Totally confused, can someone help please!

[knitwitty]

I have asked for help before and you were great.

Just under 12 months ago I posted these results.

Crp 2.5 (< 5)

Ferritin111.0 ( 20-150)

TSH 2.97 ( 0.27- 4.20)

T4 total 80.4 ( 64.5- 142.0)

FT4 14.85 ( 12-22)

FT3 3.62 ( 3.1- 6.8)

ATP 16.4 (<34)

Arg 12 ( < 115)

B12 475 ( def <140, insufficient 140-250, reduce >725)

Folate 45.40 ( 8.83- 60.8)

I felt terrible but was unable to convince my GP that my thyroid was not working properly.

I have been feeling increasingly unwell since Christmas and decided to try again at the Doctors. New GP who was fantastic, listened to what I had to say and ordered new blood tests.

I still have all the symptoms of hypothyroidism and I've gained about 5kg since just before Christmas.

I have picked up my blood test results tonight and they are as follows:

TSH<0.5 (0.3- 5.0)

fT4 27.5 (11.0-22.00)

fT3 9.7 (3.1 -6.8)

B12 569 (181- 910)

My vit D is insufficient 38 (75-150)

I am not taking any supplements at the moment. I am on no thyroid medication at all.

All other blood results are mid range.

I have had a blood test for coeliac antibodies but they have not yet come back.

My antibodies for hypothyroidism have not been done but the GP thought that it would be ok to test privately the things the NHS would not do, she was great and asked for T3 to be tested because it was low before.

I am petrified now because I don't understand at all what is going on.

I have a very strong family history of underactive thyroid problems , (mum and 5 aunts).

Can someone comment please but don't scare me witless, I'm worried enough as it is!

[diogenes Remembering]

You are hyperthyroid and need immediate treatment. Whether this is true hyperthyroidism or a Hashimoto's flare needs thyroid antibodies testing. Maybe Graves but further testing is urgent.

[knitwitty in reply to diogenes]

Thanks for replying, I am so confused I had my antibodies tested before but they were non existent. I have all the symptoms of hypothyroid not hyperthyroid so I am totally confused. I could go and see the same doctor on Thursday this week ( she only works part time at our surgery). I had to wait 3 weeks to see her for this latest appointment.

I am really scared as I don't understand how things could have swung so far in the opposite direction.

Thank you for taking the time to respond it is really appreciated.

[SeasideSusie Remembering]

Why hasn't your GP tested thyroid antibodies? It looks like you old have autoimmune thyroid disease and you will have raised antibodies - either thyroid peroxidase or thyroglobulin or both.

As a first step I would ask your GP to test antibodies. She may only be able to get TPO ones done, I think TG antibody testing might only be through an endo.

You can get them tested privately but why should you? You should certainly get TPO done on the NHS. If that comes back negative then if GP can't get TG antibodies tested, then think about paying for a private test.

[knitwitty]

I will go back and ask her to test the antibodies before I pay for a private test, she was really good and wrote on the blood form that T3 had previously been low and I needed T3 testing, she did say NHS usually refuse, but they obviously did it this time.

It also suggested a reduction in medication if I was on levo, which I am not.

I appreciate you responding, and I will try to get an appointment with her on Thursday this week ( she only works on Thursday at our surgery) to discuss further tests.

It has really freaked me out as it was the last thing I was expecting.

[greygoose in reply to knitwitty]

Don't be scared. It's almost certainly a Hashi's flare. Why doctors are not aware this can happen, I really do not know! But, that's what it looks like to me. Especially given your previous results. If I'm right, then the levels will go down by themselves, as the extra hormone is either used up or excreted. But you're not in any danger at the moment.

[shaws Administrator]

I would phone and speak to your doctor tomorrow (has he/she not commented upon your results)?

Tell her that you are hyperthyroid according to your results and need immediate treatment. I would go with diogenes comment as he is a researcher and he and his team are researchers and published a paper recently about thyroid problems.

[shaws Administrator]

Hypo and Hyper are two sides of the coin so don't be too anxious but GP should certainly take action.

[knitwitty in reply to shaws]

Thank you,

The doctor I saw last Thursday only works on that day but I will try to get in to see another doctor tomorrow, the results only arrived at the surgery today so that may be why no one had commented yet and maybe they would only go to the doctor I saw.

I called on the off chance that they might be in and they were. Beginning to wish I hadn't now!

I have just looked up my antibody results from last year and they were:

Anti Thyroidperoxidase 16.4 (<34)

Anti Thyroglobulin 12 (<115)

I am totally flummoxed , I was hoping that I might finally have got a diagnosis for Hypo as I have had hypo symptoms for ages.

Thank you again for taking the time to respond.

[knitwitty in reply to shaws]

I'm sorry to bother you again , by take action do you mean do further tests or put me on some medication.

[greygoose in reply to knitwitty]

Hopefully, further tests! Antibodies, to be precise. I see you've already had them tested, and they were negative. But, one negative test does not prove you don't have Hashi's, because antibodies fluctuate all the time.

[knitwitty in reply to greygoose]

Thank you Greygoose

I went to bed early and didn't see this reply, but thanks for the reassurance.

My other half went to Amsterdam at 3.30 this morning and I took my temperature when he woke me it was 35.8 I managed to drop off again and woke up when my son went to work at 5.45 and it was still 35.8.

I have been keeping a note of early morning temps for weeks and most days it is this temp or as low as 35.2.

I am still convinced I am hypo, thanks for pointing out that the antibody status can change I just assumed that if you were negative once you would always be negative.

My heart has been thumping all night long but I suspect it is as much down to anxiety as anything else!!

I really appreciate everyone in this community, so thank you all again for taking the time to respond, words can't really express how grateful I am.

Just waiting for the doctors surgery to open.

[greygoose in reply to knitwitty]

With temperatures like that, I'm convinced you're hypo, too! And that you have Hashi's.

[knitwitty in reply to greygoose]

Thank you Greygoose,I have updated my doctors appointment on a new thread.

I have been having hypo symptoms on and off for years with cholesterol rising , it was 9 last time it was tested but I do not want to take statins. My mums cholesterol got to 12 before they finally decided it was maybe time to start her on Hypothyroid medication. Her cholesterol came down to around 5 within 6 months of starting Levothyroxine.

Up to date I have been unable to convince any GP that cholesterol and underactive thyroid are connected.

I thought I might be getting somewhere when I visited the GP last week as she was very sympathetic to he fact that I had loads of hypo symptoms and I was always freezing cold, ( even if I work up a sweat my temp never rises above 36 degrees).

Any way GP I saw today took the bloods there and then and seemed as bemused as me that things could have swung so drastically in the other direction.

She said she would personally phone the labs and ask them to check antibodies, and repeat the FT3 and FT4, and she will ring me on Thursday to discuss the results.

Thanks again for your responses they are much appreciated.

[greygoose in reply to knitwitty]

It's just amazing that they don't make the connection with Hashi's, and don't seem to know how Hashi's works! There's nothing bemusing about it.

When you have Hashi's, your immune system mistakes the thyroid for the enemy, and sets out to slowly destroy it. After each attack on the thyroid, the dying thyroid cells release all their stock of thyroid hormone into the blood, so that levels of FT4 and FT3 suddenly shoot up high and the TSH to drop. But, it is not the thyroid over-acting. It is the thyroid dying that causes that. And it is only temporary. The excess hormone will be used up or excreted, and the levels will come down to hypo again. And, after each attack, you will become more hypo because there is less and less thyroid to make hormone. This is just so basic 101 thyroid that I don't understand why doctors don't know! Yet every time the see a suppressed TSH, they go into panic mode and over-drive and make wrong decisions, without checking out what's really happening. It happens time after time after time. So, if your antibodies come back high, I hope you'll be able to explain to her what's going on.

[knitwitty in reply to greygoose]

Thank you again, your response is reassuring and much appreciated.

I shall take notes and take them with me to my next appointment, or use them when she calls me on Thursday.

X

[greygoose in reply to knitwitty]

You're welcome.

[1tuppence]

Hello knitwitty.

If you can, take some deep breaths, and then some more

Know that you will contact the surgery tomorrow to follow up on the good advice you've been given.

In the meantime ((()))

x

[knitwitty in reply to 1tuppence]

Thank you Tuppence, I know I'm totally overreacting and I'm trying to calm down, it was such a shock because it was the complete opposite of what I was expecting.

[Rmichelle]

Hi there you need medication!!😊😊 good luck and try to relax-been there and done that.xx

[knitwitty]

Thanks for replying Rmichelle ,

Did you go hyper after being hypo?

I hope you are feeling well now.

X

[Rmichelle in reply to knitwitty]

No i did not go hyper😊 my levels are within range-lol my endo says im normal im cured!!! But still not me yet-my tsh is now 1.25 and my frees are still low in range so probably thats why i dont feel well still but i will get there.

Dont be scared you will be ok-hey greygoose is right you know- she knew all along i was probably on a hashi hyper swing but endo thought different but what do they know-im cured!! Ha.xx

[knitwitty in reply to Rmichelle]

Thanks for replying again, I went to bed early and did not see your reply.

Hopefully I will be able to see the doctor this morning , I hope you start feeling much better soon.

[knitwitty]

Update , I have a GP appointment for 10.20 this morning so hopefully I will get some more tests, I can't last that long without food, so if I eat will it affect the antibodies result? Or does eating just affect the TSH?

Sorry to be such a nuisance.

[Rmichelle]

Sorry only just seen your message. Dont worry it will be ok.😊

[knitwitty]

Thank you Rmichelle,

I don't know what I would do without this community.