* Author Topic: Thyroid Chat - Part 9  (Read 39733 times)

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Offline Pizzicato45

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Thyroid Chat - Part 9
« Reply #140 on: 20/12/17, 11:57 »
Thank you so much Amazone.

I have been mulling over lots of these issues recently - there is so much to consider with auto-immune disease and thyroid issues. I honestly did think my problems would be solved by taking a pill five years ago, but am a lot wiser now. 10+ pills a day and still not right! The only time my FT3 was in the top third of the range was before I started taking thyroxine. Sadly the NHS just routinely tests for TSH and FT4 so it's a hidden issue. I am definitely symptomatic (losing hair, tired etc.) so can't press ahead with IVF until I resolve this.

I am tending towards a natural cycle, as I saw the effect on my thyroid levels of cycle no. 1's drugs. I am undecided whether to go with empirical immune treatment for my first donor cycle (clexane, pred and aspirin) and see what happens, or test beforehand. I have a long list of questions for Serum at my consultation next month. Definitely no intralipids for me though as soya literally makes my thyroid ache. I hadn't thought about the added immune issue of donor eggs - more food for thought.

I hope you don't mind me asking, but which clinic have you moved to? Will you have ongoing immune monitoring throughout treatment?

Interesting to read about the Vitamin C. I take it to aid iron absorption, as my ferritin level is pretty low, but shall knock it off the regime asap. Thank you. I switched to Solgar selenium a few months ago which is much better than my last supplement. 

Wishing you the very best for your future treatment.

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    Offline StrawberrySundae

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    Thyroid Chat - Part 9
    « Reply #141 on: 20/12/17, 16:53 »
    Hi again Catkins and Amazone  :) I hope you don't mind me chipping in here as well. I saw Professor Conway (endocrinologist) who said I don't have hashimotos, but about a third of the population have antithyroid antibodies, just most have no reason to check. Anyway he agreed that a low dose of 25mcg levothyroxine on alternative days is fine for me personally, going up to daily at next bfp. He also recommended I upped my prednisolone to 20mg (I was only on 5, then 10mg at last 2 cycles, neither of which worked interestingly - I had requested less after I lost a load of hair earlier this year after being on 30mg, but I don't know if the steroids actually caused that). He also suggested maybe trying to avoid gluten, but said the evidence wasn't conclusive about that. Catkins I don't think I'll do intrallipids either, it doesn't seem to have made any difference in my case.

    Amazone that's interesting about the vitamin C, as I always take 1000mg per day, so I may try changing that. I don't get many colds though! Also what you said about donor eggs being more likely to be rejected if you have thyroid or immune issues interested me, as my DE cycle was definitely my worst in terms if not even a glimmer of a 2nd line or implantation. I'm having my nk cells retested by Locus Medicus next month. Dr Gorgy also recommended the KIR, Lad and DQ Alpha tests, but I haven't got round to mentioning those to my DH yet!

    Good luck to you both  :)

    Offline Laquinn

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    Thyroid Chat - Part 9
    « Reply #142 on: 21/12/17, 09:52 »
    Hi Ladies - reading with interest as a fellow thyroid issue ttc-er.

    Catkins - My immunologist has prescribed a couple of intralipid treatments if I get a bfp. He didn't seem to think the soy/thyroid thing would be an issue.

    StrawberrySundae - My TPO antibodies halved when I went gluten-free.

    Amazone - just wanted to say thank you for pointing me in the direction of an immunologist. I had immunes testing done last month and finally we have a reason for our previously unexplained late loss; I had a strongly positive ANA test. On treatment now and planning on doing induced cycles in the new year.

    I've never had a diagnosis for a thyroid autoimmune condition; my endocrinologist said the only way they could confirm would be to do a radioactive iodine test which is obviously not an option whilst ttc. My sister has Graves Disease but I don't have the Thyroid Receptor Antibodies. I'm wondering if it's Hashimotos...

    My latest blood work:

    TSH        1.71 mU/L (0.35-5.00 U)
    Free T4   13.0 pmol/L (9.0-21.0 U)
    Thyroglobulin Antibody 1062 IU/mL (102-496)
    Thyroid Peroxidase Antibodies 240 IU/mL (0-34)

    Good luck everyone - and Happy Winter Solstice!  ^reiki^ ^reiki^ ^reiki^


    Offline Pizzicato45

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    Thyroid Chat - Part 9
    « Reply #143 on: 21/12/17, 11:37 »
    Hi all,

    Really interesting to read everyone's posts and very reassuring to have people to chat to about all things thyroid. I think what complicates this whole process is that everyone with thyroid disease is so different and it needs a very personalised approach.

    Laquinn - agreed, lots of thyroid patients seem to have done well with intralipids. Personally, I have issues with all the hormones. I switched from dairy to soy 15 years ago, a year later I was having lots of problems with ovarian cysts and lost my left ovary. I didn't make a connection until a couple of years later when my friend went through the same thing and the consultant told her to stay away from soya. Just after I was diagnosed with Hashis, I noticed that when I occasionally had a soya milk drink, I had a band of pain around my neck for a couple of hours and then got very dizzy. So I've avoided it since then, but that is not to say that it isn't the right thing for others. From what I understand, it is possible to have both Graves and Hashimotos, and even Hashimotos on its own can make you feel like you're swinging between hyper/hypo. I definitely felt hyper at the start for a few months, followed by hypo. Hope you can get more answers re. your diagnosis. Have you read the books by Isabella Wentz or Durrant-Peatfield? Are you on meds?

    Strawberry Sundae - good to know that Dr C advises pred. doses too. Just hope I don't have any more hair loss! Going to organise my London trip for early 2018. I'm just waiting for results of a full thyroid panel I had done privately.

    I started going to a repro-reflexologist recently which is blissfully relaxing. Interestingly, when she works on the area underneath the big toe, it feels like my whole body is coming alive again and that's the area linked to the thyroid  :) Feel very lucky to have found her as not too many alternative fertility therapies up in the far north.

    Wishing you all a relaxing break over the holiday season and the very best for everyone in 2018.





    Offline Laquinn

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    Thyroid Chat - Part 9
    « Reply #144 on: 21/12/17, 13:40 »
    Catkins - Sorry to hear about your experience with soy  ^hugme^ I'm on a maintenance dose of PTU. I became thyrotoxic around 4 months after the birth of our daughter who was very sadly born sleeping; looks like it was post-partum thyroiditus. I feel good at the moment but when I was thyrotoxic I felt very unbalanced like you describe. I feel better for cutting out gluten and dairy and I'm planning on doing an elimination diet in the New Year.  I read the Mary Shomon book on thyroid and pregnancy which was good but it was Alan Beer's book Is Your Body Baby Friendly that rang bells for me and got me to the immunologist. I'm on Hydroxychloroquine for the positive ANA, asprin, a prental, Omega 3 and vit D. I'm Glasgow so have to fly down to London for immunes. Did you have the radioactive iodine test to get your Hashis diagnosis?

    The repro-reflexologist sounds good  :)  I'm having fertility massage this cycle and think it's really helping too.

    Offline Pizzicato45

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    Thyroid Chat - Part 9
    « Reply #145 on: 22/12/17, 10:48 »
    Oh Laquinn - I am so sorry for everything you have been through in the last couple of years  ^hugme^ I really hope that immunes treatment will give you a happy ending in 2018.

    I was diagnosed by antibody levels and blood tests as I was already subclinically hypo. It was actually my first fertility clinic that diagnosed me as I felt absolutely shocking but GP said all was normal. Long story short, I suspected thyroid issues as I had the full checklist of hypo symptoms and asked for a copy of my blood tests, saw that my TSH was over 5 and knew that it was far from normal. Then I went for private tests which revealed the antibodies and took the results to my fertility clinic. They passed it onto their endo department for diagnosis, who then wrote back to my by now new GP practice. However, my friend is also diagnosed from having high TPO antibodies but her thyroid hormones are all still in check so she is not on medication. So no, no RAI test for me but I think my Mum had one to diagnose Graves before she had her thyroid knocked out.

    I read the Beer book after my first cycle - such a great book. We need IVF because of male factor and that book brought home all my complications too. Never simple...

    I'm based a few hours north of you and travelling for treatment is just the normal. I always think of the people from the Northern Isles who have Aberdeen as their NHS clinic.

    Fertility massage sounds great. I had acupuncture throughout my first cycle and it was a definite help too.Good luck with the elimination diet. I did the autoimmune protocol for a while to reset everything and then found a lot of foods I can tolerate a little but not a lot, like eggs and peppers. I am going to have a very strict few weeks after new year.

    Offline Laquinn

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    Thyroid Chat - Part 9
    « Reply #146 on: 23/12/17, 16:24 »
    Thanks Catkins  :) Hope 2018 brings your rainbow too  ^rainbow^ ^fairydust^ ^rainbow^

    Your TSH was over 5 and your GP thought that was normal?!  :o

    The plan is for superovulation cycles and our consultant is happy to for us to have scans done at GCRM so not too bad.

    Would you recommend doing the autoimmune protocol? Does that involve eliminating grains?

    Offline Syd72

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    Thyroid Chat - Part 9
    « Reply #147 on: 16/01/18, 08:42 »
    Hi all, I hope it's ok to jump in with a couple of fairly vague questions...

    I have an underactive thyroid and for years it's been stable, mostly sitting at under 1 or just over 1.  However, it seems to have gone a bit haywire the last few months and I have no idea why unless it's to do with the cyclacur I've been taking on and off (I didn't realise the first time I used it that it interacts with thyroxine) or just generally to do with being pregnant several times in the past 18 months.  My questions are:

    1. Does anyone know roughly how long after increasing thyroxine it takes to start bringing the numbers down?  I'm right in the middle of a donor egg cycle, my donor started stims last week, I'm on prednisolone, clexane, aspirin, cyclacur and antibiotics, flying to Greece tomorrow and hoping for transfer late this week or early next week - now concerned that this morning's result of TSH at 2.2 is going to cause a problem.  My recent results are:
    16 Jan '18 - 2.2
    17 Nov '17 - 0.7 (one month after an 8 week miscarriage)
    1 Sep '17 - 2.4 (had just had a positive pregnancy test the day before)
    16 Aug 2016 0.8 (had just discovered I was pregnant for the first time)

    The only time my dosage has been changed in recent years was after the 1 Sep 2017 results, which does seem to have worked but I'm worried that it's gone up so much again.

    2.  I've been leaving approx 3 hours between my morning thyroxine and my first dose of cyclacur - is that enough time?  I am now up to 4 x cyclacur a day, one I take late morning, one mid-late afternoon and two in the evening.  There is approximately 9 hours between my evening dose and my thyroxine the following morning.

    Sorry for rambling, I'm also horribly jet lagged today so trying to get my head around this and really quite worried now about this cycle.

    Thanks ladies.

    Offline Laquinn

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    Thyroid Chat - Part 9
    « Reply #148 on: 16/01/18, 10:54 »
    Hi Syd!

    I'm hyper and on PTU but I do know that estrogen affects TSH levels. From what I read a TSH of 2.2 wouldn't be of concern but you could maybe phone your doctor and increase your thyroxine dose?   

    Good luck with your cycle! xx

    Offline Syd72

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    Thyroid Chat - Part 9
    « Reply #149 on: 16/01/18, 11:01 »
    Thanks Laquinn, my doctor has increased my dose as she says current levels arenít ideal, Iím just wondering how quickly the increased amount will take effect. X