Graves no longer in remission?

[johnboy326]

Hi I have Graves diagnosed 6 yes together with T1 at the time my T4 was 27. Was put on carbim for 6 months and it droped. 2 yrs ago went hypo and have been on Levo 50 a day. Last test came in at T4 27 and I haven't felt that his good for 30 yrs, but have been loosing weight not with agreement have stopped the Levo with a blood test in another 5 weeks. Do you agree with this approach and when should I go back to ask for Levo if I start feeling tired and depressed which I am determined never to go back to when was hypo.

[johnboy326]

Yep definitely have Graves antibodies and all my test results online last one was 27 T4 and 0.01 TSH, also no issue with T4 to T3 conversion. Assume I have been tested for hash but will check

[greygoose]

I agree, it does sound more like Hashi's than Grave's. That's a very low FT4 for Grave's. Unfortunately, some doctors don't know the difference. Did you actually have Grave's antibodies tested - TRAB or TSI?

[johnboy326 in reply to greygoose]

Sorry so I have Graves confirmed have been on Levo cos went I to remission for Graves and was hypothyroud but now t4 is 27 so surely either my thyroid has naturally become normal and don't need Levo or Graves has returned and might need carbinols, so surely not hash?

[greygoose in reply to johnboy326]

Well, it still sounds like Hashi's to me. But only by finding out which antibodies were tested would you know if it was Grave's.

[johnboy326 in reply to greygoose]

All I can see is I'm tpo ab positive and it's Graves can't see that I have ever been tested for hashi, doesn't give any indication of the level of antibodies. Perhaps I should request a hashi test together with all the vitamins just in case.

[Valarian in reply to johnboy326]

On your results sheet, was the statement that you had Graves' linked to TPO specifically, to the FT4 result, or just a general comment ?

TPO on its own is an indicator of an autoimmune thyroid disease, which could be Hashi's or Graves', but generally the levels are lower with Graves' patients than for Hashi's.

The antibody tests for Graves' are TRAb or TSI.

It's not unusual for people with Graves' to become temporarily hypo due to over-medication with Carbimazole, but the thyroid levels usually come up very quickly as soon as the medication is reduced. Although in the long-term, people with Graves' do sometimes become hypo, it isn't usual to swing between being hypo and hyper in the way you describe. Typically, if there is a relapse thyroid levels will be hyper: if you are in remission they will be normal, and you won't need levo.

thyroiduk.org.uk/tuk/about_...

[johnboy326 in reply to Valarian]

It said I had Graves due to positive tpo no other comments. Interesting that my last T4 was 27 in July with 50 of thyroxine just got my results after being a week of the Levo and now it's 19.5 with TSH 0.01. I'm actually getting confused now what to do have another blood test end of October tho and I'm a biology graduate and into this lol

[Valarian in reply to johnboy326]

Are you in the UK, and are you seeing an endo ?

Your TSH is low, which you'd expect with Graves', but I assume it would also be low if you had a Hashi's 'flare', as with those FT4 levels, you don't need to produce more hormone (someone with Hashi's will be better-placed to comment on this; I have Graves').

Your FT4 looks to have been only slightly elevated when you were first diagnosed, although it's difficult to tell without seeing the reference range. People with Graves' often have FT levels which are double the reference range (or even more) by the time they are first tested. FT4 may still be slightly high (sometimes reference ranges top out at 18 or even less), but it appears to either be dropping of its own accord, or possibly responding to the reduction in levo (not sure whether this could happen so quickly), so even if you do have Graves', you may not need any treatment at the moment, simply more active monitoring.

What I really don't get is the idea that Graves' has been confirmed via TPO. It would be interesting to see the levels. Presumaby whoever/whatever analysed the results considers the TPO level to be too low for Hashi's.

thyroiduk.org.uk/tuk/about_...

mayoclinic.org/thyroid-dise...

webmd.com/women/women-thyro...

[johnboy326 in reply to Valarian]

Yeah am in UK and under an endo every 6 months next due nov. I was always told I have antibodies in respect of Graves, only other oddity was I had a testosterone test due to getting Erectyle Dysfunction for the first ever I'm 51 and my free testosterone was 41 range is 5 to 25 which is indicative of hyperthyroidism but since I've stopped Levo in just a week now no probs

[Pascha1 in reply to johnboy326]

If i had a TSH that high i would want gp to either do something and if he doesnt know what hes doing which he doesnt seem to be demand a referal to endo or you will be left ill for years,, those bloods show you are not converting that well if T4 is that high and TSH that low get to gp and demand he does something x sorry just seen it is no longer 27

[johnboy326 in reply to Valarian]

Yep I have read that Levo has a half life of 6 days so starts to decline from then but takes a full 6 weeks to be fully clear. When I went full on hypo 2 years ago my T4 was 6 and I had weight gain exhaustion and depression took like 2 weeks on Levo to start to reverse the symptoms. What I need to consider is ideally I will try to wait till end of October when it's my next blood test and my endocrinologist appt when I will request a full antibody screen, as the diagnosis of Graves was from the lab. However if I get any repeat of the above symptoms I will start low dosing levo. Agree?

[Valarian in reply to johnboy326]

Someone with Hashi's will be better-placed to advise on when/whether you should begin to take Levo again.

With FT4 at 19.5 with a range that runs from 12 to 22, you're still above mid-range, with a very low TSH. This could simply be down to the fact that you were taking levo when you didn't need it. If this is the case, your FT4 may continue to drop until it reaches the point at which hopefully your pituitary will kick in, and TSH will increase telling the thyroid to produce more thyroid hormone. This level varies from person to person.

Hopefully this will get you through to your next endo appointment, when you will have new test results (and yes, I would push for antibody tests, although whether they will do them at this stage is another question). I would caution against making too many changes within a period of a few weeks, especially without new results to give you an idea of the effect of each change.

[johnboy326 in reply to Valarian]

Thanks for your help all agreed will follow your advice

[greygoose in reply to johnboy326]

So, it was just written 'TPO ab positive'? And they said that meant you had Grave's? Was it the lab that wrote that, or the endo? Because, to be perfectly honest, a lot of endos don't know the difference! We have many cases on here of people being treated for Grave's when they actually had Hashi's - which is why I always check.

To confirm Grave's, you need TRAB or TSI tested.

[Angel_of_the_North in reply to johnboy326]

TPO antibodies is Hashis, not Graves.

[Valarian in reply to Angel_of_the_North]

65% of people with Graves' also test positive for TPO, but levels for Hashi's are generally higher.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies for Hashimoto's and also very important to test vitamin D, folate, ferritin and B12

Constant fluctuations suggests Hashimoto's and/or vitamin deficiencies

Low vitamin levels are extremely common

Ask GP to test vitamin D, folate, B12 and ferritin plus TPO and TG thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If TPO and/or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). It is possible to have mildly raised TPO or TG antibodies with Graves

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's and Graves

Food intolerances are very common with Hashimoto's and Graves too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Gluten and autoimmune disease

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

[Valarian]

do you know what the range was for the original FT4 test ? Was FT3 ever tested ?

[johnboy326 in reply to Valarian]

Yes 12 to 22, T3 was tested 18 months ago no issue with conversion from t4

[Valarian]

It is, but it's pretty unusual (rare enough for case reports to be written up in journals etc). Obviously, at any given point. someone can't be both hyper and hypo.

As yet, there doesn't seem to be any evidence (other than perhaps slightly elevated FT4 - although we don't know the reference range) for Johnboy326 having Graves', as his Graves' antibodies don't appear to have been tested, nor is there any suggestion he's had a radioactive iodine uptake test.

www-ncbi-nlm-nih-gov.libezp...

hindawi.com/journals/crie/2...

[MiniMum97]

I have Graves and TPO ab is not the correct test to confirm Graves as others have said. My GP seems to think it is but my endo has categorically said this is incorrect as confirmed other responders above. The correct test is either TSI or TRab. Ask your endo for these tests. Unless you test positive for these your Graves diagnosis cannot be confirmed.

[Valarian in reply to MiniMum97]

well, at least your endo got it right

[Valarian]

ok, but there are academic articles all over the internet saying that it is unusual to have both simultaneously, It's more common to have Graves', then Hashi's.

However, as you say, this looks more like a Hashi's flare, which has been aided a bit by the fact that Johnboy326 was taking levo at the time.

[Pascha1 in reply to Valarian]

I dont think many of the drs had much training on the thyroid ive heard it was less thatn half day traing and nothing taught other than TSh ets and T4 and that Levothyroxine works for all, hyper treat on carbimazole for 18 months and if no remission destry thyroid,, which they did in my case and i have regreted it since, its auto immune and if you get anti bodies down with selenim and vit d and all other vitamins in range you will go into remission.. shamedrs dont know this as they are all to happy to destroy thyroid and leave you on Levothyroxine which surgery and RAI oatients do not do very well on but left to suffer .. it does sound like hashis but you can still have graves and that can attack the eyes known as TED