I was born without a Thyroid in the 80s. There seem to be very little information out there about how best to treat.
I'm treated as a person with an underactive thyroid but I feel there should be more to it.
I was on eltroxin all my life and only started on naturethroid a month ago. Started with one grain split in 2 gradually increasing every 10 days. I'm now on 2 and 1/2 grain. I don't feel any difference yet. Is this normal?
Any body who was born without a thyroid has some insights? Do vitamin or food supplements work as well as the one with an underactive thyroid?
What medication worked best? NDT or combo synthetic T4/ T3?
Many thanks in advance.
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Hypomadness80
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Thank you for your post and for your 'thyroid history' which was interesting although I'm sorry you were born without a thyroid gland.
I am pleased that you had successful pregnancies and have three chidren.
Members will respond when they read your post as some do have congenital hypo.
I have my thyroid gland but couldn't improve on levothyroxine. I felt much better on T4/T3 and recovered when I took T3 alone.
Some hints - just in case they are helpful to you.
All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take it afterwards. This helps keep the TSH at its highest as that seems to be all doctors look at and could alter our dose.
A Full Thyroid Function Test (rarely tested) is:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Always get a print-out of your results, with the ranges. Ranges are important as labs differ and enables members to comment upon them.
The aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges.
Vitamins/minerals also have to be optimal, B12, Vit D, iron, ferritin and folate.
Thank you for your kind reply. It's such a journey to find a good endocrinologist and a doctor who would know enough about it! Looking forward to some replies.
I am currently taking vitamin D as the Dr pointed out that I was low. He didn't mention the other vitamins but I actually just bought thyroid support supplement. It's called wild nutrition. It has vitamins b12, 1 and 2. Iodine, vit d and more. I'll see how that goes.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
That's great infos slow dragon! Thank you! I've only started questioning the iodine for a silly reason really... Every time I eat a shellfish platter or Oysters... I feel in a great mood and positive for a couple of days after that. That made me think that I could need iodine supplement.
I leave in Ireland, and as far as I'm aware, there's only 2 Drs who actually know about Thyroid and would prescribe other medication than Levothyroxine.
The Naturethroid is not quite working yet, and reading about the change of formulas accross all the NDTs makes me believe that It would be safer to go synthetic T3 and back to levo.
I've only.started to take my vitamin supplement so I'll see how that goes.
Hypomadness80, I have a good friend with congenital hypothyroid, so I am always on the look out for others on the forum. It is only mentioned quite rarely, so your best bet to find posts about it may be to use the search function.
My friend has a similar story to you, in that he did well on Levothyroxine/T4 for about 30 years, but at that point got sick and couldn't cope without T3. I've noticed a similar thing happening to others who are hypo for other reasons.
Another thing I found with my friend was he was very unprepared for becoming sick as an adult, and not at all knowledgeable about thyroid. He'd always been told his illness was very trivial and wouldn't impact his life. But once he became more aware he realised it had actually had quite a big impact throughout his life and that he'd been hypo at other times but not realised, and sometimes really struggled but not known why. I definitely recommend staying and reading the forum and learning more about thyroid blood tests, how to dose and monitor your hormone levels,vitamins, and how to be in control of your own health.
I have had a thyroidectomy because of cancer, and I can definitely relate to most that is written about thyroid being about Hashimotos thyoid disease. It is not always exactly the same as those of us with no thyroid, but there is a lot of overlap.
Thanks Silver avocado. It was the same. I thought I was ok for 30 years, but after the birth of my first child, something changed but it got much worth after the birth of my twins 3 years ago. It's interesting that your friend only needs a small dose of T3. I take it its the synthetic version? As mentioned, I've only started taking naturethroid a month ago, but so far no effect whatsoever. I am thinking that synthetic T3 might work better for me
Yes, this is synthetic T3. He swapped out some of the T4 for T3. He's not loads better than he was, but he hasn't been dilligent about adjusting his dose.
Both T4+ T3 (synthetics) or NDT are good ways to add some T3 to your dose. I think you should spend several months on one to get a good feel for if it suits you, and adjust fully until your blood tests look good, ideally about 6 months. Its too easy to give up after a short time, it takes the body a long time to settle and can feel worse at first.
If you've got low vitamins ideally work on those and get some improvement before you make a decision whether you like the NDT. Vitamins need to be optimal for your body to make full use of thyroid hormone.
wow it is so good to read this reply i think i am going to be looking into all of this more. some of this is similar to my experience - also i have been on levothyroxine but didnt know you even could supliment in the different ranges.
I am over 40 and all of this is like a foreign language - i wanted to contact my paeds specialist but shes retired so no can do.
Hi CH Warrior. I'm terribly sorry. I was going through my posts and realised you posted to me and I have never replied!
How are you dealing with it all? Do you find you need the same treatment than other thyroid disease? I'm currently on 125 t4 and 25mcg t3. My vitamins are not all optimal yet but improving. Especially the D3.
If you can share some wisdom that would be great. Look after yourself.
Unfortunately it doesn't seem like a lot of people have experience with congenital hypothyroidism. All I can share is my experience. Read my journey through my posts when you get a chance.
What I can say for my own experience is synthetic T3, a good b complex plus extra B12, Vitamin D and folate helped me an awful lot. I am way better now that I was 2 years ago. Hopefully we can help each other. All the best
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