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C-Section, Fibroids, Myomectomy, Hysterectomy & now this - Please help.

Hello, I am new and only beginning my journey and hope to gain some knowledge, wisdom and facts to help me and help my doctors. I hope someone will be able to help me as there is so much information out there it can be a little overwhelming.

My story is this ( a little long but I will try make it a short as poss): Age now: 42 Occupation: Dance Teacher, Married with 3 year old girl. From UK.

Fell pregnant naturally in May 2011 (age 38) & 3 months later was told I had a large fibroid growing with my pregnancy that would make it impossible to deliver naturally due to placement. Until then, I never knew about Fibroids! The fibroid grew to 17cm diameter during the pregnancy and I had a c section. they didn't remove it then due to risk factor. 3 months later, was prescribed Esmya to try shrink it prior to myomectomy which I had in August 2012. Felt fine & recovery was fine.

Feb 2013 went to doctor as feeling tired, depressed and not my usual self - thought it was just having a small baby.
Blood tests: FT4 10.6pmol TSH 2.92mu/l FSH 4.1iu/l
Prog 33nmol Vit D48nmol
Doctor said all result were normal apart from Vit D and was told to take 1-a-day Vit D supplement. Was also prescribed Zoloft anti depressants which I took for 2 weeks and stopped as I didn't like the effects and felt that I was NOT depressed rather that there was something else wrong but not sure what.

Feb 2014 went back to doctor as I found a lump in my lower abdomen which I was sure was a fibroid and had symptoms as before - pressure, needing to urinate a lot and periods became heavy and constant back ache. Was referred to consultant who did MRI and confirmed presence of 2 fibroids, 1 3cm and one 5cm. Due to previous history and rapid growth of the fibroids I was advised hysterectomy. Again was put on ESMYA for 3 months to try shrink them before surgery. Again, this didn't work and had hysterectomy in June 2014. Was referred to Haematologist & Endocrinologist in July 2014.

Test results: FT4 11.4pmol No TSH taken FT3 3.44pmol FSH 6iu/l Prog 1.5nmol
Estradiol 31.5pmol (I specifically asked for FT3 & FT4 - although he didn't want to take this initially)

After a good recovery of hysterectomy and feeling much better in myself and physically in December 2014 I had what can only be described as extreme PMS with horrible mood swings, terrible bloating and water retention, breast tenderness and swelling like I never before and just feeling very agitated and low. This state lasted a whole month. However looking back, I started having bouts of hot flushed in around November 2014.

I read up on my symptoms and thought I may have prog deficiency so managed to get some Natpro which over the course of 2 weeks eased my symptoms and I actually lost some weight too that I had struggled to lose for 2 years. However, I stopped when the tube ran out.

Back to the doctors in March 2015 and told her all my symptoms as they had returned end of January but worse and more constant than before & also including low libido and feeling very tired, low and generally not feeling 'normal'. She wouldn't take FT3 as she said it was not necessary and also wouldn't take Progesterone as I'd had a hysterectomy so was also not necessary.

Blood test results: FT4 12.6pmol TSH 2.39mu/l FSH 50.5iu/l Estradiol 164pmol Vit D 114nmol

Was called back into doctors and have been referred to another gynaecologist/endocrinologist as she cannot make sense of my results. She admits there is a problem & I was right in coming to her however as I am only 42 some of my results shouldn't be what they are. My consultant appointment is only in 6 weeks time and I feel like I can't continue to feel like this any longer let alone wait for 6 weeks but I don't have a choice in getting an earlier appointment unless I go privately.

So... that is a very long story and I hope someone can help me make more sense of it as I feel I am a little over whelmed with all the information I have and not too sure what to do now.
I have ordered some more Natpro in case I should take it again but wanted to get some advice first.

Thank you for reading & for a wonderful place of information.

Nicole

Comments for C-Section, Fibroids, Myomectomy, Hysterectomy & now this - Please help.

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Apr 13, 2015
 C-Section, Fibroids, Myomectomy, Hysterectomy & now this - Please help.
by: Wray

Hi Nicolle It's a pity you stopped the progesterone! Although I'm happy it did help you for the duration of the tube. Your results all make a great deal of sense when you read our page on Peri-menopause and Oestrogen Dominance. We also have a page on Hormone Testing you could look through. And another on Fibroids. Your ratio of P:E2 was 48:1, that's taking the first test results you had. It's very low. Your oestrogen has risen considerably since them, and no doubt your progesterone is still very low, hence the worsening of your symptoms. Your Vitamin D is still too low, although in the views of the doctor she is probably now telling you it's fine. It should vary between 175nmol/L to 250nmo/L. I don't know of one person in the UK who I've asked to have a test done, who's had a normal level! A lack of vitamin D reduces the benefits of progesterone. Many studies have found low vitamin D levels are statistically associated with the occurrence of fibroids. Not only that, but the lower the level, the larger the fibroid. Another nutrient you might consider taking is taurine, a low level is also associated with fibroids, see here. I'm not sure if you've ordered the Natpro from one of our UK distributors, or from the USA? But if you want to get it locally, and to chat to someone living there about both progesterone and vitamin D, please contact Jules in London, her email address is julesvs19@gmail.com Thanks for the kind words about the site. Take care Wray
Apr 13, 2015
 Thank you
by: Nicole

Dear Wray, thank you so much for your reply, I do t know how you find the time to do all the work you do for us all, thank you!
I will have a look into your suggestions and will start on the Natpro immediately.

Please could you advise how much I should take. I did take 1tsp over 2 doses per day before but perhaps I need more. I will up my Vit D intake and get some Taurin. Can I ask, when I finally get to see my new doctor, should I mention to him the Natpro as if he takes more blood tests, perhaps my results will be different & 'normal' to him. Are there some more specific blood work tests I can point out to him I may need (if hopefully he will listen)

I am very happy to have found you all but at the same time very angry and sad that I had a hysterectony due to misinformation and not being pointed in the right direction to explore other alternatives. Sadly what is done is done however I will move onwards and hope to make myself better with or without our medical professions help. Thank you again Wray.
Apr 13, 2015
 Thank you
by: Wray

Hi Nicole Thanks for the kind words! I'm sad too that you had an unnecessary hyst. I wish I could tell you how much progesterone you'll need, but it's always trial and error. I would suggest starting on nothing less than 100mg/day, or better still the amount you were using which would have been about 170mg/day. If you do mention progesterone to your doctor he could just dismiss it as most do. Jules knows more about British doctors and their reaction so I suggest chatting to her. Please make sure you take enough vitamin D, and please have a test done. Without a base line you won't know what to aim for. Take care Wray
Apr 15, 2015
 How much?
by: Nicole

Hi Wray and sorry to bother you again
Please if possible could you let me know how much and when I should take Taurine and do I need to take anything else with it to help absorption, same as with Vit D. Thanks so much for your time. Nicole
Apr 16, 2015
 How much?
by: Wray

Hi Nicolle I usually say about 2000mg/day, it's somewhere to start. We devised a protocol to take for strengthening the uterus, and to prevent heavy and or continual bleeding. It's at the bottom of our page on Menstruation. Take care Wray
Apr 22, 2015
 Swollen breast not getting better
by: Nicole

Hi Wray
I have upped my dose by 1/4 tsp per day. I am now using 2 & 3/4 tsp per day (over 3 applications) I increased as although my mood symptoms have got better, my breasts have become so swollen, hot & painful. They are not getting any better on this dose either. Do I continue to up my dosage?

I have not taken any Taurin as I no longer have a uterus although do still have my ovaries & couldn't see the benefit although I may have misunderstood why you suggested it.

I have bought some Kelp supplements which I read that Iodine could help with the painful breasts. Apart from Vit D (I take 3000iu per day) are there any other supplements I should take with the Kelp? I have also started taking Mag.

Thank you as always for your wisdom, kindness & patience.

Nicole x
Apr 23, 2015
 Swollen breast not getting better
by: Wray

Hi Nicolle Please don't keep increasing the amount of progesterone. Instead please have a vitamin D test done. If you are only taking 3000iu/day then your level will be far too low. You need to take at least 5000iu'day preferably 10,000iu/day. A lack of vitamin D reduces the benefits of progesterone. I can't stress this enough. I suggested taurine, as I did vitamin D, not so much for the fibroids, as obviously you don't have them anymore, but you do still have the lack of antioxidants that caused the fibroids in the first place. Simply removing the offending article is not achieving anything. And do you know how much iodine is in the kelp you are taking? It varies considerably. It's far better to take a pill or solution with a known dose. And please try rubbing the Lugol's tincture on your breasts. I've no idea if it will help, but it has helped many women. It's a much cheaper solution than using progesterone in ever increasing amounts. Please try this. Take care Wray
Apr 25, 2015
 Confused & grateful too!
by: Nicole

Dear Wray
Thank you so much for your response and as always taking the time to help so many of us. You are an angel.

I am very confused though and wondered if you would be so kind as to clear some things up for me.

I increased my Natpro by 1/4 tsp per day as although I had better moods, I still have a lot of water retention and swollen, hot and painful breasts. I assumed this was ED symptoms caused by the Natpro and that there would subsided once my levels had evened themselves out. This has led me to taking 2 & 3/4 tsp per day of Natpro (over the course of the day) & sadly my symptoms hand not got any better after the increase - hence me writing to you again a few days ago just to be sure I was doing the right thing.

Now you advise I stop taking such a high amount but I am unsure why? and also how would be the best way to go about reducing and when would I know when to stop?

I am sure these questions may seem very clear to you but at the moment they aren't at all to me, I am sorry.

Secondly I wondered if you could advise me about the vitamins and amounts I am now supplementing with.

Vitamin D3 3000iu/day which I will increase to 5000iu (the last Vit D test result I had was in March and my level was 114nmol which my GP said was 'normal'

Kelp (iodine) 450ug 1/day (have taken for 3 days now)
Magnesium 250mg 1/day at night
Vitamin C 1000 1/day

Taurine 500mg (haven't taken yet as unsure how much or why but now I understand)

Do I need anything else? Selenium or Multivitamin?

i have a consultant appointment booked for June (earliest possible date on NHS here in UK) to check my last lab results which were:

FT4 12.6pmol
TSH 2.39mu/l
FSH 50.5iu/l
Estradiol 164pmol
Vit D 114nmol

I appreciate you are an exceptionally busy & in demand woman and I truly admire and respect all the fantastic work you do.

Just looking at ways to help myself as I have a feeling I am in for a momentous battle with doctors over here in the UK.

kindest regards, and thanks
Nicole
Apr 30, 2015
 Confused & grateful too!
by: Wray

Hi Nicole It can be confusing. You yourself have said, and again above " sadly my symptoms had not got any better after the increase" You then say "you advise I stop taking such a high amount but I am unsure why? " Simply because it's not working. I believed this as I suspected your Vitamin D level to be low, which it is. Please read this page, I go into great detail about how much we need and why. Specialists are recommending levels between 175nmol/L to 250nmol/L. Sadly I don't have the time to advise people on what vitamins etc to take, besides those I mention on the site in various text pages I've written. I would ask you again to try rubbing the Lugol's solution on your breasts for about a week. Your lab results are all in the normal range, see our page on Hormone Testing. But not having a progesterone result there's no telling what your ratio is. They haven't done LH, which is normally done if FSH is done. And they have haven't checked T3 either, if this is low then you do need selenium. It's a vital co-factor in it's conversion from T4. Please get your vitamin D levels up quickly, I suggest taken 10,000iu/day until they are. Take care Wray

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