I have CH and honestly it would be nice to hear from others who have it. I've gone decades without ever having met another adult with it. My doctor is good, but I get treated alongside with those with acquired hypothyroidism; he doesn't really seem to know much about CH or he just can't be bothered. CH acts similarly on the body, but there are differences. For example, I am worried about my memory deficits; never great, my memory strikes me as worse than before. I'm wondering if there are CH folks out there who are also worried about issues with memory. What else should I share? I have no thyroid gland. I take 200 mcg of Synthroid. I work full-time. I'm married. No children. Anyway, it would be nice to feel less alone. The treatment for the condition is that bad when compared with other conditions. It would just be nice to feel a little less alone in this way.
[ Added by admin: CH = Congenital Hypothyroidism (has other meanings as well) ]
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Goldfinch23
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Can you please share your latest Free T3 and Free T4 results and ranges with forum members as then we can better explain what might help you manage your symptoms better.
T4 - Synthroid - is basically a pro-hormone and it needs to be converted in the body into T3 the active hormone that runs all your bodily functions from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism- and low T3 can cause a myriad of symptoms.
Since you have no thyroid you must be dosed and monitored on your Free T3 and Free T4 readings and not a TSH seen in isolation - do you have Graves Disease and why you ' lost ' your thyroid ?
It's also essential to maintain core strength vitamins and minerals -
- those of ferritin, folate, B12 and vitamin D - at optimal levels -
to enable the body to better utilise and convert the T4 into T3 within the body.
So, you have no thyroid - cancer? RAI? TT? - and a pituitary problem? And, the result, of course, is that you are hypo. Well, hypo is hypo, whatever the cause. I have no thyroid because it was destroyed by Hashi's. And, I have memory problems, too - I think most hypos do, whatever the cause. But, there are over 300 know symptoms of hypothyroidism, and everyone of us has our own individual symptom list. So, I don't really think yours is different because it's Central hypo - especially not as you don't have a thyroid, anyway. And doctors know nothing about symptoms full stop. They might have heard of fatigue, hair-loss, weight-gain, depression, feeling cold, but that's about it. They have no idea about brain symptoms like memory loss, or anxiety, etc. Or that the brain needs a lot of T3. So, it's not surprising if he doesn't seem very clued up - he isn't!
But, whatever the cause of the hypo, the treatment is the same: Thyroid Hormone Replacement. And whatever the cause, it's essentail to test FT4 and FT3 - although TSH in a case of Central Hypo is irrelevant. So, when did you last have your FT4/3 tested? And what were the results and ranges? If you're on 200 mcg Synthroid and still have symptoms, it's very likely that you're a poor converter. But, if you share your results with us, we'll be able to tell.
To answer the question: I have had congenital hypothyroidism since 9 months of age and the doctor said is basically out of service. ( I was born before the introduction of the heel stick test unfortunately.)
First, I'd like to say, it's so great just to be able to talk about it here and get some advice. I also want to state that I certainly don't believe my case to be in any way unique. I wrote in because my mother has subclinical hypothyroidism as does my brother. She also now has dementia at age 86 , and is in a memory care facility which she said she loathes. If I'm predisposed to dementia I want to make financial plans.
Here comes a question:
I'm wondering if having hypothyroidism and resultant long- memory struggles would it make it more likely for my insurance company to approve a pre-emptive brain scan for me. Has anyone tried to investigate their memory issues to see what else can be done to improve matters? And to see if their insurance company would approve a brain scan and what that scan would be called? If I have the plaque that leads to dementia I want to know now, but I'm 54. I wonder if the insurance company will pay for a test and if I have grounds to press the issue.
My most disturbing lifelong symptom: persistent crappy long- term memory as in bad. Additionally, I have ADHD and dysthymia; I' m sure neither of these help with memory either. That said, I take an SSRI but no ADHD drugs. Luckily, I have an education and can hold down a job (that's right for me... and I've had a lot of interesting experiences on that note). Not everyone has this good fortune.
Before anyone asks or recommends: I do almost anything a person can do to take care of his / her/ their brain. To that end, I also make it my business to take the medication as directed. I wait an hour before eating or drinking anything, and based on peer-reviewed research, I take the brand name Synthroid, not the generic. ( I am not expecting to drift upwards to heaven or win a prize for this; I'm just pre-emptively letting people know I do whatever I can to take care of my brain. )
Here comes another question: I will bring my November 2023 test results to this forum. What are the results needed: T3, T4 TSH, right?
Again, that's for hosting this forum. I feel so good to be able to type this out at the very least and have people on the other end know what I'm talking about! LOL!
Pretty sure these are hypo symptoms. You could very well be under-medicated - most hypos are.
Sorry about the confusion with CH and Central Hypo but we talk a lot about Central Hypo on here, and rarely about Congential Hypo, so it was an understandable mistake.
As to your insurance question, this is a British based charity/forum, so unlikely the majority of members would know about insurance - they have the NHS. And, here in France I have a similar set-up. But we do have quite a few members from the US, so I would suggest that you write a new question asking just that in the title, so that those that know can answer. Not likely many people are going to see it on the end of this thread from yesterday.
The best think you can do for your brain is give it plenty of T3. Brains need a lot of T3 and as I said above, I suspect you're a poor converter.
What are the results needed: T3, T4 TSH, right?
Yes, but it has to be Free T4 and Free T3, not Total or UPtake or anything else. Only the Free versions give you the results you need to see a clear picture.
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Please would you read this letter I have wrote to my gp...
Could I be hypo if no symptoms aside from lethargy and depression?
I am calling out on those who have experience of taking Seaweed on top of thyroxine and would like to hear your views!...
A Poem I would like to share about how I have been feeling - Endocrinologist chose not to read it!
Were you on The Pill, from 60-70's. and now have Hashi's or autoimmune disease. I was and do! 
