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Author Topic: New to HRT and a bit Freaked Out  (Read 2417 times)

SandJ

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New to HRT and a bit Freaked Out
« on: February 27, 2017, 06:32:53 PM »

Oh gosh how I wish I'd found this forum a long, long time ago.

I'm 55 and started HRT four days ago.

My last period was about 5 or 6 years ago, I honestly don't remember. At that time and for the following years I had some hot flushes, but being a 'cold' person, I did not find them bothersome. I did however have horrible breast swelling and pain (I had fibrocystic breast disease in my 20s /30s) and sudden weight gain - the latter was in fact a bit welcome as I am underweight. I used the herb Agnus Castus for 2 months and it seemed to sort things out. Still got hot flushes, but nothing problematical. But.. then..

Since last March, and ramping up the previous 2 years, my hot flashes became catastrophic. 10 - 14 a day, a few at night. The heat was the least of my worries. I started also having constant head pressure, unbearable bilateral tinnitus, and every time I flush, these are increased, and worse,  during each flush it feels like a cross between having an anxiety attack and sudden-onset jeg lag. During some of the flashes I am so utterly drained of energy, I can't even talk. When I'm sick or tired (and more on that later), they are much, much worse. I barely go out, and feel like my life has been completely curtailed, and it was curtailed before. I got very, very depressed, and felt myself on the edge of a total breakdown. And then I made an appointment to see a private GP for bio identical hormone therapy.

The reason why I didn't seek help earlier was because I was not sure these symptoms were menopausal, especially since I'd already had symptoms years ago and things were OK. Also: I have some kind of chronic 20+ year immune system disfunction. ME/ CFIDS/chronic Lyme type situation. The 'usual' pattern for this is frequent infections, low resistance to stress, getting sick after aerobic activity and many many of the symptoms that are listed here on another thread: light and noise sensitivity, depression, waking up feeling very anxious etc etc.

I thought that it was this situation - the ME/CFIDS situation - that was worsening, not that I was having a return of menopause issues, and I worked with a herbalist for a year, who in fact treated hot flushes in addition to immune system issues, and since the hot flushes were not responsive to herbs, she thought they were possibly related to chronic Lyme etc.

So on I persevered. And on and on it got worse. I started to work with my GP regarding the immune system issues - I've moved about a huge amount in the past 10+ years - not just house, but country - and recently returned to the UK (3 years ago) and thought, lets try once more to see if I can get well. I've not had much luck with GPs in the past, and have always preferred to seek 'natural' and holistic approaches to health care.

My GP sent me to specialists for immune system, ENT for the head pressure/tinnitus. No one had any suggestions of what it might be or what to do other than get therapy as perhaps I had post viral fatigue syndrome after a tick bite infection, and the syndrome was exacerbated and ongoing due to trauma. Now, I've had a lot of traumatic events in my life (family car accident when I was 7 in which my father died being one such event, several other events in adulthood) and I lost my mother a year and a half ago, so yes, therapy is needed and I have had it off and on for years and in the past year a weekly Samaritan call.

And then I thought, maybe I need to look at the hormones.  I read somewhere that hot flushes are often worse in women who have had trauma in their lives.. so I was thinking...should I just focus on this? But how long would it take to ease the situation? I truly felt I couldn't carry on. So.. I thought, maybe it's time to try 'bio identical hormones'. I had experimented with topical progesterone years ago but stopped as I didn't notice any particular difference and thought I need someone to monitor this.

Although I asked my GP about the hot flushes, he didn't make any suggestions. He supported the idea of going private to try 'bio identical' hormones when I mentioned it. So that is what I did. Only, now I know that 'bio identical' is pretty much the same thing as HRT. I did not know that then, nor did my GP tell me this, nor did he suggest I go to the nurse in the practise who specialises in menopause. I only found out there was such a person when I had to go to another doctor for blood tests because he was away. Female doctor who was horrified when I told her what I'd been going through.

But by that time I had booked and paid for my appointment with the private doctor. Perhaps I would not have been prescribed 'bio identical' hormones on the NHS, but still, I would at least have tried. Due to my chronic health condition i have not had paying work for decades, and we struggle financially. So I'm pretty upset about all of this.

Anyway, I got the blood tests asked for by the private GP done on the NHS (which apparently I'm lucky to have gotten) and I saw the private GP last Friday.

For what it's worth, the blood test results are:

LH 85.3 iu/L
FSH 141.0 iu/L
Oestradiol less than 18 pmol/L
Progesterone serum 0.2 nmol/L
Serum Testosterone less than 0.1 nmol/L
DHEA 0.8 uol/L

The private GP prescribes licensed "Body Identical" (bio identical) Hormones, produced by pharmaceutical companies as opposed to compound pharmacy ones. I had expected to come away with topical estrogen and progesterone.

But this is what she sent me away with:

Oestrogel - 2-3 pumps a day
Utrogestan - 1 capsule orally at night
Testim gel - 1 tube to last 7 - 10 days
Vagifem 10Mcg tablets - 1 daily for 2 weeks and then 1 twice weekly.

Thus feeling a bit 'freaked out', especially after reading the inserts to all of this. And I HATE the smell of Testim.
I truly hope I'm not going down some horrible road that will only make me feel worse... but I haven't been able to function at all the past year so i'm honestly not sure how much worse it could be.

Anyway. Thanks so much for reading, if you got this far  :-\ I've been a bit headachy and achy in the last couple of days, but have no idea if this is in response to the above or just my 'normal' chronic health situation.


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CLKD

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Re: New to HRT and a bit Freaked Out
« Reply #1 on: February 27, 2017, 07:23:48 PM »

I've got to the bottom:  :welcomemm: - you should get lots of responses.

I think that GPs are short changing patients in many specialities.  Your GP went the easy route/sort-out problems first.  He should have referred you to a Nurse if there is one in the Practice, is he aware of her though  :-\ - reading the Surgery web-site might be useful too so that patients know who to ask for.  However, as you may read on here, some Nurse Practitioners push alternatives rather than agreeing that ladies can have HRT!  Whether this is money pressures, end of Financial Year ........  but it is unhelpful!

Also if you have moved round or haven't been in the UK for a while, it is quicker to pay for advice? 

Finding a regime can be Trial and Error.  However, your GP should be able to prescribe localised HRT should you develop dryness in the vagina which often presents with urine infection-type feelings, i.e. the need to pee continually. 

Hopefully someone will be along with HRT advice as to what you have been given.  The advice is to use products for 3-4 months if side-effects aren't dire to let the body become used to added hormones. 

Gentle exercise.  Good diet.  Relaxation can be useful!
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SandJ

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Re: New to HRT and a bit Freaked Out
« Reply #2 on: February 27, 2017, 11:00:36 PM »

Thanks so much for replying and reading through to the end CLKD :-)

I have been here now for over 3 years, and because of all the other health stuff I've seen my GP quite a few times, when I asked about hormones and tests he basically said they wouldn't show anything abnormal - and maybe he's right, but at the same time he didn't once suggest any treatment or help, HRT or otherwise, only give his 'OK' to me going private. I think if I'd known bio identical hormone therapy was the same as "HRT" I would have insisted on advice - but I think there's just a huge lack here, doctors should be the ones suggesting something, or at least asking questions, rather than the other way around :( I also think as soon as I say "M.E." or 'CFS" I get written off as being someone who can't be helped.

I eat like a monk (nun!), virtually no sugar, alcohol or caffeine, mostly vegetarian with a bit of fish. I qigong and a bit of yoga every day and yoga nidra meditation a few times a week. I've been so completely debilitated now for over a year, most days not being able to get out beyond our tiny patio, so I'm quite weak and I'm very much hoping the flushes will improve soon so I can start to build up my strength and get out more. I am also very isolated as my husband is away for about 5 months of the year, and due to my circumstances I've not been able to develop any kind of community or friends locally.

Sorry, I seem to have written another book!
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CLKD

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Re: New to HRT and a bit Freaked Out
« Reply #3 on: February 27, 2017, 11:26:15 PM »

No need to apologise.  However, you may like to review your dietary intake because a lack of sugar can cause anxiety surges!  I was advised by NAPS to eat every 3 hours: a carbohydrate diet : not to add anything extra but to spread out what I was eating: at that time, not a lot : every 3 hours, 24/7 so when I woke in the night I had a biscuit.  A drop in blood sugar levels can cause anxiety for me it's a feeling of intense nausea, weak thighs, then calves then panic attack  :'(.

The body needs sustenance as it goes through The Change.  Perhaps keep a diary for 5 days of what you eat/drink and when which will give you an idea of any 'gaps' that your body might require right now.  A little of what you fancy and all that  ::).  Fruits and veg are good for us but don't have much sustenance  ::) - bananas and other slow release foods might help, I graze on dried fruits and nuts and have a good quality muesli for breakfast.  Can't face eggs unless they are in  :cake: :cupcake: or pancakes  ;D
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samweller161

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Re: New to HRT and a bit Freaked Out
« Reply #4 on: February 28, 2017, 10:18:00 AM »

Just wanted to say Hi SandJ and welcome to the forum - CKLD gives good advice re eating little and often - your yoga sounds great.

You are amongst friends here!

SP x
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jessieblue

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Re: New to HRT and a bit Freaked Out
« Reply #5 on: February 28, 2017, 11:46:42 AM »

SandJ, big hugs for you.  I literally feel your pain.  I have had 12 years of random health and gyn problems and a multitude of tests.  I have even believed that it was all in my mind as no definitive answer has been found for anything.  I have had endoscopy mri brain and neck scans hysteroscopy cystoscopy blood tests ultrasounds  urodynamics.  To be told I have a sensitive bladder.  Yeah....you dont say!  Nothing offered in the way of treatment except amitriptyline.  I requested some oestrogen cream recently but that has caused a thrush type problem which isnt resolving.  At least I think it was that but who knows.  Its a dark dark place isnt it?  When you feel there is no help.  I am also fairly much housebound.  I go out when i have to to shop and to visit my horses who are retired.  I love to watch my son play football which I struggle to do for every match.  These things cause massive anxiety though and every day is a challenge.  New physical symptoms pop up daily.  Maybe they are anxiety or something real.  I dont really know anymore.  I do feel like I am losing my mind.  Its good to talk to those who understand.  I am always around.  Feel free to pm me if you just want a chat or a rant.  My shoulders are broad. xx
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CLKD

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Re: New to HRT and a bit Freaked Out
« Reply #6 on: February 28, 2017, 12:15:01 PM »

Anxiety is REAL! and can bring me to a stop.

jessie - have you been diagnosed with Candida/thrush?  Dryness can cause itchiness down there ...... where did you apply the oestrogen cream? 
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Hurdity

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Re: New to HRT and a bit Freaked Out
« Reply #7 on: February 28, 2017, 06:14:26 PM »

Hi SandJ

 :welcomemm:

Sorry to hear about all your issues and that you are so weak as a result of your various conditions. I think that Lyme disease has only fairly recently been recognised as a long-term condition - but surely you would have been tested after your tick bite infection and treated accordingly? I mean it can still be tested and treated I understand - although not exactly sure about this. Just that someone I know had this for years - had had all sorts of tests including for brain tumour etc as he had chronic and acute debilitating headaches and he was finally diagnosed and treated.

One thing I don't think you mention is thyroid tests - have you been thoroughly tested for this including Hashimoto's which is an auto-immune condition. I am sure you will have done because docs will have done blood tests for fatigue symptoms - but were you referred to an endocrinologust or dismissed as normal due to TSH readings in range?

I agree you should not have had to go privately for that prescription although the Testosterone is off licence so many GPs will not prescribe it (nor even some gynaecologists). However the other products are available on NHS so you should not need to go to private doc at great expense, any more. Re Testim - I use Testogel which is odourless so something to ask for maybe next time - it is the same concentration as Testim. The one to avoid is Tostran as it is double the concentration so less easy to keep to the same dose day to day.

One thing I would say is that it is quite a high dose to start with for someone who has been so low in oestrogen for so long. Do be prepared for some side effects initially but if you persevere hopefully you should feel a lot better!

You do not need to eat sugar!! I presume you are getting carbs from other sources than pure sugar - which of course are much better for you as they metabolise slower so you won't get the anxiety due to low blood sugar. Reduced carb/higher protein is a better way to stabilise blood sugar levels than eating sugar frequently! If you are peri-menopausal then advice might be slightly different but in post menopause your underlying hormone levels are pretty stable.

Do let us know how yo get on with this regime :)

Hurdity x

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CLKD

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Re: New to HRT and a bit Freaked Out
« Reply #8 on: February 28, 2017, 07:30:10 PM »

It is difficult to get some UK GPs interested in Lyme Disease  :sigh: though there is more awareness in the US.

Keep asking SandJ!
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Cassie

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Re: New to HRT and a bit Freaked Out
« Reply #9 on: February 28, 2017, 07:35:31 PM »

You could start with 2 pumps per day at night that should alleviate your symptoms and if you prefer to use the utrogestan vaginally you could do, its a great combo and is considered one of the safer combinations am sure you will get along just fine, give it a chance to kick in it will make you feel brand new.... :)
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SandJ

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Re: New to HRT and a bit Freaked Out
« Reply #10 on: March 03, 2017, 05:21:31 PM »

Thanks everyone so so much for your help.. I haven't been on here for a few days and only just caught up.

CLKD - thanks for the reminder to eat more frequently, I should do that. My diet otherwise is probably the one thing that I feel I have handled reasonably - I worked as a nutritionist for a while and try to make sure I get enough of everything. I do eat complex carbs.

JessieBlue, thanks so much for the support. I envy you your horses.. I love horses! (and cats...). Truly hoping we both see some light at the end of the tunnel soon!

Cassie - I was wondering about that, if I should use utrogestan vaginally. I'll try it orally for a while and see how it goes...

Hurdity - re Thyroid, yes "dismissed as normal due to TSH readings in range" - and the private GP also seemed to think all was OK there. I worked with a doc in the US briefly who thought I had thyroid hormone resistance. She prescribed Cytomel (T3)  50 – 75 mcg for 1 month – but I had terrible response.. my hair started to fall out, I had bad itching, etc so I stopped...

Lyme - well, I was bitten by a tick in South Africa 20 + years ago and although I went straight to the Hospital for Tropical Diseases in London on arrival back, they just told me it would clear up by itself. At that time they didn't know to treat instantly with antibiotics :( My GP here recently tested for lyme, but it showed nothing, and sent me to infectious diseases specialist who told me that 'rickettsia' (the south african version of tick bite fever) would never last that long. However.. I know in the USA and Germany/Austria, they disagree, and I know that people in the UK who have tested negative to NHS lyme tests have gone on to get tested in Europe and/or USA and are positive. But it all costs so much $$ to pursue this. If HRT doesn't make me feel a lot better in a couple of months I will try to pursue......

What side effects do you think I might have from the Oestrogel? I've taken it all for a week now and have to say no change whatsoever, if anything hot flashes are a little worse :( and I feel utterly exhausted



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