Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Slightly off topic but I've seen a few people on here mention Dr Tozer. Do you recommend? What is she particularly specialised in? Is she an alternative to the reknowned immunes ppl like Gorgy?

How did it go @RosieLeeD - hope everything is okay!

@whatcangowrong - I really like Amanda, she is friendly and not pushy at all, I only had quite basic tests done with her but she is willing to try immune protocols and is happy to prescribe things you ask for x

I hope everyone is doing well and staying strong. 💕

@RosieLeeD How are you today?
I was not on any other blood thinners. I don't have any known clotting factors, which is good, but I know that they can also be given preventative. I would definitely follow your consultants advice. My next scan is on Monday. I have also ordered Weleda Arnica C30 online. It's homeopathic, but supposed to help with haematoma. Let's see. Xx

@Kelspj Stopping Pred at 10 weeks really sounds a bit early. Did you ask if it's OK to take it a bit longer? I will also ask when I see her next week.

@whatcangowrong I also really like Dr. Tozer. She is very knowledgeable, pragmatic, friendly, not pushy and really cares. Everyone I have met at Aria was fab.
As Kelspj I didn't do a lot of tests with her, as I had already done my level 1 immunes previously.
But she found the problem and offered immune treatment.

@Kelspj @Annabell1 Thank you both for your messages. I'm doing ok, my scan with Dr S went as well as we could have expected. The baby is measuring as it should and we saw/heard the heart beat. 💕 The haematoma (or he called it a blood clot) has started to reduce in size but I've been told the next 2 weeks in particular are critical. He has completely taken me off blood thinners now and he has given me Tensipine to help 'relax the uterus' (they use it to prevent pre-term labour). The concern is if the uterus contracts to try and remove the clot and the baby goes with it. So an extremely anxious time but we are trying to stay positive and take it day by day since less than a week ago we thought it was all over. I have a scan on Monday at IVF clinic (doubling up as I'm under 2 clinics) then another next Friday so the size of the clot can be monitored etc. I was also told to expect more blood which I don't like but at least they have warned me, it's more like spotting at the moment. Otherwise just really tired and started to get a little nausea but I won't complain!

@Kelspj hope you are doing ok, when will your next scan be? I should have mentioned in my last post re Pred that I am under Dr Shehata's care, not Dr Tozer x

@Annabell1 it's good you have another scan on Monday too and hopefully it shows the haematoma continuing to decrease. Ill be thinking of you. I'll look at that remedy too, thank you, I'll try anything that might help! I hope you are feeling ok and that Monday can give you some further reassurance x

@89Hope that's great you got a puppy too. What breed did you get? They certainly bring a lot of joy and some craziness. How are you? X

@Annabell1 so I emailed Ruth back and told her I’m actually 10 weeks today so I left it a little late to ask whoops! And I said I’m eager to come off the pred but also really nervous too and would it do any harm doing a week longer? She wrote back and said no worries I can start weaning today instead and be off by 11 weeks but she does recommend I do that as they have done their job now and it’s not recommended to take too far into pregnancy, eeeek scary! Let me know if you get the same feedback.

@RosieLeeD - I’m glad the scan went as well as it could, it sounds like a really scary time but you are in great hands and sounds like Dr S is covering all bases! And good you can have regular scans with both clinics to monitor the progress, my next scan is with the EPU on Thursday, due to be 11 weeks, praying everything goes well! X

Hi everyone, thought I'd share an update. It's a bit of a headfuck though. We did a frozen embryo transfer on 18 October and I got a bfp 9 days later - I couldn't face testing at home so just had a beta hcg which was a good level. They booked me in for a scan today at what should be 6+2. My ivf clinic diagnosed a blighted ovum, although they could see 'something' it wasn't clear.
I have spent the afternoon at the epu and got a completely different outcome. They found a 5mm foetal pole and saw cardiac activity (confirmed by 4 nurses), measuring 6+0. But they struggled to see the yolk sac, so are very cautious. I do have a retroverted uterus, so perhaps it's partly due to that.
I'm to continue my meds and I'm back at the epu on 22 November when I'll hopefully be 7+5 and things will be clearer.

Sorry I didn't share earlier but I've struggled a lot with anxiety this time round. Strangely, now we've had this today I feel less anxious.

I hope everyone is OK xx

@VenusStarr oh my gosh, what a roller coaster! Very cautious congratulations, I have absolutely everything crossed for you that this turns out to be a success story. Really really really hope this is your turn. Those awful days or is-this-or-isn't-it going to work are just such a tough time. Sending you lots of love x

Oh goodness @VenusStarr - what a day you had! So many conflicting emotions I can’t imagine how you are feeling. So glad they found the foetal pole and HB at the epu though, I hope the next week flies by for you until your next scan where hopefully your mind can be eased! Everything crossed! Xx

Thank you @Kelspj and yes Dr S appeared to considered the position carefully so I am confident that I am in the best possible hands, just keeping fingers crossed the scan tomorrow shows a further reduction in size. Will be wishing you all the best for your scan on Thursday xx

@Annabell1 good luck for your scan tomorrow too, I hope you see more positive improvement xx

@VenusStarr I hope you are doing ok today xx

Hope everyone is having a good weekend! ❤️
@RosieLeeD I'm so glad your scan went well and Dr S is taking good care of you. I'm really crossing my fingers for you for the next few weeks. Hopefully things will improve and the little one will continue to grow. Keep us posted. Xx

@Kelspj I hope weaning off Pred goes well. Keep me updated on how you are. I will ask her tomorrow as well. Hopefully she will be OK with me taking it a bit longer. Xx

@VenusStarr So good to hear from you, I have been wondering how things are. What a stressfull time, bless you. I truly hope that things will turn out OK for you this time. Xx

I have my next scan tomorrow morning and then my first Midwife appointment. Can't believe it. I hope the next weeks pass by quickly.

@Lozfish and @treesall Hope both of you are fine as well. Xx

@VenusStarr congratulations on your BFP, I'm so pleased for you and really crossing my fingers that this is your time.

@RosieLeeD sounds like a bit of a rollercoaster for you, but you're in the best hands so I hope everything is ok. I bled a little in week 7 of this pregnancy and even though you know it's not a miscarriage, it's horrible to have all the subsequent spotting every time you go to the toilet.

@Annabell1 sounds like it's going well for you! Not sure where you're at now, but I found after my 10 week scan that I could get excited. My pregnancy is going ok so far - I'm officially 12 weeks! Had a scan at Epsom last week as I needed intralipids and all looked good, plus we had the harmony tests which came back all fine and I found out we're having a little girl - it's the first time I've felt really happy emotion about this pregnancy, I bawled my eyes out ☺️ I have my dating scan tomorrow - even though I know the chances are good that everything will be fine, I don't think I'll ever not be nervous before a scan.

Hope everyone else is ok x

Thank you @Lozfish and @Annabell1. The scan with IVF clinic went ok today, baby is still good but I was a little disappointed that the blood pocket hasn't reduced more, it only decreased by a couple of mm. It hasn't been too long since the last scan with Dr S (Thursday) but I was hoping for more reassurance. I have another with Dr S on Friday so hoping it continues in the right direction. You're right re the spotting @Lozfish I don't like it but was told to expect it. Congratulations on reaching 12 weeks, such a huge milestone xx. @Annabell1 how did you get on with your scan today, hope all continues to go well xx

@Lozfish @Annabell1 sorry not sure how I managed to do the bold, maybe because I tagged you both twice 🙄

@Lozfish I'm so happy things are going well and that you have passed the 12 weeks mark. Such good news. 💕 I hope you can really enjoy the next few months. Xx

@RosieLeeD I'm sorry you didn't get the reassurance you were hoping for just yet. Try to stay positive and hopefully in two weeks (or on Friday) things will look a lot better. Be good to yourself.
I do believe the arnica made a difference, although it might be coincidence.
I have also asked my Consultant about whether or not to take Aspirin again. She thinks I'm OK without it and I'm quite happy about that. All the best for your scan on Friday! Xx

@Kelspj How are you doing? I have asked about Pred and got the same advice. Gosh, I'm a bit anxious about coming off. Xx

I had my scan today and all went well. I'm now 9 weeks and the little one keeps growing. My haematoma also reduced in size and it's not that obvious anymore. Still not completely gone, but I know that it can take quite some time.

So exciting @Lozfish - big congratulations!! X

@RosieLeeD sorry to hear your bleed hasn’t decreased as much as you had hoped, keep well rested and I have everything crossed it continues decreasing! Keep us posted x

@Annabell1 I am well thanks! I decreased down to 15mg yesterday and had a bit of a headache all afternoon, not sure if it was related because today I actually feel fine, a bit too fine which is panicking me, not feeling as nauseas, and boobs not hurting as much! Why is this so terrifying I have a scan with the EPU on Thursday, making me feel sick thinking about it but fingers crossed! Are you going to start weaning this week then? Also congrats on the scan eeek! Xx

Hi @RosieLeeD and @Annabell1, I hope you don’t mind my asking, but were you on aspirin due to diagnosed blood clotting disorders? I’m 7 weeks pregnant and am on prednisolone and Cyclogest and have been prescribed low dose aspirin too but am nervous about taking it after reading your haematoma stories. I don’t have any acquired or inherited blood clotting disorders.

Hi @Minta85 I've been taking aspirin as per Dr. Shehata's plan and I'm 12 weeks now having had a tiny bleed at week 7. Dr. S just said if I start bleeding again to stop the aspirin for 3-4 days. I am staying on it until 34 weeks (if I get that far!) Hope that helps x

Hi @Minta85 I haven't been diagnosed with any blood clotting disorders although I do have a SNP on my MTHFR gene (homozygous) which may cause implications in some cases. My IVF clinic suggested Fragmin for this reason. Dr S didn't really give me an explanation as to why he was suggesting the aspirin and I suppose I just took it as being part of the protocol to deal with my NK cells. I feel like I should be able to give you a more comprehensive explanation than this, sorry! It might be worth discussing your concerns with your consultant to understand the recommendation more fully. I was also told having IVF can increase the risk of this type of bleeding. All the best and I hope you get some further explanation/peace of mind x

@Annabell1 glad to hear your scan went well and your haematoma has improved. I'm probably being a little impatient and realise I need to give it some time. I'm taking the arnica now too, I realised that I already had some so started taking as soon as you mentioned, thanks again for that x

@Kelspj thank you, I'll certainly let you know how I get on at my scan on Friday but I think I need to be realistic about how long this might take. Will be interested to see what the consultant says a week on from first seeing me. Sorry to hear you are nervous about weening of the Pred but understandable to feel like that and I'm sure you are in good hands. All the best for your scan on Thurs too and let us know how you get on x

@Minta85 Congratulations on your pregnancy. 💕
I do not have any known clotting factors (no thrombophilia, antiphospholipid syndrome etc.), but I know that low dose aspririn or other blood thinners are often prescribed as part of an immune protocol.
I found this explanation quite helpful (see link below). Dr. Gleicher is following Alan E Beer's approach and I believe Dr S is doing the same. Dr. Beer's book is really good, he also covers aspirin on page 170.

@RosieLeeD All the best, I'm thinking of you. Xx

@Kelspj I'm really crossing my fingers and toes for you. ❤️ I think, I will wait a little bit before weaning off, 9 weeks sounds so early. 🙈

@Lozfish, @RosieLeeD and @Annabell1 thank you so much for your helpful comments.

@Annabell1 that’s such a good video and it helps to understand why they also give aspirin with immunotherapy, thanks for sharing.

@VenusStarr what a stressful time! The wait is horrible, I hope you are doing ok. Crossing everything for your scan on Monday.

@Lozfish how exciting, I hope you can relax a bit over the coming weeks.

@RosieLeeD all the best, sending love and hope the next scan goes well for you too @Kelspj

I went for a pelvic scan the other day and they could not see anything abnormal so that’s good. My gp said a TSH of 4 is normal even though I mentioned that a fertility specialist would not agree with it. Seeing Dr S in a couple of weeks for the 1st appointment so can’t wait for it now.

Hi ladies, is anyone seeing an endocrinologist for Hashimotos? Anyone had any success is lowering Hashimotos antibodies? Keen to hear your experiences! I’ve been trying to lower mine for months and just found out they’ve doubled! Gutted! Thanks so much xx

@NImama I posted about my experience a couple of weeks ago. I tried everything to lower mine that were in the thousands...going gluten free, LDN, various supplements... nothing helped. I then saw Dr S who put me on his complex plan and prescribed Hydroxychloroquine. A few months later my antibodies (both TPO and TG) were within a normal range and I was able to reduce my Levothyroxine from 125 to 50 per day (my thyroid recovered). Eventually I also had a successful pregnancy, currently 4 months post partum. A few weeks ago my antibodies hadn't increased (I stopped Hydroxy at delivery). No idea if my Hashimoto's will remain in remission, or if it was indeed Hydroxy that did the trick, but I believe so and I'm hopeful.
@Arwen7 studies I've read and specialists I've spoken to agree that for fertility purposes a TSH of 4 is too high. You may or may not conceive and miscarriage risk is higher. It's recommended to be under 2.5. I personally try to keep it around 1 as this is when I feel the best.

@Wireless77 thank you very much for replying! This information is like gold dust. Congratulations on the birth of your baby! And to be in remission is just incredible!! I’m over in Northern Ireland so I don’t think Dr S is an option for me. It is so so backwards here with fertility issues and thyroid! Thankfully I have a great endocrinologist now who has put me on T3. I’ve seen a few and they all just looked at my T4 and TSH. I will ask him about that drug you too. Thanks again! 🤞🏻

You're welcome, @NImama, glad I could help. If you google for Hydroxychloroquine and Hashimoto's or Hydroxychloroquine and autoimmune illnesses, quite a few articles come up including some clinical studies. A progressive endocrinologist must be aware I would think. I took 400 mg per day (2 tablets at once) at lunch time. I was not allowed to try to get pregnant for the first 2 months whilst taking it as it takes time to work. Full effects can be seen in 6 months or so. I was on it for 2.5 years continuously with no side effects except some nausea and bad tummy in the first few weeks. I had to have an annual eye test whilst on it as a precaution. I did go on to have more miscarriages whilst on it, but due to other reasons (chromosomal etc.). I have a reason to believe that Hydroxychloroquine stopped my early miscarriages (chemical pregnancies) and allowed me to sustain a pregnancy. It has been hypothecated that thyroid antibodies can be a cause for early miscarriages.