My Story for anyone who may be interested

[Opposite]

Good afternoon,

I haven't posted in a long time and thought I owed the forum an update! Please feel free to ignore if this isn't of interest - I am quite well at the moment thank you.

When I came here for help, I was desperate, suffering brain fog and memory loss, and had absolutely no idea how to navigate all this. Here is my story so far...

(I believe this all started around 5 years previously, in 2018-ish. This is when the symptoms began)

Symptoms:

Weight gain

Hair loss

Fatigue

Brain fog

Memory loss

Excessive sweating & heat intolerance

Palpitations

Insomnia

Anxiety

Decreased sense of smell

No libido

Restless leg syndrome

Sore, watery eyes

Light sensitivity

In October 2023, my thyroid levels were tested and I was found to be dangerously hyperthyroid / overactive. Due to administrative errors, I wasn't treated until after Christmas, when I was diagnosed with Graves disease.

My antibodies:

TPOab = 246 (0-34)

TRab = 1.5 (0-3.3)

According to this forum, this proves Hashimotos Thyroiditis, not Graves. I have never managed to convince my Endo of this, and have settled on a compromise of:

'Well, whatever we call it, it's autoimmune and you're Hyperthyroid'.

This wouldn't work for everyone but I am okay with this. I no longer care what we call it, as long as I am being treated, and feel well.

I took Carbimazole for a few months and my thyroid dropped below range. So I stopped it (against the advice of the Endo). I had all vitamin levels tested privately, and found myself to be deficient in a LOT. So, I decided to focus on bringing those in range. I also took Propranolol for about 6 months, to stop the palpitations.

Unfortunately, all the B complexes I tried made me very ill. I still havent worked out why but it seems I cannot take high quantities of B vits. After much trial and error, I have found a formula that works well for me for now.

My vitamin levels are all now in range, my thyroid has been stable and in range for nearly 6 months, and I feel better than I have in years.

I am currently taking:

- Now Selenium 200mg

- Pregnacare Multivitamins

- Psyllium Husk with probiotic 4000mg

- New Leaf Magnesium Complex 2000mg

I also drink elecrolytes daily, as I have found staying hydrated helps, and drinking too much water without electrolytes gives me cystitis.

I am not pregnant but please believe me when I tell you I experimented a lot, and the pregnancy vitamins are the only way I have been able to take everything I need without side effects. As I was lacking in folate and iron, these work for me. They aren't generally recommended if you are not.

I'm monitoring with private blood tests for the vitamin levels, and quarterly thyroid function tests from the Endo. I know I need to be careful not to overdo selenium or iron, in particular, as both can be dangerous.

I am now also under the care of an Ophthalmologist and diagnosed with moderate Thyroid Eye Disease (TED) in both eyes.

I use Hylo night gel every morning and night. This has helped considerably. Eye drops do nothing for me. Steroids made me feel sick. I take ibuprofen when the swelling is bad. Hot and cold eye masks also provide some relief when they're sore. Ultimately, there's not a lot that can be done until the 'active' phase has passed, and I think I will be left with baggy eyelids forever.

I know this is a journey and it is far from over. I suspect I will eventually become Hypo, as my antibodies suggest Hashis. But for now, I feel good.

All my symptoms are slowly fading. I am back at work full-time after months off at the start. I even got a promotion in December! My hair is thickening somewhat. I am developing much healthier eating habits, losing weight slowly, and enjoy some daily exercise again now. I no longer need sleeping tablets every night (I take them sporadically when needed), and have even come off my antidepressants. My libido returned, and my Endocrinologist said we may be able to begin trying for a baby at some point this year (I had been trying before all this with no success, and then was told getting pregnant would likely cause a heart-attack when diagnosed).

Overall, my quality of life has improved drastically and i'm so grateful. The NHS care has been far from perfect - but a combination of that, advice from here, and private blood testing, has allowed me to take charge of my health.

I hope this helps someone, somewhere, who is facing a similar struggle. Thank you to all those who have taken the time to advise me along the way.

[TiggerMe Ambassador]

So good of you to come back and share your journey 🤗 we all find this so helpful and inspiring as no single journey is the same but hopefully there is improvement possible for everybody and feeling empowered enough to self advocate is a key step

Onward and upwards 😁

[Opposite in reply to TiggerMe]

Thank you! This forum was so helpful for me when things were bad.

Best of luck to you in your journey X

[Regenallotment Ambassador]

Good work!

Well done on monitoring, I was about to jump in and warn about Selenium in the long term but I see you have that covered.

Looking forward to hearing more updates as things improve

[Opposite in reply to Regenallotment]

Thank you so much! 🙂

[Buddy195 Administrator]

Thankyou for sharing & I wish you well. I was advised by my TED specialist ophthalmologist to drop to 100ug selenium once eye symptoms stabilise, so would suggest you do this when you feel able.

[Opposite in reply to Buddy195]

Thank you. I will remain on the high dose for as long as possible, as it seems to be helping the TED - but I'm monitoring my levels to ensure I don't go too high 🙂

[FallingInReverse]

What a great story for hope and setting expectations for those earlier in the journey. In the beginning we all feel like “I can’t wait another 6-8 weeks.” But as we get into it, it does take time, but we do get better (maybe not 100% perfect, but “better.”)

This forum is a life-saver! Thanks for coming back to share your update!

[Opposite]

It certainly takes time!

The first few months after diagnosis were some of the worst of my life but there is light at the end of the tunnel 🙃 thank you!

[LaurieLee]

Hi, you may have problems with certain supplements because of filler and binders which many people have problems with. I now only use British Supplements which don’t have any crap in them.

[Opposite in reply to LaurieLee]

Thank you - that's good to know!