Anti Phospholipid Syndrome and Thyroid

[Dahliasanddaisies]

Hey all, does anyone else have APS or a knowledge of how it can interact with Thyroid issues? I understand they are both autoimmune conditions.I was diagnosed in 2016 due to miscarriages (no clotting episodes, fingers crossed). I had heparin injections whilst pregnant but told I wouldn't need anything afterwards.

Now I've been retested by GP and still have antibodies, so been referred to Haematology (18 week wait).

I've done lots of reading but crikey it's confusing and I don't know if I should be taking asprin as a precaution or not.

I'm also worried about the link with adrenal insufficiency (my cortisol is low) and my symptoms which are mainly chronic fatigue (as this seems to also be an APS symptom)

Gah, I want to go back to 2016 when u wasn't worried about my health and had never been to hospital!!

[humanbean]

Did you know there is a forum for APS aka Hughes Syndrome on HU?

healthunlocked.com/hughes-s...

...

It's generally true that someone having one autoimmune condition is at greater than normal risk of developing another one. So discovering someone having both APS and thyroid disease wouldn't be that unusual.

[Dahliasanddaisies in reply to humanbean]

Ooh I didn't, thank you!

[diamondgirl902]

Hi I have tested positive twice for APS, 16 weeks apart after suffering a major stroke aged 34.

The tests were carried out at two different hospitals, so I never got a proper diagnosis.

Last year I suffered another two strokes aged 52, and all three tests for APS were negative. They found a PFO (hole in heart) in 2005, but never closed it. Last year that had to check for a PFO as we are now in another county, they don't share records.

I'm sure I'm hypothyroid, though my GP only tests TSH.

My private tests are

2019

FT4 16.8 pmol/L (12 - 23 )

FT3 4.89 pmol/L (3.1 - 6.8 )

2022

FT4 14.3 pmol/L (12 - 23 )

FT3 3.55 pmol/L ( 3.1 - 6.8 )

[Dahliasanddaisies in reply to diamondgirl902]

Oh crikey you poor thing, that sounds horrible! We're you put on blood thinners?

[diamondgirl902 in reply to Dahliasanddaisies]

In 2005 I was put on Clopidogrel. After my 3rd stroke in September I was put on Apixaban

[greygoose in reply to diamondgirl902]

What were your TSH levels with those results? Although it's not a good idea to go by TSH alone, the three readings should be interpreted together, not in isolations. We can't completely discount the evidence of the TSH.

Your Frees were low in 2022 - FT4 20.91% through the range and FT3 only 12.16%! - so if your TSH is also low, then your GP should be referring you to an endo to check out Central Hypo, where the problem lies with the pituitary or the hypothalamus, rather than the thyroid itself.

[diamondgirl902 in reply to greygoose]

2019 TSH 2.95

2022 TSH 3.31

I need to have thyroid tests redone. I need to get a load of private bloods done. My MMA was raised which could be a number of things, I started treating B12 but it could also be Thyroid, kidneys, SIBO .

[greygoose in reply to diamondgirl902]

OK, so those TSH levels do not correspond to your Free levels. They should be higher. This is one of the dangers of diagnosing by the TSH only, it misses a lot of cases of Central Hypo.

So, anyway, do post your results when you get the next lot of blood tests done, and let's have a look.

[diamondgirl902 in reply to greygoose]

Thank you for your feedback. I will be doing private ones soon.

My sons thyroid tests are TSH 2.46, FT4 12.6 and FT3 5.1 antibodies are fine. Are my sons results good? He is 26, battling with depression, anxiety?

[greygoose in reply to diamondgirl902]

Are the ranges the same as for your blood tests?

[diamondgirl902 in reply to greygoose]

Yes they are

[greygoose in reply to diamondgirl902]

TSH 2.46,

FT4 12.6 5.45%

FT3 5.1 54.05%

His FT4 is very low in-range - worse than yours! And his TSH does not reflect that. So, rather looks as if he's got the same pituitary problem as you.

Plus he FT3 is higher in-range than his FT4, which is not normal and suggests his thyroid has been struggling with low TSH for some time.

I think you both need investigation for Central Hypo.

[diamondgirl902 in reply to greygoose]

Thank you very much Greygoose. I'm trying to put all the pieces together, but it's not easy after suffering my strokes.

Would it be advisable to see the GP first? Do these things run in families? What are the symptoms with central hypo?

Thank you once again xx

[greygoose in reply to diamondgirl902]

I doubt your GP has ever heard of Central Hypo. And, in any case, he cannot order the necessary tests to check it out. You need to see an endo.

I'm not aware of CH running in families, no. And the symptoms would be the same as hypo from any other cause, symptoms of low thyroid hormone levels.

[diamondgirl902 in reply to greygoose]

Thank you xx

[diamondgirl902 in reply to greygoose]

Sorry to ask another question, would a low carb diet work? We eat mainly meals prepared from scratch.

[greygoose in reply to diamondgirl902]

Work in what way? What would you expect it to do?

[diamondgirl902 in reply to greygoose]

Perhaps I'm clutching at straws, but I've seen online about doing carnivore diet to help with Thyroid.

To be honest I'm clueless and the GP's leave me with no hope.

[greygoose in reply to diamondgirl902]

I've sent you a PM.

My apologies Dahliasanddaisies for hi-jacking your thread. It was entirely my fault. But, I'm easily distracted and half the time I don't even know who I'm talking to!

[jgelliss in reply to greygoose]

GG your Spot On. Cellular over Labs . That is Never taken into consideration.

[MaryF]

healthunlocked.com/hughes-s... many from TUK use this forum and vice versa.... MaryF

[Star13]

Getting back to Dahliasanddaisies original question (it’s always better to start your own thread rather than taking over someone else’s) - yes I have both APS and Atrophic Thyroiditis, plus Sjogrens Syndrome. It’s often referred to as the “Big Three” as they often run together. Sjogrens can often be misdiagnosed as Fibromyalgia however once you have one autoimmune condition it shouldn’t be too difficult to get properly diagnosed.

I’m sorry to hear you are suffering with fatigue, me too it’s quite a common symptom.

If you can’t wait the 18 weeks to see a heamatologist then I’d advise seeing one privately depending on where you are located. They may advise taking aspirin or something else like Hydroxychloroquine.

What are your thyroid issues? I’d advise posting up your last thyroid test results on here and what medications your on and the dose so we can see if you are getting the right treatment. Also we always advise that you test Vit D, B12, Folate and Ferritin as these must be optimum in order for your thyroid meds to work well.

I’d also recommend you post any APS questions on the APS forum to get the best response.

[Dahliasanddaisies in reply to Star13]

Thanks Star, I will do. I've had some great advice on my thyroid issues, just a waiting game now I've had a dose increase. I appreciate your time to reply

[andula55]

Hi, did look into supplementation with nattokinase? Wishing you all the best. Here an info link : drlamcoaching.com/blog/new-...

[Dahliasanddaisies in reply to andula55]

Interesting thanks!

[SmallBlueThing in reply to Dahliasanddaisies]

Different issue, but I found serrapeptase more effective than nattokinase. Do not use if taking a blood thinner!

[janeroar in reply to andula55]

Have you tried taking Nattokinase? I bought some years ago in the soya bean form but it looked some unappealing I couldn’t bring myself to eat it!

[Tlflom]

ncbi.nlm.nih.gov/pmc/articl...