FertilityZone

Hi Ladies,

I'd really appreciate it if you would tell if your GP did Immunology Level 1 tests how they went about it?

I'm 30 and DH is 31 and we've been ttc for 2 1/2 yrs. We have had two very sad miscarriages in that time. The first was after 13months of well timed ttc. I started bleeding at 7 weeks. We were told baby measuring small. Then at 9 wks told by someone else it was blighted ovum. I still don't know which, but opted for natural mc, which came at 11wks 5days. We conceived again 5months later, but didn't even get to 5wks.

I have been reluctant to approach my gp, as I found the terrible treatment by my local NHS board during my first mc so shocking, that I'd rather avoid all the stress, frustration and sadness they inflicted before. As a result I kept the second loss to myself, sad, but a lot less stressful!!!

I have felt lost and hopeless, and so recently had a telephone appointment with Zita West, to gain some direction. She felt we were too young to still be in this position 2 1/2 yrs down the line, that we have probably had many more, very early mcs, and that she felt strongly that immunology was playing a role here. (She also felt that my thyroid was slightly underactive, though still within the NHS perameters).

Bolstered by my conversation with Zita and some encouragement from my friends I went to see my gp practise last week. I admit I lied and said 3mc, but given that they refused day3 tests after my progesterone test was fine 1yr into trying, I knew they'd still send me packing with 'only' 2 confirmed mcs.

The GP told me that the protocol is that I have to wait up to 3months for a gynae appointment, then that gynae will get back in touch with my gp telling her what immunology tests to run, then I have to wait a further 3months for a return appointment to review and discuss any treatment needed with the gynae. So in total potentially over 6months to have the bloods done!!!

Does this sound about standard with the NHS? (I was refused any repeat of previous fertility test done over 18months ago, and prior to any losses, refused day 3 tests to check for PCOS, which as I said has never been done, and told that the vit D test I requested at the end was 'irrelevant').

I guess I am really asking because I am trying to figure out if this is a standard NHS guidline and therefore pointless to try and negotiate with or whether it is another stupid protocol dreamt up by my area... feel lost...what do you guys think? Thanks x

Hi Maria

Thanks for the reply. Much appreciated.

The reason Zita West believes we have had more miscarriages is because I chart. I have charts exactly like my pregnancy charts where I am triphasic, and late, but was too scared to test again, and then by 4 1/2 weeks I am bleeding. I lost similar tissue as my miscarriages, I just can't say 100% as I didn't test. Although I lied about having 3 positive tests, I didn't lie in the sense that actually I think this has happened 4 times on top of the miscarriages. If I could trust my GP to take me seriously, even look at my chart then I would be 100% truthful, but I can't. The same gp practise told me, after 1yr of ttc and me explaining how I had improved my diet, that diet has no bearing on anything to do with fertility, endometriosis or miscarriage. I told her my period blood was more orange in colour, lighter, and with reduced pain, she told me I was either lying or deluded. How can one say anything back to that? The sad thing here is that we seem to have lost 'family drs', and I know if my family gp was still practising he would know that this is serious enough to do something about.

As part of my recent employment I have done some research into the thyroid. I think we will have differing opinions on 'numbers are numbers'. The blood test is far from an absolute, it may tell you what your TSH is in relation to sample groups, but it doesn't tell you if this is normal for you. The gentlemen who developed the TSH test himself expressed that it was another string to a bow, not a stand alone test. That it was important to remain observant of clinical signs. Prior to the 1970s Thyroid disordered were primarily treated based on clinical presentation; low basal body temperature, dry skin with signs of endema, brittle nails, no outer 3rd of eyebrow, little perspiration, miscarriage etc, etc. Before the blood test women with miscarriages were often treated for thyroid issues based on basal body temperature, etc, and the success rates were surprisingly high, much higher and swifter than todays' treatment of miscarriage. There is much clinical research, to prove that thyroid issues exist within the perameters of borderline TSH results.

I appreciate the sentiment, but I am afraid that having gone through the pain of miscarriage too many times I cannot help but worry about immunology, and although, as you quite rightly point out Zita West is not a dr, she is far more of a fertility expert than either the gp, or the gynae I am likely to be referred to in my remote area.

I am absolutely willing to wait my turn to see a gynae, but I do object to waiting many more months than any of my many friends down south in this position, so that the GP can pointlessly stall giving me the blood tests, and potentially put the life of another baby of ours on the line. I was lead to believe that there are standard level 1 tests, I didn't realise these were perhaps subjective, but I'd be really interested to hear more about this, if you have time to oblige?

I appreciate I am younger than many, but given we have potentially already used a 1/3 of our time without success, I don't want to waste any time needlessly, also I am sure you can understand that I don't believe what time we have left is relevant to it being ok to go through another miscarriage, if preventable.

Sorry if I seem cynical. This was not my stance at all 18months ago. I was an advocate of the British NHS, I used to work for them, and have seen much good done, but I believe most who have experience the incompetience and crassness of my local 'early pregnancy unit/maternity ward' would feel the same, and also carry the same worry and doubt about the level and approriateness of the treatment they are likely to receive in the future.

Thanks again for your reply, and I'd be genuinly interested in hearing about how consultants decide which level1s are approriate for which patient if you have the time

Hi Rianon

Thanks for your thoughts and kind response.

I have seen 3 different gps now in the practise, actually not through direct choice, but through their 'set up', which means it can be tricky to see the same gp twice without having to wait a long time for an appointment. They work as a collective group, and they don't see an issue with seeing different gps for follow ups etc. This has worked in my favour in the fact that I have had a chance to weigh up their stances without appearing flaky Unfortunately, due to my location, all the other gps in the practise (the only practise in my catchment area) are temp locums, and they have to run any major bloods, tests, referrals through the permanant staff, so I don't think I'll be better off. Thanks for the suggestion though.

I would love to pay for the tests privately, but I'm not sure we can afford it at the moment as my hubby's earnings have dropped 25-30% due to him having to be at home during the right time for us to try. It's a catch 22 for us. This ttc malarky isn't easy and seems that it's had a very real affect on every aspect of our lives, but hey as you say life isn't fair, and we have to make the best of it. I just wanted to make sure what my area was doing was the norm.

Thanks for the positive story about your friend, it gives me hope

All the best Rianon

Hi Maria, thanks for the assurance that this is normal. It makes me feel
better to have an answer to my posed question, and to know that this
seems to be the same across the uk.

You keep referring to 'facts and evidence', and I'm unsure what facts and evidence should be produced? In the first pregnancy I went to the gp to ask what to do next, was told to make a midwife appointment, and they said they didn't need me to do a test for them. If the miscarriage had been spontanous and at home, what evidence would they have had for that one? I don't feel like I am lying about about my circumstances, just the actual test....that doesn't mean I am a terrible person. Just because the system doesn't recognise clinical evidence, but only chemical based analysis, surely doesn't mean I don't deserve the same treatment as someone who had not been scared into not taking an actual pregnancy test, which after all are not 100% accurate anyway?

There is nothing in my medical history, other than perhaps the finer
details of my first pregnancy, ie: measurements of fetal pole, that my
gp/gynae know that Zita does not. She has a full copy of my bloods,
husband's SA, history of periods, cycles, etc, ect...there is absolutely
nothing more in my medical records, and in some regards quite a bit
less. I am not being referred to a fertility consultant. No such thing
exists where I live. I am being referred to a general gynaecologist, who
deals with everything. I used to work in the appointments section of
the hospital, I am aware of their proportion of miscarriage
investigation compared to other conditions, and it is minute. There is
no speciality for it here, as it's not called for on the same scale as hysterectomies, teenage STDs, abortions, etc. I
can completely appreciate this, as the NHS need to spend wisely, and if
this is where there is little call, then they cannot recruit
disproportionately. I have discussed this previously with Paul Entwistle
and he fully agreed that a general gynaecologist as they exist in my
area will have very limited fertility knowledge and practise, in
comparison to a fertility consultant, or even a general gynae who does
not have to spread him/herself so thinly across so many disciplines. Therefore I will disagree and continue to feel that my choice to seek guidance from Zita and her team of qualified fertility drs was, and continues to be, the right decision.

I
absolutely realise that I will receive no help with my thyroid from the
NHS, and have never even considered bringing it up to any NHS dr. I am
aware there would be no point. I merely mentioned it out of interest,
and on the off-chance that someone else reading this may comment on how
any treatment of their own boarderline result (all be it privately)
helped them achieve a successful outcome.

'Recurrent miscarriage
testing will be offered to you for free when you have three proven
miscarriages, like everyone else.' I take objection to this
statement....no not like everyone else! Of all 3 friends of mine who
have similar fertility woes (they are all in different areas of the
country) have all received swifter, more empathetic, and thorough
investigations than I am yet to receive. One had been trying for
13months and was given full intitial bloods, another had been trying for
15months and had had two losses and was given full bloods, vit d test,
and full level 1 immunology, Another had been trying for 20 months, had
one loss and was given all stated previously plus a lap and dye. None of
these women had any gynae history, nor did any of the basic results
come back as abnormal to spur on further testing, other than the second
one who discovered through day three tests she had PCOS, but was still
ovulating and had good progesterone. A test, like I have said, I am
still yet to have. I also have a good friend who went to her gp before
ttc, to say she was concerned at how light her period was, and was
immediately given full day 21 and day 3 tests. These are all 'in person'
long standing friends and not forum friends might I add (just in case it
is thought I am taking these examples from a maybe less general group,
if you catch my drift). So you can see my 'real life' comparative
situations have made me feel like I am being short-changed, this is part
of the reason I posted the question.

I feel your post pits me against my fellow girls, this
is not the case, I am not objecting to waiting as long as others in a similar position have to, I am objecting to the system. I didn't ask if you thought it was ok for me to try and push other women
out of the way to queue jump, I asked if the wait to see a gynae
was standard, rather than the gp doing the tests. I have absolutely no intention of trampling on others to get ahead, I merely wanted to find the lay of the land, hence why I
posted asking you informed ladies your experiences, and didn't plow in
all guns blazing to my local board.

I am relieved that my experience
is 'normal', but saddenned also. I completely disagree with the
sentiment that 'that's how the NHS works.' This doesn't automatically
make it alright. It is wrong that you had
to wait for 6months to see a gynae after 2 miscarriages and over the age
of 35. It is wrong that we foot the bill
for health tourists (totalling to more than a quarter of the yearly health budget) to have health treatment in the uk because our government cannot do their job properly, while cancer drugs are regected,
waiting lists for urgent cases grow and grow etc, etc. To say that's just the way it is isn't helpful to our society. We should be angered by this, we should stand up to it. Can you imagine if women were still seen as second class citizens, there was a time when it was said, that's just 'how it works'.......we know that doesn't make it right. When I have the energy, and have climbed out of the hole I find myself in, I intend to make my voice heard when it comes to fertility provisions and access in the uk. I will never say, 'tough, that's just how it is.' Yes we do need to make the best of things, but that doen't mean having to pretend that it's all ok.

Also thanks for your insight into temperature charting....I have doubted myself long enough and I won't let you tell me I am not worthy of investigation as what I experienced was invalid because it doesn't suit your ideal of how one tests for pregnancy. I have charted for a long time, know my cervical mucous, I ALWAYS get a positive opk prior to a very clear temperature shift, I know how long my lp is, I know when I'm late, I know what my miscarriage pains feel like in comparison to my period pains, I know what the weighty feeling on top of my uterus means, I know what the the dead remnants of my tiny baby looks like in my hands. These I experienced and charted on the four further losses. I didn't want to believe it could be true, I wanted to be able to fix this problem myself, I did not want to turn to the very people who sent me from pillar to post during my first loss. I haven't fixed this problem myself, and pretending it wasn't happening didn't help. So I won't put my head in the sand anymore, and won't allow anyone to make me feel my experiences were invalid, and strike off those tiny lives as nonentities. Thanks...your dismissive attitude has made me face reality, made my conviction stronger, and will help propel me forward to get answers.

The msgs from you have seemed in places quite antagonistic. But the above thank you is genuine. Having to defend my position has made me stronger. I also genuinely appreciate you taking the time to post back, even if some of it seemed pretty harsh to me.

Now on to the last post. It is lovely to hear that your friend has had such a positive outcome. I love to hear such wonderful stories, I pray every day we'll get there. I know little of your journey, but at what ever stage you are I wish you all the very best and every happiness. If I don't hear back on this thread I hope to speak again sometime in the future, perhaps on better terms

Hi Chava, thanks for your post and sorry to take so long to reply (we've had some really upsetting news and I wasn't in the right frame of mind).

Yes my TSH almost 2yrs ago was 2.38, and my underactive thyroid symptoms have been getting increasingly worse since then. I notice that uk thryroid support suggests below 2, but ideally close to 1 for a successful pregnancy. They forwarded me research papers to back this up at the time.

It's a shame that the NHS don't take any notice, even at this stage...

Never mind, I was given some good advice recently 'Fertility is like a giant jigsaw. There are many pieces, and not all of them have to be in the right place for a successful pregnancy, we just have to get enough of them to the right place and viola!' :-) This was reassuring as I am a bit of a perfectionist and felt like making everything 'right' felt so distant after our losses.

I have been trying alternative therapies for the past 8months, and I have cut out wheat and diary from my diet. I am also careful not to have too much of those foods and drinks that can exasperate thyroid issues, in the faint hope my body will normalise itself...one can but try.

I don't know of your journey Chava, I assume maybe thyroid related? I hope things are going well for you, all the best x

Thank you Pheobe! This is a ridiculously late reply (I've been away from online ttc for a while as things have been tough, and I now know I potentially have less time than I had hoped), but I am very grateful for the 'hidden c' info. I sending my 'sample' to Athens tomorrow for hidden infection testing. Like you I've only had 2 partners, but I think it's worth looking in to, and at least I can exclude it if it comes back clear.

The first gynae I saw was very unsympathetic, and although he agreed to level 1, most were rejected at the lab, as he didn't get hematologist's approval. I saw a lovely gynae a couple of weeks ago, and he has redone the tests and has offerred us a lap and dye in 6weeks to check for endo :-).

Huge Congrats on the birth of your little boy :-) x

Hi Snuggly,
Sorry so long replying, not been on any forums in a wee while as have moved house so have been without wifi. Thanks for the support hun x My gp and the gynaes are a bit awful. I have had a level 1s now, and some of the level 2s (privately), and have discovered I have inherited thrombophilia, MTHFR and PAI-1 Polymorphism, so I suppose a little similar to the person you know(has she had any luck yet...is she ttc naturally or ivf?). NHS still not remotely interested. I am being treated through Serum in Athens instead. I had a hysteroscopy a few weeks ago, and will be on clexane if we have a natural conception. Issue now though is that my GP will not even let me explain what I've been diagnosed with so I can ask her if they will do the monitoring tests that Serum would want if we fell pregnant. I would be happy to pay them privately for this, but she just won't hear me out. She has said it's 'alternative' to their suggestion of NHS funded IVF, so she doesn't want to know. I get the impression she thinks if it isn't standard IVF then it's just some cookoo dr trying to rip me off. She can't seem to appreciate that I feel that if we are conceiving that IVF may not prevent the mc? It means DH and I are considering moving to Glasgow (6hrs away) to be able to get proper monitoring. Have to say though that the thought of extra cost of accommodation doesn't help my anxiety.....I feel I'll just be waiting to mc again, I just can't seem to get past that thought
I see you are having IVF...do you mind me asking where? I hope 2014 is both of our years!!!

Hi lovely rianon

I have inherited blood clotting disorders, which were picked up as I had gentic testing of MTHFR, and PAI-1 Polymorphism. The MTHFR mutation also means my body cannot absorb folic acid properly and this is obviously also a problem (solved partly by taking 5-MTHF (which is what the body breaks down Folic acid into to use it)). I need to do a bit more research into this myself, as I am unsure if there is a standard protocol for treatment of this in the UK. From what I have read so far it is taken very seriously in America, and there are women with many mcs in the uk, who have exactly this, but I am unsure if there is any way forward with the NHS? I know the treatment is usually clexane, and it's often very successful. I just wonder now if we will get a bfp naturally again....fingers crossed, if not though I have come to terms with having IVF along-side immune support.

Thanks for your thoughts about IVF. I just can't understand why my local board can't see that as well. My DH said he gets the impression they have so little experience with this that they feel completely out of their depth, and all they can think of is IVF. It's a one answer fits all situation with them. I know it must be tricky for them, just frustrating that they can't even entertain having a conversation about it....feel like I am the annoying child who is bothering them.........which, as a people pleaser, I find sooooo hard. It makes me not want to ever go back...which is pretty childish in itself hehe

Yes I love my Athen's clinic It was thanks to Pheobe really. I sent them blood for hidden infection testing, and they were so helpful, empathetic, and down to earth. Penny, the clinical director is so genuine, and you just feel she so wants to help you have your baby. She made both me and DH feel so much more positive. We have had so much advice, proper management, phone calls, and in person meetings (we went out a few weeks ago), prescriptions written, and we haven't paid a penny (no pun intended) for any of it. Plus she told us we don't need IVF...so she is earning nothing from this.....how many clinics can we say that about in the uk?!

Unfortunately I think Glasgow is the nearest place We used to live in Edinburgh, so I tried the private IVF hospitals there, as I will also need Intralipids, but they say they will not treat anyone who is being managed elsewhere, and only treat IVF patients anyway. Aberdeen are the same, it's only the GCRM in Glasgow that seem more open-minded, think they will do the bloods for ARGC patients in Scotland also, and they are same day testing too. The nearest private GP practise is 2 1/2hrs away and they mainly do health checks for employers...trying to weigh up if I can travel for 5hrs each time I need to be monitored and not sure how I feel about being tested by people who won't know anything at all....I figure if say my platelets count was very bad at least GCRM could jump straight on to it, where as I wonder with the resistance I am already getting where I live, if they will take any of it seriously, as in get things that are going wrong sorted out asap? If I could be tested here and save the travel all together I'd do that and save the extra stress, but if I need to travel pretty far anyway, I wonder is it just worth going to the nearest 'conception' related hospital? What do you think?

I don't know about your journey rianon....feels like I am very sefl-indulgent with my posts How is it going...are you still on it like me, or do you have your happily ever after yet?xx

p.s. how do I thank someone for their post?x

Hi rianon,

It's so lovely of you to take the time to give me your thoughts, especially as you now are in such a good place, very kind of you :-) x

I think there are two places in the uk that offer immune support whilst ttc naturally, Dr Gorgy in London, and Care. The problem again is distance, plus the extra costs, but I am keeping my options open, so anybody reading with an opinion of either I'd be interested to hear your thoughts.

Penny from Serum has said we should start clexane etc as soon as we get a positive test. I asked if this would be soon enough and she said that the blood thickens further after conception and it is fine to wait. Apparently she has seen many people in our position have a positive outcome after antibiotics, hysteroscopy, chinese herbs, and vitamins that treat diagnosed immune issues. Fingers crossed it will be enough, and not too late. I find it a little hard to trust drs etc since our first miscarriage, but she gets nothing but glowing reviews for her compassion and success, so I have to try and go with it. I think we'll give it 3months and then go back to Athens for IVF. If I have no success there after a few goes we will probably go to ARGC. I feel like I need to get on with things as I would like to share this with my mum and I am very worried after her fight with cancer last year.

Thanks for the story from the other website...it really cheered me up. I saw a thing on tv this am about a women who has had miscarriages and many failed ivf rounds. She is now in her 40s and stated that 2/3rds of IVF couples never get success......this has completely freeked me out. I hope she was referring to the average success of each cycle rather than the overall chance of ever being successful

Yes we live in a rather remote area. It's very beautiful, and provided a great childhood, but it's not so great at times like these. That's interesting you go to Scottish dancing, we had a ceilidh at our wedding It is so much fun. Part of our secondary education involves scottish dancing, which we then go on to use at our Christmas Proms

I am so pleased to read you have two little girls, how wonderful My very dear friend also has a genetic disorder in her family. She now has 3 lovely childeren, but she had to chose to terminate one pregnancy at 15wks and another was lost spontaniously at 8weeks. She always says she was so lucky that she conceived so easily as it let her feel like she had control over the situation in even a small way. Though after the termination she requested IVF, but was declined as she already had a child. I think I would have gone for it privately though. I am not sure I could take the anxiety of waiting to find out what came back from the testing. It is so wonderful that it all worked out so well for you. Yes absolutely, the end result is what is important, rather than the process. I am ready for my baby, whether it be natural or IVF.

Thanks again for your kind response rianon. Sending best wishes to the four of you xx