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[Wrensong]

Oh SueLW

I have been taking T3 + Levo since November. It's been a long, hard slog. No Damascene moment for me so far. The more T3 I take the lower my FT4 and FT3 have gone.  Currently on 25mcg T3 and 125 Levo a day and with the worst results of the journey so far!

really sorry to hear that.  That's way higher dose of both than me, do you split the T3 dose or take it all in one go?  How frustrating for you.  Are you taking both meds on an empty stomach & waiting an hour before food?  Sorry, I know you're very knowledgeable but like you, just wonder why your TFT doesn't seem to make much sense in the circs.    it's no fun feeling like that when you've tried so hard is it?
Wx

[SueLW]

SueLW, you have a Mirena coil for womb protection so you could try using natural progesterone cream for balance.   This can be bought online and you have nothing to lose by trying it.

No, I don't want to do that.  For a long time I used expensive bioidentical hormones through an expensive clinic.  I'm with the Newson Clinic now and using NHS available hormones.  The bioidentical hormones didn't do me any good at all. They made me worse.  The fluid retention on that progesterone cream was terrible.  I literally couldn't pee.

Just to clarify, I meant natural progesterone cream that you buy online, not the expensive stuff from the Specialist Pharmacy which is much stronger because it is also for womb protection.   But I take your point, if you didn't get on with progesterone cream before then you might not want to risk it, particularly with thyroid medication.

I thought you had previously been on progesterone lozenges like me but that must be somebody else!

Hope you find a solution.

Good memory Mary!  Yes, I was on lozenges at one point.  None of the Bioidentical hormones helped me much at all.  I wanted to believe they did, but I just didn't see benefits.  The doctor had told me I could use the progesterone cream any time I liked to relieve bloating and if I needed to feel calm or for a bit of a boost.  I tried that at a time when I had my Mum in hospital with a fractured pelvis in one town, Dad in hospital with pneumonia in another city, their house between the two and me living 25 miles away.  That was stressful as both felt it their right for daily visits! I used a lot of the progesterone cream then and completely ballooned and couldn't pee at all.  I got scared.  I could barely move I was so tired.  It didn't keep my womb lining thin though!

I have used the "order it online" kind of cream before I went onto HRT properly.  But things are so different now. I'm menopausal not peri, I'm hypothyroid and not improving and I wasn't back then.  Well, it was just starting, so nothing like this bad.

I'll see how I go on the Utrogestan.  Today is a day off it and I'm missing it.  I will give every night another go and see how long it takes to zombie me.  I might just have to have some weird schedule like 3 nights on, 1 night off or something.  I'm not worried playing about with it as it's not for womb protection.

[SueLW]

Oh SueLW

I have been taking T3 + Levo since November. It's been a long, hard slog. No Damascene moment for me so far. The more T3 I take the lower my FT4 and FT3 have gone.  Currently on 25mcg T3 and 125 Levo a day and with the worst results of the journey so far!

really sorry to hear that.  That's way higher dose of both than me, do you split the T3 dose or take it all in one go?  How frustrating for you.  Are you taking both meds on an empty stomach & waiting an hour before food?  Sorry, I know you're very knowledgeable but like you, just wonder why your TFT doesn't seem to make much sense in the circs.    it's no fun feeling like that when you've tried so hard is it?
Wx

It's certainly no fun!  I've been struggling with this for 9 years now.  I could write a book about hypothyroidism and it's treatment.  But I haven't been able to fix me.  The double whammy of meno and thyroid has ruined my life.

I do split my dose 8am and 3-4pm.  I was trying to get it all into one dose but the endo wanted me to try 3 doses so I followed his instructions for a short while but I felt most unsettled like that.  Some need it all at once to saturate the cells.  I can't tell I've taken the 10mcg afternoon dose, which is why I was going to try all in one until he asked me to try his way. 

Yes to the empty stomach and waiting etc.  Been doing the for years.  Now I've moved the Oestrogen to bedtime out of the way of the T3 too. 

Last bloods (about 3 weeks ago now) FT3 - 35.14%, FT4 - 18% through the reference range.  ie terrible.

[Wrensong]

The double whammy of meno and thyroid has ruined my life.

  Yes, sadly the combination can wreak havoc & judging from hypothyroid members on here, those of us who need T3 as well as T4 seem to struggle most to balance it with HRT.  I've been on thyroid replacement for 27 years, but the 16 since perimenopause started have been the hardest, so I feel for you.

I've never seen TFT results represented in percentage form like that.  I get mine done privately but they're reported in the usual way.

Have you tried a gluten-free diet in case gastric inflammation is stopping you absorbing your thyroid meds?  I'm GF & there seems to be increasing thought that it can help keep inflammation to a minimum in hypothyroidism.

[SueLW]

I've never seen TFT results represented in percentage form like that.  I get mine done privately but they're reported in the usual way.

Have you tried a gluten-free diet in case gastric inflammation is stopping you absorbing your thyroid meds?  I'm GF & there seems to be increasing thought that it can help keep inflammation to a minimum in hypothyroidism.

I work the percentages out using a calculator.  It's much easier to keep a record of them in percentage form because it allows us to compare tests from labs with different reference ranges and get comparable results.

No I'm not doing gluten free again unless I one day test positive or celiac disease.  I went gluten free for over a year at the start of all this and hated every day of it.  Also, no benefits that I could see.  I do better if I give up sugar.  But mind is not in the right place or that at the moment either.

[Wrensong]

 

I went gluten free for over a year at the start of all this and hated every day of it.  Also, no benefits that I could see.  I do better if I give up sugar.  But mind is not in the right place or that at the moment either.

  Agreed, no point in GF if you felt no benefit with a long trial.  It helps me with digestive issues so I carry on with it.  Yes, sugar's pretty much a no-no for me too but luckily I've never had much of a sweet tooth.

[Hurdity]

Hi SueLW - I remember you - being a thyroid expert like Wrensong .

Re progesterone - I have just said on another thread that I do not subsrcibe to the view that additional progesterone is needed for anything other than womb protection and if you have ongoing symptoms then something else is probably amiss.

As far as I understand it fluid retention - if hormonal - is more likely to be due to too much progesterone than not enough - and if you have a Mirena coil I MOST DEFINITELY WOULD NOT take any additional progesterone! No wonder it made you feel bad. Especially not to help me sleep - although it does have a sedative effect...Are you taking it orally? This gives rise to more side effects in those who are sensitive because of the myriad metabolic by-products. Used vaginally for womb protection could be an option?

Aside from the thyroid issues - which I know very little about - when did you last have your Mirena coil changed? If it was recently then could this be the cause of your symptoms? What does your doc say about the fluid retention?

Just a few random thoughts!

Hurdity x

[Wrensong]

Hi Hurdity, yes interesting what you say about progesterone causing fluid retention & I've seen women on here posting that it does seem to do that to them.  But there is definitely a fluid retention effect from oestrogen with me - the higher the dose, the more fluid I retain & conversely a strongly diuretic effect from prog.  So progesterone reduces bloating from fluid retention for me, though the inhibition of peristalsis via the relaxation of smooth muscle we get with prog . . . slows digestive transit . . . causing . . . bloating of another kind!

The longer I've been on HRT, the more I think the thyroid interaction probably affects the degree of some side effects & particularly for those of us who take T3, judging by the fact the hypothyroid members who come here with seemingly the most intransigent probs balancing HRT & thyroid meds are those on T4 & T3.  I sent SueLW a link to a paper that demonstrated a mild potentiating effect from progesterone on thyroid hormone & I wonder whether that might partly account for the diuretic effects I get from it.

There are refs in some papers though, to prog having diuretic effects, but most I've seen describe them as mild.  I find that to be an understatement each time I go onto the horrendous prog phase & start peeing for England for a few days.  But then I'm also among what seems to be a minority of women on here who find progesterone worsens insomnia.  As with so many things menopause, the highly individual nature of our experiences is astonishing to me.  Always reassuring when others do post reporting the same effects though!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4245250/
"Progesterone has both systemic and local effects. At the systemic level, progesterone increases diuresis through activation of the renin-angiotensin system"

This next link is not to a study but still interesting.

https://www.drstephaniegoodwin.co.uk/blog/post/the-menopause-and-bloating
"Firstly oestrogen has an effect on water retention, indeed this is the reason many women experience a higher level of water retention coming up to their period. Unfortunately when oestrogen levels become erratic during perimenopause and menopause water retention is often a consequence.
Oestrogen also influences the production of bile and this acts as a lubricant in the intestines. When this process becomes less efficient fats are less thoroughly digested and bloating can occur.
Increased oestrogen levels lead to the adrenal glands producing aldosterone which effects the kidney function so that there is a water/salt imbalance leading to feelings of bloating and retention of water.
Finally progesterone usually acts as a natural diuretic which helps to relieve excess fluids from the body. If oestrogen levels become much higher than progesterone this will again lead to bloating and retention of water. However if progesterone is high food will move more slowly through your intestine which again leads to bloating."
 
Sue LW, can I ask what does your Endocrinologist say about your thyroid levels?  I really hope you manage to make some progress.
Wx

[Mary G]

Progesterone doesn't give me fluid retention either but I think that could be due to my low 50mg daily dose.

Speaking from personal experience, there seems to be a very fine line between getting the progesterone dose right and getting it very wrong and setting off a whole host of side effects.

[SueLW]

Hi SueLW - I remember you - being a thyroid expert like Wrensong .

Hi Hurdity, well remembered!  That's me.  Could write the book on thyroid.

I do have a Mirena coil, it's well within date, 2 years in place.  I am under Dr Louise Newson for HRT.  She is very fond of increasing dosage of oestrogen well above the normal sorts of replacement levels.  I've tried it with her, but I get very painful legs and feet when my levels rise.  And it most definitely has caused very noticeable fluid retention in the past.  I talked to her about the option of adding progesterone (Utrogestan) to my coil for the other benefits of progesterone and she was happy for me to try it, hence I have the capsules on hand.  I tried it briefly about a year ago but can't remember why I stopped.  I only used about half a packet of capsules.  In the past, when I tried patches and Utrogestan for the first time, I couldn't cope with the Utrogestan at all.  I felt suicidal in 3 days!  At that time I was seeing a doctor at the Marion Gluck clinic (options were limited back then!) and moved onto cream.  I never felt well and eventually got an appointment with Dr Louise when she was still a part time GP and didn't have her private clinics.  I refused to take Utrogestan orally when she suggested it with gel.  So for a while I used to vaginally.  No issues but a polyp or 2 and fibroid caused endless bleeding and eventually I had a coil fitted which has been great.  Polyps removed too. Even better.

So I am trying the progesterone now to see if it helps me loose water.  My endocrinologist (for thyroid - also private!) told me to try this for a month.  And I decided to reduce the Lenzetto to 2 sprays rather than 3 at the same time.  In the past week or so I have had days where I have pee'd a lot and others not so much.  Yesterday not so much and very swollen feet.  Today I am feeling fuzzy, light headed and very tired.  So that's not great.  Also requiring the fan as I'm too hot. 

Not sure whether to keep on with the experiment or not.  If I stop the Utrogestan I will see how the lower dose of oestrogen goes.  My last blood test came back with 1650 (or similar) pmol/L for oestrogen on 3 sprays so I should be OK I would hope.  But I will need to check it again soon.

It's a nightmare.  I can't get headway with my thyroid.  I was put onto combination Levo and T3 in November last year and so far all that has happened is that my Free T4 and Free T3 have dropped lower!  Bonkers.  The endo just gives me ideas to experiment with and gives me the prescriptions I need to facilitate that.  So I more or less do my own thing.  I was worried that the oestrogen was causing the drop in thyroid hormones by binding them.  So I switched to taking my oestrogen sprays at night.  But I feel no better in any respect from moving the time or reducing the dose.  I am experiencing a bit of acid reflux in the evening.  This was never the case before the progesterone experiment!

I would just like a glimmer of hope that I am on the right track with all of this at some point.  9 years now since I was "me".  Despite my best efforts.  Oh well, keep trying.  I will retest the thyroid soon and then make a decision what to do about an increase in that.  I also have a prescription for a water tablet if this current experiment doesn't help.

[SueLW]

Sue LW, can I ask what does your Endocrinologist say about your thyroid levels?  I really hope you manage to make some progress.
Wx

I most definitely get high water retention from too much oestrogen.  Now whether that is because I am also hypo or not I don't know.  As you are hypo and have the same effect, it might be linked.  So far I'm seeing no improvement in adding the progesterone or reducing the oestrogen, or moving the dose timing!  Feel particularly crap today.  Light headed and so very tired and a bit fuzzy.  Could be the progesterone.

Endo looked at thyroid results a couple of weeks ago and said "Oh you need more".  He's good.  He gives me a few ideas, warns me and gives me the prescriptions I need to experiment.  I think I realises I'm well versed in thyroid treatment.  He has given me a prescription for 6 months of T3 at 40mcg a day and told me to be careful of heart rate and to keep my eye on things.  He knows I do my own regular tests.  The heart rate thing is difficult because of the atrial fibrillation.  It has given me a high heart rate so I don't have a lot of room in that metric.

I think I'm most worried because both T3 and T4 results have got worse on more medication.  I'm reluctant to add more in in case it gets even more worse.  I don't understand the worsening to the level I'm seeing it.  I have this nagging little voice at the back of my head that says "what if you aren't hypo at all? What if you are making everything worse by taking medication for a disease you don't have?"  This is mostly because it was diagnosed by the doctor at the original HRT clinic. But TSH was over range, so it's probably right.  But this nagging doubt holds me back a bit.

I am struggling to walk so much at the moment.  I'm going to have to do something.  Last evening I walked to from my work unit across a yard and over the road to the canal to feed the swans.  Then back.  On the way back my lower back hurt, my front thighs were hurting and my legs would only move slowly.  I could not force them faster.  My walking pace is a snails pace.  I put that down to thyroid. 

[Wrensong]

Hi Sue

I most definitely get high water retention from too much oestrogen.  Now whether that is because I am also hypo or not I don't know.  As you are hypo and have the same effect, it might be linked.

Yes Sue - we are similar in our reaction to oestrogen as regards fluid retention, but I think mine is probably minor in comparison with how yours sounds.  On a higher dose of oestrogen I can easily see I retain fluid as my jeans are tighter on thighs & tummy/hips, but that's fine as I'm slight, though I don't like the feeling of sluggishness than comes with fluid retention in hypothyroidism.  Also, as it tells me metabolically I'm under par it's a worry.  My understanding is that oestrogen can cause even otherwise healthy women to retain fluid, but given you & I are hypothyroid, we know oestrogen raises TBG, effectively reducing our active thyroid hormone & an underactive or under-treated thyroid can give rise to fluid retention, I think we are probably more prone to retain fluid than some, until our thyroid status is corrected to be well balanced with our oestrogen levels.

I am struggling to walk so much at the moment.  I'm going to have to do something.  Last evening I walked to from my work unit across a yard and over the road to the canal to feed the swans.  Then back.  On the way back my lower back hurt, my front thighs were hurting and my legs would only move slowly.  I could not force them faster.  My walking pace is a snails pace.  I put that down to thyroid.

I don't have probs walking, in fact I'm lucky to be able to walk briskly for an hour a day, so that you're so fatigued, from what you said earlier your legs & feet are so uncomfortable & swollen & so badly affect what you can do, must be horrible for you, to say the least. 

My meds - HRT & thyroid are all at much lower doses than yours, but if I remember rightly from when we've chatted in the past, we're quite different physically as I think you're tall & I'm quite small.
 

My last blood test came back with 1650 (or similar) pmol/L for oestrogen

Your oestradiol result is also very high compared with mine.  Mine was under 300 when last tested, but I don't know your age or stage in menopause - I'm 9 years post & regardless, individual sweet spots as regards HRT can vary so much.  But I'm thinking here about the extent of your fluid retention & how that might be related to the high oestrogen, given you're hypothyroid.

Today I am feeling fuzzy, light headed and very tired.  So that's not great.  Also requiring the fan as I'm too hot.

Imagine you're taking the Utro orally this time, for fear of it being too great a dose for the uterine lining with a Mirena in situ?  As with you, Utrogestan makes me far too hot (& horribly hyper feeling).  But progesterone is known to raise body temperature.

I was put onto combination Levo and T3 in November last year and so far all that has happened is that my Free T4 and Free T3 have dropped lower!  Bonkers.

Yes, it's difficult to know what's going on here isn't it?  Other than problems with absorption.  That's why I asked what your Endo said about your thyroid levels, given you're on quite a high dose of both hormones.  And the reason for asking whether you'd tried GF - to see whether any gastric inflammation could be hindering absorption.  But you've already ruled that out with a long GF trial some time ago.

I am experiencing a bit of acid reflux in the evening.  This was never the case before the progesterone experiment!

  Yes, possibly because progesterone is a smooth muscle relaxant.

Endo looked at thyroid results a couple of weeks ago and said "Oh you need more".  He's good.  He gives me a few ideas, warns me and gives me the prescriptions I need to experiment.  I think I realises I'm well versed in thyroid treatment.  He has given me a prescription for 6 months of T3 at 40mcg a day and told me to be careful of heart rate and to keep my eye on things.  He knows I do my own regular tests.  The heart rate thing is difficult because of the atrial fibrillation.  It has given me a high heart rate so I don't have a lot of room in that metric.

  No, indeed & that must complicate the clinical picture & management of the various conditions considerably for you.  Are you still under Cardiology & are you & they sure the fluid retention isn't related to the AF?  It must be a worry that you need T3 with AF, for sure.  Also, I wonder has anyone tested your renal function recently?

You say it was only a couple of weeks ago your Endo said you need to up your thyroid replacement - so presumably there's room for improvement in your symptoms as the weeks go by?  I don't know about you, but although I can feel a difference after 7-8 days, it takes about 8 weeks before things level off with me.

I have this nagging little voice at the back of my head that says "what if you aren't hypo at all? What if you are making everything worse by taking medication for a disease you don't have?"  This is mostly because it was diagnosed by the doctor at the original HRT clinic. But TSH was over range, so it's probably right.

Sue, have you had a heart to heart with your Endo about this?  Did you have thyroid antibodies at time of the TFT that led to your being medicated for hypothyroidism?

I hope nothing I've said here is insensitive Sue, I know how clued up you are & I'm not questioning your knowledge of your conditions, but you've been having a protractedly horrible time of it, I am concerned about you & given we're both hypo (mine goes back 27 years) & on HRT, I hope it might help, if only a little to thrash things out as best we can.
Wx