Anyone else with underactive thyroid & Hashimotos disease...

[Haaaaaland]

Do you consider yourself to have a chronic illness?
I also have other thyroid related issues like palmoplantar pustular psoriasis as well as the chronic fatigue and generally feeling like crap 24/7.

I used to have overactive thyroid until they “treated” it. Then it went under active. I’ve never felt well since then.

Yes I've had it 10 years now and yes it's a chronic autoimmune disease. It's not a nice thing, I've never felt well since then. Disrupted my sleep no end and I'm always tired.

How long have you had it OP?

Yes, I was diagnosed 9 years ago. I'm managing it, but not able to live like I used to. My energy is pretty low and even cleaning the house causes days of pain in my arms and legs. I have to live a much simpler, quieter life.

My dc has it. She’s not able to live a normal life.

Yes, I was born without one, it’s always been classed as an chronic autoimmune disease as far as I know. It’s not pleasant to have even with medication.

I have it, but - to offer an optimistic view - I feel fine! I've had it over a decade and I have plenty of energy, am a healthy weight etc. So, it doesn't have to change your life for the worse.

I do try to take care of myself - eat well, get outside every day, exercise, drink minimal alcohol. But really, once your TSH is in range (I like mine to be at the lower end of the range), you should feel OK.

Some people have trouble converting the tablets (T4 I think) to the active form (T3), so it might be worth investigating that.

My thyroid is basically nonfunctional now (not Hashimoto's but another, rarer condition). It's pretty well managed though, so not sure if it actively affects my life - not like I have an alternative baseline with an active thyroid for comparison.

I developed hashimotos after my first child
It caused some secondary infertility problems until my levels were right. I’m fine now I’m on the right dose of thyroxine (monitored carefully during pregnancy).

I was diagnosed in my 20s and bounced back completely to normal, but if I was diagnosed now in my late 40s, I’m not sure I would think the same, so many aches/pains/peri going on that wouldn’t vanish with starting treatment.

I've been diagnosed a few years. (Edit to say underactive thyroid about 5yrs and Hashimotos 2)

I was asking because I don't think people around me understand how much it affects me and how I feel/my energy levels. I take the levo and bloodtests say I am in range but I feel like death warmed up most days.

Im just mentally exhausted of feeling physically exhausted.

I also have a lot of other MH/ND issues and Im just fed up of it all.

If you feel like death you are not on the correct medication dose. Find another doctor who will treat your symptoms, not the number on a chart.

there are great resources online to help you advocate for yourself…have a quick google

I was diagnosed in 2020. Once I got the correct dose of Levothyroxine, I started to feel better and now I don’t really ever think about it. I do sometimes think it could be linked with some other symptoms that flare up now and then when i’m run down or stressed but it doesn’t stop me living a normal life. I don’t consider myself as having a chronic illness, no, although I suppose strictly speaking it is one.

I've been to my GP. They run bloods. Bloods are 'good' so they won't refer me because my mumbers are un range so I wouldnt be seen

"Find another Dr"
Have you tried to even get an appointment lately? I don't have a choice in Drs. I don't even know who there are at my GPs now. A non emergency appointment like this takes weeks to get.

I totally understand how you feel @Haaaaaland
I've had Hashimotos for about 25 + years and feel constantly tired, lacking in energy and I have lots of aches & pains. I've had countless blood tests over the years which mysteriously fall into the normal range. I did push to get referred to a specialist about 10 years ago and he was dreadful. His comment was "isn't everyone tired?"

I do think I possibly don't convert T4 to T3 but trying to find a Dr that prescribes T3 is difficult & the cost each month for private prescriptions is prohibitive. I feel hypothyroidism is one of those conditions that's been forgotten about & it hasn't been researched in recent years. It needs a revisit with evidence based medicine to see what can be done to relieve these symptoms.

I have hypothyroidism and hashimotos. I also have loads of other conditions so not sure which one is making me feel like crap but I'm tired all the time. I get plenty of sleep but just wake up exhausted

Had Hashimoto's diagnosed since aged 21/22. It's horrible. I live half a life each day. Now in my 40s. The dose has been altered back and forth for years, makes no difference. Bloods always come back "normal". No, I don't feel normal, thanks. It's a chronic condition. I feel wiped out most days. I hear you OP ❤️

Same as previous poster. Waking up exhausted. It's all I have ever known. It's crap.

I was diagnosed with Hashimoto’s in 2012 and apart from taking levothyroxine every night it does not affect my life in any way and I don’t feel like I have a chronic illness at all. I have normal energy levels and I did struggle with weight until I started on mounjaro. Sorry to hear of people struggling so badly with this, it sounds like how I felt before I started Levothyroxine..

My husband was recently diagnosed with hypothyroidism and I have a few questions:

• How did people get tested for Hashimotos?
• what dose of Levothyroxine are you on? He’s on 50mg which seems low.
• Have you tried the sorts of stuff recommended by Isabella Wentz? She seems to be strongly suggesting cutting our wheat, but it’s such a massive conmittment!

Thanks for any answers. And sorry for those of you struggling ao much with this.

My mum has had a dreadful time with her thyroid. She read the books by Paul Robinson (I think it was him) and actually contacted him. She now takes T3 and no T4. She has sourced this from abroad. She was already on a low dose of T3 through the nhs endocrine consultant but they have stopped prescribing it so was unable to get the dose increased. Anyway she is like a different person! For years she thought she had CFS, turns out it was unable to convert T4

My dc was tested for thyroid when referred to the CFS/me nhs service as she had dropped out of school due to severe lack of energy (was basically bed bound and slept all day)

the CFS/me service want other stuff ruled out first which prods GPs into doing some other tests.

she’s on a complicated dose of I think 125 three days 150 four days. We saw the consultant once a month for about nine months to get the dose titrated

never heard of Isabella wentz but cutting out wheat won’t solve a thyroid problem. It might help with general wellness

Blood test, 175 but I started on a lower dose he will keep having blood tests until they get the correct dose then will have 6monthly/yearly blood tests going forward. No

Thanks all. I’ll look up Paul Robinson and it seems 50 is probably a v low dose.

Was overactive to start then under with Hashimoto’s after birth of first daughter. For 3 years struggled to get back to normal. Depression, mood, aches and pains. Started exercising and then found Dr Barry Peatfield. Thought he was a quack initially but he really got it (having it himself) Supplement with Vit C, selenium, zinc, vit b and drink licorice tea. I think the good Dr is no longer with us but you should be able to find his book.

Hashis now for 25 years self treat and feel much better than I ever did on Levothyroxine
I buy Non dessicated thyroxine from abroad expensive but only thing that keeps me well, it has Levothyroxine in it but also liothyronine and I think it’s from pigs thyroid
( which I am led to believe it close to human thyroid) anyhoo whatever it is it gave me my life back I can tell when it’s wearing off but titrate it so take morning and afternoon without it I would be exhausted all the time.
I am also gluten free as I also had stomach issues when I became under active the two are linked and it reduces the antibodies that attack the thyroid.

I was told when I became unwell you’ll have to become your own medical expert as the care is so poor for auto immune illnesses there is one drug ( Levo) one dosage and a one size fits all approach to Hashimoto’s disease My endo “ monitors “ me but cannot prescribe it on the NHS which is appalling there’s more treatment for athletes foot than a complicated auto immune illnesses that affects mainly woman
but maybe it’s the last part of my sentence that explains why that is the case.

Another note is when they tell you your bloods are “ within the normal range “ this is just so misleading , the range is far too wide I think it was made up many years ago and is probably outdated but no new research has been done for donkeys years to change it, many countries have a much smaller range so many of us would be under their range. To make it worse lots places UK use different ranges which doesn’t help
To feel better your blood tests for T4 and T 3 and pretty much vit B12 folate and other vitamins should always be in the upper third of the range ask your GP for a copy and check yourself do not be dismissed as “your bloods are in the normal range “ they would say that even if you crawled in to the surgery!