APS specialist referral & thyroid results

[Hollyhughes]

Good afternoon everyone

I hope you are all having a lovely weekend,

It’s been 5 weeks since my last miscarriage and just over a week ago I received a letter from my doctor with a referral to Professor Lesley Regans clinic at St Mary’s. Everything I have read states how superb the team of specialists are there but I’ve also read that getting an nhs referral appt there can be difficult. Does anyone have any experience of this? Is the waiting time really long? Should I just consider going private? Dr Shehata & also Dr Thum at the Lister Clinic have been highly recommended too.

I’m slightly concerned I need APS treatment outside of pregnancy too (my doc had previously said not - as my only symptom was pregnancy loss) but I’ve become more aware of other symptoms such as frequent headaches, brain fog and poor circulation in my hands & feet which I had previously put down to other things.

Lastly, I just got my results back from medichecks on the thyroid check ultra vit.

My ferritin level is borderline - 13.4 ug/L (range is 13-150) so needs lots of improvement through diet & supplementation (I currently take floradix’s liquid iron - any other recommendations on supps & in general would be much appreciated)

active b12 is 61.3 pmol/L (range is 37.5-188) - I feel like I should get this a bit higher even though it’s in range?

Thyroid:

TSH: 2.12 miU/L (range: 0.27 - 4.2 R)

Free T3: 5.23 pmol/L (range: 3.1 - 6.8 R)

FREE THYROXINE: 12.1 pmol/L (range: 12 - 22)

THYROGLOBULIN ANTIBODY is <10 (range: <115)

THYROID PEROXIDASE ANTIBODIES is <9 (range: <34)

Medichecks doc said all in range and fine but the free thyroxine is borderline. All others well within range so is a lower level of free thyroxine something to worry about on it’s own or only when combined with one of the other thyroid tests that come back out of range?

I’ll take this all to my doc of course but any guidance or experience would be great.

Thank you & have a lovely day.

X

[MaryF Administrator]

Hi, I use Spatone Iron, (liquid sachets) very gentle, and if your Iron is low your Thyroid does struggle to work well, did you test your Folate? If that is lower end of range that is tied in with B12 levels dropping. Regarding your results, I do suggest you also join Thyroid UK on here and load up your results, I do that at times with mine, that way you get scrutiny of your results from the Administrators on there. I do also take B complex with Folate, all the various doctors who i see know what I take and how much. Did you look at your vitamin D also? I am not a Thyroid expert but I am guessing your Thyroid is beginning to struggle, however your low levels of Iron may be impacting it. MaryF

[Hollyhughes in reply to MaryF]

Hi Mary

Thank you - I’ll try spatone. I did think was it the low iron levels impacting. Will also join Thyroid UK on here - thank you for the tip. Folate is ok at >19.8 (> 3.89 R) And Vit D at 93 (50 - 175 R) so could be better. Thank you x

[MaryF Administrator in reply to Hollyhughes]

Also, just realised I did not answer your questions about specialists. Personally I had great care on the NHS through pregnancy and beyond, however later on, I did also add in a private specialist and saw Prof Hughes himself when I started to struggle again, especially as I was seronegative for a while, not now, but seeing him really helped. If you look through our list of specialists under 'pinned posts' over on the right hand side, some of them also do private clinics, also several on the charity website: ghic.world/ MaryF

[Hollyhughes in reply to MaryF]

Thanks Mary, I’ve been referred to Lesley Regans clinic and she’s on the list. Although I’ve not heard anything since receiving the referral letter so will chase up, x

[MaryF Administrator in reply to Hollyhughes]

Great news, let us know how it goes. MaryF

[Hollyhughes]

So sorry for the delay in replying. I was struck down by a nasty chest infection. My Folate is ok at >19.8 (> 3.89 R) so actually- is the only result at the higher end of the scale - is that odd as my B12 level needs improving? And Vit D is at 93 (50 - 175 R) so could be better. So need to massively improve iron level (I’m taking 2 spatone sachets a day) and work on increasing vit d and b12 levels. I’ve got a docs appt tomorrow so will discuss all then. I suffer from acid reflux but not aware of any absorption issues - I have started to move my diet towards gluten free though anyway from an APS perspective.

Is it strange that just FT4 is borderline and not any of the other thyroid tests?

Thank you x

[Hollyhughes]

Thank you for all your advice. Not currently on thyroid replacement. I’ll see what doc says tomorrow- a lot to cover. Not totally gluten free yet - will remain that way - as you say - if I manage to get the doc to agree to testing for coliac - def seem to be having some absorption issues so hopefully she’ll agree x