Just having a little subclinical hypothyroidism rant!!!

[Gidgeclev]

I haven't been on here for a while as I finally got my symptoms taken seriously and Levo prescribed. However I've recently gone downhill (TSH 1.7) and had the dose increased and thought I would just check what the NHS guidance now was. I found this... definitely new since I last looked.

'If an underactive thyroid is not treated

It's unlikely that you'd have many of the later symptoms of an underactive thyroid, because the condition is often identified before more serious symptoms appear.

Later symptoms of an underactive thyroid include:

a low-pitched and hoarse voice

a puffy-looking face

thinned or partly missing eyebrows

a slow heart rate

hearing loss

anaemia'

Unlikely????? I only got treatment because of my low heart rate and switched on cardiologist, and I now have moderate hearing loss and have to wear hearing aids! I'm glad that these symptoms are finally recognised but so angry that for years my thyroid tests always came back as 'normal' and I didn't know enough to question it.

[Sparklingsunshine]

Hi

I think many of us will understand and sympathise with you. So many people are not getting diagnosed and treated in a timely fashion .

Even those of us who have been fortunate enough not to suffer long term, irreversible health problems like you, often have years of ill health, frustration and being made to feel we are attention seeking hypochondriacs before we get diagnosed. Years we'll never get back.

I've never understood why, if thyroid issues are as common as they seem, why it takes so long to get diagnosed and start treatment. Especially as it's a blood test. Its not rocket science.

But then issues that affect women like endometriosis, PCOS etc seem to take years before doctors realise what's wrong. Scarily women are far more likely to die from having a heart attack than men because there's a pervading idea amongst doctors that women don't have them, so the symptoms are ignored.

[shaws in reply to Sparklingsunshine]

The last thing for most a doctors would be to suspect a dysfunctional thyroid gland.

I saw and paid a number of medical professionals but none could diagnose a female who was highly hypothyroid through signs/symptoms. No-one took a blood test.

I didn't get my money refunded either.

I also had a phone call from a GP who told me that T3 converted to T4? I said 'No doctor' that is incorrect.

[Sparklingsunshine in reply to shaws]

Hi its amazing and very worrying, isn't it. Something relatively common, especially for women. It's not like it's bubonic plague or some very rare disease.

[DelicateInput in reply to Sparklingsunshine]

I think a lot of the problem is money. The GP has a budget and if they can get away with not funding something, they will. A GP at my surgery - 20 years ago! - said the practice only takes account of the level of T4 and if that is within the normal range they never put people on treatment. Bear in mind, their normal range can be different from others. Mine was at the bottom of the normal range. Another GP (in 2014) told me my TSH at 6.7 was low and the practice never prescribes medication if the TSH is under 10. I now have a goitre but it did not occur to them that would develop or else they did not care. Maybe they just hope you will go elsewhere.

I saw three consultants privately and had two ops privately decades ago because the NHS never used to treat endometriosis. One of them (the head of their association) told me it was "the scourge of the 20th century". They are living in the ark. Chinese medicine has been treating it for 3,000 years. It is a piddlingly simple thing to understand and treat but the NHS has only just started treating it - incorrectly. It is the same old nonsense - conventional medicine still insists it can only be diagnosed at laparoscopy. By that time, it is too late to treat. It can be headed off years earlier. All that needs to happen is to balance the hormones (which can get unbalanced by stress). Then the period will not be thick and heavy and will not implant. I could write a book about their nonsense.

[Rosebud1955 in reply to DelicateInput]

Sorry to butt in, I have to disagree on one point you made, the issue is not about money, it’s ignorance and lack of empathy. Women are treated differently from men when it comes to medical issues. Women are seen as complainers and hypochondriacs! We’re not taken seriously, all of our complaints are labelled “menopause, stress, depression”. I’ve experienced so much of the substandard treatments by doctors who pledged to “do no harm”. They’re hurting so many of us. When I was suffering horrible fatigue, weight gain, joint pains, headaches, hair loss, the stupid doctor told me that women suffer from these problems regularly. It took two years for me to get diagnosed with thyroid cancer. I had to become hysterical, rude, aggressive etc… I had to demand an ultra sound, then a needle biopsy. Even after the biopsy results stated there was papillary cancer, he wanted me to wait fo another six months to see if the situation would get better. He eventually told me that T 4 was the active hormone. I wish I had found this site prior to my thyroidectomy. I now know how to advocate for myself, thanks to the knowledgeable people on this site. You advice is priceless. I’m not where I want to be yet, but I’m much more knowledgeable than five years ago.Keep up the good works everyone.

Thanks a million!

[DelicateInput in reply to Rosebud1955]

That is an awful experience. Doubtless they are ignorant which I have noticed in specific fields such as infections (and don't we all know that after the virus) but I do think a lot of is money. I think the lack of empathy is on account of money - a lot of doctors ought to be bankers in the City.

Another condition which is not treated properly is osteoporosis. The charity concerned took the government and NHS to the European court and won - they had wanted to prescribe alenodrate only because it is cheap but many people cannot tolerate it, and as a result the NHS was forced to give alternative more expensive drugs. I was a prime candidate for that with many risk factors (eg early menopause, light body weight, endometriosis) and my osteopath said I should have a bone scan because if I did not have osteoporosis she woud eat her hat. The GP refused on the grounds that I had red hair and fair skin so I could manufacture Vit D from sunlight. The scan I had showed dreadful osteoporosis which has reversed with HRT. I also had low Vit D.

I cannot access proper treatment for RA. I waited six months for an NHS appt and meanwhile paid privately. Under NICE rules, you have to try methotrexate first because it is cheap and I am not prepared to do it. I therefore resort to my own remedies. There was no lack of empathy or ignorance in the NHS - just a shortage of money.

Men have difficulties accessing treatment as well, such as for prostate cancer, and this is on the grounds of cost. They ought to be offered an MRI as a screening procedure but they are not and in many cases it is then too late

[SlowDragon Administrator]

Thousands of so say “sub clinical “ thyroid patients have multiple symptoms

hypothyroidmom.com/300-hypo...

stopthethyroidmadness.com/s...

If TSH is over 3 before starting on levothyroxine you’re likely hypothyroid

Median TSH graph in heathy population

healthunlocked.com/thyroidu...

Once on levothyroxine, TSH must always be under 2 ……

most important results are ALWAYS Ft3, followed by Ft4 …Ft3 at least 50-60% through range and Ft4 at least the same if not higher

Typically on levothyroxine TSH is around or (well) under one when adequately treated

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12 too and maintain at OPTIMAL Levels

[DelicateInput]

Hi

I think what doctors (conveniently, it seems) fail to take account of is that a patient may have other conditions which mask the symptoms, eg conditions which might cause a high red blood cell count so there would not be anaemia. On account of that, the patient is denied treatment. I do think cost is a factor.

[Ukie in reply to DelicateInput]

Yes, or they diagnose us with all sorts of other conditions with similar symptoms, rather than admit it’s all caused by the thyroid!

[Diane111 in reply to Ukie]

Yes! I spent 10 years being hypo and hyper with chronic fatigue syndrome. They chalked it up to anxiety and prescribed me antidepressants and sleeping pills. The cfs stopped after the 10 yrs but not the yo-yo thyroid symptoms. Been doing this for 25 yrs before they decided to check my antibodies, both are high.

[DelicateInput]

Glad I came on here - on Slow Dragon's advice, I have got the GP surgery to organise blood tests for T3 and antibodies. I have developed a goitre which they will not admit. After the blood tests, I am going to book an ultrasound scan on the thyroid.

I have been prone to thrush/Candida for over 40 years, and during the initial 14 years I suffered horrendously. It can be controlled by diet (sugar free and low carb, high protein). I nearly jumped in The Thames one Christmas after all the sugary food I had eaten but instead went to the special clinic, who said that it was a particular strain of thrush and all the rubbish I was using did not work on it. All strains can be cleared using medication containing natural bacteria - and after using that over 30 years ago, I could eat what I liked. I am still prone to it but nothing like before. Prior to that I struggled to keep my weight above 7 stone.

I could not understand why women with thyroid abnormalities were prone to thrush but I see that the thyroid controls sugar metabolism. In 2014 I had a corticosteroid injection to relieve pain and swelling from RA and it caused an awful bout of thrush which was far worse than RA or endometriosis or anything else I have had.

I do feel all this is on account of money. In particular, I know it was on account of money with regard to the thyroid issues. When I first had an abnormally raised TSH at the hospital the GP did around ten separate TSH blood tests because he alleged he had to get the dose right It was not a bit of that. The last test slipped under the borderline to be normal and he refused me any treatment for it - that was 20 years ago and I have suffered all this time and now have a goitre.

[Gidgeclev]

Terrible stories from so many women, advocating for yourself is so difficult when you're not feeling good and doctors do still hate you knowing more than they do.

[Diane111 in reply to Gidgeclev]

My GP had to Google TPo that was found on my exam from a rheumatologist. My GP has been a doctor since 1975. He then told me that most people do well with hoshimotos and I don't look like I have it because my face doesn't look like hashis. I guess my TPo of 974+ (range less than 9) isn't good enough he must want to wait until I look a certain way. Every 2 yrs I go hyper, have anxiety symptoms and lose a lot of weight fast and go back to hypo for 2 yrs. He says it's from hyperventilating causing the anxiety symptoms and water weight. And when I'm overweight I'm told to manage my weight. Bunch of nonsense. I also have vitiligo, another autoimmune disease, I get hives, became lactose intolerant and tested positive for ANA. But yet I've waisted 25 yrs of my life doing all of this with no treatment.