# Success treating high TNFalpha levels & NK cells sans Humira? PLUS thyroid meds



## Chocgirl (Oct 27, 2014)

Hi all,

I've had some test results from my immunes which are pretty worrying.

My TNF Alpha is like 43 and my NK cells were like 15.

The ARGC suggested Humira as a starting point but I am not cycling there and they won't offer me any other treatment. When I told them I don't have time so ensure Humira works before final NHS round (I cannot change the time of it and it's under 2 months away - yippee!). I said to ARGC what if I'm one of the 40% of women who flare before further Humira and the Dr said 'well you won't be any worse off'. But that makes zero sense to me. If I'm not worse off if it's higher then they're basically saying it's not a problem that they're high! Augh!

So I've taken matters into my own hands. Arranged intrallipids for 7-10 days before transfer at a local clinic and if I get a BFP plus steroids, Clexane, injectable progesterone, aspirin etc.

The local clinic also said looking at my results that my thyroid is a bit underactive for conception at 2.7 and should be below 2. ARGC didn't even mention that but I guess that's because it may have been part of their entire protocol which is complex. I'm happy to have found this out and she has prescribed me a simple thyroid drug and I'll get tested in a month. She thinks in the time I have it should work fine.

So I guess my question is has anyone had any experience in what I'm going through, any recommendations or even better any success stories?!

Many thanks


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## NatNat1987 (Jun 20, 2013)

Hello chocogirl 

I can't really give much advise as I have only just got my results back myself (tnfa 42 and nk 25)  I've began taking high dose omega 3 as I've read that this can help naturally lower tnfa, I've also started to avoid gluten (where possible) and stopped eating chocolate/sugary things  

Can your GP not prescribe something for the thyroid ? To get it  between 1 or 2 ? Have you read agates faqs on immune issues ? It's really helpful. 

I believe there are other things that may be able to reduce the tnfa...I'm going to try hydroxychloroquine(anti malaria drug)  and intralipids  (possibly prednisolone too) depending on what dr gorgy says. I read one lady took hydroxychloroquine for 3 weeks and brought her tnfa down drastically! It's doesn't work for everyone but is a cheap option so maybe worth a shot if you have 2 month before starting?  

Sorry I can't be more helpful 

Nat x


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## Chocgirl (Oct 27, 2014)

Hi Nat, sounds like we are in a similar boat then. When are you hoping to cycle? What have you been advised to do to lower levels by your clinic?

I saw about chocolate already (like life isn't bloody miserable enough!). I'm thinking about trying gluten free but the thing is you have to do it completely or it doesn't work. And it would only affect us if we are gluten intolerant which I have never thought I was! What I'm going to do is cut out gluten totally after my hol next week for three weeks then try some bread or something then apparently if you feel really bad that shows you have a gluten intolerance.

Well this is one way to curb my chocolate eating forever right!!! I have been trying very hard recently to not eat processed food so I am sure I am already on the right track. I'm also working on my egg quality with the Its Starts With the Egg vitamin/cosmetic/chemical/plastic free plan!! Let me know if you want info!

I also got fish oil tablets (what dose did you get?) and am going to try eating fish (I'm veggie) once or twice a week now. 

I think you missed a bit of what I said as I do have that prescription for the thyroid (in the post anyway) and will start it asap.

I wonder who would prescribe me the antimalarials and what effect they have on any other drugs? They are such strong drugs, I have taken them before. Of course I could fib to my GP Im going away for a month and try it out but I worry about mixing too many different drugs without the advice of just one doctor and the effects of doing that so close to stimulation. How long do the effects of antimalarials last for?

I will wait and see what Dr Gorgy says to you. I should have gone to him as he treats people also having NHS cycles but too late now.

I'm def doing prednisolone again (though I did last time and still mc/barely even started develping, but my gut instinct was that was because of low embryo quality as the cycle was all a bit of a mess). 


Thanks hon x


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## NatNat1987 (Jun 20, 2013)

Hello 

Yeah we do sound similar after reading you post lol...I currently have embryos frozen I at my clinic in Athens  (Serum) so was hoping to do an fet end of June but I might be being a bit optimistic with that date now : / 

I am a complete chocoholic! So that news was awful for me...I'm a kinda doesn't mind eating chocolate for breakfast kinda girl lol but I would do anything so choc is a small sacrifice. 

Yeah I read it starts with the egg a few cycles ago so have been really on the ball with all the info stopped with nail varnish cosmetics plastic bottles etc. 

I'm taking solgar triple strength omega 3 it's says 950mg omega 3 , 504mg epaulette and 378mg dha per 1 capsule...I started taking 2 of them but now take 3. I also swapped from folic acid to folate as I have found out I have MTHFR heterozygous.

Sorry about missing the thyroid med part   not even back on the meds and I'm being scatty lol 

Re the gluten I haven done it religiously : / but trying to just reduce it where possible, used to be a big bread eater (I know how bad bread ,cheese and chocolate my favourite things) so have really cut down to near enough nothing and swapped to gluten free pasta only small changes but can't hurt I suppose. 

I'm not sure about the hydroxychloroquine...i have arthritis and I've heard they are sometimes prescribed for that so was gonna try my luck with them and if not get them from gorgy..I don't believe there would be an issue with mixing the meds as lots of people are taking them alongside prednisolone,clexane asprin and intrilipids so I would assume it would be ok. I have had prednisolone on the last 3 cycles but a low dose at 5mg which I doubt would do anything for me.  

Il see what gorgy says and update you should hopefully see him soon. Xx


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## Hopefulshell (Mar 14, 2013)

Hi 

Although my NK cells were normal my TNFa was 42.2. I followed a strict anti-inflammatory diet for over a year which included going gluten and dairy free. All fatty things like chocolate and cheese (and basically anything that tastes nice!) I took out of my diet. 

I didn't want to take humira and couldn't afford ivig so had two ILs prior to et and was on 10mg of Prednisolone from stims phase (of an FET). I personally believe dietary changes can lower immune issues if there are no other autoimmune conditions but it's not an overnight solution. When I saw Dr G the malaria drug wasn't available but I have since read some very positive things about it on the FGA thread.

For me I think the reason my TNFa was so high was due to long term stress. I addressed this with 6 months of hypnotherapy which really helped to calm me down!

Quick fix solutions are more likely to be drug-related as natural ways take time and patience to see any results. In your shoes I'd try the malaria drug or the ILs/steroid combo. From what I read at the time, most clinics only seem to offer one Il before et but because my levels were high, I didn't think having just one a week before et was sufficient so I insisted on two administered four weeks apart. I continued having them every four weeks after BFP with my last one due at 21.5 weeks. I don't know if this made any difference but something did!

Wishing you the best of luck.

X


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## Chocgirl (Oct 27, 2014)

Hi Hopeful,

Congrats on your pregnancy! 

You're right, I don't have a year! Wondering what I can do natural-wise as well as with the drugs. Where did you get the info about the anti-imflam diet?

I really wanted two ILs before my treatment but the Dr I am seeing insists on just doing one as she says it has a short half life anyway meaning it only stays in the system 2-4 weeks I believe. This does make sense to me. She said if I get a BFP I will have another that day and then every two weeks after that for a while.

How much and when do you take the antimalarial?

Thanks x

I think the same about my levels! I'm so stressed with everything that's happened and life just seems to keep chucking more and more s**t at us every other day! I also had one hypnotherapy the other day and you've reminded me to book in for another 

I just don't know who will get me the malaria drugs. I have asked the Dr if she will but she is reluctant to do anything outside of the norm - we will see. I guess if not I could try and go to a travel doctor and get some - what is the dose? Do you just keep taking it?


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## HopingAndPraying (Mar 28, 2013)

Hi choc girl 

My tnf is always high x the only thing that works for me is intralipids , my levels always hover in the 40s bit one dose or 2 a few weeks apart has got them below 30! Which as you know is Argc thresh hold! 

I have tried gluten free , vitamins (turmeric & reservatrol) , no booze , everything really and nothing like that has worked and was utterly miserable 🙈! 

Think you sound well covered with your plan, just to note though when swimming this can aggravate your tnf! That's why Argc usually administer Ivig or intralipids on day 8 I think ! 

Good luck x


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## HopingAndPraying (Mar 28, 2013)

Stimming not swimming 😂


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## NatNat1987 (Jun 20, 2013)

Chocogirl 

I spoke with my rheumatologist today and she agreed to prescribe the hydroxychloroquine...I'm taking 200mg twice a day...will take it for a few weeks and retest my tnfa and see if there is any change! Fingers xd 

Xxx


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## Hopefulshell (Mar 14, 2013)

Hi Chocogirl 

I never took the anti-malaria drug as it wasn't available at the time I had my tests. I've read lots of girls who are under Dr G at the FGA take it so maybe he would prescribe it? Although this would necessitate a consultation with him and possibly more tests which would all take time and cost money ...

I was told that doing very strenuous exercise can increase TNFa levels so I stopped going down the gym just in case. I'm not sure how much truth there is in this though but didn't need much excuse to stop exercising  In terms of diet I originally went to see a fertility nutritionist who devised me a diet based on my particular issues (I didn't know I had immune problems at this point). Once I found out I had high TNFa I just googled anti-inflammatory foods. If you Google 'clean diet' you'll also find some helpful info. here too. Diets for autoimmune conditions like arthritis can be helpful as these contain suggestions for anti-inflammatory food types. The main things to try are oily fish like salmon, turmeric and spices, bell peppers, spinach, kale, nuts, seeds (especially flaxseeds also known as linseeds) and lots of anti-oxidants like berries and leafy vegetables. Really just try to eat lots of fresh produce and avoid pro-inflammatory like cheese, chocolate and sugar. All fatty foods are a no-go. Gluten and dairy can also increase immunes but there is the argument that this only applies if you have an intolerance to them in the first place. I don't but gave them up anyway just in case! 

It was my understanding that ILs stay effective in the body for 4 weeks. I worked on the principle that if I had the first one about five weeks before my ET this would give it a chance to work on my cytokines before having a second 'boaster' of ILs a week before transfer. I personally just didn't think one dose would be sufficient but I had no proof whether this was actually right or not because I couldn't afford to keep having my levels rechecked. My clinic were willing to let me have the two doses prior to ET because I had such high cytokines. I was also paying privately for them and as ILs aren't a drug as such my doctor didn't think it was a problem having an additional dose. Unfortunately, not all clinics seem to be in agreement with how they treat things which isn't easy for us patients! I also had steroids which I took prior to ET and up to 13 weeks. 

I think you're probably doing all you can at this stage. You're right - you don't really have time to do lots of natural things but I am a firm believer that anything that helps you to relax is a good thing. If nothing else, it just makes you feel that much better and more in control of the process. I personally very much rate hypno so if you've found the first session helpful I'd encourage you to go again. It took me 6 sessions to be 'cured' but by the 3rd my stress levels had gone down dramatically.

In the end you just have to trust your dr that she is doing her very best to get you the best result. However hard it is, we are at the mercy of medicine and sometimes just have to take a leap of faith that our clinicians are giving us the best advice (with a little help from our fertility friends  )

x


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## Chocgirl (Oct 27, 2014)

Hi girls,

Thanks for all your replies. I'm desperately trying to get hold of some hydroxychloroquine. That dr I mentioned hasn't returned my calls so will try again tomorrow. I'm worried she won't have heard of it so she won't prescribe it. She is not really a fertility dr so mucosa a pregnancy dr.

If she doesn't shall I ask my GP or is that a no hope? I tried STA travel today but they only have chloroquine which is different. Or could pretend to be going to the Dom Rep for three months to the nurse at my GP? Help!! So panicky.

That dr won't do an intrallipid during my stims as she doesn't think it's necessary but I will broach it again nearer the time!

As you said I could go to dr G but how long to even get a consultation then it's hundreds of pounds just for that when all I want really is bloody antimalarial!!

Why is dairy not ok? I'm veggie so all this is really restrictive what with no tofu or soy etc etc.

Feeling overwhelmed!!!!! Xx

Please Note: Fertility Friends does not endorse any type of self medication/DIY drugs administering. We strongly advise you to seek advice from your GP/clinic on any aspects when self administering drugs of this nature and do not do so without professional medical supervision/approval.


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## Leenaj (Aug 12, 2015)

hi choice girl

your results seem similar to mine .... high tnf 38.3, slightly raised NK 18 %, also have hypothyroidism - only just started the gluten free, choc free, diary free - finding it hard as DH sometimes does the weekly shop and he forgets to buy GF stuff- this week he forgot my GF rolls and brought chocolate and also yoghurt ...i was fuming...

also if you have thyroid issues like me - hypo- soya not so good - so avoid if possible

suggestion - could you not get the anti malaria tablets from the GP - just tell them your going to a country where you may get malaria ? i know its naughty but might be worth a try ?

Please Note: Fertility Friends does not endorse any type of self medication/DIY drugs administering. We strongly advise you to seek advice from your GP/clinic on any aspects when self administering drugs of this nature and do not do so without professional medical supervision/approval.


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## Chocgirl (Oct 27, 2014)

Hi Leenaj that's what I'm thinking but I'm scared they will suggest a different type of drug! The one I want is unusual but I know it is used for Dom Rep and some parts of Central America. I will have to say I am going for three months!!! I guess worth a try? Just what will I say if they say they want to give me another drug? I think this is the only one safe I pregnancy so I can say I am trying actively. It's the nurse not a doc so she probably won't look at my records.

Is it wrong trying my GP or shall I try the nurse route first?! Was trying to find a travel clinic in London that stocks hydroxychloroquine as they rarely seem to have it?! If anyone could help me find one that would be awesome!! I've been looking today but no luck yet. Would rather do privately so as not to pee off my GP while am still on NHS XXX

Please Note: Fertility Friends does not endorse any type of self medication/DIY drugs administering. We strongly advise you to seek advice from your GP/clinic on any aspects when self administering drugs of this nature and do not do so without professional medical supervision/approval.


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## Chocgirl (Oct 27, 2014)

Ps what is hypo? I think my thyroid is technically underactive for fertility but normal in other terms - it's 2.7. What does that mean?

Going gluten free after my hol this week but already banned chocolate as a starting point! Wah x


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## Leenaj (Aug 12, 2015)

Hi choc girl

So it's hydroxychol... I see...could you not say ' oh could you prescribe me these ones please as I gave other types and they didn't suit me that well ? You should see my GP ...I hate to say it but he really kind of just prescribes or tries what I want..not always a good thing as he never gives his clinczl opinion.

Yeh basically hypothyroiism is what I meant ... Your tsh is 2.7 ... You need to bring thta down to less than 2. Mine was high at 5.16, and then to 4, now I'm taking higher doses of thyroxine to get it down to less than 2

Please Note: Fertility Friends does not endorse any type of self medication/DIY drugs administering. We strongly advise you to seek advice from your GP/clinic on any aspects when self administering drugs of this nature and do not do so without professional medical supervision/approval.


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## Chocgirl (Oct 27, 2014)

Hi ladies,

SUCCESS!!!! I am now in possession of 8 weeks of thyroid meds plus 8 weeks of hydroxychloroquine! She only wants me to take 200mg a day because she said I am small though the normal dose is 2 X 200 a day!! I'm not even that small! However we have agreed to retest both my TSH and TNFA levels in 4 weeks and if it's not lower will raise the dose. She said some people take it for a year before trying to get pregnant but that seems kind of dumb to me. If you weren't trying then how would you know you needed it?

This dr lady also annoyed me, she asked how much my tests cost them I said a grand and she was like wow, I can't believe people pay that much. I'm
Like - you offer these tests yourself, you can see how much they are! Then she said I was trying to throw my money around as I was asking for another intrallipid at day 8 of stims and she's like well it's more money for me but that's not how I administer it. I was like I'm hardly trying to throw money around - this is what is costs! You have three cycles and two miscarriages in 9 months then tell me you wouldn't do the same!!! 

Then she charged me £50 for the appointment!

Honestly I despair of the medical profession. Almost everyone I meet whether private or NHS seems to be insane, insensitive or ignorant!!!! Xx


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## NatNat1987 (Jun 20, 2013)

That's fab news chocogirl glad you managed to get it sorted out : ) what dose of prednisolone are you going to be taking? X


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## Leenaj (Aug 12, 2015)

Agree choc girl. What dose of thyroxine did she give you. Sometimes I do question medics. My private endocrinologist gave me 25 mcg - for a tsh of 5.16. Stupid really as I thought it was too low but I should have spoke up as didn't l. She has now given me 50 and 75 Mcgs to alternate, will retest In a month plus my cytokines After humira. Really hope they come down especially tsh because it hacked me off when it only went down to 4 after 25mcg. Now I'm querying will 50/75 do the trick


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## Chocgirl (Oct 27, 2014)

ENH what dose do you think I should have? I think mine was quite low dose last time. I'm really not sure. The NHS are prescribing it for me so not sure how high a dose they will give me??

Leenaj yes I'm taking 25mg but my TSH is only 2.63 so not terribly high. I am testing everything in four weeks so will see how that goes.  Have you lost weight on it? I don't have much to lose but honestly losing the half stone I put on from the steroids last cycle would be a welcome side effect!! Xx


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## RB76 (Jul 27, 2011)

Hi, I have not read all of the posts and have no experience of thyroid meds etc so please forgive any repetition.

I just wanted to mention the two intrallipids before transfer which I am certain (along with DE of course) played a key part in my getting pregnant. Some of us have levels so high that two are needed. A friend of mine in a similar boat also had a baby successfully after eight cycles having had two intralipids before ET.

If you can find a way to get two done, I really would. Mine was also for TNFa and NK cells.

Good luck


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## NatNat1987 (Jun 20, 2013)

Hello RB76 , thank you for that, I have always had intralipids on the day of transfer which I always thought was little pointless tbh : / I have arranged to have 2 before I have my fet transfer this time...can i also what the gap between the infusions were ? Xx


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## Leenaj (Aug 12, 2015)

Hi ladies 

Could I also ask have you had intralipds with humira, as Dr g has only prescribed me just humira ? Wondered if it's worth asking for intrailipds ? Or can they be given after humira ?


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## RB76 (Jul 27, 2011)

Hi, off the top of my head it said on the protocol day 4-9 of stims and I think the other one was about two weeks before. I've never had ivig or humira just intralipids, clexane and prednisilone.
I agree, I think having it on the day of transfer is pointless.


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## Chocgirl (Oct 27, 2014)

I don't think the dr I am seeing will do two but I will continue to try and talk her into it - in any case I will have mine a week before transfer so should hopefully kill those TBFs along with the steroids and antimalarials etc xx


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## Hopefulshell (Mar 14, 2013)

I agree with RB78 - I had two ILs prior to FET transfer as I didn't think one would be sufficient just a week before ET when I had such high cytokines (NKs ok though). I had the first ILs four weeks prior to my second which was done a week before ET. So my body had five weeks prior to the FET transfer to respond favourably to the ILs. I don't know if this alone made the difference, probably not as I had steroids and blood thinners too, but I'd certainly do it again if the occasion arose. My clinic were only planning to do the one but I argued my case and because I was paying £250 for it, they were happy to change their minds  

x


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## Chocgirl (Oct 27, 2014)

Do any high TNFers remember or can you look up what dose of steroids you had and which day you started taking them?


Many thanks x


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## Chocgirl (Oct 27, 2014)

Hi all just to update I have had my retest done and my levels are now within normal range! So happy!!
So they have come from over 43 to 26 in about a month!
Things I did:
Hydroxychloroquine one tablet a day
Strict anti inflammatory diet (been very hard but worth it)
Ate oily fish two or three times a week (previously ate none as vegetarian)
Turmeric tablet once or twice a day with a spoonful of coconut oil to increase absorption 
Four tablespoons of organic apple cider vinegar a day

Hope this helps someone, may post it separately too as I was desperate and see women paying thousands for humira when I paid eight quid for a prescription!
Xx


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## NatNat1987 (Jun 20, 2013)

Hi chocgirl 

That's great news! Glad you have managed to reduce the levels : ) I'm going ro retest mine in the next few days so I'm hoping mine have reduced too...

I've been taking hydroxy 2 per day 
High dose omega 3 
Eating oily fish
and taking some anti inflammatory meds prescribed by clinic I've also 1 intralipid due another 1 on sunday

I think il do the apple cider vinegar too just incase : ) xx


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## Chocgirl (Oct 27, 2014)

Thanks Nat! I'm so happy. Sounds like you've been doing similar things to me so fingers are crossed for you!i actually love the apple cider vinegar because ive got a bit of a thing for pickly things but I'm not sure it's for everyone  

When is your FET due to go ahead or is it dependant on results? Dr Gorgy said I just need one intrallipid and I've got all my amounts for Clexane and steroids now so feeling excited to get on though not excited for the horrible scratch  xx


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## NatNat1987 (Jun 20, 2013)

Yeah I'm the same with pickles and stuff so il give it a whirl x I'm actually taking my meds for fet now...well it's natural so no meds just immunes so just waiting for my smiley face now...I'm just praying that that they have come down so transfer can go ahead...I'm panicking : / x x when are you planning your fet ? Xx


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