I was diagnosed as underactive over 15 years ago (autoimmune) and, as consultant originally explained, I needed to increase levothyroxin dose over the years. For the past few years I've managed reasonably well on 175mcg in winter and 150mcg in summer. I started HRT a year ago and read that thyroxin may have to be increased, but the opposite happened and had to reduce due to palpitations etc.
I'm currently on 125 mcg Levo and have been struggling over the past year to balance things. My TSH is very low now (less than 0.05) and my T4 has been too high on the last couple tests (21.9) May and similar recently.
Due to blood test results GP, has advised to further lower Levo dose (100mcg) twice and both times, I've ended up with chronic fatigue, unable to get off the sofa or out of bed, chest pain, anxiety etc. I'm now back up to 125mcg and waiting for Endo referral as GP has said they need advice.
Has anyone else had a similar experience, either with or without HRT use? Would be grateful to hear others' experiences.
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Apollo1
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125mcg down to 100mcg is a huge drop. I'd not reduce by more than half a tablet, 12.5mcg to see how it felt. What are your FT3 results? I am guessing they didn't look?
I take 2 pumps of Oestrogen Gel every day - onto the skin.
I initially tried Levo 125/100 alternate days but (more slowly) felt unwell again. I don't think they tested T3 so hopefully Endo will do that. Trying not to get hopes up that Endo will be able to enlighten me!!
Strongly recommend you get FULL thyroid and vitamin testing BEFORE consultation
Which brand of levothyroxine are you taking
Do you always get same brand
What vitamin supplements
Retest bloods 6-8 weeks after any changes
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I found I was more stable on TEVA so always have these. I'm taking B12 as test was lower in range (321 ng/L). Also just got Magnesium Maleate for energy and muscle support as feel so weak.
Always have bloods taken first thing with no food or thyroxin since previous morning. GP said I can have blood tested every 8 weeks in meantime, but earliest I could get Endo appointment is March 2024 (considering requesting private appointment but seems like it's still pot luck as to whether they will do anything other than look at blood tests and amend med levels accordingly). In the meantime (as prob with many others here), I'm worried there's something more sinister going on.
Thanks so much for taking the time to send links etc. I'll talk to surgery about testing T3 and vitamins, but seems unlikely. Will have a look at the links - thanks so much!
Thanks - will arrange private tests and have a look at private Endo list. Just can't understand why I would need to keep reducing Levo after so long of gradually increasing. Thinking about stopping HRT for a while to see if I feel better.
Yes I'm intolerant to cow's milk and also switched to Teva as was taking 3 different strengths and it was easier/safer to get the mix right due to colour coding of packs.
also avoid soya due to reported affects and very careful around taking Levo 1st thing with water and not eating anything for an hour or more afterwards
It's just baffling why Levo would have to be reduced so drastically (175mcg to 100mcg) after being stable on that amount for so long. Everything I find says that as thyroid deteriorates, more medication will be required....can't believe it's all down to HRT but considering stopping that to see what happens
As I was going through perimenopause, over a years-long period I had to gradually DEcrease my levo...and I couldn't understand why after being on a steady dose for so many years. As it turns out, estrogen takes up some of the receptors so when your estrogen is high, you need higher levels of thyroid hormone to give the same effect...but as estrogen levels naturally decrease you need less thyroid hormone to achieve the same levels as before.
Even though you're on HRT (but likely not much since it is topical and not oral), your natural levels are apparently still decreasing (though you didn't give your age). You need to get lab tested and find out exactly where you are thyroid-wise. Didn't you say your TSH was very low? Perhaps you're tired because you are HYPER and indeed need to lower your thyroid hormone dose. But also get your FT3 levels tested to see if you need liothyronine to balance out. Good luck!
Thanks for that. I'm 53 and TSH very low, T4 high and everytime I try to decrease Levo, I feel dreadful. I obviously need to get all including T3 checked.
I know that oral hrt can have a profound affect on your thyroid levels, it did me, hence why I switched to the Oestrogen only patches due to having the coil fitted. Not sure about the gel, would have to research that abit more but will assume they are like the patches and don't due to being put directly on the skin. The patches work well for me, change twice a week and they stick very well with no sensitivity to my skin which is a massive bonus, if they had I would of tried the gel.
I'd recommend getting B12, folate, ferritin and vit D tested. All of my levels of these have tanked this year, and my TSH went low over the same period before improving a bit (but not to my previous 'stable' level). B12, ferritin and thyroid are all intrinsically linked, so it's worth checking out. Good luck!
I’m on HRT and Levothyroxine I can’t say at this point 3yrs in I have had to increase or reduce my thyroid meds due to the hrt.
Firstly find a good GP regarding peri/menopause and hrt, and in my experience increasing your hrt may of been first thing to do, with guidance of your GP as she has all your health history to make that informed choice with you.
Palpitations are also a perimenopausal symptom… and if you was stable on thyroid meds before the menopausal situation kicked in it’s more likely your menopausal symptoms need addressing as you progress through menopause and need few tweaks there…However absorption rates with hrt differs with skin types. There’s been a new article on absorption of transdermal hrt on Dr Louise Newsons Instagram page and maybe it’s on her Balance app/website too if you don’t have any social media accounts.
If oestrogen is a problem (excess) regarding your thyroid it’s worth testing thyroid binding globulin (TBG) this will be high in this instance and therefore be restricting thyroid hormones available causing hypo symptoms …I don’t think many endocrinologists are as well informed or as good as some specialists GPs in respect to HRT - they should be but unfortunately as many find with thyroid we are stuck with TSH obsession and lack of compassion in these areas and symptoms can’t be there as TSH is in range 🤦🏻♀️
I know once something goes out of whack it cascades in other areas with hormones … there’s several types of oestrogen in our body and some we need to remove and prevent circulating … diet including fibre and phytoestrogens and exercise can help eliminate the bad oestrogen’s. The HRT version of oestrogen has beneficial benefits and like thyroid we have receptors all over which require these to make us feel well … balancing is key not easy in the transitional phase as our hormones are on a rollercoaster so testing isn’t always showing exactly what is going off … stress sleep play big parts too it’s not just exercise and diet.
Are you on any other supplements or medication that can also upset your thyroid, there’s a few known to.
Hi,I take hrt aswell as levothyroxine. Ive never felt well on levothyroxine. (had Graves /Rai) After advice on here I had private testing showed my vitamins/ t3 all low end. Endo only focused on Tsh so he suggested hrt hoping that would help. I started out with gel and utrogestan tablets, but after about a month I felt dreadful. 2 months on and my Tsh had crept up from 2 to 4, my face was puffy, I felt terrible. I changed to combined patches and have very gradually increased my levothyroxine. (dose changes kill me I've learned!)
Ive also recently added in testosterone gel which has helped massively aswell as taking all my vitamins. It's taken a year to feel a bit more settled since starting the hrt though and adjusting doses. I also found taking only one brand of levothyroxine helpful. Previous I would get different brands each time. It's been a tough year. I hope you can fast track your endo appt. Keep calling them and pushing the gp.
Hello. Not sure if it helps you but I am hypothyroid, 52 and I take 150 Levothyroxine, 1.5 pumps of Oestrogel and 2/3 of the average dose of Utrogestan, (as full dosage was making me retain water etc). I feel a bit more tired, and my bloods show high T4, but my T3 isn’t more than half way through. I don’t get heart palpitations since starting Levo.
I do think that Oestrogen and T4 compete in terms of the way the body carries them around the body, so the process is imperfect.
If your T3 remains on the low side you will feel more symptoms of hypothyroidism. I managed to say to my GP that I would take responsibility for my T4 being slightly over as my T3 was still mid range.
At some point I might have to take T3 separately or stop taking the HRT.
Keep doing the blood tests, taking the supplements, rest and look after yourself, I believe stress is a big factor.
It would be good to find someone who is expert in the female hormone interactions
Have you had your estrogen levels checked, it always amazes me that docs dish out HRT meds but rarely test to see if it’s in range. What type of estrogen are you on ie what brand and how many mg. Generally speaking estrogen lowers thyroid but I can see how that applies if taking thyroid meds
Testing estrogen is a bit of a grey area , but some docs do it sometimes. My partner is on HRT and other hormones re private GP who was trained by Marion Gluck team. When she gets bloods they always test all the hormones. Hertoghe says it’s not too reliable but he does test it sometimes especially if the patient is having problems getting tuned.. In a young person the estrogen level fluctuates a lot but in a post menopausal person it fluctuates much less because some have minimal natural production hence testing is more useful.
Many that start on HRT regardless of age are still perimenopausal. I’m 57 still perimenopausal been on hrt 3 yrs cyclically and only just trying continuous hrt, this is all based on my symptoms my GP prescribes based on the menopause specialist Dr Louise Newson information which was provided for the NHS guidelines… the blood tests are very unpredictable, symptoms are what most NHS GPs go by…,but tests are used as mentioned previously.
I did say post menopausal. No disrespect to NHS GP's or the NHS hormone guidelines but in my experience and partners they are even less useful than the thyroid advice GP's in the NHS dish out.
I agree with you on few areas re NHS fall back on, and I know a few healthcare professionals & GPs have same view, but their hands are tied in some cases having to follow guidelines, some so outdated… I myself go private for most of my consultant based consultations.
I must be lucky to have several on the ball GPs regarding menopausal situations at my surgery. I realise some aren’t as lucky, but free menopause prescribing seminars was available for every doctors surgery in most of the U.K. it begs belief why people are having to pay privately and for thyroid for that matter…it’s a shamble.
You mentioned,
“In a young person the estrogen level fluctuates a lot but in a post menopausal person it fluctuates much less because some have minimal natural production hence testing is more useful.”
Sorry, I assumed from that, that if someone was young they’re perimenopausal with fluctuating levels, and if old (er) they were post menopause, and possibly testing was more useful🤷🏻♀️
and also you mentioned originally,
“Have you had your estrogen levels checked, it always amazes me that docs dish out HRT meds but rarely test to see if it’s in range.”
I guess another assumption of mine is that I assumed you knew this lady was post menopausal or that people who go on hrt are, as you mentioned “hence testing is more useful.”
Just to clarify where I may have got mixed up with what was written…although it doesn’t take much, blame those perimenopause hormones 🤭
At the age of 57 it is often classed as being post menopause, many assume after a certain age you are, or can’t be still perimenopausal or if even 30 or younger, but it’s really is a very individual thing … I definitely won’t be post menopause come my 58th birthday. I’m definitely classed as late onset menopause.
Another thing altogether is a Dutch test!
Unfortunately, NHS don’t use Dutch test and needs to be ordered through a functional medicine practitioner or nutritional therapist.
The reason Drs don’t do blood tests for menopause/hrt is because our hormones aren’t stable they rollercoaster even throughout the day in instances so getting a test maybe ok one day but not the next…,the guidelines state that they go on symptoms over 45. They do test occasionally to adjust dose but it’s very difficult to predict.
We also make oestrogen in fat cells this can recirculate this isn’t the good protective oestrogen we need to excrete this… use it then lose it.
The hrt is estradiol this is the beneficial oestrogen that protects … we all seem to forget progesterone this is supposed to be the calming hormone (hence many take at night) although seems many do have a few wobbles with it. Oestrogen dominance is sometimes thought of as having excess oestrogen, where in many cases it’s lower progesterone and the ratio is out, so not enough progesterone making oestrogen higher, not necessarily having high levels of oestrogen. progesterone is usually first hormone to decline in perimenopause and a hormone that is produced in adrenals and ovaries and many with adrenal fatigue struggle with lower progesterone levels.
Low levels of oestrogen seen in perimenopause can cause palpitations but there’s many other reasons and other hormones that can cause this too.
I have been on HRT for ten months and TEVA for nearly six years. When I began the HRT I increased my dose from 100mcg to 125mcg. A blood test I had with Medichecks in July showed similar TSH and T4 levels to yours. I am currently taking 125mcg and 112.5mcg on alternate days (thank you for the advice SlowDragon!) and testing in a few weeks to see if this improves things. It's frustrating I know when you feel okay for a while and then have to faff around with doses.
I personally wouldn't stop HRT. It might be you need a different dose or type possibly.
I would definitely take SlowDragon's advice and have a full thyroid and vitamins test before you change anything. Medichecks are currently doing this for £73 instead of £86.
Thanks. I'm definitely going to get private tests done. Do Teva do a 12.5 tablet or do you cut a 25 in half? I'm staying on HRT gel for now but trying a lower dose. Fingers crossed, this will keep T4 from going any higher and keep the GP's away from forcing me to 100mcg Levo
I cut a 25 in half with a pill cutter. I bought a Safe and Sound one from Amazon but I have seen them in the local chemist. They cost around £4.
Teva do produce a 12.5 tablet. I'm sure I've read on this forum that they are expensive so I'm happy to cut in half, especially when I'm doing a trial run! Good luck.
Here's something that might be pertinent, Apollo 1:
I started an HRT patch yesterday. The endocrinologist wouldn't prescribe, but I talked a primary care doctor into a trial, to "prove" that estradiol would be of no help for my sleep disturbance of long standing.
The endocrinologist had warned that the thyroid hormone dose might need to be increased, but did not say why. I take NP Thyroid (NDT).
Yesterday, the pharmacist who dispensed the patches and progesterone pills said something very important that might be relevant to your situation:
"When you first apply the estradiol patch, do NOT do it around the time of day that you take your thyroid hormone. "
Apparently the estradiol sucks up all the thyroid hormone it can get its little hands on as soon as it hits your skin.
Your plasma T4 might fluctuate according to when you apply the cream.
And of course, apply the patch (or the cream) to a different spot on the body each time.
That's very interesting, thank you. I searched online before starting the HRT gel and couldn't find anything about it affecting thyroid medication - only if HRT is orally
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