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Thyroid UK
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Congenital hypothyroidism linked to adverse pregnancy outcomes

Some papers have me pulling my hair out. How can it be that the medical profession ends up with this statement levelled against them:

Adverse outcomes were probably due to inadequate treatment...

Of course inadequate treatment is likely to result in adverse outcomes. Why would anyone think otherwise? The question is: Why were any of the mothers left with inadequate treatment? I'd put a fat pile of money on it not being because the mothers didn't want adequate treatment, and in at least some cases probably struggled to try to achieve that.

And what a crass statement about highlighting the benefits. Are they not plain enough? Are not the consequences of inadequate treatment plain enough? The highlighting needs to be on how to achieve adequate treatment. On who bears the responsibility for not providing that adequate treatment which is so obviously needed.

Congenital hypothyroidism linked to adverse pregnancy outcomes

“Despite the small number of subjects included in the analysis, our results suggest that the adequate management of hypothyroidism decreases the risk of adverse pregnancy outcomes,” the researchers wrote. “These novel findings for patients with [congenital hypothyroidism] highlight the need for more appropriate thyroid disease management, particularly during the first two trimesters of pregnancy, and for vigilant monitoring and adherence to treatment, to decrease the impact of the disease on both mother and child. Future prospective studies focusing on active management to prevent treatment inadequacy during pregnancy should highlight the potential benefits of such management in terms of maternal and fetal outcomes.”

healio.com/endocrinology/th...

Rod

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novel findings? you couldn't make it up...

"adherence to treatment" - blaming the patient?...

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If there is any element of failure to adhere, I'd strongly suspect that the mother has not had the appropriate advice, guidance and support.

We have certainly had some hypothyroid pregnant women here absolutely desperate to get their medication adjusted (albeit, some might not have been congenital).

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Rod, we have a member who is frantic and struggling to get support in Sweden. She has high antibodies and when she told her GP her TSH is too high for a pregnant women she was told to take it up with maternity but they won't see her for another month. Eventually GP agreed to retest in 2 weeks. She's very distressed and frightened.

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That's exactly what poked me in the eye reading this. How ancient is this document?

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Shame shame double shame! It's like we are 100 years behind all the time. Endocrinology has not really progressed, has it? Except for diabetes.

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My thoughts exactly!

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No wonder your blood boils when you read statements like that. We know that the treatment is inadequate for thousands, pregnant or wanting to be, or otherwise but not a blind bit of notice is taken by doctors or endocrinologists,

It's appalling that the knowledge of doctors appears to be nil.

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They don't pay attention. They weren't in class when they shoulda been or they talked the whole time with their buddies.

Honestly, I don't know how half of them passed their exams.

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Gabkad, I asked my neighbour's son how much time was spent teaching thyroid. He said they spent about 8 weeks on the whole endocrine system. I got the impression that thyroid got 10 minutes.

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Endocrinology had so much promise and then it went pfffft.

What peeves me is the inability of endos to communicate. To explain things. And to do thorough testing to correlate what else may be happening that causes problems. Thyroid is complicated.

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But their mantra is 'easy to diagnose, easy to treat!' My a***!!!

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They obviously weren't tested on the thyroid!

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Rod, I have congenital hypothyroidism. In the last 18months I've had two miscarriages both at only 5 weeks gestation (this could be bad luck). With my last, I got back into the system, seeing an endocrinologist and also had one referral to fertility dr. Both said that since my condition is 'managed' it has no significance to my pregnancies. I've been seeing endo's all year whilst they played with my dosages, only to then return me to my original dose of 150mcg that I've been on since I was 13 yrs old , I'm now 40.

I am totally exhausted and disappointed by the medical profession. Their lack of interest in research data indicating that there are other treatment protocols available, yet they prefer to settle with their dogmatic outdated attitude to our care. I'm over it all. I'm tired of the whole system.

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Whenever I post things like this, I am all too aware that some who read it will have their suffering brought back to the forefront of their minds.

It makes me seeth. I want to say "show me your doctors and I'll make damned sure they are in no state to have offspring". We all know that is emotional response - but where is their emotional response?

It is getting to the point where I am quite sure that many endos, along with most other medics, read up fewer papers and training documents related to thyroid than quite a number of patients. And, as you imply, even if they did most of it would be ignored.

Rod

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Hi Amyflo,

I am so sorry you have had appalling care. You will have to take things into your hands and you will have better care than you have received at present. Especially with you having congenital hypo, if undertreated you just must have been unwell your whole life.

It is very distressing too, you have miscarried twice already and still no care is forthcoming from the NHS.

You could copy Rod's post and send a copy to your GP and Endocrinologist's department.

They don't study or keep up-to-date with research, don't know the very basics. Just go by the TSH alone and don't care that the patient has very weary symptoms. Especially if you've never had good health.

If you haven't had a recent thyroid hormone blood test ask for these to be done. It's the very least your GP should do:-

thyroiduk.org.uk/tuk/testin...

also ask for Vitamin B12, Vitamin D, iron, ferritin and folate as these are usually low.

Don't take your medication on the morning of the blood test (leave at least 24 hours between dose and test) take it afterwards.

They only way is forward now, with you taking charge but keep your GP in the loop and hopefully he/she can rise to the challenge of treating you optimally so you can carry to full-term. Most important, you want to feel healthy with no clinical symptoms. That may mean GP increasing your dose by adding some T3 to your T4 or prescribing an alternative. The worst offender is the guidelines laid down by those who should know better/but don't.

Best wishes

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I have congenital atrophy thyroid (they say, how do they know its congenital as 49 years when found on a scan... yep, due to symptoms).

Endo disinterested & I have to say he didn't even want to acknowledge until I insisted he looked at my specialist scan.

I had a few minor pregnancies problems & I remember before being askew if I had problems getting pregnant...I never asked why.

My Endo is diabetes specialist, may he just doesn't have the knowledge & therefore I wasn't a patient he wanted??!.

X

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Rod, speaking of pulling your hair out, in healio is a short note that Bianco was appointed to ATA's board of directors as President elect. He was one of the authors on ATA's 2014 treatment guidelines.

healio.com/hematology-oncol...

Of all the people that should understand the importance of T3 he should be at the top of the list. I keep wondering if he is ever going to really take a stand. He has a short CME course at 'Medpage Today' which is from Jan this year and is the same presentation he did at a non-mainstream conference, raising some eyebrows.

cme.medpagetoday.com/RUSH/H...

I keep hoping that some day he will actually speak out. He has written two papers in favor of considering T3 but then he contributed to the Guidelines. His presentation is quite good if you've never watched it. You will notice one of the course objectives is "Use combination therapy with levothyroxine and liothyronine in appropriate patients." PR

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(Sticks hand in the air, waving madly!) This is SO me! Now aged 57, diagnosed with hypothyroidism at six months. Had 4 pregnancies. First pregnancy ended in miscarriage at 7 weeks in UK. Told ‘it happens’; didn’t think to question hypothyroidism. Second pregnancy overseas at 36 weeks discovered baby had hydrocephalus, delivered by c-sect at 38 weeks to avoid stress on head. Asked if hypothyroidism at fault, told ‘no’.

Third pregnancy overseas ended in miscarriage at 7 weeks, asked about hypothyroidism, told ‘no’. As sister in law (married to hubby’s brother) had loss with twins, asked specialist in UK if any genetics involved his side, told ‘no’. Fourth (and last) pregnancy ended in tubal abortion. Asked about hypothyroidism, told ‘no’. At that point now aged 36, decided me and my body had had enough, so had sterilisation done. Mourned my losses and ever thankful for my daughter, but sad to read that I could have been helped if not for medical ignorance/arrogance, and that so many suffer needlessly still. I never forget my lost babies, but I discovered an inner strength to fight for both my surviving daughter and myself when needed. Having found this group has given me the knowledge and understanding to stand up for myself even more.

Some day common sense will prevail with the medical community; until then we have each other and Health Unlocked!

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I can’t edit my response...server error...just wanted to say that having typed this in the wee hours and then re read three hours later, I should clarify the last paragraph as the ‘each other’ being all of us on HU, and not just my daughter and I! x

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