Feeling a bit down about my thyroid/meds

[KatyMac]

Diagnosed in October 2023 with subclinical hypothyroidism started on 25 levothyroxine

Went up to 50 in Feb, had bad side effects so changed to another brand

Inbthe summer I saw the gp and said I didn't feel much better and they write to the hospital who said well if she isn't any better come off the levothyroxine- the gp didn't feel that would help so I stayed on 50

Stayed there until September when my results showed over medicated

Then in December they were undermedicated So they upped me to 62.5

8 weeks later still under medicated & waiting to see what the GP says

But I'm just so cold and tired and fed up with it all

Will it ever level out or will it be swings and roundabouts forever

honestly, it took 2 years and gradually increasing to 125 a day before I felt better. I was then overtreated and went down gradually before settling on 100 a day and have now been stable for years.

In all honesty, I never felt quite right until I found an endo willing to treat me with T3 (and eventually Armour Thyroid). I've been stable on a combination of Armour and Levo for about 10 years now.

I suppose its only 15 months but my results were bad for 2 years before that

I'm paying for a private specialist in a few weeks and also paying for some additional blood tests (not thyroid)
I've been saving up for ages

Not sure I feel better this morning but I need to carry on

health anxiety OP; I have 25 years of levothyroxine, on it or not it, no difference only in bloods. TBH 50% of the population are probably on it. I have part of the thyroid removed and have way worse problems before anyone starts on the chronic fatigue/low B12/Low iron checking shite.

Sorry if this is a daft question but do you have Hashimotos? If so, then regardless of meds and levels, you will likely still feel symptomatic if you haven't found the triggers.
You can try following an autoimmune protocol diet, which is really focused on anti inflammatory foods. Things like lentils are particularly bad for this. Anyway, I might be totally off the mark in which case please ignore 😊

I have Hashimotos, if you are feeling very bad OP, more than likely it is hormonal HRT menopause related.

I was TPO negative in 21 (years before my supposed thyroid issues) and they won't check again- do they change or it it a straight yes or no

Worked today, and I'm pooped! I spend at least 2 days a week in bed

The motto indoor family is spend money not spoons

@KatyMac did you see the specialist?

Yes and she gave my GP a shopping list of blood tests (by email)

I wentbi yesterday and they said 'oh were we supposed to order the blood tests' so I had a blood test yesterday

About half are back and ok so I just have to wait for the others

Hope get the correct medication / dose and feel on top of the world soon ❤

I was diagnosed nearly 16 years ago and have not been stable at all. Every blood test my dose changes.
I finally got an endocrinologist referral and am on atrial of 25mcg level of levothyroxine & 5mcg of Liothyronine every other day & 50mcg levothyroxine the other. My trial check should’ve been May 2024 but 19 appointments were cancelled. I ended up just on Levo for a good few months until the consultant got the GP to prescribe it. The GP then mocked that up for a further 6 months & I’ve been on the trial again for around 6 months. A blood test done 3 months ago had my gp telling me I needed to increase my Levo but I said I’m waiting to discuss it with the endocrinologist. 3 further cancelled appointments & I’m due to see him tomorrow so hoping that doesn’t get cancelled.

I’ve never felt like me since diagnosis & I’ve had all other levels checked and was put on b12 injections for pernicious anaemia but again the gp has mucked up those doses when needed so I started doing them myself.

I stopped 18 months ago & am wanting my levels checked again soon as my levels from the injections should have gone in a few more months.

im now post menopause & im thinking a lot of my symptoms were caused by that but two HRT’s haven’t helped everything just sleep & condition of hair & nails. I’m awaiting a third HRT.

Im also thinking I could’ve been depressed for years as my GP did once want to put me on anti depressants, I was ‘I’ve nothing to be depressed about’ so refused. I’ve recently learnt you don’t need to have a bad situation to become depressed & lots of my symptoms match it so I’m speaking to the GP about that too.

it’s not right that I’ve not had energy, motivation, interest, desire, motivation, libido etc for so long. I’m determined to get to the root cause & treated!

I’m sorry you’ve had such a rough time getting the correct diagnoses @ZokaluseK73, what a mess. 💐

I don’t know anything about Liothyronine, but 25mcg and 50mcg of Levothyroxine every other day sound like such low doses to me, they may not be touching the sides of the problem. I’ve been on 125mcg daily for several years, I was started at 50mcg in my 30’s but that was soon increased as it really wasn’t enough.

Thanks.

I was started on 25mcg in 2009 after my second child. I’ve been on as high as 125mcg and everything in between.

I’ve asked for endo referral for at least 10 years & only got it it as I was in hospital with palpations in 2021 & they did a tonne of tests. They said all was good bar my thyroid & I needed a different medication. It took 2 years to get my gp to sort the referral. I don’t feel the current trial is working as intended.

Hi.
Could I ask how you got levels checked what did they do for you to diagnose. My GP only do T3 and another but I ve been told it's not enough to diagnose and should be doing a full thyroid profile - think tsh, T3, T4 - maybe more but they will only do one. She is convinced I need thyroid medication as she gets and I have v similar symptoms to her.
I don't know how to progress or whether worse going private to see if I can get diagnosis. I feel exhausted battling with closed door. I'm peri menopausal so that doesn't help either. Xx

Just back from the endo. Very nice lady I’ve not seen before.

We are doing a trial of dropping levothyroxine & lyothyronine (sp?) and having booods in December then seeing her 2 weeks later to discuss. She said if I start to feel terrible bring the blood test forwards.

She said there are lots of new tests now along with more knowledge & it could be that mine was just post birth.

She suggest I look at my PA diagnosis again too.

Also go on a lower dose of HRT due to my very petite size & see if it helps over 6 months with no headache.

All of my conditions have overlapping symptoms so it’s about finally pinning down the cause & getting it treated. I feel she listened to me & we are finally on the path of doing that!

Really feel for you. I'm hypo too and find it swings up and down, never normal. Seeing an endocrinologist is like asking for a heart transplant these days.

I'm on 100 mg of levo but feel too tired to leave the house most days. I hope you level off soon.