Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: warwick01 on May 25, 2017, 11:21:36 AM
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Hi Ladies,
I seen Gyne Consultant week before easter. At that time was 4 month on Tiblone and suffering severe dizziness. He took my bloods and told me if things don't improve try Angeliq with Testo Gel, which I am 4 weeks into.
However received a letter this morning (6 weeks since apt) to say my blood results show:
Oestrodiol level undetecatable
Free Thyroxine 29.6 TOO HIGH
TSH level 0.06 significantly suppressed
Currently taking 125 Levthyroxine but he told me to reduce to 100mg immediately. I am really worried and peed off it has taken so long >:(
Can anyone give me advice ie should I ask to see a Thyroid specialist?? I just want to feel well.
Wxx
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Hi Warwick,
sorry to hear about the shock of the TFT result and the worry from hearing so long after the bloods were done. I wouldn't worry too much about this if your previous TSH was OK and not too long before this latest was done. If you may only have been on too high a dose of Thyroxine for this relatively short time, I don't think there's likely to be any long term damage.
Do you feel hyper/overtreated on the 125mcg with the Angeliq? I realise you've only been on it a few weeks & the Tibolone before that may have muddied the waters. I ask because I think the oestrogen in the Angeliq may raise thyroid binding globulin, effectively reducing the amount of thyroid hormone available for use in your body over time. If this happens, you may not need to lower the Thyroxine so much, if at all in the longer term.
As your oestradiol prior to Angeliq was undetectable, I'm wondering whether you were on HRT prior to Tibolone & your Thyroxine set at a dose to balance the oestrogen in that formula? If so, perhaps that would explain why the Thyroxine seems to have been too high while on Tibolone, which your bloods indicate wasn't increasing your oestrogen levels.
For now, I think I would take the gynae's advice & reduce your Thyroxine, especially if you feel you are having too much & would certainly contact your GP asap for advice about this & perhaps ask whether you can see an Endocrinologist if you don't feel confident that your GP can help you stabilise on both HRT & thyroid meds. I am on HRT, Thyroxine & T3 & know how tricky a combination hypothyroidism & menopause can be. Good luck with it & please try not to worry. Easier said than done, I know! :)
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Hi Wrensong
Thank you, you do know a lot about thyroid issues.
To be honest apart from the dizziness on tibolone I felt good. No hyper symptoms, which I had prior to Tibolone on 3pumps of oestrogel, oestriodol was 285pml.
The last 2 weeks I have started to feel a build up of anxiety again. I will reduce to 100mc and stick with Angeliq/testogel for a few weeks and see if any improvement.
Wxx
T
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Oh my goodness, Warwick! No wonder youve been feeling dreadful! I always wondered if it was thyroid adding to the mix too!
Sending you so many hugs - you've really been through the wringer! And DO come and join us on the Road Less Travelled thread - we've missed you!
xxxxx
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Haha Warwick - no don't be fooled - I'm absolutely no expert, have just been hypo for a very long time, so have a bit of experience, though not much of it good! Just an afterthought, my Endo (brilliant & right at the top of his tree) likes TFTs done 4 weeks after any change in either thyroid meds or HRT, though I like to stretch it to 6 weeks if I don't feel too bad, as I think I take longer to stabilise (& GPs sometimes prefer 8 weeks). Then consensus seems to be to repeat @ 3 months, but you probably know this already.
Because the change to Angeliq since the last TFT might have altered the clinical picture and now you are, wisely I think, reducing Thyroxine, I would try to make sure you have a TFT done no later than 6 weeks from now & before this if your GP thinks it wise or you yourself feel the dose is wrong either way.
All this juggling meds is hard on the nerves as well as the body & if you've noticed anxiety building, it does sound as though @ 125mcg the Thyroxine might have been too high, though with a new HRT regime I know, it can be so hard to tell what's causing what. Hope you get it sorted & soon start to feel much better. :)
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Tempest
You lovely lady ;) it was you that suggested getting my Thyroxine tested. Unfortunatly I didn't has I didn't feel hyper, no constipation (first sign when thyroid too low) it was only when I had my gyne follow up re Tibolone consultant tested.
Since taking Angeliq/Testogel dizziness %80 better but the churning tum, feeling nervious is creeping back. Will wait 2 weeks on lower thyroxine to see how thing are then.
Wrensong - do you mind me asking which HRT you currently take?? I was advised Angeliq/Testogel works well. I read Nick Panney and other consultants like this combined HRT.
Also when will I start to see improvements and do you think too high Thyroxine has affected my heart?? as I have been having palps the last 2 weeks.
Many thanks Wxx
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Wrensong - do you mind me asking which HRT you currently take?? I was advised Angeliq/Testogel works well. I read Nick Panney and other consultants like this combined HRT.
Also when will I start to see improvements and do you think too high Thyroxine has affected my heart?? as I have been having palps the last 2 weeks.
Warwick - I am on Evorel Conti patches which have helped to some extent, but haven't got rid of all symptoms & trials of other HRT combos have so far made things worse. Had heard that transdermal methods are less likely to interfere with thyroid meds, but have still had to adjust my T4/T3 several times since starting HRT, especially when Sandrena gel was added for a while, then discontinued. Endocrinologist agreed even transdermal HRT can alter thyroid status.
Oh dear - wish I knew enough to give reliable answers to your other questions, but can only speak from my own experience I'm afraid. If you mean how soon to see improvements in possible symptoms of too much Thyroxine, I really don't know, but when I was on Thyroxine alone (ie no T3, no HRT), I could usually feel a difference in major thyroid symptoms around 7-8 days after reducing/increasing Thyroxine.
If you mean how soon to see changes in meno symptoms as a result of the Angeliq - I think I could feel a difference after about a month of first starting Evorel, but it wasn't dramatic - hard to remember now, as around 21 months ago. Like yours, my oestradiol was below the bottom of the ref range when tested post-meno (but before HRT - not retested since) & they suspect I don't absorb well from patches which may explain why the response wasn't dramatic & why I still have residual symptoms.
Hopefully any anxiety, jittery tummy, hyper-type symptoms will reduce for you quickly, though I know from the forum that HRT can cause these symptoms in some ladies too. Goodness, it's all so confusing isn't it & so hard to unravel everything when thyroid conditions & meno are combined? With having had to reduce Thyroxine shortly after starting the Angeliq, I think this could make it more difficult for you to know which changes are due to which meds. You will already be very used to being patient with HRT changes & it's a right pain, I know.
I wouldn't think having had too much Thyroxine for just a short while will have had a lasting effect on your heart, but please do get in touch with your GP if you are worried as they are the best to ask. As you know, palpitations can result from too much Thyroxine & in my experience too little, as well! We also seem to be especially prone to them during the meno process & I have had a return of these very recently during a now abandoned trial of a different HRT regime, so for me they can be caused by gynae hormone fluctuations as well. My GP wanted to listen to my heart & gave me a quick ECG to check the palps out again & this was all fine - for me they are due to harmless ectopics, though when they come in long, persistent bouts & feel irregular it can be scary, I know.
I find that each change of meds, whether thyroid or HRT can really upset the apple cart and take a toll on the body, but if you can get as much relaxation as possible, try to divert worries by doing whatever feels good for you & focus on the thought the latest meds changes could make you feel so much better, I hope this will help you get through the adjustment phase & quickly too. Good luck with it - I will be thinking of you & willing it all to go well.
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All I can say is, bless both of your hearts!
When I saw my Endocrinologist recently to rule out thyroid issues, he said that balancing HRT with thyroid medication is indeed very tricky. Both need to be well monitored.
I think I mentioned before that a lady called Joesmum on the forum has problems getting her HRT right whilst balancing thyroid medication. She sees her Endo. pretty regularly I think. I would probably ask for a referral Warwick, as you have reason to do so after your recent test results from your Gynae. It could make all the difference! xxxxx
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This is the main reason why I chose not to go down the HRT route. I have enough trouble keeping my thyroid levels stable as it is ::)
When I saw my Endocrinologist recently to rule out thyroid issues, he said that balancing HRT with thyroid medication is indeed very tricky.
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Gosh, it is so hard BJ! I discussed this with the Prof. Of Endo. that I'm seeing (he doesn't dabble in HRT as he's focused on thyroid, adrenals etc). He said the thyroid should always be considered first and that steroid sex hormone changes whether it be from natural fluctuations during meno itself or HRT can greatly affect thyroid stability.
I know this is why wee Joesmum is having so many issues. I remember when another lady here went hyperthyroid from hypo. when she was on Estrogel too. It's a tough balancing act! xxxxx
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well T. I am 60 and post meno now. My symptoms have abated considerably. How I would have been on HRT I will never know but I opted for thyroid stability. I can still remember the months and years post Hashimoto diagnosis, it took about 18 months to stabilise (30 years ago) but it didn't last long. I have been up and down a lot over the years. since I have been with my current endo I have been more stable than I have ever been because he is one of the top guys in the country, so I wasn't willing to rock the boat or upset the apple cart or whatever.
If I get problems from not using HRT later on I will cross that when I come to it, I may not, mother didn't :)
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Neither my mum or my nan took hrt
Nan died at 85 of a silly thing that shouldn't kill anyone but she wouldn't tell us she was suffering, I never knew my nan to be ill
Same with my mum, never ill, energetic although the nurse said she had the worst prolapse she'd ever witnessed, like my nan she never went to Drs. When she had her brain haemorrhage we were told she had hours to live, she lasted 2 more days in a coma and Drs were amazed how strong her heart and lungs were, just goes to show x
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Yes, i think sometimes we can be so fretful of the future we miss out on some of the present. My life is stable now and I try to get the best out of it with my limitations. If things change I will deal with them as they happen :)
I fought my limitations for a long time, feeling guilty about them, but I am ok now, in a better place of acceptance with a supportive husband and family. I am fortunate :)
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Thank you Tempest. As said often before on MM, with breast cancer in the family, I would never have started HRT had I not been absolutely desperate by the time I eventually agreed, 3-years post-meno. Having tried to be patient and wait for symptoms to subside for more than a decade, my life still bore little relation to that before peri - I was absolutely burnt out from so little sleep & felt I was wasting away. Sound like a drama queen I know, but I actually felt that if this went on much longer, my body wouldn't be able to stand it & my future was not likely to be a long one!
Like Babyjane, I have a very good Endo, a Cons with decades of experience and on top of that he is simply the most lovely man. As he was the one to say "I want you to have some oestrogen", I took this seriously and reconsidered, knowing that in this lovely doctor, I could have no better ally to help me get better. That doesn't mean I think HRT is the answer for everyone & know it's sadly not a panacea.
Though there can be so much unexpected horror to come to terms with during the meno years, a lot of good has also come out of it for me. It's taught me to be so much more appreciative of even simple things I used to take partly for granted. Garden birds, a lovely sunrise or sunset, good company, a lovely walk & so much more. After the constant worry of palps for several years, when they finally went a couple of months after going back on T3 & starting full HRT, I was so relieved & grateful for every day I got through with a normal heartbeat! A menopausal madwoman overjoyed at a normal heartbeat- how sad is that?!!
Though still a congenital worrier, I don't think I sweat the small stuff in quite the same way & may now be as chilled as I'm ever likely to get! All sorts of things I hardly noticed before peri now give me so much pleasure & there seems so much to be thankful for. It's as if prolonged difficulty, stress, struggle, whatever you want to call it, increases the capacity for happiness. I imagine this happens to many of us after the worst of meno is over - it's a lovely silver lining, so I do hope so.
I really feel for all of us struggling to find our own path through - it can be long & strewn with steaming great cowpats, but I think we also learn a lot from it and dare I say, probably emerge stronger for the experience.
When it was decided Utro might be the next best step for you Tempest, I thought it best not to pop up in your threads, a potentially worrying reminder of someone who didn't do well on it, so I'm afraid I'm out of touch with your situation, but I do hope you are OK and that the future will bring big improvements in your life. :bighug:
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Hi Warwick - just wondering whether you're starting to feel any better after reducing the Thyroxine? Early days, I know.
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Hi Wrensong,
Day 6 of 100mg (lower dose Leveroxine) and day 32 Angeliq. To be honest I'm not feeling great. Sweats back, waking early morning with the familiar butterflies/edgy feeling and also periods of feeling lightheaded :o
I'm not sure if these are side effects from Angeiq or its not been long enough to get full effect.
Symptom wise, I felt so much better on Tibolone. No sweats/flushes or anxiety..... it was just the bloody dizziness that crippled me. This has now improved. They advice 3 month for full effect of HRT.... so will see what happens. Also it may be too low >:( next option will be Everol conti.
One other thing.... 2 weeks on Testogel and a return of Libido/energy. Although my Gyne said to use half sachet twice weekly. I found this too high, felt hyper and aggressive so just using a pea size amount per day.
Will keep you posted Wxxx
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Hi Warwick, sorry you're still feeling rotten, but I know it's early days after the Thyroxine reduction, so I hope once your blood levels even out, you will feel some benefit from the lower dose.
The sweats & early morning waking with that nervy feeling are horrible - I still get both, though nowhere near as badly as I did pre-HRT. As you say, only a month on Angeliq is probably too soon to have a good idea of whether it will suit you, though the advisable 3 month wait can sometimes seem an age if you're feeling rough & the demands of daily life mean you need to be able to be function better.
Sorry you had to stop the Tibolone when in many ways you felt better on it, but I wouldn't be able to cope with extreme dizziness either. Good that's improved now you're off it & I hope the light-headed feelings will go as well. Glad you have another option lined up if Angeliq is not right - there is every chance you will find a better fit, so that's something to hold onto on low days.
Your Testogel experience is interesting - I was advised to use a pea sized amount of T for extreme tiredness, poor stamina & muscle weakness, but have deferred starting, hoping first to find a regime that raises oestrogen enough to finally get rid of the sweats.
Take care - would be good to know how you get on. Fingers crossed for you.
Wrensong x
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To be honest I'm not feeling great. Sweats back, waking early morning with the familiar butterflies/edgy feeling and also periods of feeling lightheaded
Warwick - just another thought - you probably already know this, but when feeling rubbish I tend to forget so much: on too much Thyroxine, digestion will have been running fast, burning up calories quickly and possibly destabilising blood sugar. I think being hyper can lead to spikes of high sugar followed by lows when the pancreas pumps out too much insulin to mop up the excess. The low blood sugar can result in feelings of light-headedness during the day, and overnight when fasting, can worsen the tendency to night sweats & the early morning nervy feeling. Hypothyroid ladies seem especially prone to this hypoglycaemia - I've really struggled with it since peri began & it's carried on right through post-meno :o
Not going too long between meals can help & trying to make these moderate sized (not too big, to discourage over-production of insulin). Please do make sure you try to eat enough though - if you've not been able to keep up with your body's calorie needs while hyper, this may have been making you feel even worse. If you are underweight (like me) this means our own natural oestrogen stores tend to be low/non-existent & I think I remember your bloods on/after Tibolone showed this, as mine did pre-HRT, which also doesn't help us with the night sweats etc ::)
Complex carbs & a good portion of protein at each main meal, avoiding sugary snacks & only having fruit juice with a main meal might help if you don't already eat this way. I also find I have to have a snack before bed to prevent nights & early mornings being too awful - something like a small bowl of a high-protein natural yoghurt with a little dried fruit or a small bowl of muesli.
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Hi Wrensong
Thank you for finding time to send me very informative information. If anything I' a little over weight and battled with since meno.
Just got back home from walking the dog and even though the weather is nice I look like I've just stepped out of the shower. I feel the HRT is either not strong enough or it needs more time to get full effect. Had a couple of dizzy moments but only lasted seconds :o I have some gel left so I wonder if I should had half a pump for a few days??
I feel there is always something and my life is passing me buy >:(
Wxxx
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Hi Warwick - the overheating from walking the dog - ughh, I know: I was just the same last evening after a riverside walk & had to strip off into shorts for the rest of the evening :o But if you can actually sweat to cool down this is, dare I say it, a good thing(!) to help bring body temp back down, though the wetness is horrible to deal with. I now seem to be one of those hypo ladies who can't actually sweat much - I just get hotter & hotter & feel as if I'm burning up & that means it takes an age to cool down again.
I expect having been on too much Thyroxine for a while, the excess will still be clearing from your body, so there will still be a tendency to extreme overheating for a while. Also, I don't know if you've noticed anything similar before, but I've found that changes in thyroid meds seem to affect the way the body responds to HRT even if these changes are made after being on a stable dose of HRT for some months. I think increasing/decreasing thyroid meds changes the rate at which we metabolise HRT - slowing it down when we reduce thyroid meds & speeding it up when we increase - but this is only a personal observation & may not be the case in reality. If so, then if you are very sensitive to fluctuations in gynae hormones, as I seem to be, then I wonder whether this could account for why the Angeliq isn't yet promising to be that helpful with meno symptoms, rather than suggestive of needing more oestrogen just yet? If you are only about 5 weeks into the Angeliq, that's also still not long for oestrogen to have built up, given your levels were so low on Tibolone.
What I mean is that my meno symptoms seem to increase whenever my thyroid meds change - as if the body is struggling to adapt to ANY fluctuation - whether that is because there may suddenly be an increasing amount of oestrogen building in my body when thyroid meds have been lowered, or HRT levels are effectively reducing, because thyroid meds have been upped.
I really understand your comment about life passing by while we're not well enough to join in - I've long felt like a spectator - it's frustrating and saddening, but hang on in there. I try to concentrate on what I CAN do these days and try not to worry too much about what I can't - telling myself this may be temporary & if not, I will make adjustments and get around it, given time to accept whatever turns out to be the new normal.
Your body has a lot to cope with at the moment on a lower dose of Thyroxine together with a relatively new HRT regime and on hot days this is an additional stress that really takes its toll. All I can suggest is to be as kind to yourself as you can - none of this is our fault - get as much R&R as possible and if you can, try to find time to do whatever makes you feel better, as this will do you good and help your body adapt to the changes that are going on. Will be thinking of you.
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Dear Wrensong
Thank you so much for the reassuring kind words ;)
Feeling a little down today. Just reflecting on how well I used to feel, my confidence was amazing. These days due to symptoms I'm a shadow of the person I was.
Just looking back to Tibolone days. It did take 10 weeks for symptoms to settle (although the dizziness got worse) I think I should stick with current regime along with reducing thyroxine for the 3 month and review then.
We are off to Cornwall next week, hope to feel well enough to enjoy the trip 8)
Regards Wxx
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Hi Warwick, I think you're really wise to try to stick with the current regime & reduced Thyroxine for the recommended 3 months. So sorry you're feeing a bit low - the confidence loss is so hard to deal with, believe me, I know.
Cornwall sounds great - we were there just a few weeks ago & it was a breath of fresh air. So good to get away from the usual surroundings, so I'm sure this will do you good. Hope you have fantastic weather & manage to get plenty of R&R. Take care & don't worry about being in touch while away - just chill & have a lovely time :)