I can't stop crying, still think I'm hyper

[Calmspirit1]

I posted here once before about feeling hyper. Only test off was my ft4, (.65-1.44) 1.5Ft3 (2-3.5)2.98. And tsh (.340-4.829) 1.79.

The ft3 is high for me, I know everyone seems to want it high but I'm more comfortable with it at 2.5 and my tsh at 2.4 ish.

I did what someone here told me and lowered the levothyroxine.

I have been on 4(137s) and 3(150s) each week for years. last aug I went to 5(137s) and 2(150s) then in Oct to 6(137s) and 1( 150)

As I changed those pills the numbers kept getting worse instead of better.

By Feb 1st I was no longer sleeping, tremors and shakes, chemical anxiety burning inside me, using bathroom multiple times each day, 2 visits to hospital with tachycardia and arrhythmia.

I have now dropped 31 pounds.

My glucose soared, never had that before and my potassium dropped off the bottom of chart( I read somewhere that can happen with hyper but don't know if it's true)

Week of feb 10th I dropped my pills to s137-m113-t113-w137-t75-f125- s137.

I then saw an endo who said my numbers were in range and ft4 not off enough to matter. He has me taking 125 Monday and Friday and 137 the other days.

I was diagnosed with graves disease in 2017, told my only choice was rai (I was ignorant and knew nothing about thyroid or graves and listened to the Dr. (1 of my life regrets) 2weeks after diagnosis I had rai. 6 weeks later I was hypo and started levothyroxine) the diagnosis came with 10 days on the cardiac ward, in afib with rvr. I responded to no drugs. Heart rate rocked 180s and every day they told me it couldn't continue to survive like that. Finally they shocked it back into rhythm.

I feel like hell, in tears every single day ( I'm not a cryer, I always give the example of how I held Mom as sho took her last breath and 1 tear leaked out. That was all.)

Many days I question if I will survive this. Medical care here is lacking.

I have had just a few changes, the tremors and shakes aren't so bad and last night I slept though I question if it was from total exhaustion.

It's been 4 months of hell. Is there anything I can do besides wait and see?

Thanks so much

CS

[Calmspirit1]

Felt I should add, last year was diagnosed with cancer, went through surgery and radiation. Supposed to be Ned now. That was easy compared to this.

[pennyannie in reply to Calmspirit1]

Can I just ask what cancer were you diagnosed with and what is Ned - even with a typo - I can't guess this and sending a hug or three :

[pennyannie]

Hello Calmspirit :

I'm so sorry you are going through this :

Graves is an Auto Immune Disease for which there is no cure - with stress and anxiety being common triggers -

but after definitive treatment - either RAI thyroid ablation or a thyroidectomy - the symptoms experienced should be minimal and the next problem finding a dose of thyroid hormone replacement tht works well for you.

For some having RAI increases their antibodies and symptoms and a 2nd dose of this toxic substance administered - and for others the thyroid regrows - whilst for others the thyroid takes years and years to become fully disabled -

I have Graves and had RAI thyroid ablation in 2005 and ' fell apart ' for want of a better word around 8 years later when I presume I became increasingly reliant on T4 thyroid hormone replacement -

though my TSH never responded and i was badly under medicated and became very unwell.

So we are looking at an Auto Immune Disease for which there is no cure -

though we do know that stress and anxiety are common triggers and it reads as though you have had your fair share with last years cancer and the loss of your mother - and saying how you never cried - is typical of some one who bottles everything up, internalises everything, overthinks, and pretends to to be strong though dealing with a heart that is broken ?

I think you may do better trying to find a doctor who is happy to treat with both T3 and T4 thyroid hormones -

You must always be dosed and monitored on your Free T3 and Free T4 readings and not a TSH - as your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies on as working well is now broken as your Thyroid has been disabled in situ - and this internal feedback loop open ended as your own power supply from the thyroid dead.

Do you have any readings / ranges for your ferritin, folate, B12 and vitamin D - as if these are not maintained at optimal levels they can compromise your health further than necessary.

I found the most well rounded of all I researched that of Elaine Moore's books and website who is Stateside and does run a forum much like this UK one where members could talk to each other in their zip codes and time zones and recommend thyroid specialists in this speciality.

However Elaine is now ill and I'm not sure if you can still access the forum but it still appears in the sub sections and we need to now go into her website via the archives -

web.archive.org/web/2024120...

[Calmspirit1]

Thanks for your reply. Breast cancer found on routine mammogram. Ned is No Evidense of disease.

I am familiar with Elaine Moore and have had direction from her a couple times years ago. I returned to her site a month or so ago to discover she had closed it. I have purchased all of her books having to do with graves.

I had the RAI back in '17 so really thought I was "over" it all. Hardly ever think of graves except the last 4 months.

Endo assured me my thyroid is not functioning at all. So have you any idea why after many years the level of meds would be too much?

Not new bottles, brand name so same company, always take it the same etc

Thanks

CS

[pennyannie in reply to Calmspirit1]

A fully functioning working throid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

with T3 being around 4 times more powerful than T4 :

Too much T4 for me gave me terrible head pains and lack of cognitive function -

I now take Natural Desiccated Thyroid and find it much ' softer ' on my brain and body -

the leading brand is Stateside Armour and which is derived from pig thyroids, dried and ground down into tablets which contain all the same known hormones as that of the human thyroid gland and I am much improved and no longer have head pain nor find my kettle in the fridge and thinking I 'm dealing with the onset of dementia.

Yes Elaine is now recovering from cancer :

[jgelliss in reply to pennyannie]

Pennyannie I experience the same issue as yourself with T4. When I dose with higher does T4 I have in back of my head headaches. But when I'm low with T4 I get headaches in front of my head. It took me a while to connect these Symptoms.

[SlowDragon Ambassador]

very important to regularly test vitamin D, folate, B12 and ferritin

Exactly what vitamin supplements are you taking

When were vitamin levels last tested

[Calmspirit1 in reply to SlowDragon]

I take nothing except vitamin D drops and the levothyroxine. My vitamin D was tested 4 years ago and it was 23. The folate, b12 and ferritin I don't think have ever been tested.

It's hard to get testing approved here. I see my pcp Tuesday and will ask for the tests but probably they will be denied.

I can get a cbc, metabolic panel or tsh done at a private lab but last year they pulled most other tests including the ft3 saying not without Dr's orders.

Should I be taking supplements in those areas without testing?

Thanks so much

CS

[pennyannie in reply to Calmspirit1]

I need to maintain supplementing all those 4 core strength vitamins and minerals -

Despite now being well on NDT - I now aim for a ferritin at around 100 - folate around 20 - ctive B12 125 ( serum B12 500++ ) and vitamin D up at around 125.

RAI is known to trash vitamins and minerals levels in the body - as you've probably read through Elaine Moore's books and website -

and no thyroid hormone replacement works well until these 4 corner stones of your health are strong, solid and at optimal levels.

[jgelliss in reply to pennyannie]

Ditto. So Very True.

[Alayah80]

have you tried eating a better diet, stop eating at least 3 hours before bed, eat lots of vegetables, get enough omega 3, I take glycine, carnitine, creatine, coQ10,mushrooms, chasteberry for hormones, valerian root, magnesium & gaba for sleep

[SlowDragon Ambassador]

you can test privately in USA

FallingInReverse may be able to give you links

[Indigourchin]

hi Calmspirit1. i can add no helpful advice not being as well versed in medical knowledge as some here but i know i have had crying jags when under medicated , crying at anything and also crying without realising, but mostly just wanted to say im sorry you are having such a difficult time, . so many good people on this forum i hope you will find help x

[YannickWolfe]

Hello Calmspirit; because of RAI im not sure how well this information translates, but with Grave's hyperthyroidism, dry fasting worked really well.