Need encouragement :(: Hey all, I'm in a pit... - Thyroid UK

Thyroid UK

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Need encouragement :(

Incoguto profile image
Incoguto
•9 Replies

Hey all,

I'm in a pit 🙃 since November haven't been able to go to the shop, I manage some walks around the block and do my kettlebells in the morning.

My main issue is fatigue, dizziness, dehydration (lowish sodium). I also get hypo symptoms like water retention, I'm 9 kgs overweight, my hair is brittle and falling out, my cholesterol is high, I look swollen and puffy at times, anxiety, low mood, I can't focus and looking for words etc.

Once I take my thyroid meds, 3-4 hours later it all unleashes.

I have a fairly strong mind and been battling this for 6 years (I was actually very well for the first 6 years when diagnosed in 2012, meds were working, specifically Armour).

I've had so many tests, worked on a myriad of things - iron infusion (didn't lift my crushing fatigue or didn't stop hairloss), estrogen prog patch, trying most meds multiple NDTs and synthetics, had several cortisol salivary and blood tests, acth, aldosterone, rt3 etc. Tried lowering more Armour and adding more T3, which increased my cortisol a lot. I was feeling both good and terrible on it, but with high cortisol and higher BP is had to back down as symptoms were uncomfortable.

So here I am back on a dose from November, which makes me feel terrible and I'm questioning my sanity.

I am scheduled for pituitary MRI, but knowing my luck that won't show anything at all.

I need to keep going and keep trying, but I'm so do tired of all this and I want this Hashimoto to go and f*** itself, pardon my French.

Thank you for listening x

I'm a 39 Yr old female, not working at the moment, but savings will run out at some point, so need to get back on my feet.

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Incoguto
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FallingInReverse profile image
FallingInReverse

Hi! Just popping in to give you some encouragement. You are not alone, and you are doing incredibly well checking off all the boxes as you try to find what’s wrong and how to fix it.

Although you are methodical, and my top of mind thoughts likely won’t be helpful, here goes.

Out of curiosity, have you explored these non-thyroid possibilities: diabetes or cardiovascular issues. Have you had echocardiograms, stress tests, etc?

There’s just something about your symptoms that seem so unfamiliar to thyroid… I know that sounds vague, I’m not stating it as fact. And I know you are researching/testing a lot.

So just curious. And wanted to make sure you knew that we are with you as you soldier on! It sucks but what choice do we have!

Incoguto profile image
Incoguto in reply to FallingInReverse

Thank you so much 🤗Oh I appreciate all these thoughts! I went my cardiologist twice last year, done two echo's, perfect heart, palps due to underactive thyroid. Diabetes - my sugar fluctuates, but it's never really high. I've noticed it gets worse when my dose is lower. I wanted to get glucose and insulin test done, but I am unable to go to the lab at the moment with this dizziness etc.

Yeah these symptoms are weird.

Thank you, I'm a trooper, need to keep going, just so tired and because of that demotivated and low.

Hectorsmum2 profile image
Hectorsmum2

Do you track your pulse and temp? I wouldnt have a clue what the right dose for me in thyroid hormones was if I didnt use my pulse as a guide. Blood tests are just not accurate enough. It has taken a long time to work out that when I have a resting pulse of around 76, I feel better and lose weight. Thyroid illness is so damned difficault to treat.

Incoguto profile image
Incoguto in reply to Hectorsmum2

Yes, I do, indeed. And I agree, blood tests don't say much to me anymore. I wear Garmin watch so I keep an eye on my pulse. It is extremely difficult, I agree. All I know and feel is that I'm hypo

Sunsetzzs profile image
Sunsetzzs

Hey Incoguto, I understand your frustration! I’ve been dealing with a myriad of symptoms for about 20 years or so. I’ve found one of the biggest problems for me has been trusting the doctors here in the US to know what they’re doing. When I started researching online and reading books to better understand hypothyroidism and Hashimoto’s, I realized all the things I’ve been doing wrong with their treatments, and some of the meds (unrelated) that they’ve put me on which had horrible side effects and just muddied the help I was seeking for low thyroid. Mostly I think it’s just that the doctors don’t understand the illness. Lol, I’ve actually told a few that, and you can just imagine how that went 😃

Research everything- symptoms, medicines, and vitamins and minerals! (If you haven’t already). Additionally, I’ve found the a wealth of information reading the posts here that others make. It’s also shown me that I am not alone in this- which it sometimes feels like in my only little circle of people here.

I’m sorry to learn that nothing has worked this far, but don’t give up! And no reason to question your sanity- there are many of us on similar paths- you are not alone!

Incoguto profile image
Incoguto in reply to Sunsetzzs

Thank you so much 🤗 yes, I do tend to question my sanity, whether it is all in my head or not, but then I look at me and I know it isn't. I am so sorry you've also gone through it x

I am in the middle of scans, MRIs ans CTs, so it's all a but intense

Sunsetzzs profile image
Sunsetzzs in reply to Incoguto

Those tests are not fun- best wishes to you for answers and a plan to get to feeling better - Gentle hugs!

Catlady73 profile image
Catlady73

if you’ve had COVID , don’t rule out long COVID or fibromyalgia…. Hope you get answers soon x

Incoguto profile image
Incoguto in reply to Catlady73

Thank you catlady73🤗never had covid and this whole thing started in 2017, but I'm in the middle of being tested for cushinds syndrome or disease x

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