I'm Hypothyroid and after finding out that HRT can interfere with my Levothyroxine uptake I am doing an experiment on myself to see if leaving off HRT will make any difference to my health or make my health worse. I was on HRT just before finding out I had Hypothyroidism, several years ago.
What I am reading and being told is all 'swings and roundabouts.'
I was clinging onto my prescribed HRT as many women say the estrogen gives them an energy boost among other pluses, after the menopause.
I do try to 'listen' to what my body is telling me to help make medical decisions, but I have no idea what to expect when leaving off the HRT.
My Doctor is trying to get me to take a 'new,' but lower dose HRT, so thought I would experiment before my present HRT is taken away altogether. Once Doctor puts me down to the 'new' lower dose HRT there might not be a chance to go back on it.
So has anyone had experiences regarding both Levothyroxine and HRT and when leaving the HRT off please ?
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Coastwalker
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Hello Coastwalker. I was on HRT and came off it but felt worse and had heard that it can effect our Levo medication. I now take patches as my Gyno said that this bypasses this and does not bind with the Thyroid binding agents. You could ask about these. This way it does not have to pass through the liver.
Thank you marmaris, never knew there were HRT patches available, how long do you keep these patches on for and what size are they please ? Funny enough I don't feel too good today and my eyes have gotten dryer, redder and hurting, did wonder if my eye problem was levo or HRT connected, hence part of my experiment.
There are several cards on the market you need to ask you Gyno which is more appropriate for you. I change mine twice weekly, just a small patch that I stick to the top of my thigh that I alternate.
Thank you marmaris, I have used vitamin B12 patches before so I expect they are very similar to use. I certainly will look into the 'several' different patches available on the market you have mentioned.
Did not realize patches and cream HRT's were out there.
I take biohrt (but not levo - T3 only) - but there's very little estrogen as I don't need much - mostly progesterone and some DHEA. I wouldn't be without it. However, the usual horse pee and fake progesterone which is more like testosterone (chemically) is not good for you at all. Estrogen should be taken well away from levo as it can bind it and stop it working.
I think I originally went on the HRT as I kept going back to my Doctor saying I wasn't feeling right, so at menopausal age I was put onto HRT, when maybe it was all Hypothyroidism, but I do remember 'drying up' everywhere and hot sweats, so maybe HRT was OK at the time ?
Can I ask why you would need and how would you know you need, less estrogen AotN ? and also what is the progesterone and DHEA for (also what is DHEA please.)
I am on Elleste Duet 1mg, so I am guessing it is the synthetic horse pee HRT. ?
Many thanks mazb, amazing readings, I have had a quick look and on just your first link I was slightly shocked, but not surprised that my HRT estrogen pills might have started off my Hypothyroidism in the first place, (I was also on the Estrogen birth control pill for many years,) but reading that by using Progesterone creams and halving estrogen some patients of Dr. Lees have even come off of their thyroid medication, is encouraging reading.
Thank you, have noted your tip of needing more progesterone, (not synthetic) which helps T4-T3 conversion.
From yesterday my eyes have reddened, felt extremely dry along with a deep pain, also I still have a constant heavy headache, (I rarely have headaches,) so wondering if I am experiencing a sort of cold turkey effect from leaving off HRT.
I wouldn't recommend anyone coming off their thyroxine really (I did, stupidly, once, and the effects, the damage that was done, was really bad - (some irreversible I believe) - I went 'off the scale' (the doctor called it) - TSH 99+
- but dose adjustment might be necessary IF Progesterone was helping the thyroxine to work better (as it may be for me, but I am not sure this is always the case - as sometimes I forget to apply the cream consistently).
I'm on 175mcg thyroxine daily.
I think there are various reasons why someone is hypothyroid
- for instance - my first pregnancy and childbirth in '89/'90 triggered mine (although I strongly suspect it was dormant before - which is what a typical case history can show, as I found when reading a book on it).
But, even that is to do with oestrogen, as in pregnancy the body makes more oestrogen to sustain the pregnancy, and the fatty tissue, even 'makes' or produces oestrogen I believe.
I just wish I had had sufficient progesterone back then - I suspect I hadn't.
Is your progesterone cream by prescription only mazb ? If so is it easy to persuade your GP to prescribe it ? or do you source it uk or abroad ?
My Doctor last said she wanted to put me on a newer lower dosed HRT pill, I said I'd think about it, (to give me time to think if it was good idea or not,) so at least we are on the topic of HRT at my next appointment, when the dreaded summons to see Doc comes up on my repeat prescription.
Many thanks for the three links, I have read them all and I think all women on HRT (Estrogen) and Thyroid treatment need to be warned about their effect if used together.
I get it through Wellsprings - it's called Serenity - (not sure if I can/am allowed to put the link on here, maybe you could Google?)
they also do another version with 1 part oestrogen to 20 parts progesterone, for those who really do need some oestrogen.
As far as I know I have not had a hot flush yet, (had night sweats a little bit, although never sure if that is to do with drinking sometimes )
-and I'm 55 and 2 years past my periods ceasing, so I don't think I need that one (yet).
They are based in the U.K. but in Jersey, or Guernsey I think (Channel Islands), as I think this might keep the price down (maybe for VAT reasons - not sure), but it means postage is above average - and you have to allow at least a week for delivery.
But I do notice the difference for using it - things like getting rid of water retention and breast tenderness too, and helping to sleep slightly deeper.
Oh edit: I do want to ask my GP if they will prescribe it - as at least 1 person (on the Facebook Wellsprings Page) has managed to do this.
But I rarely go to the docs because of exhaustion (ironically) and stress because of family issues in the last couple of years which are time consuming, and foot/leg lymphoedema making it hard to get there.
I have just ordered Serenity mazb, but will have to work out how to ween myself off of 1Mg Elleste Duet, did not realize I was taking part estrogen and part progesterone, I thought it was an estrogen only pill, Dr prescribed it at the time and I just took it.
Channel Islands sound a good place to buy from, you don't have to worry about buying over a certain amount like you do overseas, so hopefully easier to work out despite higher postage costs than in the UK. Have been already 'Googling' Prog and prices on line, but never know if it is the genuine item or not, some names look promising, but might only have small amounts of real Prog in them.
I will ask my Doctor about it if my experiment of coming off HRT works, as it will be cheaper, I feel more normal today thank goodness, but eyes still dry,with deep pain, one of the main reasons I worry about coming off HRT as Estrogen I believe helps lubrication in all areas.
Can't work out if my eye problem stems from Levo, HRT or just old age. (a year younger than yourself mazb, though when I forget to take my low dose ABC vitamins, my eyes play up, definitely something causing it that I can't get to the bottom of 'yet.'
Could do with a big survey done for women patients with HRT/ Birth Control (or both) & Thyroids to see if it Estrogen that is causing a problem with women's thyroids.
Sorry to hear of your stressful time mazb, I understand 'time consuming' helping others, think I might have a similar Tshirt to yours, does your T shirt also have 'The Sandwich Generation' written on it by any chance ?
Might be worthwhile seeing your Doctor to get some bloods done if you say you are exhausted too. ?
I also feel very strange on eastrogen, panic anxiety, sweating more than usual, I take 50/75 mg levothyroxine have done since I was diagnosed with menopause and hashimotos 4 years ago, looking back to my childhood I was always ill, 2 weeks before my cycle was due sweating a lot panic and anxiety, hundreds of anti depressants, therapy, nothing helped and I carried on for years, I have coil fitted for tiny amount of progesterone, and use ostigel so it's there on sin all day, my temp is 34.6/35.6 which is low, my gp thinks this is fine, I am shaking with cold and burning on my face, think will have to come off hrt again.
Go careful coming off the HRT Scampi1, I have now gone back on my estrogen HRT as coming off it too quick was a mistake, I had more hypo symptoms rather than menopausal symptoms. I know both the HRT and Levo have effects on one another so I take them at opposite hours of the day so they don't fight against each other.
Sorry, I don't know anything about how progesterone works with one's body, only estrogen, maybe you would be much better on the Natural Desiccated Thyroid, (NDT) instead of the synthetic levo, I am trying to get onto the NDT stuff myself.
Also you speak of anxiety, panic and sweating, ask other members if these symptoms are adrenal symptoms ? (though I might be wrong.)
Sorry I can't input much, but hope you do sort it all soon.
X
I recently stopped my estrogen and I take 50 mcgs of Thyroxine per day. I've lost weight as I've no appetite, can go all day not even thinking about food. My energy levels are most definitely down and I'm feeling very anxious and my eyes have been very sore, gritty, and bloodshot. Optician says I've developed dry eyes. All in all I wish I'd not come off the estrogen at all so I started to take it again although I guess I should visit the doctor just to let her know what's been happening. I don't like visiting doctors, I've a bit of a phobia....my blood pressure always goes up when I visit her.
Hi Poet, 2 years down the line and I am on NDT and feeling great, 50mcgs of T4 sounds very low and like you are in need of far more, 50mcgs was my starting dose. I kept asking my Doctor to go by my awful symptoms and not my unreliable blood results, you must ask for your Levo to be upped if you are still feeling crap and not feeling hungry all day.
I too had dry eyes, gritty and bloodshot and painful too, (felt like my eyes felt tired too,) been to see eye specialist and even ENT/ears nose and throat (couldn't work that one out either,) and optician, but all said nothing was wrong with my eyes, apart from a little bit dry, now wondering if my dry eyes might be down to B12 Deficiency, (though I do supplement, but maybe I am not getting it through to my cells as many find if they have gut issues, so need to get something sorted.
I now buy Bio Identical Progesterone from wellsprings (called twenty to One) it has a a little natural estrogen in it and it has helps my eyes a bit, but 20 to 1, I can vouch is brilliant for dry vagina or VA (Vagina Atrophy.)
I am the same at the Doctors, I get very jittery now. Do Google 'white Coat Syndrome' when it comes to high blood pressure at the Doctors, but normal blood pressure at home. I would never take blood pressure pills, do check out 'The Dangers of Blood pressure Pills,' yourself poet123, (Note- If you are on blood pressure pills, never come straight off of them as it can cause a heart attack.)
Update from Poet123 - just to let you know so it may help others, I had my blood checked and my thyroxine levels are supposedly correct but have been back on the Estrogen for about 5 weeks now and my eyes have improved. I actually woke up this morning and didn't have to reach for the eye drops! Coundn't believe it! I have been taking vit A and carotene but I would guess this is down to the estrogen. My appetite has also returned and I think I've put on a 1lb although it's difficult to tell as weight can fluctuate within 3lbs or so but feeling loads better, ,thank you
Hi poet123 i am on premarin which i believe is all estrogen as well as 100mg levo i always feel so ill and like u do not feel like eating in fact it makes me feel sick when i do start to eat and again i suffer from dry eyes i was not aware any of this was connected to the hrt/ thyroid .....just thought it was me so i just wanted to say thank u for writing about it really makes me not feel alone.
I have read these posts with interest. I am having such a bad time. Hoping to be referred to an endocrinologist. I am almost 55, about 7 years ago I was diagnosed with fibromyalgia, two years prior to that I had been told that I had hypothyroidism. I have been taking 125 mg of Levothyroxine for years now. After struggling through years of fibro I asked a doctor if I could try HRT, as I had been shown to be perimenopausal via blood test I wondered if my fibro symptoms were because I was perimenopausal and one of those women who was having a hellish time! I was desperate and wanted to see if low dose estrogen gel 0.5 would help with symptoms ( aches,brain fog etc). So since March 2015 have been using Sandrenna gel every other night and for me it took practically all my symptoms away life felt good again. Time passes and I need a hysterectomy as had fibroids, hyperplasia and prolapse !! 1st October 2016 had my womb removed but kept my ovaries. Concerned about issues of taking HRT without progesterone ( had had a progesterone coil previously) decided to use Wellsprings bio identical Serenity cream to balance estrogen . All this of course totally without proper advice from a Doctor. In last three months I have progressively felt bad and wonder if something I am taking is causing this. No energy at all, beginnings of sore throat always present. Dry sore eyes, such tired eyes! Dull headaches and awful aches in my bones and muscles it feels like dull ache after experiencing an electric shock just to give you an idea of the feeling, constantly so tired and feel unwell . I take my Levo before bed ( and have done since last October) as I read a lot of people find that better apparently it is absorbed better in the absence of food and vitamins which are often taken too close together in the mornings. I have just read your info about not taking HRT and Levo at same time and realise that on alternate nights when I use Gel HRT I also take my 125 mg of Levothyrixine ,.,.... Could this be the route of my problem? I will use Sandrenna gel in mornings now and Levo at bedtime and report back. In the meantime I have Doctors apt . Tues 28th and want a referral to someone who really knows about hormones and thyroid issues wish me luck and any advice is so welcome thank you.
So sorry you have been through an awful time. Do post your 'journey so far' up again for others to help you too.
My First thoughts, since being diagnosed as Hypothyroid, were you on your optimal dose of Levothyroxine ?
*Have you ever asked for your Thyroid blood panel printout from your doctor and posted it up here on Thyroid Uk, like many of us do so daily ? (well worth doing so for other members to help you forward.)
*You mentioned Fibromyalgia, were you aware that Fibromyalgia is a listed symptom of both Low Thyroid (hypothyroidism) and Vitamin B12 deficiency ? Both list of symptoms are very alike. Both have aches, tiredness, brain fog etc., you can have both Hypo and B12 Def. together.
*Also have you had vitamin D, vitamin B12, iron, ferritin and folate checked ? (The famous Five, a thyroid Uk member named it )
These too can be the cause of many problems, they were for me.
Electric shocks can be down to B12 Deficiency. I had electric shocks and tingling myself.
I no longer take HRT 'cos of the breast cancer link, I now take the wellsprings bio identical hormone, twenty to one (has a tiny bit of oestrogen in it which helps dryness in my dull/tired eyes and also dryness in my vagina too.
I am not familiar with sandrenna gel.
I would be asking for an up to date full panel of thyroid bloods:-
TSH,
FT4
FT3
Plus the 2 Thyroid Antibodies tests and the Famous Five for a full Thyroid picture.
I found members on here more helpful than any Doctor, through the TUK members I managed to learn to take control myself. There is a lot to learn, but it soon all fits into place. Fibromyalgia, tiredness, brain fog etc. can be curable, mine all was once optimal on Levo.
I had to keep asking my doctor to up my Levo, if i hadn't have done so I would still be ill.
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