Dear all. After taking advice from various ones on this site to have a gene test, I was finally prescribed liothyronine by an endocrinologist.( 1x 3 times a day) that's all the advice he gave me btw. With no follow up.
Anyway I paid for a gene test and found I had a faulty gene from both parents and did,t convert t4 to t3 successfully. I slowly worked up to taking my 3 tablets at regular intervals. As I knew it wasn't right to suddenly start with 3.
I felt better but still struggled a bit with fatigue, but it was manageable. I coped quite well.
In January I contracted COVID or at least I think, as I became very ill 3 days after a person who 2 days later tested positive for it, gave me a hug.
Since then I haven't been well with sore throat dizziness chronic fatigue and headaches. The doctor says it's post viral.
Now I've asked for a thyroid blood test because I wonder if my thyroid has been damaged in some way as I also get pain in the thyroid area sometimes which goes into my ears.
I had a conversation with the head of the laboratory once and she said the usual blood tests for those who are on levo, aren't accurate for those on liothyronine.
So is it worth bothering with a blood test please? If anyone can give me some advice I would be so grateful. I'm worried now that if it shows it's too much in my system they may stop me having some of the tablets. It was difficult to get them in the first place.
Thank you
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Everdean
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Why not just get full thyroid and vitamin testing done yourself privately
That’s what thousands of members on here do
How much levothyroxine and how much T3 are you taking
Do you always get same brand levothyroxine/T3
Do you mean you are on 3 x 5mcg T3 ?
And how much levothyroxine?
How long have you been on this dose?
Or did you mean are you only taking T3 ?
If so, how much
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or T3 ……or 6-8 weeks after Covid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
Presumably you also take vitamin supplements?
If taking any supplements that contain biotin, stop these a week before all blood tests as biotin can falsely affect test results
If testing iron and ferritin and taking iron supplements, stop these a week before test.
List of private testing options and money off codes
Thank you Red Dragon. I'm on 1x20 mcg t3 X3 times a day. For over a year. Can't work out exactly when I reached it but at some point I started it in divided doses hoping they would work better. Finally got to that dose after months of increasing slowly.
I think you're right. A private test would be better also vitamins. Thank you.
Looking back in my very confusing diary. Always brain fogged. I have struggled with and without t3.
Would t4 be of any use. When the endo prescribed 3xt3. He got the Dr to text me to ask if I wanted them or 2xt3 and some t4. I chose the t3 only. But now another go says endo wanted me to have the t4 option. I don't understand.
It's probably the GO that wants you to have the T4 option. Very few doctors are happy with T3 only. If the endo wanted you on T4+T3, he wouldn't have given you the choice.
Yes, it’s definitely worth bothering with blood tests no matter what meds we are taking because this allows evaluation of our thyroid hormone levels.
Because you are medicating T3 they should test FT3 levels but ensure it gets requested on the blood form along with TSH & FT4.
It sounds as if you have some Hashi activity reoccurring post COVID so ask for thyroid antibodies TPOAb & TGAb to be tested also. Once we have Hashi it doesn’t go away but it would be good to confirm your symptoms are thyroid related and not something else.
Are you gluten free? Have you had nutrients & iron tested recently?
Thanks for that advice radd. Yes I am gluten free for years I'm coeliac.I've ordered a vitamin and mineral test. Will do a private thyroid test now after advice from you all. I have Hashimotos. So will the antibodies be different if covid has affected my thyroid? Thankyou
No, you would be testing for the same thyroid antibodies, TPOAb & TGAb.
This isn't needed as you already have a Hashi diagnosis but given your symptoms post COVID that emulate a Hashi attack and COVID's known association with thyroid issues if it were me I would test just to establish symptom causes.
I'd look up Paul Robinson. He has written several books about being on T3 only. His first book is called Living with T3 only. He has a Facebook page/group. Also Shaws on here is on T3 only so may help. Paul Robinson & his GP certainly found that medicating by Ft3 blood test results didn't help him. This is because the ft3 level varies hugely throughout the day.
I too have the Dio2 polymorphism inherited from both parents and need high dose T3-only ( currently 100mcg)
I had a conversation with the head of the laboratory once and she said the usual blood tests for those who are on levo, aren't accurate for those on liothyronine.
It's good to see that recognised, but unfortunately it info rarely seems to filter down from the scientists to medics
The current thyroid tests were not designed for T3-only.
Instead we have to monitor our dose by signs and symptoms...good old style clinical evaluation!
I was refused T3 by an endo and have to self medicate
In your shoes I might forego the test incase FT3 is high ( with v low TSH and FT4) which will put the cat amongst the pigeons and give them an excuse to reduce/cut your T3 prescription.
Covid can apparently cause inflammation of the thyroid gland/area but this is expected to resolve
I take one daily dose of T3 and am well with no symptoms. I follow the method recommended by a scientist/researcher/doctor who himself took T3, He took his T3 in the middle of the night when he went to the toilet.
He was also an Adviser to Thyroiduk.org.uk before his accidental death through a bad fall that caused a bleed in his brain.
I take my T3 when I awake with one full glass of water and wait an hour before I eat. The day then just follows a normal day and I feel well and have no symptoms.
I was diagnosed a few months ago with a new condition, i.e. A Polyglandular Autoimmune Disease No.3. as I have Hypo, Pernicious Anaemia and alopecia. I think the latter is the worst as I am bald most of the year.
Well that way of doing it would be so much easier. Thank you Shaws.But I am so sorry to hear about the other conditions you have to deal with. Wouldn't it be wonderful to live in a world where there was no more illness?
The Endo stated I have a 'Polyglandular Autoimmune Disease as I have more than three diseases. I am not complaining as there are more people unwell with complicated illnesses.
Sorry to hear that Shaws. So glad you got your lithyonine back!! I was interested by your diagnosis I have 4 autoimmune diseases so was wondering what the criteria is?
As you now have 'A Polyglandurer Autoimmune Disease (by having a multitude of symptoms) ask to be referred to a Endocrinologist but post his name on the forum then close your post asking for a private message to be sent to you.
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