My mother and sister suffered with under active thyroid for years ( sister on levo tablets) and seems to be stable on them. I have had various issues with health over the years but always tested in normal range until 2015 when it was under active. Dr declined to treat this until a second under active result but subsequent blood tests were back in normal range. All efforts to get any sort of trial period of medication failed. Health began to deteriorate in following years and muscles began to fail. I decided on a private DNA test for Dio2 as Drs still unsympathetic. DNA result shows both thyroid genes are flawed and advice from the lab was t4/t3 combination.My GP will not consider this course of action as not convinced it will help. She may 'consider an endocrinologist ' in due course.
Has anyone had a similar experience? All I want is to feel better.
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Wickety
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Thanks for your experiences, I'm really fed up of trying to get any of the practice drs to understand - the NHS figures say all normal range and for my practice that's where it ends. I'm considering a private route to see if I can get t4/t3 and pay for it. This would be for a trial to see if my condition improves. If that fails I may have to resort to changing GPS but mine are in a 'hub' and I'd have to travel a few miles to get out of that. Regards
Sorry, upon reflection I think my post was a bit disheartening and as Slowdragon says, my GP (s) are especially clueless. That does not mean all of them are as bad.
It is worth trying another GP in the practice. Sometimes if you get levo privately prescribed and feel better then the Gp may be inclined to carry on prescribing. But definitely try and get an antibody profile. That adds more string to your bow.
Hi, I do not have those details from my medical records. I do know GP classed a previous under active thyroid diagnosis from a blood test. I also know that my creatine kinase levels was about 4 times higher than it should be which suggests muscle damage was taking place. Despite trying to get some positive progress from drs over the years I suppose I was like a lot of patients and did not create any fuss. I found out about Dio2 by chance, much like this forum.Regards
You are legally entitled to copies of your previous test results
ask for online access to medical records and blood test results
Or ask receptionist for printed copies of test results
Going forward
Get full thyroid and vitamin testing done
Frequently symptoms can significantly improve by improving low vitamin levels as first step
If you have autoimmune thyroid disease confirmed by high thyroid antibodies (or ultrasound scan of thyroid) getting coeliac blood test done BEFORE considering trial on strictly gluten free diet and/or possibly dairy free
Hi Slow Dragon, You clearly have lots of knowledge on this. Thank you for the advice. I will start on some multi vitamins pending other tests and outcome of GPS decision on endocrinologist.
Do you know if that Dio2 result could be enough to prove my thyroid system needs some help in converting the hormone into useable enough levels to improve my health? I felt it may be conclusive enough for the GP but obviously not. These genes have been defective since birth. Maybe there is still rather a way to go before I get sorted out! Regards
Thanks for that, I looked at the link and understand now. Maybe one question - would it be any use taking some form of natural thyroid replacement - if so what and best place to obtain it. Thanks again
come back with new post once you get copies previous test results and ranges done via GP
See exactly what has been tested and what results are
Then request/insist GP test anything missing
And if last thyroid test was more than 8 weeks ago …..you need retesting
ALWAYS test thyroid levels early morning, ideally around 9am for highest TSH
NHS only tests and treats vitamin deficiencies
You may need to supplement to bring to GOOD levels
But always test first…..essential to find out just how low/deficient before start improving
Being very deficient is indicative of just how hypothyroid patient might be
Optimal vitamin levels are
Vitamin D at least over 80nmol minimum
Serum B12 at least over 500
Folate and ferritin at least half way through range
Also …..low /deficient vitamin levels tend to lower TSH….making it harder to get diagnosed….as frequently GP only tests TSH (which is completely useless)
My story is similar to yours..."within range"....no matter how ill I felt, nor my many symptoms.
A consultant endo, who was a professor, ignored all of my symptoms, was very annoyed that I took An "A4 sheet of paper listing them all"...even complained to my GP about that!
This man, who was also a lead Professor in medical ethics, told me to carry a hot water bottle when I felt cold.... even though I'd told him I already had to do that, use diuretics for fluid retention... even though I'd told him they didn't move the fluid...... I could go on, but you get the picture?
Finally, from gaining confidence through finding this forum, and reading and learning what my foggy brain could take in, I asked my GP what he thought was wrong with me if he totally ignored my blood results? I was desperate and feeling very ill.
He said, "We were convinced you are hypothyroid"... and offered me a trial of levo.
My journey back to feeling better and more myself had begun.
Is it a smooth journey? At times, once I was on a high enough dose of levo, I felt much better. And for several years managed to cope pretty well, despite the low T3.
But, and it's a big BUT, I only realised just how much I'd been putting up with feeling less than my true self...living "under optimum" for a long time, when I inadvertently took 200mcg of levo for 11 days, And only realised the day after my blood tests....when I put the dose back down to 125mcg.
When my blood test results came back my T4 was very over range, my TSH was its usual 0.02, and wonder of wonders, my T3 was the highest it had ever been at 5.3....proof positive to me that my body was craving T3.
Why am I telling you all of this? In the hopes there's something in here that is helpful to you.
And because I have listened and actioned the advice I've been given here. I'm addressing the low ferritin, made sure my Vit D and K2 are on my daily supplement taking list, have changed the B vit I was previously taking to the Thorne Basic B as recommended on here and ensured I don't take my magnesium and zinc supplements at the same time.
And in general am already feeling the benefit...I shall get current blood test results early this coming week to see what, if anything has also benefitted AND I KNOW without any doubt, that my body needs T3.
I've been to see an endo from the ThyroidUK list, who is local to the area where I live. When he looked at my chart of all of my TSH, T4 and T3 results, he could clearly see the pattern, and offered me a trial of NDT. I have to pay for this, but that period of feeling "just like myself" with the better, much much better T3 tells me this is something that I need to do for myself.
Hi, thanks for the response. I'm going to get figures from previous tests plus new up to date tests and try to take it from there. Regards and best wishes for the future
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AND I KNOW without any doubt, that my body needs T3.
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