The scandal of our massively under diagnosed hypothyroidism...

[rosepoet]

Underactive thyroid affects 10x as many women as men!
My pharmacist spoke of all those 40-ish Victorian women who went into declines, lying on sofas= because they had undiagnosed under-active thyroid!

MASSIVELY undiagnosed, still.
So much entirely avoidable suffering.
The list of symptoms is impressive...
Feeling out of sorts?
Constantly fatigued/drowsy, having afternoon naps?
Weight gain?
Digestive issues? Bloating?
Constipation?
Cold sensitivity
Body hair loss?
Stiffness, joint pain.
Dry eyes?
Frequent urination?
Muscle aches and tenderness?
Forgetfulness?
Mind fog?
Dry skin, dry hair.
Yoyo weight.
Disturbed sleep?
Acne flair ups?
Fingernails that flatten round your fingertips?
These are ALL symptoms of Hypothyroidism- which can lead to Hashimoto's thyroiditis. It is hugely under-diagnosed. Perhaps because it affects 10 times as many women as men...''It's your age.' 'Women's problems.'...
It creeps up on you. You need to ask your doctor for a FULL PANEL of tests, including checking whether you have thyroid anti-bodies.
I kept going to my doctor and he did the same single test on my TSH. It is not enough!
This should be a huge scandal.

That's awful and your endo is shit.

I would bet money that the radioiodine treatment killed off your thyroid function and you can no longer convert properly, so have excess T4 from the levo. I suspect if you can get a private appointment with the clinic @bonfirebash has listed above, they will say you absolutely need some T3.

@bonfirebash

Glad to hear you had a good appointment!

Thanks @user2155340308842 - it's good to know I'm not going mad. I'm going to dig out my previous letters with my levels on to compare but I'm sure they've always both been high and that's why she said they were 'complex'.

@bonfirebash Thanks for the link. I've also found one relatively near to me so I'll have a look at both and get something booked.

I agree with @user2155340308842. That definitely sounds like a conversion issue.

This is simply nonsense, gps are not led by labs. You can order tsh, t3 and free t4. Why are you providing this misinformation?

Same I have all the symptoms, I get my thyroid checked every year but it’s only the basic test. Also runs in my family

Thank you.
I've just realised that when I do bloods, they always ask for T3 to be checked but yet I've never been told the results of those. I'm going to email the consultant's secretary today and see if she can tell me what they are. I'm guessing - after reading round - that that this will be because of the reluctance to prescribe T3 to people, so if they don't tell me, I can't query it?

I feel for those of you with Hypothyroidism I was over treated for Hyperthyroidism TSH went from 0.01 to 8.9, T3 27.2 to 1.6 & T4 150 to 6.
The endo phoned me directly and said stop the Carbimazole immediately.
I have swung back to slightly over active and feel so much better!
While Hypo I felt like death warmed up and developed central sleep apnoea which was terrifying, I also put on weight if I so much looked at food.
I have been lucky really though as my GP is quite happy for me to talk directly to my endo and be guided by her & my tests always include T3 & T4.

I can't see why its not taken more seriously by others GP's though as if treated properly would save the NHS massively in the long term?

I’ve just done one of the private mail order advanced thyroid blood tests, which supposedly looks at T3 and T4. Cost £89, which I could ill afford, but I just want a proper check.

(If you can call it a proper check when it involves me flailing around in my bedroom, which is no way a sterile medical environment, trying to squeeze enough blood out of my pinpricked finger and doing star jumps to increase the flow)

Have sent it off by post. Not sure what I’m hoping for tbh.

@WtP

I can't see why its not taken more seriously by others GP's though as if treated properly would save the NHS massively in the long term?

Yes, that's part of what's so scandalous about it. The litany of long-term health problems caused by poorly or under-treated thyroid issues will be much more expensive to the NHS across a patient's lifetime than proper testing and treatment with a slightly more expensive medication would ever add up to.

So can someone diagnose me? I am hypothyroid , on 125mg. I am falling asleep a lot , very little energy, feel heavy and listless. What is wrong with me? Thyroid tests say I am over medicated.

Diagnosis & treatment for hypothyroidism has always been difficult, I feel. I had lots of symptoms & my bloods were out of range & the GP was very reluctant to give me Levothyroxine. When I asked what would happen if I didn't have it, the GP replied " oh, you won't be able to move off the sofa!" 🤷‍♀️ It has been & still is a huge battle & 20 years on I'm still massively tired, feel cold & I can't lose weight!

Oh man. I work in this field.

I could talk for hours on this one!!!! So true!,

It needs someone to champion it, rather like Dr Louise Newson is doing for menopause.

They start low and increase slowly as to do otherwise will stress the heart out.

I’ve got virtually all of those symptoms but am on thyroxine and apparently slightly over medicated. Anyone got any ideas why?

What are the test results that show you are over-medicated? Your description sounds under-medicated.

Yes it does but very time I have a blood test they say I’m taking too much. I cut it down and feel like I’m dying after a few weeks.

I know I sound like a broken record, but I would suspect a conversion issue. If you aren't converting effectively, you end up with excess T4 that your body can't make use of, but not enough of the active version, T3. Have they tested your T3?

I’ll ask the doctor.

What is the solution?

To find a doctor who will really listen to your symptoms, care about your quality of life and be open minded enough to admit that the one and done approach - the belief that levothyroxine works for everyone forever - is wrong. Unfortunately, it's easier said than done.

One thing you can do is to compile some research to bring to your doctor if you think they might be willing to look at it. A quick google found this, which is quite balanced and has links to some reputable studies.

https://www.palomahealth.com/learn/t3-treatment-hypothyroidism

My poor 11 year old DD was diagnosed with hypothyroidism in January of this year. It came about as we were seeing the Paediatrician about something else (she has Ehlers-Danlos Syndrome among other things) I'd said I'd like some bloods done as she had never ever had any and was constantly exhausted. The Paediatrician (who is a nice chap overall) still gave me the "Silly Mummy thinks there is something sinister going on, but we will do some bloods anyway" Obviously, I was right and there was something up after all. I am so done with the attitude though. Silly woman and her silly daughter. Silly women overall. Doesn't help that my daughter is Autistic and has selective mutism so just sits looking terrified while I speak on her behalf. This just all adds to the feeling that they think I probably make shit up or exaggerate.

The Paediatrician says that once her Thyroxine meds are right, he will discharge to the care of the GP. I'm going to ask a few questions at next appt about antibodies etc as so far, he has only said that it's possibly Hashimoto's. To add insult to injury, latest bloods show that she is now anaemic so the GP is running more bloods to check B12, Ferritin etc as well as putting her on iron tablets.

School don't give a shiny shite either.

Who would be a woman, eh?

My doctor is useless. I’ve already changed surgeries once . I get a telephone call in which I am either referred on or given a blood test.
I have twice been for investigations for different things and the notes were never fed back to the doctor. Not that she would read them anyway.
a sample my husband gave was ‘lost’ with no explanation or apology. I had blood poisoning last year and had to diagnose it myself after going to the doctor twice . I asked for my T3 to be tested as apparently it never has been. The doctor says she doesn’t think the lab will do it but she’ll ‘try’. Likewise vitamin D. I was just told ‘everyone is vitamin d deficient’. I don’t qualify to be tested even though there’s something clearly very wrong.

Unfortunately this is an American site and the only doctor listed is in America!

Yes, but there are links to studies you can read for information and/or print out or send to your doctor if it might be helpful.

I would also be quite firm with your GP and say that you find it very surprising she's allowing the lab to dictate her patient care.