* Author Topic: Thyroid Chat - Part 9  (Read 39835 times)

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Offline 126970

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Thyroid Chat - Part 9
« Reply #80 on: 25/01/17, 19:03 »
Hello All,
I have been reading this FF especially Thyroid chat for a while. I hope it is OK now to join.
Introducing myself briefly: after experiencing symptoms for years I was diagnosed with hypothyroidism and Hashimoto in July 2015.
I agree with Amazon, the reference level for TSH is too big in the UK mine was around 3,5 so GP never picked up any related issue.
As I am TTC since 2014 March I was reading a lot online and thought I should go for further tests so visited a private endo.
While setting the right dose of levothyroxine my TSH level was all over the place (0.0001-80) but in the last 10 months or so I feel fine and TSH has settled too. (last week TSH: 0.74).
After 2 failed IVF cycles (no single ET happened) in early 2016 we turned to argc where they found out I had immune issues.
My TNF level (which shows an inflammation I believe) was 50 so I had 2 rounds of humira, with 1 Intralipid. After it my TNF level dropped to 33. I was suggested to have 1 more intralipid before the actual IVF cycle. And now I have just heard back that my TNF level is 43.  ???
As reading earlier posts here due to its soy content Intralipid is not recommended for ladies with thyroid issues therefore I had asked the nurses several times about it. They consulted each time with senior doctors who approved and advised to have those drops.
Honestly I feel puzzled. Can the intralipid cause that my TNF got elevated again?
Or is TNF related to Hashimoto? Once you have Hashimoto it means you have constant inflammation, haven't you?
I was seen by an NHS endocrinologist too (private endo was in my home country) who said I was perfectly healthy,1 blood test per year was enough. He had no clue about TNF levels. At the fertility clinics they have limited understanding of endocrine issues.
I wonder who can see the bigger picture? (only poetic question..)
Does maybe any of you have a similar story? Or give me any idea what else I could try?
I am doing exercises, reflexology, more or less on healthy diet (sometimes cheating periods) minimizing gluten and dairy.
I am taking folic acid, vitamin d, selenium, calcium, omega 3...(you name it)
Good luck to all xxx

 

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    Offline Tulipan

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    Thyroid Chat - Part 9
    « Reply #81 on: 25/01/17, 20:15 »
    I am sorry that I cannot help with your questions but your post has raised some questions about my situation.

    How intralipds affect TSH levels?

    I am currently on Synthroid to lower my TSH and it has just been increased to accommodate for Estrace (estrogen) intake as I am preparing for my FET. I will have intralipids 10 days before FET, how will that affect my TSH?

    I have not heard/read before about this issue.

    Offline 126970

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    Thyroid Chat - Part 9
    « Reply #82 on: 26/01/17, 08:41 »
    Hi Tulipan, Please read earlier posts on this thread, Amazon has detailed her investigation.
    Apparently if you have Hashimoto you should avoid Intralipid. Soy is really bad for you then, I have read this elsewhere as well.
    Sorry I cannot help you by estrogen pills, I have not met them (yet   ::) )

    Offline Juju44

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    Thyroid Chat - Part 9
    « Reply #83 on: 26/01/17, 13:30 »
    hi Campervan,

    I did a cycle with ARGC last year, I had an IVIG drip before transfer as they said I had raised NK's/immunes.  The cycle failed, so they wanted me to have a course of humira and intripalids, prior to starting another cycle with them.  I didn't proceed, I didn't want to put more drugs into my body; which aren't meant for IVF (proven medically).  I also have thyroid issues, which they only addressed when I was cycling, not before, and it only got lowered to around 3 during my cycle, when it should be below 2.  Did this impact my cycle, I don't know.
     
    I went with a new clinic, who asked me to see an Endocrinologist about my thyroid, which I did.  I got that lowered, and had a new cycle, with no additional drugs for immunes/NK's/steroids - ARGC give you a lot, and have since fallen pregnant.  The new clinic do not agree with additional drugs which can harm the embryo; every clinic has a different approach, I get that, but you need to be careful and understand what these drugs are doing to your body.  Surely your Endo would advise you on soy products, and what not to take?

    Not sure if this helps you, but wanted to share my experience.  Due to pregnancy, I'm now under the NHS Endo (waiting to see them), but still have my private guy for assistance.

    Good luck with your journey :)

    Offline 126970

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    Thyroid Chat - Part 9
    « Reply #84 on: 26/01/17, 14:43 »
    Hi Juju44,
    Yes I understand what you mean. Basically you never know why a cycle does not work out. I also had 2 failed cycles... I find this fertility journey is like a lottery game. Sometimes it doesn't work, sometimes it works exactly with the same procedure.
    Anyway, I have just talked to a doc who confirmed me Intralipid has no harm to Hashimoto patients. They only avoid intralipid with patients with soy allergy.
    He also told I probably would have IVIG and steroids while stimulation.
    They have checked my TSH and free T3 (or T4 can't remember ^bigbad^) last week and they were fine. Can I ask what thyroid issues you have? You are hypo, aren't you? And til what level was it lowered before your successful cycle?
    Btw congrats on your pregancy Juju44.  :) It must be amazing having all this madness behind you  ::)
    (However it is cool you staying on ff and support other people  :-* )

    Offline Amazone

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    Thyroid Chat - Part 9
    « Reply #85 on: 26/01/17, 22:10 »
    Dear Juju, I just recently read your news on the Greek board and am glad your pregnancy is progressing well.

    Unfortunately lots of people (especially women) have undiagnosed thyroid issues. We that are TTC go through all kinds of tests and discover we have a thyroid condition. But still it's so difficult to get information and adequate treatment. GPs usually are of no great help, and many endocrinologists specialize mainly in diabetes and not in thyroid problems. After an endocrinologist with a very good reputation told me I didn't need any treatment (basing his diagnosis on TSH only) in spite of me having severe symptoms, I consulted another specialist, she was recommended in a Hashimoto's forum, and started treatment. Now, six months later I am on 125 l-thyroxine and the last couple of weeks things have been improving, at last.
    Talking to different people, doctors and other "Hashies", I was told to avoid soy, in food, and not have intralipids. I have to admit I never asked why exactly, I supposed that as soy acts like estrogen, your body can't absorb the thyroid hormones properly. Instead of intralipids, I was advised to have Omega- 3- infusions (Omegaven). There was a thread on this too, Omegaven as alternative to intralipids:
    https://www.fertilityfriends.co.uk/forum/index.php?topic=324065.0

    With Hashimoto's, as I understood it,  you don't have constant inflammation, you have episodes/phases when the thyroid tissue is being attacked, but also phases with lower activity. What kind and the degree of inflammation varies also from person to person. I consulted a reproductive immunologist in Germany (that's where I am based) and had immunes tested. As almost everything was within range, I was advised not take prednisone, as, if you don't need it, you can be oversuppressed and this can hinder implantation (this would confirm Juju''s experience). So the therapy would be, Omega 3 infusion before transfer, to be repeated after BFP. After BFP repeated blood tests, and, if/when there is the possibility of an immune reaction, then take prednisone. Unfortunately I have not had any transfers since then, so can't tell from personal experience. Hope this will change now that the thyroid seems to be stable, but age is not on my side.

    So no more prednisone for me as experimental treatment, if I don't really need it. But of course it's different for the ones of you who have high NK cells, TNF etc.

    And another thing, Hashies be cautious with the flu shot or the likes, several weeks have to have passed before you do a transfer after that. I asked the doctors at my last clinic and they said no problem  :( - which again proves that fertility doctors have only basic knowledge of immune issues

    Offline Juju44

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    Thyroid Chat - Part 9
    « Reply #86 on: 30/01/17, 11:48 »
    Hi Campervan,

    With ARGC I did have IVIG drip & steroids with that cycle.

    My new clinic thought I had Hashimoto's due to raised NK's 505 (I think), and thyroid of around 6.   I got my thyroid lowered to TSH 1.93 and Free T4 12.3, then I started my cycle.

    Amazone, that is interesting about Intralipids, as soy based and you say not to have this, but Campervan has been told she's Ok to have it.

    Campervan, are you seeing a specialist for your thyroid?

    Offline bambinoshar

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    Thyroid Chat - Part 9
    « Reply #87 on: 30/01/17, 16:48 »
    Hi Amazone and campervan  that's interesting what you say about the intralipids pushing your tnfs up after humira and intralipids. I had my thyroid tested in 2014 at sims in Dublin they suggested I had adrenal insufficiency and thyroid issues so I had this tested and it was 2.47 they put me on 25mg of levothyroixin and my TSH came down to well below 1.73. So I've been on that dose ever since and have this checked periodically with my GP ATM annually as they are prescribing it to me. Haven't seen an endocrine specialist have tried to find one in Ireland but they don't specialise in fertility.
    My tnfs were similar at 54 and after taking 3 lots of intralipids they went up when I rested to 57, so I had to cancel FET then added hydroxychloquine with 3 more intralipids every 2 wks and retested they dropped to 34 but unfortunately FET didn't work. Had FET in October this time added humira and intralipids was 33.5 before FET again bfn. I have never been properly tested for t3t4 I tested negative for thyroid antibodies.
    But I suffer from joint aches & pains, fatique, frequent headaches, feel the cold, even though I go to bed and get good nights sleep I eat a good diet & take regular exercsie and take omega 3.
    I had tests with rheumatology but they can't find a cause for inflammation.
    Maybe the thyroid is the issue as I had premature menopause.
    I have read the thyroid can attack the hormones and pituitary.
    Interesting that you mentioned intralipids as it works well in most cases but when I suggested they don't work for me no one has ever said about thyroid. Does Prednisolone help with this?

    Offline 126970

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    Thyroid Chat - Part 9
    « Reply #88 on: 30/01/17, 18:52 »
    @Bambino,
    So apparently soy is no good for any thyroid issues, I have read it on many many forums and books. And I believe it, so avoid it in my everyday life.
    However I was told at my clinic I can still take Intralpids. ...
    My TNF was 50, stayed 50 after first round of Humira, took another round of Humira with Intralipid then TNF dropped 33.
    Then I was asked to take one more Intralipid and TNF flared up to 42. That is why I thought that Intralipid was the reason of the increase but the doc has not confirmed this to me. He told all patients get Intralipid (except thos with soy allergy)and this is fine by reproductive endocrinologist too he told.
    Sorry I am not familiar with Prednisolone. What is your plan?

    @Juju I do not see any endocrinologist at the moment, I was discharged. Once your TSH drops below 4,5 you are considered to be healthy...by NHS..
    GP prescribes me the meds and I have blood test once per year.  :-\
    Otherwise I try to avoid gluten and sugar as they say that's recommended for us and also do exercises and reflexology and meditation, selenium and vitamin D.



    Offline bambinoshar

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    Thyroid Chat - Part 9
    « Reply #89 on: 30/01/17, 19:47 »
    Hi Campervan that maybe explains why intralipids don't work for me I didn't think I had any issues with soy so maybe I have after all. I'm hoping to use humira and hydroxy and steroids and avoid intralipids if at all possible I am unable to use IVIG. Hopefully the combo will reduce tnfs enough to bring them down to <30.
    Prednisolone is a steroid. My gps the same about thyroid and the fertility clinics are not as progressive in these things and most of the specialists are in london. Are you using humira next time round?