Premarin...try it again - surgical menopause?

Thank you so much, something to look into. Been told fibro but my symptoms are not consistent with it Can you please tell me more about when you got it and how you were finally diagnosed etc? Thanks so much.

It is a genetic condition which I did not know I had. I had to have a hysterectomy and never ever felt better. I was so tired, whole body aching, foggy fluey brain, memory bad, hair loss, my joints painful, eventually staggering and slurring with fatigue, left side chest pain, crying trying to get ready for work, too hard to work out what to wear, then one of my hips broke up after 9 years without diagnosis. I had so much iron in my blood it could not get into the finer capilliaries that feed the hip bone, so my hips broke up. Excercise! impossible unless I want to spend the rest of the day in bed. My stupid dr thought I would feel better after a good brisk walk in the morning!!! Now this can come on with menopause too when you stop menstruating. The iron builds up in the body (if you have the genes).

My symptoms were pre google so I could not try to find out for myself. If only my dr had done a simple blood test called Iron Studies. It involves Serum Iron, TIBC, Ferritin and Transferrin Saturation %. If your TS% is >45 (a definite marker) and your ferritin is >300, you are loading iron that once was lost with menstruation. If those levels are positive, then a genetic test is required. Treatment is having venesections (removal of blood like donations) at certain frequencies depending on your ferritin levels.

It is also a hormone thief, dangerous to the liver and other organs. Sometimes, although I am on oestrogen, I have to wonder if returned symptoms are because my oestrogen implant is running out or is it haemochromatosis.

Even if you test negative, donating blood now and then could make you feel better.

I am sorry you have it. Do you feel better most of the time now you have the transfusion treatments? I can't believe how close to my symptoms they all are and looking back it actually started in the year before my hysterectomy and BSO, got worse after hysterectomy but started when my periods stopped with HRT. I really don't think I have fibromyalgia but they seem to label you with that when they don't know what's wrong. Amazingly, I have a new GP and I spoke to her today and said I want a second opinion as I know there's something not right. I mentioned haemochromatosis and

I'm having the blood tests tomorrow! Are you still on oestrogen only implants for HRT? Thanks again

Yes, I am still on oestradiol only implants. Although I do resort to the oestradiol patches in between implants. I don't use anything other than oestradiol oestrogen. I always have a spare script for the patches available. When the pellets were available from pharmacies (with script), 100mg used to last me 9 months (for some people 12 months), but the ones now made by compound chemists do not last that long and have an irregular lasting time. So when I realise menopause symptoms have returned (or is it the haemochromatosis??), I start using patches until I get to my 3 monthly gp visit for a script, then order them from the compound chemist and then wait for my next 3 month appointment for the implant. 3 month visits are not imperative but I prefer to wait that long between appointments because they are bulk billed (free).

I also use a Vagifem pellet every other night and Ovestin cream every night to smear on the outside really to keep soft and pliable. My body needs lots of oestrogen.

I still have fatigue and accompanying body pain because the diagnosis was so late and a lot of damage was done. I have short days. Much easier to cope with since I had to stop work. Detected and treated early is important. It is not transfusions (which is the receiving of blood) but it is the taking of blood (about a pint). As long as my Hb is good, it is not a problem - I look forward to getting the stuff out of me. I never have low Hb, anyway. even when my venesections were weekly. Now they are 3 monthly monitored by a haematologist.

It is not a death sentence as long as it is diagnosed and treated appropriately. It is better to have a treatable condition than something that makes your life miserable and there seems to be no answer for it. Ask for a copy of your blood results and please let me know.

Hi I'm glad you at least seem to get relief with the implants. You've been through a lot.

Alas my ferratin came back normal so GP will not do further tests. My bloods for estradiol came back at good, high levels so no idea why my symptoms all point to low E. Back to the drawing board! Thanks for your input, much appreciated.

Your TS% is the marker. I recently had problems of severe menopause symptoms even though my oestrogen levels were very high. I started back on patches anyway, and my symptoms were relieved. So I was using patches as well as the pellets. I went in search for a cause. I found that if our SHBG is high, it blocks the oestrogen from getting to the tissues that need it, but a lot is circulating in our blood. Boron helps unblock oestrogen if this is the case. I am currently trying boron as it has a lot of other promising properties. Google "Nothing Boring about Boron". Only been on it a short time so I can't report anything yet.

However my SHBG was normal. My gp said to try boron anyway. She also muttered something about oestrogen receptors. Like I was born with too many which require a lot of oestrogen. I cannot find anything on the internet yet that explains that, as I like to read it for myself.

Sorry for the delay. How are you getting on? I'm thinking if trying Duavee / Duavive.

LouLou46,

Does your pellets include testosterone?

Hi, they did but it didn't help. I missed it out of last one

Might have to add a additional testosterone pellet from your original insertion. Sounds like a testosterone issue, fatigue, low libido, hard time with exercise. They likely put on testosterone pellet in and you need more. Did they test your numbers at the 6 week mark after your pellet insertion to see where your numbers were at? I'm on pellets and get labs regularly. At peak, my testosterone is close to 200 and then slowly comes down during the 3-4 months pellet cycle. Just a suggestion. Did your doctor put you on dim too? That helps balance estrogen and plays a important role in hormone replacement along with other supplements.

Thanks for the info. Unfortunately I can't seem to tolerate testosterone, it made me fat and grumpy with side effects like too much estrogen. Doctor thinks I don't metabolise it properly and it converts to estrogen. Very annoying as everything points to low T symptoms. I have some DIM but thought it reduces estrogen so haven't given it a good try. Have you always been on pellets?

Weirdly, it is now 6 weeks since last pellet insert and also start of boron and the oestradiol pellets have not kicked in so I am still using patches!!! I phoned the compound chemist who lives in another state to let him know and he said he has not have anyone else tell him that. I got these pellets from a different compound chemist to my previous supplier but he says the ingredients are exactly the same as the original. However to explain that the pellets do not last as long as the original, he says they cannot compress the ingredients as hard as the original, therefore it breaks down quicker (in that case, it would also be less oestradiol than the original). They also have a different base to the original - the base being the binder of the oestradiol.

He did not believe boron had anything to do with my problem as boron is supposed to release oestradiol (and testosterone for males) from being bound up. I just cannot find anything relevant about oestrogen receptors. This chemist says I must have less receptors - opposite to what my gp says. This chemist was also stuck on the WHI results constantly warning me about using oestrogen and I should use progesterone too. I reminded him that I had a hysterectomy and that my previous experience using progesterone caused disaster and put my oestrogen OUT of balance. I think I am still paying for it.

He also suggested that I stop using oestradiol and go cold turkey for about 6 months. If he was standing in front of me I would have punched him in the nose and blamed it on menopause. 😃 I had a disastrous week last November when the pellets were giving me symptoms of running out, but my blood levels were high. My gp said I did not need anymore pellets. Two weeks later, physically and mentally, I was in a total mess which I let happen for one week, until I slapped on a patch and life was sweet and calm again. I don't think I and my husband would have survived any longer.

Then he suggested that I constantly keep up the insertion of a new pellet every 3 months and don't use the patches in between. Doesn't make sense to me.

I am in communication with another woman who, strangely, has better results from the pellets supplied by this compound chemist and not so good from the compound chemist that I used originally. I don't know what the base product that is used by my original supplier. If it is different, the answer may lie with that.

In July, I have an appointment with my endocrinologist so I am hoping he can solve the problem.

I just googled Duavee, and I did not like what I read. Personally, I will only use oestradiol oestrogen support.

HI LouLou46,

Dim works in different ways. It keeps estrogen balanced and can keep testosterone from converting to estrogen. My husband is on pellets too and takes dim for this reason too. How often do you get your pellets? For women it varies from 3-4 months depending how active you are. I started on bio identical creams a few years ago and switched to pellets last fall. I am on my third pellet implantation with no issues. If you still have a uterus you should be taking progesterone also. If your doctor isn't checking labs especially initially at the peak of when you get your pellets ( 6 weeks ) I'm not sure how you can tell what your estrogen/testosterone levels are or should be to make the determination if you need more or less of one thing or the other. I still think your symptoms you describe are a low T issue. My thoughts.

Stop HRT for 6 months... Ha!!! Yeah would like to see how he would cope with that! Hope you're getting somewhere.

I started them every 3 months, then 4 and now 6. I think you're right about testosterone so maybe should try the DIM. Thanks for your thoughts. It's definitely something more than estradiol as my levels have been low,middling and high and still have all the issues.

I decided to bite the bullet and not put a patch on last night. Usually I get a wave of depression or anxiety at least by mid-morning when I forget to replace a patch. It is now 24 hrs later and so far so good. If this works, then the oestrogen has kicked in but not as noticeable as before.

It is weird but being late with a patch gives me those waves of depression or anxiety. When my pellets run out, it is bang on head sweating. I don't get flashes/flushes - the sweating is consistent - my hair drips with it. Then the other rot sets in.

I had overlooked the safety of the fall back position of slapping on a patch if the pellet fails, and past from experience, I get immediate relief. I was so afraid that of a return of 'that week'.

So fingers crossed! 😃

Indeed fingers crossed for you. I've decided to quit pellets. 20 months trial enough for me. Onto the next experiment, possibly back to orals with some testosterone and progesterone, not sure, just know not getting anywhere. Hope you now get a good spell.

So far, so good. Just did not get the usual messages from the pellets. For yourself, why not oestradiol patches?

Good.

Patches or any straight estradiol does not work well for me. Four years into trying to sort and would rather do transdermal but admitting defeat.

I cannot understand that, but that is a great shame. Back to the drawing board for you. Don't give up.