years & how very alone I felt with it all as medics didn't seem to know what was going on with me, so you have my sympathies.

Personally I find the more steady release from oestradiol patches suits my body better than any of the once or twice a day methods, but you may be different & if Lenzetto controls your menopause symptoms well enough I wouldn't suggest changing it just now.  If you are on Mirena you have the big advantage of not having to try to balance your thyroid with a cyclical progestogen, so it should be easier to get you feeling stable.

We have quite a few hypothyroid members on HRT, with a wealth of cumulative experience, so you shouldn't be short of support & advice on here.  Do come back & tell us a bit more if you are happy to share details.
Wx
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Keep On Swimming

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Re: Thyroid issues & support
« Reply #32 on: March 17, 2023, 10:13:47 AM »

Hello everyone!

I haven't been here for a while so I hope all you ladies are all as well as possible!

Big thanks once again to Wrensong for this thread   :)

Sorry, I won't be able to provide any Hashimoto-related help/advice today because I'm really struggling with the Hashimoto / peri combo... I can't even think straight (very bad night's sleep due to hot flushes / whooshes of anxiety and nausea) but I'll try to write down my head-scratching query...

Here goes: for those of us in peri, given the DAILY hormonal fluctations of our reproductive hormones, how do you get the HRT dose right so that you don't end up overdosed in oestrogen?

I'll explain: a year ago, my peri symptoms cranked up to become unbearable (night sweats Big Dipper style with anxiety and nausea, poor sleep, very low mood, not wanting to be here sometimes). So beg Nov my gyne's colleague (my own gyne was on a month's hol) put me on oestrogen gel (Estréva 0.1%) 1 pump/day. (I'm on Cerazette and in France they let peri women stay on Cerazette + the gel because we get frequent ultrasounds to check our womb linings.) After 5 days I was a new woman! All symptoms had almost vanished! Then 3 weeks later my own gyne came back from hols and said, come in and see me and made me stop the gel + pill for a week to "see where I was at" (blood test revealed peri) and then put me back on the pill + gel BUT this time I didn't get the magic feeling, so after 3 weeks I asked to increase the gel and was allowed to add another 0.5 pump. Well, I ended up so ill (weak, nausea, feeling faint and dizzy) that I couldn't leave the house for 9 days.

My GP said decrease to 0.5 pump, so I did that for a few days but my endocrinologue stepped in and said, come off the gel, your body can't cope with the fluctuating hormones + the gel because when you are high in oestrogen you are overdosing your body with the gel too - once you are through the meno this will be fantastic treatment for you. And she put me on a natural treatment called Sérélys Méno which has really calmed the night sweats and means my sleep is better.

BUT, for weeks now I've been getting terrible spells of feeling weak / shaky / nausea / period cramps that just come on in the blink of an eye and last for several hours to half a day. They're very frequent, almost daily and it's very hard to work or be/do where/what I'm meant to be doing. I had a big check up with my GP this week who has ruled out everything else (because of Hashi I've been tested for so many things over here...) including my thryoid dose which is ok for the first time in a year and she said it's the meno. She said, could you not just apply a tiny amount of the gel everyday?

I haven't a clue if I could just apply a pea-sized amount of the gel everyday! Has anyone ever done that in peri? I'm waiting for a call back from my gyne, so I'll let you know what she says, in case my experience could help anyone else.

I had no idea peri could make women feel so terribly ill...

On that positive note, I shall end. Thank you for reading this long ramble, I hope it makes sense!
xxx
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Helly1977

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Re: Thyroid issues & support
« Reply #33 on: March 17, 2023, 10:19:11 PM »

Hi @wrensong. Thanks for your post. I can go back to the endocrinologist but I wasn’t sure if I should go to him or a menopause specialist?
I started on the HRT regime in June 22.

I’m certainly happy to share everything and I’m so relieved to hear that there are others who can share their experiences, hints and. Survival tips! A huge relief.

My current symptoms are (brace yourself!)
disturbed sleep,
Waves of complete exhaustion
Itchy skin
Brain fog
Excessive worrying
Poor concentration
Irritability
Crying spells
Little feelings of interest or enjoyment in anything.
Low mood- like really low mood. I haven’t felt suicidal but I have felt completely disengaged/disinterested in anything bad happening to me. ( this is a massive shift from before as I was scared of everything and so fearful of dying etc)
Interestingly, a lot of these symptoms come later in the day and so I thought I was just tired but now I wonder if the slow release option you mentioned might help with this.

My current medications are
Thyroxine 100mcg + lyothine 5mcgs
Mirena
Lenzetto 3 sprays - (gone up to 3, about 5 weeks ago)
Tostran- 1 pump daily

My most recent full bloods were TSH <0.03
Free T4 14.9
Free T3 5.68
Oestrodiol 53
Testosterone 2.98
Then when I started going full uncontrollable crying etc they rechecked
TSH 0.03
t4 12.6
(They wouldn’t check any others)

I have been recording my symptoms to take to the doctor when I go next. Not that I’m confident I’ll be heard.
Thanks for sharing any thoughts on this, Helly
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Wrensong

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Re: Thyroid issues & support
« Reply #34 on: March 18, 2023, 11:32:07 AM »

Hug KOS  ;).  You already know my thoughts & that I didn't take HRT (but for a month) in peri, so I'll leave your post for someone else to answer.
Wx
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Wrensong

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Re: Thyroid issues & support
« Reply #35 on: March 18, 2023, 12:03:15 PM »

Helly, thanks so much for coming back with the detail, that's so helpful  :).  I hate to ask you for more, but if not too much trouble could you please give the dates & ref ranges for both the recent TFTs & sex hormone tests you've given results for, so we can see them in relation to each other & how they relate to the increase in Lenzetto?

I have to rush out now but will try to come back to you later.  A lot to think about after just an initial scan of your post, so I'll need to give more thought when more time, but initial thoughts . . .

1) Is 53 your oestradiol level on 3 pumps of Lenzetto?  If so it is very low, so you are not getting much from it in the way of oestrogen replacement.  Sorry if I have missed something here - in a rush!

2) Yes, maybe the continuous release of an oestradiol patch would suit you better & importantly give you better absorption.  Lenzetto has come to be regarded as quite a weak method in terms of uptake of oestradiol for some women, but as always with HRT response varies.

3) if you are taking your 5mcg Liothyronine first thing in one dose as I do, the worsening in some of your symptoms later in the day (e.g. exhaustion, low mood) could be due to its effects wearing off to some extent; as you'll know it has a short half life & I notice a difference mid-afternoon.  Are you prescribed the 5mcg tablets that you could halve to take in 2 doses, or are you already having to split higher dose tabs to get the 5mcg dose?

That said your last TSH (if 0.03), is suppressed, suggesting you are getting ample thyroid replacement overall & perhaps a little too much, which can also cause a sense of burn out, though the 12-ish T4 that you give with that is not high.

Sorry - another question: when were both TFTs done in relation to that day's dose of thyroid medication i.e. do you defer your day's dose until after the blood's drawn for TFT?

Sorry to ask for more.  Will try to come back to you later.
Wx
« Last Edit: March 18, 2023, 12:40:10 PM by Wrensong »
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Helly1977

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Re: Thyroid issues & support
« Reply #36 on: March 18, 2023, 10:52:44 PM »


Hi Wrensong, thank you for taking the time to work this through. Bloods and ref ranges below.
3rd December.
TSH 0.03, RR 0.35-4.94
t4 14.9,RR 9-19
t3  5.68,RR 2.6-5.97
progesterone 0.4, RR not given
oestrogen 53 RR not given
testosterone 2.98 RR 0.5-1.7

24th feb
TSH 0.03
T4 12.6
Increased to 3rd spray 10th feb
T3 started oct ( sorry it’s actually 10mcg/half 20mcg tab) endo said I could try the other half tab at lunch but to be honest, I did t want to mess about too much!
Bloods taken lunchtime and meds taken early in the morning, 6-6:30am
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CLKD

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Re: Thyroid issues & support
« Reply #37 on: March 20, 2023, 01:02:29 PM »

 :bouncing: for New Members
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Wrensong

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Re: Thyroid issues & support
« Reply #38 on: March 20, 2023, 06:01:37 PM »

Hi Helly, thanks for the additional detail which is very helpful  :).

Because your TFTs were carried out within a few hours of your having taken your morning thyroid meds that recent influx of hormones will be reflected to some extent in the results, making it more difficult to get an idea of your background thyroid status.  For this reason many Endocrinologists, mine included, like patients to defer that day's dose until after testing.  I realise this may not be practical if you are working & need to fit a TFT into your lunch hour, especially given the advice to avoid taking thyroid meds close to any mealtime means you would possibly have to go to work without breakfast in order to attend at early morning TFT.  If your Endocrinologist has advised to test after that day's dose, then obviously follow his/her advice.

Bearing in mind the likely influence of that day's dose on the results making them more difficult to interpret, it does nevertheless look from both tests as though your thyroid replacement dose may be a little high, as your TSH @ 0.03 is suppressed, below bottom ref range.

Your FT4 in both tests is not high, but your FT3 was towards top of ref range in the Dec test, so it may be that the 10mcg dose of T3 is too much for you, taking your TSH right down. 

The
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disturbed sleep, Waves of complete exhaustion . . . Excessive worrying . . . Poor concentration . . . Irritability
could be signs of too much thyroid replacement but they are also aspects of menopause for many of us.  I would certainly not feel well with a TSH as low as 0.03, but we are all different, you are younger than me & at your age I did need my TSH to be somewhat lower than is optimal for me now.  That said, we are usually advised not to remain on a dose that gives a suppressed TSH for any length of time as this can be detrimental to heart, bones etc in the long term.

Though most of the symptoms you list in your earlier post are not classic for over-treatment, if you have a fast pulse rate, feel too hot much of the time, pass high volumes of urine, have overly fast gut transit (possibly loose bowels, or even dehydrated stools if you are peeing excessively), racing thoughts, anxiety, unreasonable hunger, weight loss/inability to gain weight, I think it would be sensible to talk to your GP or Endocrinologist about having 5mcg T3 tablets prescribed instead of your 20mcg tabs & possibly reducing your current 10mcg T3 dose to 5 or 7.5mcg daily.  If you were to reduce to 7.5mcg, you could take the 2.5mcg in the afternoon, to reduce potential for adverse effects on your sleep.

If you don't feel you are over-treated, an alternative is to discuss with your Endocrinologist or GP possibly splitting your T3 into 2 x 5mcg doses, one first thing & one mid-afternoon - not too late in the day as again that could make it difficult to get to sleep.

The irritability could be due to too much thyroid hormone, but perhaps more likely too much testosterone & this would tie in with your 2.98 Dec result being quite a bit above top of ref range.  You may need to reduce your Tostran dose/dosing frequency, or ask to change to a weaker formulation such as Testogel.  If you have a look at this link from the British Menopause Socy they recommend using Tostran only on alternate days:-

https://thebms.org.uk/wp-content/uploads/2022/12/08-BMS-TfC-Testosterone-replacement-in-menopause-DEC2022-A.pdf

As you've not had oestradiol tested since increasing to 3 sprays of Lenzetto, you won't know how well you are absorbing that until your next oestradiol test.  Can I ask how many sprays of Lenzetto you were on when your oestradiol tested at 53 & how long you'd been on that dose?  You say you started HRT in June last year but I think not whether that was on 1 or 2 pumps of Lenzetto.  Please don't worry if it's a pain to post that info, but in the absence of a recent oestradiol test it would give us an idea of how the Lenzetto might be performing now you've been on 3 pumps for a while.  As I mentioned earlier 53 is pretty low on replacement oestradiol & it's unlikely you will feel the benefits of HRT until your level is considerably higher.

Sorry this is a long reply but I hope something in it might help.
Wx
« Last Edit: March 20, 2023, 07:03:22 PM by Wrensong »
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Wrensong

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Re: Thyroid issues & support
« Reply #39 on: March 22, 2023, 09:19:23 AM »

Hi Helly1977, just wondering how you are & whether anything in my posts made any sense in relation to your situation.  If you're reading, please let us know at some point how things are.
Wx
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Helly1977

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Re: Thyroid issues & support
« Reply #40 on: March 22, 2023, 10:26:34 AM »

Hi Wrensong. So sorry I have been slow to reply. A lot of what you said in your post makes sense. The one thing I don’t understand is that regardless of my t4 &t3 by TSH never seems to change. they have investigated all sorts with no conclusion.
I guess the thyroxine will be coming down at my next gP appointment but I’ll be honest I’m scared about that. I know what you are saying about some of the symptoms being the same for over medicated thyroid however they feel very different to when I have had symptoms before. For example, high levels for me is usually palpitations, anxiety panic l and difficulty getting to sleep etc,. I haven’t  had most of those and the sleep issue is different in that I can get to sleep but keep waking up.
The increase to 2 sprays of Lenzetto was back in September so two months before my last oestrodiol levels.
In terms of how I’m going at the moment, it’s not good to be honest. I feel so low in mood and have lost my desire for life so much that it frightens me. I know I need help and drug changes but the gP always bangs on about my thyroid however I know me and I know that’s not the fundamental issue. At no point when my levels have been badly out, have I ever felt this way. It tears me up to write this because not only is it frightening to feel this but the realisation that they can’t help
You, at least not quickly.
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Wrensong

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Re: Thyroid issues & support
« Reply #41 on: March 22, 2023, 12:55:30 PM »

Hi Helly, thank you for the update.  I'm sorry, I need to rush out just now but will come back to you again later.  Just wanted to say I so hear you on the awfulness of it all & felt the fear you do myself, but that it does get much better in time.
Sending you this for now  :hug:
Wx
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Helly1977

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Re: Thyroid issues & support
« Reply #42 on: March 22, 2023, 02:35:53 PM »

Thank you Wrensong x
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Wrensong

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Re: Thyroid issues & support
« Reply #43 on: March 22, 2023, 08:41:02 PM »

Hi again Helly, having a look at your earlier post now.

Quote
The one thing I don’t understand is that regardless of my t4 &t3 by TSH never seems to change. they have investigated all sorts with no conclusion.
When you say your TSH stays the same regardless of your T4 & T3 levels, do you have the results of any earlier TFTs when your T3 & T4 were lower?  It would be helpful to see what you mean.  I'm no expert on this (or anything else for that matter) but if the pituitary hormone TSH is low/suppressed when T3 & T4 are also low, I believe this can (rarely) happen if the pituitary gland is not working properly.  However, I'm sure your endocrinologist will have ruled that out.   

Unlike your TSH, your FSH (56.4) & LH (31) - also pituitary hormones - were not negligible, but in postmenopause range, tying in with your then below range oestradiol of <18.  So that seems reassuring, as I think it suggests your pituitary is responding as expected in menopause, so presumably it's working OK.

Quote
I guess the thyroxine will be coming down at my next gP appointment but I’ll be honest I’m scared about that.
I think it might be more helpful to reduce your Liothyronine as your FT4 results (if 14.9 & 12.6) are not high, whereas your FT3 is close to top of the range, so I think part of the reason you're feeling so unwell could be that these two are not balanced as they would be if your thyroid were working properly.  You may in fact need a little more Thyroxine & less Liothyronine to feel better.  I don't know for sure - your endocrinologist would be the right person to advise on that.

Two things I should have thought of before to help get a better idea of the background to what's going on.  First, can I ask have you ever been diagnosed with Graves & had treatment for that leaving you hypothyroid, or if not is it Hashimoto's & how long have you been on replacement?  Also, are you underweight/low BMI?  Please don't feel any pressure to answer if you prefer not to.

Quote
I know what you are saying about some of the symptoms being the same for over medicated thyroid however they feel very different to when I have had symptoms before. For example, high levels for me is usually palpitations, anxiety panic l and difficulty getting to sleep etc. I haven’t  had most of those and the sleep issue is different in that I can get to sleep but keep waking up.
I think your instincts are important & I hear you on the change in sleep disruption, but I'm afraid menopause can mess with our formerly reliable instincts, sometimes misleading us.  I'm also confused because you did list anxiety & panic as long term symptoms in an earlier post in this thread:-
Quote
the last 2-3 years I have been struggling with dreadful anxiety, panic attacks . . . night sweats, hot flashes
All of those can be symptoms of over-treatment with thyroid meds as you know, but of course they're classic for menopause too & we know from the diagnostic bloods your endocrinologist did that you do seem to be menopausal.  I'm sorry - it's a confusing mix, bless you & this is the problem at menopause for hypothyroid patients & medics alike.  It's just really important that if your thyroid medication is wrong this is addressed.

Quote
The increase to 2 sprays of Lenzetto was back in September so two months before my last oestrodiol levels.
So if you were on 2 sprays of Lenzetto for 2 months before your oestradiol tested at 53, that's really very low & I suspect on 3 sprays you are still not getting therapeutic levels, which is likely part of the reason your mood is so low.  Are you expecting to have another oestradiol test soon?  With poor levels like that from Lenzetto, I think you probably need to change to patches or gel.  As I said earlier, I'd suggest patches, as I find these provide a bit more stability than the once/twice a day methods & I think that can be helpful with a thyroid condition.

Quote
they can’t help You, at least not quickly.
If it's your T3 dose that needs to come down, the good thing is that its short half life means it's out of our system a lot quicker than Thyroxine.

I'm so sorry you're feeling so awful Helly & if you really feel your thyroid is not part of the problem you might feel more comfortable trying a menopause clinic as you suggested earlier.  I also wonder whether you feel you might want to ask about an antidepressant for your low mood & sleep disruption, just to help you through this very difficult phase until your HRT & thyroid are better balanced.  Many of us need to take one with our HRT, either short or longer term & they can be very helpful. 

Hypothyroidism & menopause can be a very difficult combination & you're having to deal with it at quite a young age too.  I hope you have someone supportive at home.  Please do contact your GP or Endocrinologist soon, as I feel you really need some professional support with this.  My heart goes out to you.
Wx
« Last Edit: March 22, 2023, 08:46:47 PM by Wrensong »
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Helly1977

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Re: Thyroid issues & support
« Reply #44 on: March 23, 2023, 01:05:02 PM »

Wrensong thank you so much for taking all this time to work through this.
My comment about my TSH is probably a bit dramatic. It has evened out in the past. I guess it’s more the past year that it’s been really reluctant.( I don’t have graves or hatishmoto’s btw) I am overweight- obese thanks to the recent weight gain where I have put a lot of weight on. Can I ask about your comment  about my fsh, lh and oestrodiol being in the post menopausal range. It sounds silly to ask but does that mean I am post menopausal or still peri?. I was told I was early menopause but couldn’t work out where that placed me. Looking at advice for exercises, diet etc, it seems to vary if you are peri or post so that would eb good to get some insights.
Regarding the Lenzetto, I went to 2 sprays in September and my bloods checked in the December were 53. I didn’t go out to 3 sprays until the February.
I think I am going to request my bloods to be repeated and arrange to meet with the GP. If I have no success I am going to the endo guy again as he saved me before. Either way my head feels clearer and calmer today so hoping it was just a blip. Thank you, you are amazing xx
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