Is it are isn't it hyperthyroidism

[Angiejill]

Hi all can anyone help me with my thyroid test. I have had two blood tests done in four weeks the first was tsh levels 0.01 and the free T4 level was 21.9 at which my GP informed me that it looked like I had hyperthyroidism and the the second test tsh level still 0.01 and the free T4 level was 13.9. my GP now says my bloods are confusing and I may not have hyperthyroidism. He aid he will speak to an endocardialogist about my results. He is also testing for ANA but I have been waiting five weeks now. I feel so tired all the time, unable to eat as I feel nauseous even through I am hungry, light headed and so foggy brained . Can anyone advise me please

[JOLLYDOLLY]

Hi Angiejill,

From my own results, your second free T4 appears to be in the lower range, which would make you underactive in my opinion, but I have a non functioning partial thyroid and my TSH levels was 0.09 and if I remember correctly, my free T4 was 19 point something. I think the range was 12 point something to 22 point something. I was middle range on the Free T3. I currently take 200 mcg of thyroxine and 20 mcg of Lithyronine. (The latter they are trying to wean me off because of the costs, but I am refusing to come off it and will buy it myself if I have to). I tested positive for antibodies too. I also have B12 deficiency, pernicious anaemia and vitamin D deficiency. I am due to be retested shortly.

My GP says that the TSH levels are suppressed but they are bound to be due to having a non functioning thyroid. Also intimated that I was hyper because of my T4 range, but I believe I am on the right dose. I feel great on it. This was my dose for so many years and never had any problems, until they started messing around and lowering the dose substantially.

The trouble is I don't think many GP's or even Endo's really understand what is going on. I just wish they would listen to us. How do you feel in yourself and are you taking any medication at the moment?

Hope they can give you the right medication and help shortly

Take care

[Angiejill in reply to JOLLYDOLLY]

Hi jollydolly

Thank you for replying, only meds are vit d supliments, co-codamols and lansoprazole (sorry if I misspelled) I feel areally tired all the time and fed up and really sorry for myself at the moment. My GP has said he was testing for SLE as I have a butterfly rash over my face. Feel like I've been suffering for years but no one took notice. I have had numerous operations in the last twelve months and soon to have my veins done in my legs, so all over the place with my feelings. Yes I do wish the GPS would listen and take time to understand what we say, but with the time they allow I'd doubt that's going to happen.

Hope you are keeping well

Angiejilll

[Angiejill]

Hi reallyfedup123

Thank you for your reply

I have some of these bloods done

Vit d 45mnol

Ferritins 21ng

Folate 11.1.ug

B12 270ng

Think they are all low but in range

Not tested for free t3 levels

I am on co-codamols, lansoprazole and vit d 1000 u

Just so fed up

Hope your keeping well

Thank you

Angiejilll

[Angel_of_the_North in reply to Angiejill]

They are nearly all too low and won't allow your thyroid to work correctly. Ferrtinin needs to be at least 70, flate half way through range, B12 over 500 to prevent permanat nerve damage, 900-1000 recommended, D3 at least 90 (up to about 120). The PPi will stop you absorbing B12 and is implicated in dementia and kidney disease. Worth seeing if you can get something else (but you have to be weaned off it slowly).

[Angiejill in reply to Angel_of_the_North]

Hi angel of the north

I have not been put on any meds yet, I only take painkillers for my aches and lansoprazole for my acid reflux and vit d for the deficiency. When the GP told me about the vit d they said to go out side without sunscreen between 11am and 2 pm. I've never been told that.😐, I work 9:30 til 2:30 it's not possible so I got some vit d supliments. Now he says he will speak to an endocardialogist when my ana test come back. Just so frustrating, and I feel so crappy. Hope you are keeping well 😊

[Angel_of_the_North in reply to Angiejill]

Well, sunshine is the best way of getting vit D, but you need about 80% of the body exposed and the sun has to be at leat 50 degrees above the horizon, which only happens for a few months of the year in the UK. Not a problem if you get out of doors in short sleeves and bare legs every day in Summer and are not deficient to start with. Useless if you work 9-5 indoors and only get out in office clothing at lunch time.

See vitamindcouncil.org/about-v...

GPs don't learn about nutrition and vitamins etc on their courses, and most of them just regurgitate things they heard 20 years ago that were already out of date.

[Angiejill in reply to Angel_of_the_North]

Thanks I agree with you there my GP spouts all sorts of things. He even told my husband he would have to live with a pain under his rib cage and it turned out to be Gaul stones and he ended up with pancreatitis and having his Gaul blader removed. So I don't have much confidence in my gp. I have got better info from the locums who are a lot young and seam to be just out of med school lol. Don't get me wrong though I like the surgery I go to so wouldn't want to change, some of the gps are great and do try to arrange appointments for them, just unfortunately got his GP again. I'll give him sometime and if I'm not happy I'll go to one of the others thanks again ☺

[JOLLYDOLLY]

Hi Angiejill,

I am sorry to hear you are going through all this. The thyroid is a mighty powerful gland and controls so much in our body, including skin and hair. It will get you down and so fed up/depressed. No one understands unless they are experiencing the same.

I just hope your GP gets his/her act together. When I was going through my troubles, it was my gynaecologist that referred me to the Endo. Her words, "your thyroid is out of kilter" - she could not believe that my medication had been dramatically reduced. It took so long to get myself back on my original dose. I just hope you do not have to wait so long.

I hope the next results come back to prove you need thyroxine, but if you are not happy, please seek a second opinion.

Sending best wishes your way and please feel free to message me anytime

[Angiejill in reply to JOLLYDOLLY]

Thank you 😊

[humanbean]

You should ask your GP to test thyroid antibodies. There are three different kinds that the NHS can test for :

labtestsonline.org.uk/under...

Based on the limited information you've provided I would suspect you have autoimmune thyroid disease (also known as Hashimoto's Thyroiditis - known to patients as Hashi's). This will cause permanent hypothyroidism eventually. Autoimmune hypothyroidism is the most common type of hypothyroidism that occurs in Europe and the US.

If you have Hashi's, what this means is that you have antibodies which are attacking your thyroid and destroying it a tiny bit at a time. As the cells in the thyroid are destroyed they release any thyroid hormones they contain into the body. This will affect thyroid function test (TFT) results. Since the numbers of antibodies fluctuate, sometimes quite dramatically, then TFTs can change quite dramatically too.

When antibody activity is low your blood tests will tend to show low levels of Free T4 and Free T3 and high TSH. When antibody activity is high your blood tests will tend to show higher levels of Free T4 and Free T3 and lower levels of TSH.

As the antibody activity levels change the Free T4 and Free T3 might change quite quickly. TSH may lag behind - I don't think it responds to changes in conditions instantly. But I should make clear that I am not confident on that point.

Eventually, once the antibodies have killed off enough of your thyroid then you will become permanently hypothyroid (underactive), but before then you might have episodes of hyperthyroid symptoms, which then change very quickly to hypothyroid symptoms then back again. This frequent change in symptoms caused by frequent changes in levels of thyroid hormones is exhausting and damaging.

There are things you can do to help yourself feel better. But first you need to get a definite diagnosis.

[Angiejill in reply to humanbean]

Hi human bean

Thank you for your reply. I will make an appointment to see my GP and ask him about the thyroid antibodies test. When I first went a couple of years ago I was having trouble with my weight but at the same time I wasn't interested in food. I have only tried to keep my weight stable but it had been like a yo-yo over the last twelve months. Each month I haven't done anything different but I can go up to 80kg and down to 72kg and it is exhausting as I lack energy all the time, i have now gone parttime. I can finish work at half two and as soon as I get home and sitdown I can feel myself nodding off. I try not to but sometimes I just can not do anything else.

Thanks again and hope you are keeping well

Angiejilll

[Angiejill]

Thanks I'll have a talk with my GP ☺

[Angiejill]

Hi reallyfedup123

Do you know if the thyroid antibodies show in the ANA test or do I need another blood test

Thanks

Angiejill

[helvella Administrator in reply to Angiejill]

Antibody tests are extremely specific. There are at least eight which are very much related to thyroid. Each test should only identify a single antibody and nothing else.

[Angiejill in reply to helvella]

Hi helvella

Thanks for your reply ☺

[humanbean in reply to helvella]

helvella

Eight different kinds of thyroid antibodies? Which ones am I missing?

1) Thyroid peroxidase antibody

2) Thyroglobulin antibody

3) Thyroid stimulating hormone receptor antibody

4) Antibodies against TSH

5) Antibodies against T4

6) Antibodies against T3

And do the latter 3 have names?

[helvella Administrator in reply to humanbean]

I might have cheated there!

Three types of TSH receptor antibody: Stimulating, Blocking and "don't do much at all". On the basis they have different impacts, I think it not unreasonable to think of them as different antibodies, even if most testing procedures cannot properly distinguish between them. (Though there is progress on that.) That was also why I wrote "should only identify a single antibody".

[humanbean in reply to helvella]

Thanks.

[Angiejill]

Thank you☺