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.

Thanks, that's helpful. I certainly don't want to shout at my doctor over something he can't help!
I'm not GP-bashing. My GP is a lovely guy.
I wonder if women could get better advice from women GPs?
Given it is so poorly diagnosed and treated, and all the scary consequences of inadequate treatment, women need to push to get better treatment.

I have all those symptoms except hair and nails!

But my results are
Serum TSH level 4.10 mIU/L [0.27 - 4.2]
Serum free T4 level 12.3 pmol/L [12.0 - 22.0]

So I guess it's not that for me

Yeah it’s shit, I was diagnosed aged 22 after putting on 3 strobe in about 3 months and my energy levels snd mental health almost grinding to a halt. Took me two years of symptoms and tests until the thyroid showed not in ‘normal ‘ range. Over the years I’ve worked out that I feel much betrrr when my tsh us 1-2. I now actually buy my Levo in Spain so I can adjust my dosage myself. I am pretty on my own wirh it I feel, medically no one is keeping an eye on me.

It's BS to say the GP has no say in what tests are run, that the lab decides. If the GP orders a full panel then the lab runs a full panel. Otherwise how did I get a full panel?

As for the idea that GPs can't possibly know everything, I mean they know how to read, they can read the NICE guidelines just like us.

My own GP is amazing but clearly I'm just lucky, and even he can't get me the referral NICE says I should have.

My thyroid packed up when I was pregnant with DS2. My weight INCREASED after I gave birth. I had about 2/3 of your symptoms from your list. I went to GP 3 times in 11 weeks and each time was fobbed off as being a new Mum I might be depressed. I told my GP I am not depressed, I am Ill. Finally he did some blood tests and my thyroid T4 was almost nil and TSH was 28. By this time I'd put on over 17 lbs since giving birth. Then my GP insisted he could only give me 25mg and I had to wait 3 months before re-test. THS was still 24 and I got put up to 50mg but during this 3 months I had felt absolute crap and put on almost another 1 1/2 stone. This pattern went on until eventually I got put on 125mg. This took over a year from when I was first diagnosed. Everything went ok for many years but I never felt as good as I felt before my thyroid packed up and I always felt under medicated. Then when I went through menopause it went haywire. I now have to take 225mg every day. I actually split my life into before I had thyroid problems and after. Before I was a size 8 after a size 18 and I really don't eat a lot and don't even like sweet food.

I was diagnosed with hyperthyroidism due to large nodules. Was pressured to go for the radioactive iodine treatment. I really wish I hadn't. I've gained 5 stone as it made my thyroid underactive and I've had to beg for my 50mg to be increased. I'm now on 75mg but I weigh 20st. My levels are in normal range apparently but why can't our symptoms be taken into account? I felt better when I was overactive.

@dreamingbohemian if I request thyroid function tests, the lab will do TSH and then add T4 and T3 only if the TSH is abnormal. In my area, I can't request a 'full panel' of thyroid function tests. I don't know how you managed to get yours done by your GP, maybe it's different in your area?

That T4 is low and TSH isn't optimal Mine was similar and I got treatment when my TSH went to 8 and my T4 dropped to 10

Also, I wonder when the term 'full panel' for bloods became commonly used, is it an American term? It's not something that I ever hear in real life practice but see it all the time on MN.

The way it works for me is that my GP gives me a form to take to the blood test centre, it specifically says Tsh, T3 and T4 on it. I give it over when the blood is drawn and that's what the lab does. My TSH is normal-ish but they still do the others.

If that's not possible everywhere then I despair, I really do. Women being failed yet again.

My GP used the term, he's Spanish so who knows

@dreamingbohemian

Sending you a pm

Yes look up Mary Shomon she’s a good patient advocate. I learned a lot from her.

I found out when my milk supply shot down at around 4 months, despite everyone saying it can’t be low milk supply nobody could work it out until there was a noticeable goitre and I was diagnosed. All symptoms were the same as postpartum symptoms so nobody took notice. Now that I have had subsequent children I realise how extreme those first symptoms were and far more extreme than normal postpartum.

I got lucky with a knowledgeable Spanish gp who would go by my symptoms and order the ft3. Sadly he left.

i have used medichecks for private bloods and change my meds accordingly as I wasn’t taking any chances during pregnancy esp as I had some early miscarriages. You have to be your own advocate. Thyroid U.K. do some good work but I have learned mostly from Americans.

I think one issue is that for some people, Levo works brilliantly. For some, it works brilliantly for a while and then not so much. And for some, it really doesn't work all that well. And if you fall into the latter two groups, you probably really need some form of active T3 to feel well, but it's incredibly hard getting a doctor - even an endocrinologist in the UK - to prescribe that.

Yes since they bumped up the prices for t3 in the U.K. they refuse to prescribe it, many people source it privately but thyroid uk is working on getting doctors to prescribe it again, they are now prescribing it to those who were already on it before they stopped but not to new patients sadly, due to costs so they lie and tell you levo is enough!

Where I am the nhs endos are all diabetes specialists and not thyroid but talk like they know it all.

@magma33

Yes, but I've never understood this. If they just admitted that a high percentage of thyroid patients would feel much better with a bit of T3, they could surely source it in bulk and drive the price down? My understanding is that it's not a particularly expensive drug to manufacture.

I'm prescribed Armour plus a small amount of levo, which has worked brilliantly for me. I do pay privately for the Armour, however. I have no idea if that would even be possible on the NHS at this point.

Whenever I hear people talking about not feeling well on levo, it makes me want to scream - that person is going to end up costing the NHS so much more across their lifetime than they would if they were properly medicated even if the medication costs more up front.

Yes I agree, I source it online, I mainly did it through pregnancy as I don’t convert t4 well but my symptoms, I have forgotten what is normal and what isn’t.

I was diagnosed with hashimotos after having my 2nd child 23 years ago (my mum had Graves’ disease so it’s in the family), it took about 18 months, but got back to normal levels and feeling ok on 175mcg Levo a day, and stayed ok on that dose for about 10 years. My local hospital trust used to have a “thyroid register” and I was automatically sent a blood form in the post every 3 months, that I could just pop into haematology with, get my bloods taken, then I’d be informed by post of results and if my meds needed adjusting or not. That all stopped about 10 years ago, and if I wanted my levels testing I had to go to gp, who would then request bloods etc. I started feeling crap, so went and got them done, my levels were way off and I was titrated up to 250 levo daily over the next few months, my levels came back into range. Stayed on that dose for a while, then had a panel of routine bloods taken for something or other, thyroids were included, never heard anything so presumed all good, a few months later became really poorly, thought I was having a nervous breakdown, my mind was constantly racing, I was in a constant state of high anxiety, heart constantly pounding, so I went to the gp, who looked at the bloods I’d had taken months before, the thyroid result was there, in red, well into the HYPERthyroid range, so I’d basically been overmedicating for months into a state of thyrotoxicosis. I obviously stopped taking the Levo, was put on beta blockers, and referred to endocrinology, by the time I got my appointment (a few months) I was massively hypothyroid again. My TSH was 98! The consultant couldn’t believe I was walking and talking normally, so I then had to go through the whole titration again, and am now back up to 225mcg daily. Basically when you’re medicated to a “normal” range you’re just left to it, even though with hashimotos (which is the most common thyroid disorder) your thyroid can fluctuate in the amount of hormone it produces, so you really should be tested regularly. Also many people would benefit from being on t3 as well as levo, but the nhs just won’t fund it. It’s a fucking shot show to be honest.

What can be done though? To get change? To be listened to?

Feel like we're screaming into the void!

Place-marking to come back to later - this is me.

That's not true. GPs can request either TSH or a Thyroid Function Test which is TSH and FT4, plus FT3 if TSH is low. I know as I have had this test dozens of times. Whenever a TFT is requested I will receive at least a TSH and FT4 result and sometimes an FT3. Annoying as I am on liothyronine (T3) so have to pay to get my FT3 tested and there seems to be no way to telling the lab to test FT3 every time.

So it's FT3 that the lab "decides" whether to test or not, not FT4.

There's been no GP bashing on this thread that I've seen. The way hypothyroidism is treated in this country is a fucking disgrace and needs highlighting. The problem is much bigger though than just poorly trained GPs.

In some countries a TSH over 3 is sufficient to diagnose hypothyroidism. Your TSH is very high in range and your FT4 very low in range. I would be testing three monthly in I were you.

I was very (and increasingly) ill well before my bloods ticked the right boxes (ie my TSH went over and FT4 under) for a diagnosis and treatment. I tested three monthly privately until I ticked those boxes and then shoved them under the nose of my GP.

Make sure all your thyroid tests are done early in the morning and fasting. TSH is cyclical and higher in early morning and drops during the day.

One of the problems is that women are more likely to be fobbed-off with being “depressed” or hypochondriacs etc.

Another is that lab ranges vary between different health trusts. In some, you need a stupidly high TSH before they even consider you having a problem.

Finally, it has to come down to cost. Being diagnosed with underactive thyroid, and prescribed medication, means that you are now one of the few tick-boxes on a prescription that means you get free medication. Not just your thyroid meds, any medication prescribed is free. I honestly think that this is why it is becoming harder to get a diagnosis.

I was diagnosed 25 years ago but I have nearly every symptom you describe. Every time my bloods are done they tell me I’m taking a bit too much and to cut down the dose slightly. I do that and within weeks I feel like I’m dying . I’m falling asleep constantly, feel like absolute shit and doesn’t help that I’m pre diabetic too. If anyone has any suggestions I would love to hear them!