still feeling zapped: bleeding showing no signs... - Thyroid UK

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still feeling zapped

mandy72 profile image
14 Replies

bleeding showing no signs of stopping

i took norethisterone for a week and there was no change at all

i know if i go back to drs they will only tell me to take them again

i have no energy (tooth and head not helping but on antibiotics)

is there anything i can take to increase energy that isnt going to make my heart go crazy fast?

i know its prob lack of blood as this is now going on 10 weeks, i have appointment with dr 9th june for smear and to discuss what they are going to do about fibroids

apparently my iron levels are good according to bloods (posted on here)

im taking one spatone sachet a day 4 hours after thyroxine

the only time i really move is to go upstairs to toilet, dont like risking shopping because sometimes the bleeding suddenly becomes heavy

i know i should see a dr but i feel its just a waste of time, ill be given more pills that do nothing

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mandy72
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14 Replies
humanbean profile image
humanbean

Why do you take such a low dose of supplemental iron? Spatone sachets have 5mg of pure (or elemental) iron per sachet. When I was dealing with an iron deficiency I was taking 207mg of supplemental (pure) iron per day.

mandy72 profile image
mandy72 in reply to humanbean

its what the dr prescribed

even says on the sachets 1 a day

humanbean profile image
humanbean in reply to mandy72

5mg of iron per day will do nothing. You need to buy your own supplements. You also need to know how low your iron, ferritin, transferrin saturation, haemoglobin and red blood cell count is getting so you can monitor the success (or lack of it) of any supplementation.

mandy72 profile image
mandy72 in reply to humanbean

according to my bloods haemogoblin estimation 127 g/l (115-165)

mean corpusc. haemogoblim 30.8 pg (27-32)

red blood cell count 4.12 10*12/l (3.8-5.8)

humanbean profile image
humanbean in reply to mandy72

That is better than I expected. I still wonder what an iron panel would show though, if you are bleeding every day. Eventually your body won't be able to make up the loss and life will become unbearable.

I kept being told my iron was fine when I had a GI bleed (rather than a gynaecological one like yours - but blood is blood, wherever it comes from). It was only when I bought my medical notes from my GP after my GI bleed was finally found and fixed that I found a letter showing my serum iron was under the range in 2010, although at the time my ferritin was in range. Inflammation can boost ferritin and give a misleading impression of how good a person's iron is.

mandy72 profile image
mandy72 in reply to humanbean

i am due a repeat blood test for glucose, sodium and thyroid friday ill ask the nurse to do full iron panel and if she refuses ill have to find the money for a private test

theres deffinatly something going on and my iron levels have to be effected with the amount of blood loss

phoenix23002 profile image
phoenix23002

You need to find a doctor who is knowledgeable about female hormones. Progesterone is often prescribed to help slow down bleeding. If you go this route, try to get bio-identical progesterone and/or natural progesterone prescribed. Bleeding for 10 weeks is NOT normal, not by anyone's standards. OB/GYNs will often prescribe high doses of progesterone temporarily to get the bleeding under control. Have you had saliva tests of your sex hormone levels?

mandy72 profile image
mandy72 in reply to phoenix23002

the meds i was given made no change at all, i really dont know what to do now as i cant afford a saliva test so will have to hope dr refers me to someone in the know

i cant take much more of this its just running me down

i have my grandson staying over for a few days from tomorrow and he is 5 and all i can do is sit and watch him, also getting to meet new grandson whos almost 3 weeks old for the first time at least i can cuddle him

i just feel like my life is slipping away before my eyes

phoenix23002 profile image
phoenix23002 in reply to mandy72

That medicine you were given, norethisterone, is a synthetic form of progesterone (I looked it up). Some women need to take some form of progesterone for longer than a week for it to have some effect.

You are in the UK (I am in the US) so wouldn't the NHS cover the costs of testing your sex hormones? Fibroids can cause excessive bleeding and just approaching menopause and our normal production of progesterone being cut off can also cause long periods. You can also purchase natural progesterone cream (applied to the skin) over the counter.

Just my humble opinion but seems to me that treating the iron is like carrying water in a leaky bucket. Low iron and low energy is a predictable symptom and side-effect of blood loss. Shouldn't the docs be looking at getting the blood loss under control... then tackle the low iron/anemia?

mandy72 profile image
mandy72 in reply to phoenix23002

the lab refused sex hormones due to me being 45, dr said that once i dont have a period for a year then ive been through menopause, so ther than paying for tests myself im doomed

dr put me on iron as she suspected anemia due to bleeding, im considering trying 2 spatones a day now to see if that helps

i see dr 9th june and im seriously considering telling her i want the fibroids removed as im not going to keep popping pills and bleeding all the time, its costing a fortune and i have to supply monthly things for 2 daughters too

phoenix23002 profile image
phoenix23002

Sounds totally nuts to me that the docs would leave you in this predicament with no alternatives. They will probably want to go ahead and give you a hysterectomy (sp) if they go in to remove the fibroids. Then you will have another whole can of worms to deal with. Our production of our own progesterone can start tapering off rather drastically during our mid-forties. It is called peri-menopause.

There is a great book available.. 'What Your Doctor May Not Tell You About Menopause' by Dr. John Lee, the pioneer doctor who discovered how important natural progesterone is to women. It is available on Amazon and is probably available used, on EBay. If you read this book, you will probably know more about your hormones and your body than most doctors and it isn't just for menopausal women.

You might give that other medication (Norethisterone) a try also ... maybe suggesting to your doc to give you a bio-identical progesterone medication to try? It can take a while for the progesterone to build up in your system. According to the book listed above, progesterone can also help to shrink fibroids. Of course, this was using primarily natural progesterone.... not the synthetic progestin.

Wishing you all the luck, my friend. Just don't let the docs sluff you off when you go in in June. No one should have to live like this.

mandy72 profile image
mandy72 in reply to phoenix23002

if im honest id love a hysterectomy ive been having long periods well over a year now but this is the longest but like you said another can of worms

i was on norethisterone for a week and it didnt help and the dr im seeing wont be open to other options, i think its all down to cost

im due bloods tomorrow so will ask for all the iron to be tested and if not ill have to go through medichecks and see whats going on as there is deffinatly something not right and you cant tell me im not anemic as the bleeding is really heavy at times

i also have high cortisol but not treating that at moment as trying to get this sorted first

magsyh profile image
magsyh

Hi I have gone through similar situation as yourself. Im now 59 and just gone through menopause. I was 50 when my fibroids started growing. It was a nightmare of heavy long periods and I couldnt leave the house. I was in and out of gynea. Had biopsies, they even at one point suggested a hysterectomy but then they changed their minds and said at my age it wasnt worth the risk as surely I should be menopausal very soon?? My heavy bleeding stopped 2 years ago but i have had light bleeding every month since. Ive been back every year to hospital for scans and biopsies but they refuse to do anything else. I asked for my hormones to be tested but always the same answer at my age its not worth it! So had them done privately last week and all levels are post menopausal. Im going for a private scan this weekend to have the bleeding checked out. The NHS just dont seem to care or want to know. I dont know if its the fibroids that are still bleeding? I was also put on norethiresterone. 2 weeks on,2 weeks off it made me very ill i was in bed for months couldnt move. It was like it shut my thyroid function down. I improved when i stopped taking it but it took a long time. I was also given lupron injections to shrink the fibroids. Please say no if they offer that. I ended up in A &E blood pressure through the roof and really scary headaches. It messes with your hypothalmus and pritruitary function and can cause perminant damage. My thyroid function has never been the same since. The only thing that helped me was tamofaxic acid which helps slow the bleeding. I stopped using it as was worried about blood clotting. Its been a long 9 years for me and its still not over yet. I also used progesterone cream to help me through as they refused me progesterone therapy they said at my age i didnt need it. How are ur vitamin d levels? Lack of vit d is thought to cause fibroid growth. I also think a lot of my problems were caused by low thyroid function esp low t3. X

Jazzw profile image
Jazzw

I'm surprised they haven't prescribed tranexamic acid - have you been given that at all? Might be something to suggest to the doctor?

nhs.uk/Conditions/Periods-h...

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