Hypothyroidism

[Mehrz]

Anybody with worst untreated symptoms of hypothyroidism please share your symptoms...

It will be helpful.. before diagnosis

[Wetsuiter]

there is a list of symptoms on TUK site

thyroiduk.org/signs-symptom...

[greygoose]

There are over 300 known symptoms of hypothyroidism. But, you don't have to have them all to qualify. Everyone has their own individual set of symptoms, so knowing what other people have isn't helpful.

The main problem is that hypo symptoms are nonspecific - meaning that they could all be due to 'something else' - which is a phrase you often hear from doctors who know nothing about symptoms. The most common symptoms are: weight-gain, hair-loss, depression, fatigue. And, most hypos have at least one of those.

[M1ssmolly]

Dry, brittle hair and hair loss was the worst for me. Weight gain and dry itchy legs and lethargy affected me a lot too.

Greygoose has it right. So many symptoms. You get to know somehow as you go along what really affects you.

[Billyboy2u]

I was in a zombie state. I sat still for hours at a time. I wouldn’t eat or drink. I simply dint want to or thought needed to.

Then the colour framed from my face but still I felt fine myself. Every few hours I would get up and walk around the garden to show I was alright but unaware to myself I was walking ver very slow, so it made me look even worse After not eating for a day or two. I found it easier to not eat it seemed I’d found the on off switch. My weight dropped 3 stone in 3 weeks just sitting there. I attempted to ride my bike with our grandson but fell off a few times before we even set off. That was the end of that day. About 5 weeks In I was starting to think out loud talk to someone who wasn’t there yet I was having a conversation with, It wasn’t long after my partner phoned the hospital help line 10 minutes later the ambulance pulled up outside. I must have looked bad as before examining me he said I think your going for a ride in my ambulance.

[Hidden]

It took me at least 1 year of horrendous symptoms to get a blood test from my GP and a diagnosis of hypothyroidism - and then a further 2 years, and eventually paying a private consultant endocrinologist, to get my hypothyroidism under control and under his direction for around 15 years I was taking 200mcg levo per day. Also have been on HRT for 15 plus years. As soon as this consultant retired I fell into an annual battle with my GP not to alter my meds.

In 2017 I was diagnosed with breast cancer - had surgery and radiotherapy - came off HRT, was prescribed Anasatrazole and then Tamoxien...............and my life became unbearable.

To keep the story short:- Not the BC surgeon, nor the Oncologist took a holistic view of how treatment affects Hypothyroidism: after months of hell, anguish, anxiety, migraines - I made my own decisions - went back on HRT, gave up the chemo prevention drugs and took my chances. At least I can now function. I demanded an appt at the Endo clinic and saw a lovely consultant who supported my decisions - said the relatively high dose of Levo was a long term risk to my bones - which my DEXA scan showed to be in good condition because, he said, the HRT was protecting them. He also said that he saw many patients like me whose symptoms did not reflect the lab tests and they didn’t know why, and it was a Cinderalla area of health with very little funding.

When I told my oncologist that one of the reasons I couldn’t take the chemo prevention drugs was how Tamoxifen interfered with Levothyroxine, he said he would write to my GP and ask for more frequent testing. This just made me die inside because I knew I would be on a merry-go-round of shoulder-shrugging and pointing at the test results - not listening to ME, Much later, he also agreed that I could never take Anastrazole because of severe arthritis.

So, if life gets complicated - you are pretty much on your own.........

[Lovecake in reply to Hidden]

Just want to send you a big hug 🤗

[Hidden in reply to Lovecake]

Aww than you : that had really cheered me up!

[GrowingVeg]

I spent weeks/months fighting tears at work, unable to concentrate or answer questions. I thought I was depressed/stressed. It had been building up for a long time, I wasn't able to get pregnant but I felt to ashamed to seek help. I spent loads of money on vitamins, crystals, herbal teas, creams, potions, mindfulness courses/ apps, therapies of all kinds, accupuncture. I tried to excersize more but didn't have the energy for it, so felt 'lazy'. I worked more and more hours to make up for my inability - around 80h per week. I was litterally falling asleep on my feet as I walked home. I couldn't function outside of work. Everyday was a fight to get out of bed, I woke up at 3-4am everynight worrying. I became suicidal - walking to work and back - having thoughts of drowning myself in the river or jumping under a bus. I stood down from my job, for less responcibility. I took holiday but never felt refreshed. My hair got thinner, (it's already prematurely grey) . My skin was constantly dry and itchy, I had terrible headaches for days. I didn't recognise myself in the mirror. I felt so detached from everything.

I'm not 100% better but things are improving. Since finding out it was Thyroid I feel hopeful, and less guilty/ashamed for being inadequate. My mood is better, I rest when I need to. I have come to accept things will improve, it it takes ages. Reading people's experiences help me to feel so much better about things. It feels good to me explain it too..thanks for asking.

[SlowDragon Administrator]

Looking at your previous posts

Hypothyroidism can develop after breast cancer treatment

thyroid.org/patient-thyroid...

healthline.com/health/thyro...

Hypothyroidism can creep slowly up on you, leading to low vitamin levels as direct result. Gut function becomes impaired and low stomach acid common

Low B12 symptoms are common, mixed in with hypothyroid symptoms

b12deficiency.info/signs-an...

thyroiduk.org/signs-symptom...

Essential to test vitamin D, folate and ferritin too, as well as B12

ALWAYS get actual results and ranges

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[vocalEK in reply to SlowDragon]

That makes me feel better about refusing the offer of tamoxifen after I had a surgical biopsy of an Atypical Ductal Hyperplasia. Although ADH is not cancer per se, it increases risks to develop B.C. I found the risk calculator and determined that increasing my risk of BC by two percentage points was not worth the hell I would go through on tamoxifen, based on what going off HRT for 6 months did to me about 15 years ago.

[Thyroid17]

Extreme fatigue (difficulty lifting empty kettle), sitting upright, walking exhausting. Brain fog, often with speech altered (intending to say one word but saying another similar word), slower thought processes. Hair loss, head and eyebrows. Chronic constipation. Heart palpitations occasionally. Dry thickened skin, brittle splitting nails (often splitting into two layers). Gastrointestinal upset. Problems with balance. Complete loss of libido. Some beard growth? (female). Dry eyes/Blurry vision? Reduced senses, hearing etc. Enlarged and scalloped tongue. Dental/gum issues. Significant weight gain, particularly legs. Discovery of enlarged heart and heart valve problems. Extreme lethargy (no doubt others I've forgot to mention).

GP at the time said all of above 'was all in my head', changed GP and got diagnosed, received treatment, got my life back - still have fluctuating symptoms but was able to return to work. I can now enjoy work although it gets hard occasionally during a flare up.

[Thyroid17 in reply to Thyroid17]

Can't believe I forgot to mention my puffy moon face! don't miss that

[Mehrz in reply to Thyroid17]

Right side of my face is more puffy then the left it feels like right side is big than the left.

Plus some tingling or numbness also

[Thyroid17 in reply to Mehrz]

I am not qualified to advise in any way. On a purely personal level, in addition to the well discussed Via D, I personally find B12 helps with my experience with episodes of numbness/tingling and a quality magnesium supplement (see advice on ThyroidUK health unlocked) for muscular aches. It definitely sounds like you need to press GP for action on this to confirm cause. Not sure about unsymmetrical puffiness hence - press GP but puffy face could indicate your thyroid is very undermedicated. Best to follow this up. Good Luck.

[Thyroid17 in reply to Thyroid17]

Vit (vitamin) D - it should read.

[vocalEK in reply to Thyroid17]

Well your thyroid gland is in your neck -- that's close to your head.

[Batty1]

What issues are you having?