My Story...Breakthrough...Thyroid Antibodies...diagnosis..miscarriages NHS.

Hello,

Here is my story, it's a long one. I want to thank you all for helping me understand thyroid and the implications if left untreated. I am going to write a blog to help all women with this issue understand and get a diagnosis as I have a lot of experience in this now.

As some of you may know I am now 7 weeks pregnant. I have a history of very early miscarriages at 4.5 weeks (5-6 in total).

I had an upward hill battle to find out what the cause was. First, I got dismissed by GPS who said you have a healthy child stop stressing it may be just that.

I knew it was not just that. It is not normal to have that many early miscarriages. When I went back again after another miscarriage in December 2015, the GP finally referred me to the gynecology team who deal with recurrent miscarriages with the NHS. They sent me for the tests below which came back clear.

All the following tests came back clear:

Pelvic Ultrasound- Uterus

Ovulation

Hormone Levels

Blood Clotting Disorder Tests

When I was going through my previous miscarriages I was at the EPU (emergency gynecology unit) and there was a Senior Research Nurse there and luckily I got to meet her otherwise I would never have even thought of or discovered this. She mentioned they are doing a study with the NHS to see if Thyroid antibodies are linked with miscarriage. I quickly said 'oh no, my thyroid level is fine as I  had it checked'. She said 'no dear, you could still have elevated thyroid antibodies  with normal overall TSH level'.

She also asked me to ask the GP to be referred to the endocrinologist. So I went back to my GP and I said,  "I was encouraged to get the thyroid antibodies test done." To my surprise they came back elevated. They also referred me to the endo which I requested, the appointment was 4 months away. But I got there.

I went back to the GP who refused to treat me due to TSH being normal range which i understand as that is the guidelines. I went back with the NICE guidelines but they said it didn't apply to my case.

SO I sat here everyday and researched and discovered there is a BIG link between these antibodies and miscarriage.

The only test that came back NOT clear was the thyroid antibodies so it had to be this I thought. I searched for private endocrinologist through thyroid UK, I was so lucky to find one who prescribed me a low dose 25mcg on Levothyroxine because I kept being told my antibodies. I was advised by many GPs and this specialist to also add aspirin to this.

I started doing the above and two weeks later I was pregnant! I have never made it to 7 weeks for a very long time. I have a scan on Friday to detect a heartbeat. I know it could go either way which I was told. I am still preparing myself at the back on my mind to miscarry so it wont come as a shock if I do. On the other hand, I am trying to remain positive.

So 4 months have passed and my NHS endo appointment arrived today! I told him my history of miscarriages and elevated thyroid antibodies and all other tests are all clear.He knew of another lady who he saw with the same situation. He said I guarantee you the thyroid antibodies are causing the miscarriages. He knows his stuff! I said 'really? I knew it' as I started to cry. I had to do all the backbone research work myself and could have saved all my pregnancies. I did get help from the research nurse who suggested the antibody test in the first place which was a big stepping stone.

This endo (NHS) knows his research and says in America they treat this which is what I read. He prescribed me thyroxine without question straight away after hearing my case. So here I am today and I have finally got a prescription on the NHS of 50mcg a day! It took months but I got here.I got a diagnosis  and a treatment plan and monitoring.

I don't have to keep paying for private consultants and prescriptions anymore and everything is done and monitored by the NHS now. I feel whole lot better.

He said he will speak to the obstetrician and negotiate a treatment of steroids (think they lower the antibodies), aspirin and thyroxine if I miscarry again (I hope I don't and I have this baby).

Right now I have started the 50mcg levothyroxine and 75mcg of aspirin so hope just this helps.

(This is specialist advice given to me on my individual case please do not follow anything without consulting your own GP.)

[Jose651]

Keep well Orangepie,

J

[Butterfly65]

Hi Hidden , 

It's so very sad but unfortunately all so very common that you, along with others have had to endure all of this because of incompetent Doctors. I'm so pleased that you have finally had the help and medications you so obviously needed. It seems finding the right medical staff who have the knowledge & ability to listen and diagnose sufficiently is a 'luck lottery'. Best wishes to you and congratulations. 

[Molliemoo1]

I really hope this works for you. I hope that i get the same treatment in pregnancy as well. X

[Clutter]

Orangepie,

Sounds as though you are now in very good hands.  Fingers are crossed that everything is well on Friday.

[Marz]

So glad you have the support you have fought for.  Also check your B12 and VitD levels.  Very important for the future health of your unborn baby I have read .....

Check out the VitD project with children and expectant Mums on ....

grassrootshealth.net

[Hidden in reply to Marz]

Thanks. B12 is really good toop range. Vit D is a bit low working on it. Unfortunately I was told too late my dose was not high enough ans I am possibly miscarrying.

[Marz in reply to Hidden]

Oh dear that is very sad and I am so very sorry for you.    Hope you have loving support around you .....

[shaws Administrator]

I am glad you have a sympathetic Endo and wish you well. This is a link which may be helpful:

hypothyroidmom.com/about-da...

[marsaday]

This is very interesting and thanks for sharing.

We have a little 2 y/o now, but we had to go through 4 IVF cycles to get there.  Your treatment plan sounds similar to what IVF mothers can go through.  My wife took steroids (prednisolone) to calm down her anti inflammation reactions.  

This wasn't thyroid related but just a lot of inflammation in her system.  We still don't know why she has this issue.  She also has over active killer cells and so these would kill a fertilised egg.  She took a special oil infusion from a drip to mask these killer cells and stop them damaging the egg (3 times during the 9 months).

She also took aspirin to help thin the blood.

There is a book by an american scientist who says all women can have a baby but you need to find out what is going wrong.  Sounds like you have identified your issues.

Do you have any thyroid blood tests results as these would be useful to look at.  Also how old are you ?

[Hidden in reply to marsaday]

Hello check out my blog all the info is on there:

rainbowbabyhopes.wordpress....  i am sorry to hear of your wifes issues. Are you trying for another?

Yes the endo told me women who do IVF take these steroids but my case is different but seems it could work.

Interesting book title.

[Hidden in reply to marsaday]

I am 30 now. But started having miscarriages when I turned 28. However, my ovarian reserves checked out fine.

[Bluemaxx]

Congratulations on being pregnant and for doing the necessary research to find out what was causing your problems. I am also trying to get my TSH levels and antibodies down so I can do IVF as soon as I am well again. I have gone gluten free and I really think it's helping. Wishing you the best of luck.

[eeng]

This is interesting. My daughter had a baby nearly 3 years ago and has since had two very early miscarriages. She had a TSH test done after the first miscarriage and it was below 2 (I can't remember what exactly). I'm sure she didn't have antibodies checked. I will send her a link to this post.

[Hidden in reply to eeng]

Thank you . Tell her to check out my blog it has thyroid and other tests on there. rainbowbabyhopes.wordpress....

Good Luck to your daughter. My miscarriages were also after my 2 year old.

[Boozybird]

well done you for doing the work yourself - so sad we can't rely on the government to keep us healthy!  I'm sure it's not cost effective in the long run but hey ho!

How will having a thyroid problem affect your child (when!) born? best wishes

[Hidden in reply to Boozybird]

I don't think it will if it under control. There are many thyroid mums with healthy babies.

[Zoz1]

Massive congratulations on your pregnancy, this is so great to read. It's horrible that you had to deal with all that and not right that you had to fight so hard but well done for pushing for it x

[Ruthi]

Well done you! 

It might be worth your while going gluten free. There are lots of stories on here about antibodies going down on a GF diet. And although your thyroid was coping OK its certainly a good thing to reduce antibodies as far as you can.

[Hidden]

See my latest post about a possible miscarriage   follow me on about trying to conceive with thyroid antibodies. Getting there need to increase dose for next time.

rainbowbabyhopes.wordpress....

[Zoz1 in reply to Hidden]

So sorry to read this, don't give up and don't write anything off until you know for sure x