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Author Topic: Confused with blood results/symptoms and everything!!  (Read 1532 times)

Samsz

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Confused with blood results/symptoms and everything!!
« on: July 28, 2022, 07:27:41 AM »

Hi everyone,

I recently posted on here regarding not absorbing HRT....
Basically I've been on 75mcg patches for approx 9 months due to not sleeping and have been fine on this dose.
At the end of June the insomnia returned so I went to 100mcg for about 3 weeks, but with no change. I know I should have given it longer, but I just couldn't cope with not sleeping and so I jumped to 125mcg - and much much better. But the thing is that I then started to feel strange - down, crying easily (which is not me) a continuous spacey/anxious feeling and congested. Someone on this forum mentioned histamine intolerance which I didn't know about - this really interested me as I have suffered for years with congestion each month/anxiety from the spaced out feeling/sensitivity to alcohol etc and so being on such a high dose of HRT I was convinced that my blood results would come back high, but they didn't - they were 101 pmol
I know that the blood tests are unreliable, but I think Newsons Health point in suggesting having it done was that if you are on a high dose then it would be unusual for the results to come back low?
Anyway, so I had bloods whilst on 125 and then came straight back down to 75 due to the side affects - I couldn't cope with feeling that anxious all the time. I started feeling more normal the next day - but sleeping is now back to terrible.
So I really don't know what to do and would love to hear any suggestions...
Can you not absorb the patches properly, but at the same time get side affects from it?
Sorry for such a long post. I think I am going to have to make another NH appointment, its just so expensive!

Thanks for listening, Samsz
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ATB

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Re: Confused with blood results/symptoms and everything!!
« Reply #1 on: July 28, 2022, 07:44:01 AM »

Hi, sorry to hear of your issues, especially anxiety as I know how hard it is. Did you have your blood tests before a decent Newson appointment or after? I’m with them too and any blood tests they ask to be done before an appointment so they can be discussed and any tweaks to dosage can be addressed. They do normally ask you to wait 3 months before changing dose as fluctuations can cause a lot of symptoms, as you might be experiencing. This makes it hard to understand what the cause of symptoms is. Your blood results might indicate you don’t absorb estrogen or that patches don’t work for you, other women here have experienced this so should be along to share their stories with you. My doctor at Newson allows me one email question still, between appointments and now I see her yearly she said I can email blood results and if she feels a change is needed I can just do a quick and much cheaper Nurse practitioner appointment based on her guidance.
Did you do a venous blood test? Not finger ****?
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Samsz

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Re: Confused with blood results/symptoms and everything!!
« Reply #2 on: July 28, 2022, 07:52:05 AM »

Hi ATB,

Thanks for your reply - I did a venous blood test (is that best?)
My GP suggested the blood test and I had a nurse 10 min appointment with NH to check it's OK to go to 125mcg and she suggested blood test too - its the first one I've had - NH didn't request one on my first two initial appointments?
I think I will need to have another proper appointment at NH...
I jumped quickly from 25mcg to 50 then 75 at the start and it worked so well - so it's very frustrating that it's just not working anymore!
Thanks again for your advice  :)
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ATB

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Re: Confused with blood results/symptoms and everything!!
« Reply #3 on: July 28, 2022, 09:44:09 AM »

I had my appointments there 3 months apart, was that the same for you? Before the 3rd one we did a blood test, mostly for testosterone but also to check estrogen and if my feelings of high estrogen corresponded with them, which they did.  I started with gel, so 2 pumps to start for 8 weeks, then 3 pumps for another month or two and then I switched to patches and after 3 months we dropped the patch. The venous blood test is best once on HRT. The thing with increasing too quickly is it can be hard to determine what the issue is and can take longer to find your optimal dosage.
In your case you may not be absorbing the estrogen well, and the fluctuating even a little might be giving you these symptoms. It’s so much harder to figure out if you jump around with dosage though. Did you discuss with Newson your low estrogen results? Whether you see increasing or decreasing dosage, do it slow slow slow. Are you on testosterone as well? Do you take any other supplements including vitamins and if so, what do you take and when?
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Samsz

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Re: Confused with blood results/symptoms and everything!!
« Reply #4 on: July 28, 2022, 11:16:02 AM »

Yes I had 3 months apart too, but after that I had testosterone bloods through GP I didn't have any side affects at that point either...
I haven't discussed with Newson as yet - I thought I'd give it a couple of weeks on the lower dose first?
I take vitamin B12, D3 and multi vitamins.
Thanks again - you are very helpful
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joziel

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Re: Confused with blood results/symptoms and everything!!
« Reply #5 on: July 28, 2022, 12:24:07 PM »

It's all difficult because in my experience too, what you feel best on and what your blood results are, can often be two different things.

For eg, my estrogen on the 50 patch was 233nmol. So my Newson doctor was all about increasing - slowly if necessary - and so, despite already having some difficult symptoms of too much estrogen at 50 (heart palps, insomnia, throbbing at night in bed, anxiety at night due to this) I went up to 75. Then everything got a bit crazy after a week at 75, and I went to A&E I was so worried about the throbbing, high blood pressure and heart palps!!

I then reduced back to 62.5 and stayed there for 7 weeks. I fought against reducing down to 50 because my bloods were only 233nmol at 50 and I thought they needed to be more. But eventually I had to concede defeat because I couldn't live on 2 hours sleep a night. So reduced to 50 - for just a few days - because I'd had these problems at 50 on the way up, and because I had 3 consecutive nights with 2 hours sleep and couldn't function...

Reduced again to 37.5 and everything is now much much better. I dread to think what my estrogen blood levels are, but am doing a Medichecks test on Monday. I may have to reduce further to 25 as I still have a bit of throbbing and palpitations although it is now very slight and I can sleep through it.

It is worth saying that Newson Health and the BMS have completely different takes on all this. Newson seem to think everyone needs a lot of estrogen - typically 75-100 or even more. They want to see bloods at least 300nmo + and don't seem to pay much attention to your symptoms if they get worse in this process!! They appear to assume you will need a lot of estrogen (ie my Newson doctor said I would probably need a lot because I was 'quite young' still (44yo)) and then seem to be obsessed with estrogen blood levels over symptoms.

The BMS advise starting low (25mcg) and remaining at each level for 12wks. Only increasing if your peri symptoms continue. If you increase and your symptoms don't get better or go, to reduce back to previous dose. They don't recommend ANY blood tests until you get to 100mcg and still feel you have symptoms - in which case you should do a blood test to check you are absorbing the estrogen - but there is no recommended minimum blood estrogen level in their eyes, it is all about symptom control. They believe that even low levels of estrogen are protective for bone health. (And actually there is a lot of research for that, I posted it in another thread.)

I started out being a huge fan of everything Newson and to some extent I still am. But you need to be aware of this bias on their part with deciding what to do...

I keep finding women online who have relatively low estrogen levels on bloods (as I do) but still are reacting as if they are high in estrogen, in terms of side effects when taking estrogen. Unfortunately some women just stop HRT in this situation because they think it's not for them or doesn't suit them - and then lose all the benefits of it, so I do think as an approach it backfires if the objective is to help women.... Of course some women need high estrogen to function and feel normal but there seem to be an equal number who are being overlooked here, who just need a small amount... and don't get a chance to learn that, because they are escalated ever upwards or started too high....
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Floo36

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Re: Confused with blood results/symptoms and everything!!
« Reply #6 on: July 28, 2022, 12:43:59 PM »

Are you peri still? It may actually be nothing to do with the HRT but your own ups and downs, I’ve been like that for the last 3 years. Your bloods do indicate that you don’t absorb well if at all from the patch but again symptoms are the key.  Low Estrogen symptoms for me are not the same as high Estrogen.  The level of Estrogen we need is very individual so some may be well on 300 but some may need 800 or more to feel well.  What is your plan?
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ATB

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Re: Confused with blood results/symptoms and everything!!
« Reply #7 on: July 28, 2022, 01:33:13 PM »

Samsz, make sure you take the B12 in the morning, it interrupts sleep if taken too late in the day. In my opinion only, I used to work for vitamin companies, a multi is almost always a waste of time and money and if you take something in it you don’t need it may cause unwanted symptoms.

It is interesting what you say about symptoms v blood levels Joziel, it’s so confusing and hard to figure out and I hope we get more research and information in this area. I still some days am unsure if I am on the right level of estrogen and think that as I’m in peri still that half the month the dosage I’m on is right and the other half I’m possibly too low. I’ve had covid in June so its also possibly affecting me now as I’m tired more often. It’s just really tricky to pinpoint where the symptoms are coming from and it’s hard to increase when previously higher levels caused anxiety and panic. Those two symptoms are a real pain because it can affect your own monitoring of symptoms and analysis of the situation. My experience at Newson is different to Joziel so I think it’s important to say that I don’t think Newson has a set policy on estrogen being higher, that different doctors there will have slightly different takes on it. I haven’t found my doctor particularly invested in women needing higher estrogen dosages at all, her approach is that the less the better, wait as long as possible before increasing or decreasing and nudging the body in the right direction is her preferred way. Her constant message to me has been that we go by symptoms and that she trusts me to know how I feel and what I need, with her guidance. We both think I will need an estrogen and testosterone tweak but as sometimes these adjustments take longer to take full effect, she even suggested I wait 6 months before adjusting again just in case this is the right treatment but it needs that long to really work fully. It’s a minefield! I just had a big rant to my husband about it!
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joziel

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Re: Confused with blood results/symptoms and everything!!
« Reply #8 on: July 28, 2022, 04:39:06 PM »

ATB, maybe it's an individual doctor thing. Who is your Newson GP? PM me if you don't want to say publicly! I often think I should request someone else... but when i look at all their bios I just don't know how to choose one over another...
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Samsz

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Re: Confused with blood results/symptoms and everything!!
« Reply #9 on: July 30, 2022, 08:17:26 PM »

Hi everyone,

Sorry for the delay in replying. I'm getting such little amount of sleep that I'm finding it difficult to focus on what I'm reading and on posts on this forum!
I'm just going to persevere on the 75mcg dose and make an appointment with NH asap. I'm finding that the more I read and the more opinions I hear are just confusing me!
Thank you all for your advice though , you have been really helpful, Samsz x
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