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[joziel]

Well, that's very interesting because the symptoms I have only started after HRT as well....

In more detail, I started HRT 2 years ago (43yo) and it immediately fixed all the low estrogen symptoms I had (joint pain, constipation, ringing in my ears, brain fog, not being able to read, etc etc)... and for 3 weeks everything was lovely. I'd been told to start on a 25 patch for 2 weeks and then increase to 50. I don't know if that had anything to do with it, but after a week at 50 (3 weeks overall), I was hit with these severe night time symptoms I've battled ever since.

As I lie down at night and get sleepy, my heart beats hard and faster than usual (95bpm) and I get inner tremors. Mild version is a tingling in my feet. Severe version is in my core and it can feel like the bed is moving under me. Then, every time I begin to fall asleep, I get hypnic jerks where I am startled awake. End result = severe insomnia.

I have tested and treated and done everything I possibly could. Of course I tried stopping the HRT since that is what started all this - only I stopped it for 5 months and it didn't really do anything. Perhaps the symptoms were less intense but they were still there. And I got all the low estrogen symptoms back. So then I began HRT again and gradually increased and this time didn't notice any change when I re-started it. I said at the time to doctors "it's as if the HRT has started a process or a change, in something else - it's not a direct HRT thing, it's affected something else..."... (my theory now is it affected my thyroid)

Thyroid panels were coming back 'normal', even when I did private advanced ones. Until someone suggested I get my reverse T3 tested. Which I did, and it was sky high (33) with a low and only just in range T3. It looked like a conversion problem because I had high/good T4. So then I was given T3 to clear the rT3. I had to go private for that. And there was a lot of fiddling around and I was given some T4 as well. Things now are much better than they were but I'm not quite there yet. On a good night I will go to sleep within an hour and then I will be 'trying' to stay asleep towards the end of the night. I have trazodone for bad nights now... I've avoided anything stronger.

I have no idea at the moment what's going on and whether it is my thyroid or not. The big picture view is I'm much better than I was last year. So I'm increasing T3 and estrogen and giving things time. But I don't want to end up superstitiously on thyroid meds for the rest of my life, especially not T3 - so at some point I plan to move to more T4 and see if I can convert that, and if I can, to wean off thyroid meds.... and see what happens. But I really want things to be good before I do that, and stable - so that the difference is very noticeable to me.

I am probably waffling now but that's my plan anyways.... I'm with Newson for HRT too. My advice is sadly just go private. It sucks. But you get what you want, fast.

[Silverleaf]

Hi Joziel
Lovely to hear from you and read that you are on a similar path!
I am not on any HRT, neither the GP or the Endo will discuss this topic. They believe it's thyroid, which I don't agree. The saga started after a trial of HRT, which threw me out of balance. The Endo doesn't understand the NDT he's "NHS NICE" driven, sends me for blood tests when I've taken my NDT and is obsessed with the TSH level. I agree about the estrogen, but the Endo dismissed it. thank you for the information xx

[joziel]

My hunch, if it's anything like what has gone on for me, is you need to ideally get back on HRT and then test to be sure you are absorbing it and are between 400-600pmol.

After what happened with me when I first started HRT, doctors concluded I was 'really sensitive' to estrogen and needed to cut patches into micro bits etc to increase oh so very gradually.

When really, I was a poor absorber and increasing HRT in micro amounts wasn't getting me anywhere very fast. It took me ages to realise this because low estrogen and high estrogen and fluctuating estrogen symptoms are all so similar with this neuro stuff. It was only when repeated blood tests weren't really showing my estrogen as going up anywhere very fast that I realised I don't really absorb very well and had the courage to go up on the doses this much.

So - once this 'process' (whatever it is) was started by beginning HRT, weirdly stopping HRT or micro-dosing it didn't help. Only getting up to a decent dosage of it seems to have improved things. Unless it's improved as a result of the T3/T4 I've been taking. I am still v confused about what is causing this - or whether it's both together and some interaction.

[Silverleaf]

Hi Joziel
Thank you for taking the time to reply and relay what you have gone through.
I see that you continued with our HRT, do you have symptoms of racing heart, hot flashes and vasomotor symptoms ?
Are you taking levo and T3 combo or NDT?
For me after being under a private Endo it's come to a disappointing end. The Endo was only interested in reducing my NDT, which had a terrible effect on me. I ended up gradually increasing the NDT to stop adverse effects to almost the dose I have been taking for 5 years. After ignoring the estrogen results for 8 months, I've requested to be referred to a menopause clinic. For 12 months menopause hasn't been discussed or considered. Nobody should wait 12 months and counting for answers.

[joziel]

I've long since given up on the NHS for any of this    Well, I do get my HRT meds from the NHS but with a letter from my Newson dr, telling them I need such high doses 

I wouldn't say my heart has ever 'raced', but I would get woken up from sleep with it beating around 100bpm. At night, I would wake hot and sometimes sweating - although it appeared to be caused by the inner tremors which seemed to act like shivering, making me warm. So I don't know if that is your typical vasomotor stuff or something else.

I have been much better these past 3 nights, I am hoping I've turned a corner - I increased estrogen to 8 pumps on Sunday. But I also increased T3 2 weeks ago. So I have no idea what has caused the improvement.

I'm taking levo and T3, 50mcg of levo and 30mcg of T3.

[Silverleaf]

Hi Joziel
That's a positive sign that by increasing your estrogen you have had better nights. I hope that by the time you have read this reply that the positive trend has continued.
With regards to your Thyroid dosing, this is very much personal depending also on height and weight. It's not so much about blood ranges but how and individual actually feels. Nobody can explain thyroid cold or thyroid fatigue symptoms better than someone who actually has a malfunctioning thyroid.
For me the Endocrinologist I have struggled with this past 8 months is private. It's become obvious that he doesn't understand NDT, and most Endo's don't. When taking NDT your TSH is suppressed, Endo's don't like this and become fixated on reducing NDT doses, which result in individuals like me feeling worse and having side effects of reduction to meds. It is very frustrating and cruel.
To add to this is a blanket refusal to talk menopause. We all know as women that low estrogen causes vasomotor symptoms. However with women who have thyroid problems our journey is tougher. I am now on the hunt for a UK wide Endo who specialise in NDT and Menopause...so far I can't find anyone...

[joziel]

Hey Silverleaf, I highly recommend Dr Momi. You'll find him if you google Functional Thyroid Care. He's in Ireland but he prescribes to UK, from UK pharmacies. I'm pretty sure he does HRT and not just thyroid, but you can check that. I see Newson for HRT. Momi definitely prescribes NDT and T3 and understands that TSH will be suppressed on T3 heavy treatment. (Mine is 0.002 or something ridiculous.)

I've been on 8 pumps for a week now. After 48hrs on it, I had 4 very good nights, then a very bad night, then a very good night again (just as before the bad one). So I'm still hopeful.

There is so much about all this that isn't yet understood. We know more about outer space than women's bodies.

[Silverleaf]

Hey Joziel
Thank you for the recommendation!
I will certainly reach out to this Dr. I have also continued researching into the impacts of thyroid problems in peri to post menopause. Very concerning to read on other forums how women have been given high doses of HRT which impacts their thyroid function. Added to this is the known link of high oestrogen impacting T3 levels.

I agree Joziel there doesn't seem to be a silver bullet to resolve the symptoms, just as you think you've cracked the vasomotor and other effects, you have a bad day. One thing is for sure that things are far more tricky with hypothyroidism.

In the North West of the UK there's a Royal Liverpool (women's) Hospital, which I am going to contact and see if I can get advice.

I have declined taking medication to stop the vasomotor symptoms, like putting a sticking plaster on something without addressing the root cause,plus I read the side effects which again was on balance just asking for more problems.

 I agree Joziel, hormones must be the half day lecture in medicine that few attend. Keep strong xxx

[joziel]

High doses of HRT can be necessary, even if it affects thyroid function. (Women might need an increase in thyroid meds to compensate.)

With me, on no HRT or up to 6 pumps of gel, every night the bed was shaking under me from my own inner tremors and my heart was beating so loud and fast. This has all improved a lot on 7 and now 8 pumps of gel and now the symptoms are minimal although my sleep isn't perfect yet. But I feel a light fizzing on my feet instead of the entire bed moving and my heart will be a bit fast and loud for the first 30mins after I get into bed, then it settles down. I still can take a while to go to sleep and I can still wake up early and many times a night, so I'm not quite there yet - but I feel like I have the 'normal' peri insomnia which I've seen many women describe instead of some ridiculous condition... I probably need even more estrogen to improve the sleep further.

I'm a poor absorber of estrogen so on 6 pumps I was only 334pmol. On 8 pumps, I am probably around 400pmol going by the rate of increase on 4 and 6 pumps. Many of the worst symptoms of peri are thought to be caused by fluctuations of estrogen. Your ovaries are sputtering like an engine, so producing a load and then not very much - with no pattern to it. So it's thought that having a relatively high amount of HRT (400-600pmol) can over-ride those fluctuations and make them have less impact. It's not possible to drop to nothing, for eg.

High doses of HRT is not the same thing as high serum estrogen levels, since what some women get from 2 pumps of gel, others need 6 pumps to get. So it's nothing to do with doses.

And if increased estrogen has an effect on the thyroid, then - more thyroid meds might be needed. The solution isn't (in this situation) less HRT, because people with severe symptoms like me would just end up suffering and on prescription sleep meds and more. Usually women who are older and much further post-meno need less HRT and lower doses, so in time it can be reduced. But often higher doses can be needed in peri.

[pepperminty]

Hi Silverleaf,

I have just read your post. I have exactly the same which has been going on for the last 2 years in varying intensity. shaking , sickness, nausea, vomiting on occasion, shivering, temperature up and down, unable to move or be touched due to extreme nausea, palpitations- heart racing , diarrhea . I have been carted off in an ambulance several times due to the severity. They monitor me and give me anti sickness medication and check my heart etc. Nothing has been found as yet.
I have concluded that I may have issues with histamine, or thyroid ( in range according to the GP) or maybe POTS?  I can go for weeks without anything and bam out of the blue it happens . 
My Gp mentioned that he thought it was the menopause 
It effects everything one does.

PMXX

[lillith112]

I've just been reading this thread. A neighbour of mine years ago had exactly the same symptoms and lots of trips to A&E, her heart used to race along with other symptoms. It took a couple of years, but eventually one Dr sent for a 24 hour urine test for adrenaline. It turns out she had a pheocytochroma which is a tumour on the adrenal gland on her kidney. It was randomly throwing out massive bursts of adrenaline. She had an operation to remove it and no longer had these racing heart episodes. Silver leaf, did I read that they found something on your adrenal ?

I would definitely ask your endocrinologist or GP if you can do a 24 hour epinephrine test (adrenaline) my friends bloods and hormone tests all showed up normal until she did that 24 hr urine. Also ask for a panel of adrenal function bloods along side it. x

[pepperminty]

I've just been reading this thread. A neighbour of mine years ago had exactly the same symptoms and lots of trips to A&E, her heart used to race along with other symptoms. It took a couple of years, but eventually one Dr sent for a 24 hour urine test for adrenaline. It turns out she had a pheocytochroma which is a tumour on the adrenal gland on her kidney. It was randomly throwing out massive bursts of adrenaline. She had an operation to remove it and no longer had these racing heart episodes. Silver leaf, did I read that they found something on your adrenal ?

I would definitely ask your endocrinologist or GP if you can do a 24 hour epinephrine test (adrenaline) my friends bloods and hormone tests all showed up normal until she did that 24 hr urine. Also ask for a panel of adrenal function bloods along side it. x

Thanks , that sounds interesting and something I will look into. It is the randomness of it. After I have recovered you wouldn't think anything was wrong with me! We do get labelled as " just another anxiety ridden menopause female".  By the time i get an appointment my symptoms have gone! It is a shame the NHS is geared to crisis and not looking at cause.

PMX

[Silverleaf]

Hiya Pepperminty and Lillith112
Thanks you ever so much for reading the backstory to what's going on with me.
Yes, I can confirm in August last year, the private Endo sent me for a contrast CT scan to rule out PCOS. Only because I had a testosterone blood result showing way above range (originally 2.65 nmol/L down to 0.8nmol/L by December) that my symptoms of jumping out of my skin if there was a loud noise and vasomotor symptoms (racing heart, hot flashes, feeling of nausea and anxious) were "adrenal or ovarian" related. The scan and blood/urine tests ( catecholamine) within range, there was a confirmed Incidentaloma (tumour) that's in one of the adrenal glands. The report said that the tumour is "non functioning". I have a follow up non contrast CT scan happening shortly. I do (being a realist) raise an eyebrow that when tests come back "normal range" exactly what does that mean, afterall we are all individuals and what can be right for one is not for the other. However, I do know the incidentaloma will require monitoring unless it grows/changes, then the only option will be surgery.

Don't ever feel that you are just another anxiety ridden menopause female Lillith, honestly nature is damned hard on us girls. That sympathetic nervous system takes as much bashing as the physical body. I've lost count of the times I argue in my head at 3am over why this "stuff" is happening. I also dislike the fact that there's a misconception that once you have hit "menopause" you are over it, and I feel so sorry for past generations who suffered in silence. I must have spent a tonne of hours trawling the internet for reliable sources of information in the absence of clear NHS support. It's one of the reasons why I continue to write updates, in the hope that what I write helps another lady when she's hit with vasomotor symptoms and (in my case) is hypothyroid.

 Pepperminty, have you considered ruling out POTS with a chat to the GP for a cardio referral? It's what I did last year. A&E get nervous when they see racing hearts with women, rightly so and if like me you ended up being a "familiar face" then it really does pay to rule out anything related to blood pressure and rhythms.  For the reason that your events are quite wide spread apart do you keep a diary? Do you watch if there's foods or drinks that trigger it? For me I do fasting ( nothing to eat after 8pm) until first food around 11am or later , and depending on what it is can bring on vasomotor symptoms!. I abstain from alcohol and caffeine (which is hard, especially on special occasions) but it doesn't stop the vasomotor symptoms, this is my proof that I don't think changing my diet in the last 15 months has altered the symptoms.  I also know that when I do a lot of bending up and down (e.g. gardening) I feel really nauseous and my heart goes off on one. That never used to happen

The one thing I will add here, in my experience HRT boosted my Oestrogen, which should have meant that my thyroid medication (NDT) needed to have been increased. This did not happen. .. Will keep posting xxx           

[pepperminty]

Hi Silverleaf,

they did find elevated white sells in A and E. They always give me intravenous nausea meds. I had 17 " attacks" in varying severity last year. This year 2 so far. I just take my nausea medication and lie down. I really do need to go back to the GP , but her looks at me like I am a " silly woman" and says it is just menopause and one of those things I have to put up with. I probably need a cardio referral, I will have to go back again, but there are lots of things going on at the moment and my glass is rather full as it were. Just getting through each day is a gargantuan effort. My diet is really good, and my blood pressure is low. It is all very traumatizing. I do hope you get a definitive answer.

PMX

[joziel]

I've had the 24hr catecholamine urine test for tumours and adrenal stuff, and it was normal and found nothing.

It's worth doing a 4-point saliva cortisol test because high cortisol can cause a lot of these symptoms. You do it at home and spit in a little tube 4x in one day, then post it off. I had high cortisol at the 5pm and night time tests, but it was normal in the morning and midday. Since my GP was only testing my morning cortisol with bloods, they just weren't seeing the high cortisol later in the day (which is a huge cause of insomnia). I started several cortisol reducing supplements a few weeks ago - holy basil, ashwaganda, phosphatydeserine/PSP and zinc.

I increased my estrogen to 8 pumps and I'm doing better now than I have for the last 2 years since all this began. I estimate my estrogen is around 400pmol now. It has taken determination and courage on my part to keep increasing it, what with people on social media freaking out, GP saying I'm taking so much more than the licensed dose etc etc. Newson Clinic would say 'if symptoms continue, increase again' - but since I didn't know if the symptoms were due to estrogen (or thyroid), increasing felt a bit risky - but I did it anyway because I was desperate to try everything. Glad I did now... I've just had the best sleep in ages, it's gradually improved since I increased to 8 pumps.

I have now just stopped T4 and am on T3 only, which is very controversial - but I am just converting my T4 to rT3, like I was with my own T4 before. I have freezing feet, and can only eat one small meal a day without putting on weight. Even on quite a high dose of T3 (30mcg) and 50mcg of T4 - because my body is hellbent on making rT3 from that T4. I don't feel any better on that combo of thyroid meds than I did before starting any medication at all. (Assuming the night time symptoms are low estrogen, which I think they were.)