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[itwillbebetter]

Hi, I am at the end of my tether with symptoms and going round in circles with 'experts' and research all pointing to different things.  I would be so grateful if any of you lovely ladies could make some sense of what's going on.  I apologise in advance for the length of this post.

I am currently 43 and had a TAH four years ago.  Immediately after surgery I had HRT implants which my body rejected; they came popping out of my hysterectomy scar 2 months later after having travelled from my groin    I then began Zumennon tablets at 3mg.  No real menopausal symptoms apart from hot flushes if I went anywhere near alcohol.

I had a real rough time after surgery because I had a nerve impinged by a suture and spent 2 years on pretty hefty pain killers ; pregabalin, tramadol, codeine etc. I eventually had further corrective surgery to release the nerve and repair a hernia.

About 2 years after surgery I started to get aches and pains.  Bi-lateral plantar fasciitis literally kept me housebound for about a year.  I had 3 steriod injections, acupuncture, custom orthotics made, sports therapy massage, Pilates for stretching.  Nothing helped.  I then developed Achilles tendonitis and tennis elbow rapidly followed by hideous joint pain in any moving part. The pain was the most severe I have ever felt.  A referral to a rheumatologist revealed nothing.  My bloods were all normal, extensive testing for all autoimmune diseases, thyroid functions, inflammation etc showed nothing.  The only thing that was raised was ferritin and vit D was low but not terribly so.  MRI scans have picked up no joint disease.  I am on maximum dose anti inflammatories; 2 grams daily of nabumetone plus codeine. Rheumatologist is scratching his head and thinks it may be hormonally linked.

In the meantime my moods are at an all time low, chronic brain fog, no libido and terrible itching which I believe is formication.  I cannot leave the house to socialise in any way as I am either in chronic pain or itching my arms till they bleed.  I also have night sweats and terrible moodiness, depression etc.

After spending many hours on the internet I believe that this is all hormonally linked and so had a consultation with John Studd.  Blood tests revealed my hormone levels were at what I believe is a high level - oestradiol 693 pmol/l and testosterone 0.7 .  I started the regime of 2 pumps oestrogel daily plus a tube of testim gel spread over a week.

After a month my symptoms were not relieved and so oestrogel raised to 4 pumps daily and 1/4 tube of testim daily.  Bingo within 6 weeks I felt great.  Moods lifted, pain and itching subsided, night sweats gone and I liked my Husband again     This lasted for 2 weeks until I hit a brick wall and all symptoms came crashing back with joint pains in particular far far worse. I do not understand why. It seems the HRT started to work and then stopped?

I have emailed John Studd (waiting for reply) but I have a sneaky suspicion that Oestrogel is his only party trick and I'm not sure he has a plan B. Any research I have done on menopausal arthralgia seems to state that it is greatly relieved by HRT.  How comes I am suffering so badly when I have always been on a high level? I am hanging on by my fingertips.  I hear people saying that a hysterectomy was the best thing they've ever done but for me it has been the worse four years of my life. Please, where do I go next? So sorry for the massive rant 

[Sarah2]

Hi

I tried to send you a private message about a gynae I see who may be a better bet, but it looks as if you cannot receive PMs yet a a newbie?

Would you be interested in the name of someone else in London? If so happy to put my email address here briefly.

[itwillbebetter]

Hi Sarah Yes I most definitely would! Thank you x

[itwillbebetter]

Thanks got it x

[Hurdity]

Hi  itwillbebetter

Sorry to hear about your problems.

It is a difficult issue this - trying to find the right levels, especially I gather after a total hysterectomy, and especially at your age.  I hear from others on here that hystersisters is a good site and also has a forum
http://www.hystersisters.com/

Some women swear by gel but I think it may be more difficult to obtain a consistent dose with gel than with say, patches, because from what I've read it does depend on applying the right amount over the right area to ensure it is all absorbed before it's dried ( I have never used gel).

Your mood could have lifted over those 6 weeks due to the increase in testim but it is difficult to see why you are still suffering despite the high dose of oestrogel. Your oestrogen levels as measured before you started were indeed high and you should not normally experience menopausal symptoms with readings like this.  I presume these high leves were due to the Zumenon?

If you have only been on the gel for 8 weeks then it will take time for your body to adjust from the tablets to the gel (although you didn't say if you were on Zumenon all this time), although the gel does deliver oestradiol directly into your system if applied and absorbed correctly.

Have you had another blood test since starting the gel to see what your actual levels are like now? This would at least give a clue as to whether you are absorbing it correctly.

There is a condition known as tachyphylaxis which is basically a sensitisation to a drug or treatment. However the condition is not usually apparent except when what are known as supraphysiological levels of estradiol are reached - ie very very high. Prof Studd talks about this on his website.
http://www.studd.co.uk/implants.php  Article on implants - scroll down.

I know though, finding the "sweet spot" - the right level of estradiol for each of us - can be tricky.

If you look at the Find a Specialist on this site - you can search for other gynaes.
http://www.menopausematters.co.uk/clinicfinder.php

Another really good gynae is one of the big names in Menopause and a recent Chairman of the British menopause Society - is Nick Panay (London). Depends where you live. He practises privately but quite expensive I gather, but also on the NHS in London I think if you live there and can get referred. One woman some have recommended is Annie Evans - also listed in SW England.

You might want to consider patches as an alternative - they are larger but do give a more consistent dose - or rather are not reliant on individual variations in how it's applied. I use Estradot - these are very small compared to the others, which you would want if having a higher dose.

Before going to see another specialist you could always have an e-mail consultation with Dr Heather Currie who manages Menopause Matters and practises in Scotland. It only costs £25 and she would at least give her opinion if you gave her all the information.  Home page - scroll down http://www.menopausematters.co.uk/

I presume that your thyroid has been checked?

Hope this helps and you manage to find a way of relieving your symptoms.

Hurdity  x
 

[Dizz]

I'm not surprised you're at the end of your tether! 

Just a thought, but has Sarcoidosis been mentioned/tested for?  It's fairly rare, but the joint pains, night sweats and a few other things you mention would fit.  I suffer from it and it can affect just about every part of the body.  Maybe it's already been discounted, but thought I'd mention it anyway.

I wish you all the best in finding a diagnosis.

[itwillbebetter]

Thank you all so much for taking the time to reply.

Hurdity - yes the oestrogen level was taken whilst I was on zumenon.  I stopped taking that the day I started the oestrogel, so there was no over lap. It may well be that the gel is not working so well for me and my levels have now fallen; you're right another blood test is needed.  However even when my oestrogen levels were at a high of 693 I still felt awful, I'm wondering how much higher they need to be to make me feel human again and if that would then put me at risk of other complications? I still cannot understand why I had the two weeks of feeling fantastic, only for it to completely reverse?

Prof Studd has emailed me back and has stated that I am at where he would expect me to be and to give it another month.  Another month after four years doesn't seem like a lot but it is to me when I have a young family that I'm struggling to look after.  He also confirmed what I originally suspected in that he has no other regime to offer.

 My Husband is fantastic and we've agreed to try the further month but with a back up plan of seeing another consultant for a 2nd opinion.  That in itself causes me further worry because I have lost all confidence in myself in having the ability to choose another consultant.  I am very very lucky in that I can choose to go privately but I just don't know where to go.  Nick Panay looks interesting but I believe that he goes along with the same regime as Studd (ie oestrogel and testim)  I would hope that he has a better manner because quite frankly dealing with Prof Studd has knocked the stuffing out of me!

My thyroid has been checked and although fluctuates it has always been in the top end of normal range.  I have argued that normal does not equate to optimal but I don't know whether I am clutching at straws.  My ferritin level was high and I'm wondering if this is due to a lack of a monthly bleed?  Also cholesterol was high for the first time in my life, I have heard that oestrogen can do this?

Dizz - thank you so much for replying. I have had a look at sarcoidosis but I don't seem to fit. But thank you for input.

So sorry for long post but one last thing; can anyone tell me how menopause ends when it was a surgically induced menopause?  I've often thought of it as a journey.  The hormone levels gradually decrease until they permanently become low and stable and symptoms end.  How does that work for me? I'm not going through a gradual decrease, one day I had ovaries, the next I didnt! Not really a journey, more of a day trip  I guess I'm sort of asking as to how does surgical menopause end? Sorry if this seems a dumb question but anyone who has ever met John Studd will know that he is not the sort of person you can actually ask questions 

[Hurdity]

Hi itwillbebetter

My intuitive response will be that if you weren't feeling better on that level of oestrogen - then it is not more oestrogen you need. Firstly you increased testosterone - which you did say made you feel better, and I know ( only from what I've read) that decline in T is dramatic after hyster.

I can't answer re how long - but even when your hormone levels are stable - they will still be low (Oestrogen and testosterone) and you will still benefit from supplementation - although I presume over the years as you pass 60 you might want to reduce slightly? You should replace oestrogen anyway at least until the natural average age of menopause ie around 52.

Do ask what your actual reading of thyroid hormone is? The reference range for normal has changed from what it used to be. Even if you are within the normal range you can still experience symptoms - normal for you maybe different. Have a look at thyroid UK and see if you have any of the other symptoms. You may well need to consult an endocrinologist. The problem is with specialisms that specialists only look at things from their perspective - so a gynae may not look in detail at thyroid.

Some women (including a friend of mine) get fibromyalgia (main symptoms fatigue, joint aches & pains etc) when her thyroid levels are low and she takes extra thyroid hormone regularly to keep herself symptom free, although it flres up sometimes.

There is also an interaction between oestrogen and thyroid metabolism that I don't fully understand.

Prof Studd is really at his best for prescribing bio-identical HRT to women who have suffered taking the synthetic types and also who need T prescribed when their own GP cannot ie restoring hormone balance to women who are deficient, with minimal side effects. I think it is definitely tricky after hyster.

I have heard good reports about Nick Panay - there is someone on here who sees him but I can't speak for her - and maybe she will read this. If I needed to see someone, he would be my choice because like John Studd he has actually done the research and written the scientific papers - he is much younger.

Do keep us updated...

Hurdity x

[paisley]

Hi itwillbebetter,
                    I haven't been on here for ages but had to reply because of you going to DR Studd. I started peri menopause March 2009 and have struggled ever since. I like you went to see Dr Studd and was given his recipe of oestrogel and testosterone. I started the lower dose and still felt bad so like you he upped mine and a couple of weeks later like you I felt really good but it didn't last. He recommended a hysterectomy because he said it would level my hormones out. It was the worst thing I could have done as I felt even worse. Anyway after all this Dr Studd wasn't interested because the oestrogel hadn't worked, he didn't know what else to do and was really quite abrupt. I live in Spain so find it hard to get back to U.K to see anyone and for the past few years have been struggling on and going further downhill because I have just been trying to work it out myself and taking too lower doses. Tried a Spanish gel but that was too low, I have tried elleste solo, sandrena gel and now on .5 estradot patch. I think with all the tinkering I have done my oestrogen level is at a low level hence the symptoms I have a referral to see Dr Panay by my GP in U.K so hopefully he will be better than Dr Studd who I paid for privately. Also with me if I take more testosterone it gives me a boost which is not so odd because as I have learned if we are lacking in oestrogen taking testosterone will convert it to oestrogen to try and rectify the shortfall. Don't give up and keep seeing someone who will make a difference and don't leave it as long as I have before seeing someone else. It is hard here in Spain because we don't have any good menopause specialists. I have heard that Dr Panay is open to lots of different hormone treatments and not just oestrogel.

[itwillbebetter]

Paisley, hello! Thank you so much for taking the time to reply.

Wow! I cannot believe this has happened to you as well, although the more research I do the more I regret my decision to book that consultation with him.

How long do you have to wait to see Nick Panay?  I hope its not too long and he can sort you out.  I am terrified that I will never feel better because on the face of things my oestrogen levels are high, so its not just a case of getting them raised to feel better.

I feel so low today, I am in so much pain and cannot think straight.  I have a big black cloud over me and feel like I have cotton wool in my head, such is my inability to think clearly.  Your post has reinforced my gut feeling though as to not wait another month as John Studd wanted, but to seek further help sooner.  I realise that improvements don't happen that quickly but I feel worse every day.

Trouble is I'm so terrified in choosing someone else to see.  Every action I take in trying to sort the issues out seem to end in me feeling worse

[paisley]

I don't think your oestrogen levels are that high and we all need different levels to feel good so for you that might still not be enough, you might need levels of over 1000 to feel better. Also that is a test done on oestrogen in the blood it doesn't mean it is reaching the right receptors  in your body, it could somehow be that something is blocking the oestrogen from reaching the right places. I know you think that seeing someone else might make things worse but look at it another way he might be the one and until we try we just don't know. He might do some more in depth tests to see why your hrt isn't working and offer some different solutions. I don't know when my appointment is yet but hopefully soon. Before my hyster I had levels of 1500 and still felt awful so it is just trying to find the right balance no matter what number the oestrogen level is. Don't give up you will get there every time you see someone else it is a positive move forward, I have left it far too long and kept hoping it will just get better on it's own or I thought I could just fix it myself which I can't.

[Butterfly22]

Just wanted to say hi, im having problems trying to find a HRT to so cant really advice but hope you get sorted xxx

[loftus2000]

Hi I am 64 and have been on HRT for over 10 years.  My doctor has now stopped me taking it.  My life is horrendous, I have tried and paid a fortune for alternative supplements, none work.  I know I can buy HRT on line and pay for it but why cant I have it if I want it from my GP,.  I would sooner take the risk which is minimal than carry on the way I am.  I have 2 children age 15 and 9 and two foster children age 10 and 16 and they are suffering too because of my moods.  Can I demand this

[CLKD]

Go back to your GP!  Refer him to this Forum and get him to e-mail Dr Currie for advice    Women know our bodies best and if your general health history does not point to any cancers, then I can't see a reason why a woman should have to stop.  Tell him that he is likely to see less of you if you go back onto HRT than if you try to continue without treatment!

 

[loftus2000]

Thank you for your advice. I have another appt next week so lets see what they say.  If not I will buy them on the internet.