Levo and hrt : hello has anyone experienced... - Thyroid UK

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Levo and hrt

Prosecco1997 profile image
41 Replies

hello has anyone experienced problems by taking hrt gel patches with Levo , I’ve been feeling ill for ages now light headed , weak legs tired and very down , just trying to rule things out to feel normal again as I can’t go or do anything without feeling like I’m going to pass out Doctors don’t know what else to do now , said get some activities to do , great advice 😟my levels on March 22nd

Serum TSH level 1.1 mu/L [0.27 - 4.2]

Serum free T4 level 16.7 pmol/L [12.0 - 22.0]

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Prosecco1997 profile image
Prosecco1997
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41 Replies
Obsdian profile image
Obsdian

I am on hrt (estrogen gel, progesterone tablets). I started hrt before having hypothyroidism though so got to know my body's reactions and what to look for. I am currently prescribed all the dosages so I have access to change as my body fluctuates regularly.

I am not having the same issues as you arw but I do know when estrogen drops do does tsh, and when estrogen increases tsh goes up too so watching your levels is important m

Prosecco1997 profile image
Prosecco1997 in reply toObsdian

Thankyou , I have stopped mine for now , as I’m not feeling well , just wondering if my levels are ok , I want to start it again but not sure if it’s making me feel the way iam ?

Obsdian profile image
Obsdian in reply toProsecco1997

Someone else will come along with more experience to look at levels.

Something else though. I have followed a youtube channel for some time by Kari Ann Wright who talks about everything menopause related and is good at telling what is normal and what isn't. However, there is nothing adding the complexities of hypothyroidism to that.

Prosecco1997 profile image
Prosecco1997 in reply toObsdian

Thankyou , I will have a look at that

Summerage11 profile image
Summerage11

Hi, I am sorry to hear that.I experienced the very same when I was using the patches.

I came off the patches as it did not work for me at all. My nurse put me on tablets, but it does take a while for you to find what works best. Talk to your Doctor/Nurse again.

Beautifulmagnolia profile image
Beautifulmagnolia

Hello, I’m sorry to hear you’re feeling unwell on hrt.

It was suggested by my endocrinologist that all my levels were fine and why … wasn’t I taking hrt. When I started taking it, I had lots of lower back and pain around my ovaries. My gp said I must have undiagnosed endometriosis.

During my time with an under active thyroid., it have learnt that it is a very complex illness.

The doctors are interested in blood results and the levels being within range.

However, each day is a different day and its difficult to know how you’re going to feel.

I guess what I’m trying to say is…. Try everything medication, change your diet, take a walk if you feel up to it.

Most importantly, take your time, rest when you need to, do things in moderation and remember there’s lots of us experiencing similar issues with you. You’re not on your own.

Lean on your friends & family.

Be kind to yourself and take care. X

Prosecco1997 profile image
Prosecco1997 in reply toBeautifulmagnolia

Thankyou , I’m just feeling very down at the moment , just trying anything to feel better , my heart medication is making me feel awful also after 13 yrs ? So realy struggling to find out what to do for the best

Beautifulmagnolia profile image
Beautifulmagnolia in reply toProsecco1997

I know you are struggling lovey, most people are one way or another.

Just ride the wave.. it will get better.

When I feel awful I do one of 2 things…Get in the garden, just sit for a while if I don’t feel up to it or try a word search or crossword. I have been known to do more than 5 in a day 🤣. It does help to take your mind off things.

May be you should try it ?

Take care of yourself x

ThyroidHashi profile image
ThyroidHashi

My wife is also hypothyroid and has been on HRT patches for over 30 years. She has been told to stop the HRT but, when she tried, she suffered from deep depression, increased bad cholesterol, increased blood pressure, and general worsening levels of most indicators, so is now on the smallest, 25 patches. She took NDT for a few years, then went to T4/T3 but is not aware of specific negative interactions. I've asked her to read your post and respond .Just be careful with the negative cardiac sequels of quitting HRT cold turkey.

Prosecco1997 profile image
Prosecco1997 in reply toThyroidHashi

Thankyou , yes I’m feeling very depressed and I’m on cholesterol tablets , also heart meds which are making me feel ill also after 13 yrs ? It’s all so very confusing on what to do , can I ask what cardiac sequels I might get

ThyroidHashi profile image
ThyroidHashi in reply toProsecco1997

My wife experienced significantly higher blood pressure, as well as more frequent episodes of atrial fibrillation when she stopped HRT.

Both improved when she resumed with the patches.

ThyroidFrazzled profile image
ThyroidFrazzled in reply toThyroidHashi

It is a real struggle to balance thyroid issues with HRT and this is the situation I am in. However there is no medical indication to stop HRT at a certain age - there is a podcast episode with Dr Anna Chiles that discusses exactly this - you will find it on the Newson Health website.

I hope I am not breaking group rules to reference it here.

Suzanneharb profile image
Suzanneharb

I’m not on hrt yet but may soon. I’ve been researching and my understanding was that an increase of thyroxine is needed in the gel types of hrt. Do a bit of Googling. It’s something to do with what’s going on at a cellular level, so not sure the blood test route alone is helpful. A bit like when you’re pregnant your dose is increased straight away without blood test needed

Shazy-B profile image
Shazy-B

Hi 👋🏼 can I ask what dose and brand patch you are on please? It could be that you’re not on the correct dose. Are you perimenopause or post menopause? I was having awful issues with dizziness, vertigo and increased migraines which in turn was making my anxiety so much worse, my GP suggested that my patch was too low at 37.5 so increased it to 50 which has made such a difference. My TSH has been absolutely fine if not a little suppressed but I’m good with that, I am religious with taking my Levo, same time, same brand (Accord 100mcg) nothing to eat or drink for an hour after taking it, no other meds or supplements for 4 hours after taking it. Also it may be worth looking into which HRT you are taking Estrodial is derived from Soy and Evorel is derived from Yams, now I’m not sure how true it is and how much it actually would impact on us but allegedly “we” are supposed to avoid soy products. Now don’t get me wrong I’m still suffering with joint pain, weight gain, tinnitus and a few other little bits and bobs namely low libido tmi I know, so maybe I still need some tweaks with mine and I’m currently looking into whether I need testosterone too. But I’ve found with these things you have to do pretty much all of you own research and then approach a very nice, understanding menopause aware GP for help.

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

Hello I was put on hrt to help with mood , but I’m perimenopause now , I use these 2 together ,but have stopped just recently, I was having bad stomach tightness and I think it was the gel ? I also have used these everol 50 patches with the gel 75 strength in total

Colour
Sparklingsunshine profile image
Sparklingsunshine in reply toProsecco1997

I recently tried the patches and they were rubbish. I was on HRT tablets and doing ok on them for years. Then I started seeing a lot of negative stuff in the press about HRT tablets increasing the risk of cancer so I thought I'd try the patches.

Mine kept falling off, they were absolute crap. I didnt fancy trying another brand or fannying about with gels, so I went back on my tablets again. Maybe the patches dont suit you or maybe the dose is wrong.

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

So maybe the gel as made from soy was giving me stomach issues , Thankyou

Shazy-B profile image
Shazy-B in reply toProsecco1997

I honestly couldn’t say but it’s worth changing to see if a different brand helps, it’s the same with Levo sometimes we have to keep trying different ones to see what suits us best.

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

I take my Levo at 7am , heart meds 2 hours later , but does it matter do you think that patches for hrt can not be separated with time limit , as we can not take them on and off ?

Shazy-B profile image
Shazy-B in reply toProsecco1997

It really shouldn’t matter what time you apply/change your patch as it’s absorbed through the skin into your bloodstream rather than through your digestive system.

Catnutt profile image
Catnutt

Hi I had the same problem I was prescribed hrt which was to strong so it stopped my thyroid medication from working. I'm now on a lower dose of hrt and feel much better. Perhaps you should talk to your Dr as don't forget thyroid medication and hrt are both hormones and if one is to strong its going to affect the other. Hope you get it sorted and feel better soon 🙂

Prosecco1997 profile image
Prosecco1997 in reply toCatnutt

I have found my throat does not hurt so much since stopping hrt , it would hurt with every breath and footstep , maybe I should just lower dose as I want to be back on hrt

Shazy-B profile image
Shazy-B in reply toProsecco1997

So you’re on Estrodot which is Soy derived, I would ask for Evorel 50 on its own without the gel to see how you get in with that, or maybe just use the gel alone for a while adjust your pumps as you feel necessary…its all trial and error I’m afraid until you find what works/suits you.

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

I think I will give the soy based ones a miss , go back to everol , Thankyou for your help

Shazy-B profile image
Shazy-B in reply toCatnutt

I experienced this years ago when I was on tablet form HRT, before knowing that Levo should be taken separately from anything else and yes they were cancelling each other out hence why I was switched over to a patch. As far as I’m aware patches shouldn’t interfere with your Levo

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

Can I ask which patch you are on , I also am suffering bad with vertigo and dizziness , realy started to worry thought I had something else wrong 🙄

Shazy-B profile image
Shazy-B in reply toProsecco1997

I’m now on Evorel 50 and my dizziness has subsided which could be a coincidence as sometimes it can be an anxiety symptom, just out of interest have you had you B12/folate checked? If either of these are low they can cause dizziness too. What was your last TSH?

Prosecco1997 profile image
Prosecco1997 in reply toShazy-B

They checked them a while back , I do have some b12 but have to be careful what I take incase interact with heart med , but maybe good for my heart ? These are from March

Colour
Prosecco1997 profile image
Prosecco1997 in reply toCatnutt

Hello can I ask what dose you are on

Catnutt profile image
Catnutt in reply toProsecco1997

Hi yes of course. Currently im taking tablet form Kliovance hrt which is 1mg of Oestrogen and 0.5mg Progesterone. Im currently taking 125 mg of Levothyroxine. Ive taken several different hrt's since i was prescribed it 5 years ago but found this one to be the best for not having to bad side affects. I do get days tho where i feel completely worn out and get horrible headaches and just want to sleep all day, i think that must be caused by fluctuating hormone levels, I hope you get sorted out as its not nice feeling under the weather.

Obvs profile image
Obvs

Hello,

Can I ask if you have checked you're on the right level of Levo as your T4 looks a little low in range.

HRT can mean you have to increase your Levo. I personally found HRT made me feel low and I felt better after stopping. I need to do a blood test, but I think it was because of interaction of Levo and the HRT Oestrogen.

I hope you feel better soon.

Prosecco1997 profile image
Prosecco1997 in reply toObvs

Hello do you think I need to increase , sorry I’m not very good with all the level bits lol 😂 I was on 100 but dropped to 75 due to heart palpitations

Obvs profile image
Obvs in reply toProsecco1997

I believe heart palpitations can be because of low thyroid levels as well as high, but I’m not a doctor.

75 mcg is a low ish dose unless you are a very good T4 to T3 converter and you are very small build? Have you ever had a blood test for T3? It isn’t normally done on NHS but it is important. T3 level affects how I feel.

I recommend doing a fingerpick home test that includes TSH, T4 and T3 and come back with the results. Best to do the test before 9am, before food, 24 hrs after your last dose of Levothyroxine. Thyroid Uk have lists of companies that do it, I believe even some supermarkets do it now too. Of course you also need all your vitamins to be optimal to convert well too, but those tests can be done via your doctor, or annually privately.

I hope you find out what you need to adjust,

Topes009 profile image
Topes009

HI. I was on HRT and tried so many variations to get it right but couldn’t. I felt so unwell so much of the time. I tried Newson a few times and was given very bad advice (IMO)to just raise the oestrogen levels, also very sketchy advice with regard to the appropriate progesterone/oestrogen ratio. The high level of oestrogen they advised triggered rosacea to get bad to the point that I knew I had it, I was unaware prior to that but think it was there just very mild. I had extremely heavy bleeds with large clots, had to have a hysteroscopy due to unexplained bleeding, suffered massively due to progesterone intolerance, very dark and intrusive thoughts and I tried all varieties except mirena. My thyroid levels went loopy, my iron/b12 and folate etc all through the floor. So many side effects from the HRT (kept a diary of symptoms) that I stopped it. I’m now 4 months post stopping and feel so much better. I sleep better most of the time, don’t have the dark and scary thoughts and haven’t bled which can only help the iron levels. My endo is casual to say the least about everything and didn’t think HRT and hashi’s was anything to worry about and had no answer to why my levels had gone high other than to suggest, very rudely, had I accidentally taken two doses of my meds. Looking back at last year I’m amazed made it through it and doubly amazed I managed to maintain a full time job and kind of function outside of that although my activities were limited by feeling so unwell.

I would have liked to stay on HRT for the benefits, but it’s just not for me as it stands at the moment. I also feel there is a scary lack of knowledge and consistency in the health service to support us through this and if you throw in an extra illness it’s just beyond the help available.

I hope you can find a way to make it work, I know there are lots of ladies that it does wonders for.

ThyroidFrazzled profile image
ThyroidFrazzled in reply toTopes009

Absolutely true about the lack of consistency in the health service re menopause ! And as you say, if you throw in an extra illness - particularly thyroid-related - its really such a horrible struggle to get good advice. Glad you are doing better.

Prosecco1997 profile image
Prosecco1997 in reply toTopes009

Thankyou for your reply , I to have hashimotos thyroiditis, it’s a real struggle sometimes, I ask doctors questions , but they just look at me and always put it down to anxiety , I do to much google , sometimes you have to when you can’t get the help your asking for , and Thankyou for this forum 😊I told my doctor a while back I think I have have hashimotos, very unlikely he said , next phone call was well done thanks for pushing us 🙄

RhianR profile image
RhianR

Hi. I am the same, but not on patches. I'm Hypothyroid & Hashimotos like you (& on Levo 11 yrs & T3 3 yrs, although GP saw fit to recently withdraw 😠) + I have formally diagnosed ME/CFS (because of late Hypo diagnosis/11 yrs undertreatment courtesy of these endless NHS fools) - AND like you I struggle on HRT & still symptomatic 🙁 So I use the pump oestrogel & have a Mirena coil (to prevent the severe bleeding each month that I was getting on Progesterone tabs which was horrific). Frustratingly all my friends & sister on HRT (who are not Hypothyroid) all feel wonderful on HRT! Go figure. Sorry that I cannot advise you, but I just wanted to empathise with you so that you know you're not alone with this. You might find it better on tabs & gel or Mirena coil + tabs or gel or a combined patch. The strength of these things is definitely not a science, and we being Hypothyroid are not a 'standard' one size fits all approach which the NHS loves us all to be. I don't know how you were on Levo only treatment without the HRT, but if you were OK off the HRT, it is that which is the change and your body & hormones (like mine) is unhappy. Hopefully someone else on here will have a better solution. Unfortunately as with most of these things, the answer is not available via the NHS. Take care 🙂

Prosecco1997 profile image
Prosecco1997

I do not feel great on hrt , like your supposed to ? I realy just like the benifits of heart health cholesterol etc , and ment to help my mood ? I do have the marina coil aswell , iam retrying with patch everol 50 , as I was using soy based patch and gel , think may have not suited me after a while , Thankyou for your reply I hope you find a solution soon , I will keep updating with my progress

RhianR profile image
RhianR

Yes, do keep updated on any progress & Good Luck 👍

Sooty101 profile image
Sooty101

Hi Prosecco,I have just been reading about this, I will try to find the link. Apparently oral estrogen lowers thyroid hormones but topical estrogen doe not. Perhaps you could swap over. Just a thought

Prosecco1997 profile image
Prosecco1997 in reply toSooty101

Thankyou , I will definitely have a read if you find the link Thankyou so much 😊

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