Immunology blood tests

[FrancyItaly]

Did anyone have this super expensive test done and can help me understand the results? For what I understood from the doctor my levels are borderline or just above average, they suggested a treatment (2 injections of Humira, which is £800 and has lots of side effects). They say it is not compulsory to do this treatment in order to go ahead with my fertility treatment, they should put me on Clomid in my next cycle. Does anyone have any idea of what TNF cytokines is? Any help would be much appreciated!

[kc21]

Hi I had high nk cells and was treated with soy drips! It’s expensive and I have no idea if it was this or something else but I conceived my twin boys during that round ! Good luck

[FrancyItaly in reply to kc21]

Thank you for sharing! Lovely to hear you had twins!

[kc21 in reply to FrancyItaly]

Thank you ! I had a FET last Wednesday just one embryo and in 2ww! It doesn’t get any easier ... xxxx

[FrancyItaly in reply to kc21]

All the best on your 2ww wait! I hope you have a happy news at the end of it. When are you testing? Xx

[kc21 in reply to FrancyItaly]

I stupidly tested this afternoon and it was bfn but it is early and not ok an early response ! So holding out a bit in hope .... I am 6dy5dt .. I think by day 8 you would have a correct reading by then ... cried today and then pulled myself together ... xx

When do you start treatment ?

[FrancyItaly in reply to kc21]

I’m sure you tested too early, I know the wait is difficult and you just want to know! They told me I don’t necessarily need to do this treatment in order to start my fertility treatment with Clomid and that it could be done even when I’m pregnant? So I will start Clomid in a couple of weeks when my period starts.

[kc21 in reply to FrancyItaly]

Wow hope clomid works for you I’ve heard great things about it! I think it’s all about self preservation sometimes ... I don’t think I could handle going in for a blood test and then telling me it’s negative ! I was lucky to fall last time so I hadn’t overly prepared myself for it not working of course. But it still hurts like hell ! This journey is so hard but this site shows how much some girls go through and get their bfps so it always gave me hope x

[FrancyItaly in reply to kc21]

I hope it works, I’ve heard the side effects are awful and sometimes it doesn’t work. Or sometimes it works in terms of ovulation but it’s not guaranteed you’ll get pregnant! It’s so hard! Keep us updated x

[Cinderella5]

Hey, Ive had these tests done. There is a good thread on immues on FF that might help you to understand your Cytokine ratio (TH1:TH2) test results and also a section on Humira.....there is heaps of info there.xx Here is the link, hope it helps:-

fertilityfriends.co.uk/foru...

[FrancyItaly in reply to Cinderella5]

Wow! I can’t tell you how helpful this website is! There are also lots of information about Pcos! Thank you! x

[Cinderella5 in reply to FrancyItaly]

You're welcome!! I found it really helpful too. Its not so great for chatting on but lots of good information there.xx

[Hidden]

Hi FranceItaly, I've had this test and the result was that I had high levels of cytokines and was TH1 dominant, my clinic recommended Intralipid drips and high doseage of steroids. I also read a useful book called is your body baby friendly, it can be quite technical but it helped me interpret my results.

Wishing you the best of luck xx

[FrancyItaly in reply to Hidden]

Hi Clairenix, thank you for your message and the useful information. Do you know when it’s considered high? Xxx

[Hidden in reply to FrancyItaly]

I will see if I can dig out the results and will PM you xxx

[Hidden in reply to Hidden]

My abnormal results were as follows;

CD 19+ CD5+ was 24.4 and range is 5.0 - 10

TNF (CD3+ CD4+) I was 39.8 and normal ratio is 13.3 - 30.6

I have had a couple of consultations with a nutritionist and she recommended a few things around diet & exercise and supplements.to heal my gut xx

[FertileMind in reply to FrancyItaly]

TH1:TH2 Cytokine Ratio

TNF-a: IL10 (CD3+CD4+) normal range is (13.2 - 30.6)

IFN-g: IL10 (CD3+CD4+) normal range is (5.8 - 20.5)

They look at your NK Assay to see how your natural killer cells are impacted, and in what ratios. They report on CD3%, CD19%, CD56% and CD19+, CD5+ cells and others.

These are all explained in Dr Alan Beer's book, "Is your body baby friendly"

Hope this helps xx

[Hartley1 in reply to Hidden]

I had the same high nk cells then intralipids after egg collection...

[FrancyItaly in reply to Hartley1]

Is this also called infusion? I think I would prefer doing this rather than taking the Humira injections. Thank you for your message x

[Hartley1 in reply to FrancyItaly]

Yes it was an intralipids infusion...It took 5hrs...which was great as gave me a chance to relax after egg collection...I was meant to have 2 more infusions all within the first trimester... but at the apt he only mentioned after egg collection. Any way lockdown hapnd I completely misread the letter...thankfully...ow I would've been super stressed knowing I didn't have what was recommended. I realised in the 2nd trimester. I guess it all worked out...i emailed the consultant to confirm if I still needed it...he said nope...i was a lil annoyed thinking they should have done duty of care...but equally it was my fault for not realising and reading the letter properly. So if you are recommended it...make sure you don't do what i did...🙆‍♂️

[FrancyItaly in reply to Hartley1]

For now they said it’s either Humira to take in 2 injections or the infusions later and this is what I prefer. I’m glad to see it all worked out for you! x

[Hartley1 in reply to FrancyItaly]

Thanks so much...me too...just so grateful Good luck xxx

[Hidden in reply to Hartley1]

It's good to hear that it worked for you, how many attempts has it taken?

I've had intralipids and steroids for my last 3 cycles and unfortunately it hasn't done the trick yet, I was worried that my immune system would prevent it working but these posts giving me hope that you can lower them xx

[Hartley1 in reply to Hidden]

Fourth go...finally it's worked...first-time it was detected was this last time...it showed steroids wouldn't work well and intralipids had a better chance of working...up til now we were just told male factor fertility...thats why I was so grateful for the extensive tests...as after 3 failed attempts I had to have other options...no doubt hubster did a lot to improve himself too...my stress levels were horrendous..

Taking a break I think was the greatest advantage for me this time and supplements. Wish you all the luck xxx I was with Dr Raef Faris at the Lister...his mannerisms and behaviour are odd but he's a good doctor...

Dont lose hope...xxx

[FertileMind]

Hi FrancyItaly

To echo ClaireNix, "Is your body Baby Friendly" is written by the late Dr Alan Beer (and his team), considered the father of immuno reproduction. Did you have your bloods sent to Chicago? On the test results they also show you the ratio of how your body reacts to immune supressants so they know how much of IVIG for example you need, to bring the levels of the cytokines down.

Before you get treated with Humira, you will have to do a latent TB test, to avoid it becoming TB. This is an Interferon Gold test.

I have had the immune tests done a few times - I had very high cytokine markers (including TNF-a above 50) which they thought was killing my embryos (as if it were a mini organ transplant). You can either have IVIG or intralipids during IVF, and they will also prescribe steroids to depress your immune system so your body allows the embryo to implant. A clinic I went to said the best results were with Humira before, and then IVIG or intralipids during IVF.

My 2nd round of IVF I had 2 drips of IVIG, which are extremely expensive. Apparently intralipids have shown more promise. I had a chemical pregnancy which did not develop.

Thereafter, I decided to do a lot of research, as I needed to treat latent TB before Humira...

and I am so glad I did because I was able to heal myself without drugs.

After 3.5 months, I brought my inflammatory cytokines down to normal through diet, supplements, Tai Chi and dealing with the sources of stress that created the inflammation in the first place.

I re-tested and to my delight, my cytokines were within the normal range, and the TB antibiotics had no influence over that change - I checked with my doctor - he said whatever you are doing, keep going as it's working. I don't need Humira (which is given to those suffering from rheumatoid arthritis) and like any drug, has side effects.

What I realised is that unless we address the root cause of the problem, raised inflammation (the cytokine markers indicate the inflammation) over a long period of time, causes disease....so drugs do the temporary fix, but they don't address why you have inflammation and won't stop the inflammation persisting. Humira is like a plaster to supress TNF-a, but not cure it.

We can't be on drugs forever, so changing our lifestyle will ensure our long term health, and also ensure that when we are pregnant, everything is normal for the baby's healthy development too.

I'm happy to chat if you've got questions. Best of luck on your journey xx

[FrancyItaly in reply to FertileMind]

Thank you so much for taking the time to write to me and explain everything in details.

You wrote that TNF-a: IL10 (CD3+CD4) the normal range is (13.2 - 30.6), my result is 38. I really don’t know how dramatic this is! I will definitely try to lower this with diet and a healthier lifestyle. I don’t want to take the Humira, it sounded like I could go ahead with starting my Clomid treatment next month anyway.

Maybe I would consider it if I had recurrent miscarriages or Ivf failures. My main issue at the moment is that I don’t ovulate and therefore I don’t conceive.

They said there is something I could do once pregnant if I wanted to lower that level (drip or infusion? Something like this)

Best of luck on your journey too x

[FertileMind in reply to FrancyItaly]

Hi FrancyItaly

According to the levels, that is high. Above 50 is very high (me). For IVF I believe optimum is around 15.

My thoughts were taking responsibility for my health put me in control, not my doctor(s) and as I'm living with myself and IVF is temporary, I needed to make changes for me that will impact my health for the rest of my life. I can control what I put in my mouth, my thoughts and how I deal with stress - my doctor can't, so hence I set about making changes.

We are complex beings, and I believe that we have to look at our bodies holistically to get to the bottom of the problem. That means what we feed ourselves in thoughts/beliefs as well as in nutrition, because that's what the cells need to operate correctly.

From what you said, it sounds like you need to get to the root of why you are not ovulating and also look at your inflammation.

Diet and supplements - essentially our bodies become de-sensitised to the anti inflammatory effect of cortisol because we are primed in fight or flight mode with corsitol and adrenalin almost all the time with stressful jobs, the news and pressure we are under...so getting our hormonal response to stress under control is vital. There are many modalities you can try - acupuncture, reflexology, Quigong & Tai Chi, meditation, hypnotherapy, breathing exercises, yoga etc etc.

Check out Dr Gabor Mate on what stress does to our body (lots of videos on YouTube) and Dr Joe Dispenza, a neuroscientist on the power of the mind.

Is there anything emotionally holding you back from getting pregnant/ovulating? Any fear of anything? I did some work on my subconscious in hypnotherapy to see if there were any blockages. Stress can even compress our fallopian tubes! James Schwartz has a great book called Mind-body fertility connection.

Rebecca Fetts book " It starts with the egg", Christine Northrup's book "Women's bodies, women's wisdom" are great and Zita West has a book, the IVF diet with lots of tips on what to eat.

IVF is expensive as we all know. Inflammation (high cytokines) can actually stop the embryo from implanting as the body thinks it's an alien (50% your partner) and tries to kill it...so I didn't get that far. My natural killer cells were destroying perfectly good embryos before they had a chance to implant.... so having the IVIG or intralipids drip AFTER being pregnant is good, but you need it before too, to stop your body killing the embryo in the first place.

I would have a good chat with your clinic. If they are not up to speed on immuno reproduction, then perhaps change to one that is, if you feel you are not getting the help you need. I hope you get lots of information from them so you can make informed decisions.

[FertileMind in reply to FertileMind]

ps: and look at foods that cause inflammation and eliminate them. The nightshade family is a good place to start. I love tomatoes, but I removed them from my diet too. Sugar and processed food and omega-6 oils cause inflammation too...you can really help yourself bring your inflammation down, as well as finding ways to bring down your emotional stress levels. Big hug

[FrancyItaly in reply to FertileMind]

Thank you for your message above! I will definitely have a good chat with my clinic and make healthy changes to my lifestyle. Thank you, it was very helpful x

[Hidden in reply to FertileMind]

Hi FertileMind, that's great that you managed to lower this in 3.5 months, I must admit with the whole lock down I have been very stressed lately and gone off the boil a bit but my transfer booked for end Sept so starting the AIP Paleo protocol for the next few wks, my nutritionist recommended it and I do follow a gluten/dairy free diet, I just need to knock alcohol on the head!! Were u taking any specific supplements? I stopped mine for a while due to the cost but have reordered some but the ones to heal you gut are quite pricey so not sure whether to try and do it just through food xx

[FertileMind in reply to Hidden]

Dear Clairenix

Yes, stress is so bad for us, and thankfully there's lots we can do to get that under control.

Food - the problem is these days that our food has so many pesticides and the soil is leached of the vital nutrients, so I think we do need to supplement. I switched to organic as much as possible. Beetroot powder, baobab powder, pomegranate. No vegetable oils (omega-6) except virgin olive oil (cold) cook with coconut oil.

Yes, I took lots of supplements and decided that for my 3rd and final round I was going to give it my best shot. Supporting the egg (largest cell in the female body) to divide correctly is paramount, and as we get older our cells don't divide properly and that's often why we get chromosomally abnormal eggs. Looking after the sperm is just as important.

I chose no alcohol (sugar causes inflammation) and no caffeine (Bambu by Vogel is a great coffee substitute) and no processed food if I could possibly avoid it. No farmed fish because of the antibiotics they are given etc (Waitrose do Wild Alaskan Sockeye Salmon) which is delish and probably the least contaminated.

I made sure my trace minerals were good (Higher Nature do good drops) I've done a few posts on diet and supplements if you want to check them out, but I wouldn't compromise on a probiotic every day (fundamental to process your food and absorb the nutrition) - Troo health do a good probiotic with 120 million strains, methylfolate (bioavailable from of Folic acid), Ubiquinol (bioavailable form of Co-enzyme Q10), Vit D3, selenium, Vit C, Omega-3, Vit B complex, quercetin and a good multivitamin, and a good antioxidant like alpha lipoic acid...and run everything by your nutritionist. Some clinics offer nutritionist consultations in the IVF package.

I also took DHEA which brought my egg harvest up by 40%, which needs to be done under supervision, as you need to check your testosterone and DHEA-S levels and your liver enzymes etc.

Best of luck in taking charge of your health and your journey. It's such a rollercoaster!

[Hidden in reply to FertileMind]

Thankyou so much for your response..very useful, I have made a really good start after doing a lot of research, I ditched all of my old make up and use all chemical free beauty products and household products, I buy organic as much as possible and grass fed meat and buy the frozen wild caught salmon from Aldi, I've swapped coffee for chicory which is quite nice actually and try and drink herbal tea, I was doing really well until lock down and gone off track but back on it today, I have grown some of my own veg and been very pleased with the results. I have donor eggs but have had a MMC, 2 chemical pregnancies and 2 failed to implant so like you just throwing everything at this one, also decided to have a scratch and embryo glue this time round and having extra progesterone. I'm also starting back with accupuncture and going to try hypnosis/CBT to try and help me cope better.

Where are you on your journey? Xx

[FertileMind in reply to Hidden]

Wow, brilliant to hear how you're also looking after yourself. Well done on such a great effort. Do you have low AMH? Why donor eggs? Have you had your immunes tested? I went to a wonderful hypnotherapist who's also a psychiatrist...I found her wonderful xx I hope that goes well for you.

We've just done our 3rd and final IVF and got 4 frozen embryos in different stages...I'm 47 so there aren't many stats and a lot of people aren't still producing eggs at my age, so I'm very fortunate! I do feel like I'm 30 though! When the time is right, we'll implant 2 at a time...and then we'll see! I've handed it over to God and have faith that what will be, will be!

[Hidden in reply to FertileMind]

I'm glad to hear that you had a positive experience of hypnosis, it gives me hope!

I wow that is amazing that you are still producing healthy eggs, it must be all of the work you have been doing around health and lifestyle. I started IVF at 40 and am now 42, I had high FSH levels and my first attempt with OE with abandoned as I didn't respond to the meds and was told only option DE but I have come to terms with that.

I wish you all the very best with your transfer xx

[FertileMind in reply to Hidden]

Acceptance is the hardest part. I'm sorry you didn't respond to the meds. Did you try DHEA? I don't know if you've heard of this clinic in New York? I find their videos really interesting and their explanations really good centerforhumanreprod.com/do... Enjoy your hypnosis - it's been so helpful for me - best of luck Claire, keep me posted on progress :o) sending you lots of energy.

[Hidden in reply to FertileMind]

Thank you so much for the positive vibes xx

Apologies for the delay in coming back to you, I'm suffering with an ear infection which was affecting my balance and made me feel a bit nauseous!

In terms of supplements I have Folapro (highly absorbant body ready folate), Omega 3 Vegan, Organic Ashwagandha, Pregnaplan, Mega sporebiotic (active bacteria, containing 4 billion spore cells) and Mega IgG2000 (high concentration of immunoglobulin) so think I have everything covered on the supplement side and on my treatment plan I will have intralipids, clexane, steroids, utrogestan, lubion as well as the usual progynova and this time have decided to have scratch and glue, my consultant said other than that he has no other suggestions. I do suffer with anaphylaxis and allergies so I'm hoping that my diet and supplements will be the game changer this time xx

[Hidden in reply to FertileMind]

And thank you for the link to the clinic, I will have a look x

[Hidden in reply to FertileMind]

And in addition to supplements mentioned also have Vit C and a mouth spray of Vit D when the weather not so great to get outdoors!

[FertileMind in reply to Hidden]

Awesome, keep us posted! xx Hope your ear infection clears up soon. xx

[FrancyItaly in reply to FertileMind]

I wish you all the best for your transfer! 💕