Positive TPO and now normal thyroid levels

[PeggysM]

I had a hospital appointment earlier today. My thyroid levels are normal now on carbimazole. I have to go on a reducing dose, then a maintenence dose until about April 2021. When I asked the cause, the Co sultan said its my genes. I tested positive TPO, is this graves??

[greygoose]

No, it's Hashi's. To show you have Grave's you need your TRAB or TSI tested. And, until they have been tested, he should not have put you on carbi. I don't think he knows what he's doing, frankly.

[PeggysM in reply to greygoose]

I've never been hypo only hyper. I had the antibody tests and he said the TPO antibodies were positive. I have to stay on the carbimazole, my levels are normal and I feel a lot better. I'm just confused.

[greygoose in reply to PeggysM]

How long have you been hyper? Hashi's starts out with a 'hyper' phase before going on to hypo. But, then tends to swing between the two until the thyroid is completely destroyed.

[PeggysM in reply to greygoose]

I noticed symptoms back in July and my levels weren't that high even though I was very symptomatic of hyperthyroidism. They did go higher and I got more sick before I was eventually started on the carbimazole over 2 months later at the beginning of October. My bloods last week show normal levels now, the previous bloods showed them coming down. I'll have bloods every 6 weeks. I've had thyroid levels done in the past due to tiredness but it was always my vit d that was low. When that was treated I felt better.

[greygoose in reply to PeggysM]

Do you have copies of your results? If so, post them here, with the ranges, and let's have a look.

[PeggysM in reply to greygoose]

These are the ones I have. I don't have today just that all was within normal range. On 26th sept my ft4 was 46 upper lab range 23. (This had gone up from 28 on bloods that were taken 2 months previous) .

Ft3 13.7 (lab range 3.5-6.5)

TSH 0.01 not sure of lab range

On the 7th November my bloods were

Ft4 24

Ft3 6.3

TSH 0.01

I was supposed to have a thyroid biopsy a couple of weeks ago following on from results an ultrasound scan the week before. When I got there and they rescanned me, they couldn't see anything biopsy and said I'd also had thyroiditis and that the first scan showed my lymph nodes enlarged. The repeat showed them normal size. I had the start of a cold the week before but it didn't really develop in to a cold. I always get enlarged and painful nodes when I'm brewing an illness even if it doesn't fully develop. Just because I'm awkward it seems.

Thanks for taking the time to reply as well, it's really appreciated 👍🙂

[greygoose in reply to PeggysM]

An FT4 of 46 isn't really high enough to be Grave's. And, certainly, an FT3 of 13.7 is more like Hashi's than Grave's. But, if you really want to be certain - and I would in your place - I would insist on having the TRAB or TSI antibodies tested. TPO antibodies can be high with Grave's, but they don't prove you have it. It's more likely to be Hashi's.

[PeggysM in reply to greygoose]

OK, I have another appointment in 6 weeks. I'll ask more questions. All he said was its autoimmune (blame your genes), after I stop the carbimazole there's a 50% chance of reoccurance. The previous appointment they said I may need to have my thyroid removed/destroyed if it reoccurred. I'll definitely have to get more answers next time. I'd hate to think how poorly I would've felt with higher results. I really felt so poorly

[greygoose in reply to PeggysM]

after I stop the carbimazole there's a 50% chance of reoccurance.

If it is Grave's, yes, that's true. But the odds are it isn't Grave's. Doctors just see a suppressed TSH and panic.

All he said was its autoimmune

Hashi's is autoimmune. But, so many doctors don't know the difference between Hashi's and Grave's. And, if they're talking about removing your thyroid, yes, you do need to ask a lot more questions!

[Valarian in reply to PeggysM]

This is a pretty standard approach to Graves's disease (and is explained in some of the links posted in response to your previous post). The aim is to keep thyroid levels tightly controlled with carbimazole for 12-18 months, gradually reducing the doseage and eventually withdrawing it altogether to see whether your Graves' has gone into remission. This timescale is thought to have the best chance of success. As the endo said, the success rate is around 50%. You should have regular tests during this time (TSH, FT3, FT4) to avoid going hypo - the exact frequency is likely to depend on how much carbimazole you are taking and how stable your thyroid levels appear to be, but possibly 4-6 weeks to begin with and every 8-12 weeks later on. However, Graves' can be unpredictable, so you need to tune into your own symptoms - if you start feeling unwell in a different kind of way (eg feeling too cold rather than too hot), it's worth asking for your next blood test to be brought forward in case you have dropped trough the bottom of the range.

The endos usually begin mentioning the possibility of removing/destroying the thyroid fairly early on. Unless your thyroid levels take off again while you are still in carbimazole, they are unlikely to really try pushing you towards this option until you've had at least one shot at achieving remission, which gives you quite a few months. Quite honestly, I would try not to stress out about this right now (Graves' and stress aren't good mixers), but just take the time to read more about the treatment options, and seek both positive and negative opinions from people on this forum. The important thing to remember is that you can't be forced to have RAI or surgery. Some people do remain on carbimazole for the long term, but others have chosen RAI or a thyroidectomy and been happy with their choice.

[minkjaere in reply to PeggysM]

Hi! TPO is a test to see if the cause is auto-immune, so it can either be Grave's or hashimoto. I also have Grave's and based on your result, i see that this is consistent with the Grave's, that is suppressed tsh due to high t4 and t3 levels in the blood. I am not familiar with hashimoto, so i can't really comment on that. But to be sure, as they said you need another test, that is a biomarker for Grave"s, i.e. Tsi or Trab

I had my first graves in 2014, after treatment for 9 months was in remission for 5 years. It came back this year, was on medication for 7 months, and so far until now all my levels are normal and i start to feel my normal self. I need to have blood work done every month. My tpo is >600, wherher i am sick or in remission. So yes, this illness is gene related. The only thing that varies is the tsi, trab, which increased up to 4 (normal value should be <2) when i was sick.

[PeggysM in reply to minkjaere]

Thank you. I'll see if I did have those test and what the results are

[Lora7again in reply to greygoose]

greygoose I swing between hyper and hypo but a Consultant who did an ultrasound on my goitre this year tells me I definitely do not have Hashimoto's because she has scanned hundreds and mine has not change much in 10 years it is still a multinodular goitre and slightly enlarged. I have wondered what is going on with me but I was told I had Graves' disease because I have gone into remission twice now.

[greygoose in reply to Lora7again]

You can go into remission with Hashi's, too. But, I couldn't comment on your case without a lot more detail. For example, what to the antibodies say: TRAB/TSI, TPOab and TgAB.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's and Graves.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) or Graves' disease

Ask GP to test ALL vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Graves' disease can also cause slightly raised TPO or TG antibodies

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

Low vitamins are especially common with Hashimoto's and Graves

Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies AND TSI or TRab antibodies tested at least once .

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Link about antibodies

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

Hashimoto's

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

List of hypothyroid symptoms

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

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[PeggysM in reply to SlowDragon]

Thanks I'm going to ring the endo secretary tomorrow as I recognise some of those abbreviations from being on the blood form, it was the TPO that was mentioned today that tested positive, I'm assuming the others were negative. I'll ring and see if she will give me the results. I need to start taking vit d as it was a little on the low side, though not massively. I'm wondering why I had so many awful symptoms of my bloods weren't that bad. Though I am very sensitive if my body gets out of balance. I even have to be careful about medications as anything can and does play havoc. Anyone else may not have had symptoms until the results were higher? I'll phone them tomorrow

[SlowDragon Administrator]

Both Graves and Hashimoto's are autoimmune.

Graves is hyperthyroid- overactive. So bloods show low TSH and high FT4 and FT3

Hashimoto's ends up as hypothyroid......but frequently starts with a hyperthyroid phase at the start.

Early stage Hashimoto's can initially give low TSH and mildly raised FT4 and FT3. Levels can change rapidly...to become hypothyroid....high TSH and low FT4 and Ft3

Hashimoto's will have high TPO and/or high TG antibodies

Graves' disease is confirmed by raised TSI or TRab antibodies. Graves can also have mildly raised TPO or TG antibodies

[PeggysM in reply to SlowDragon]

Thank you slow dragon. I really need to get those antibody results. I'll phone tomorrow and try to get them.

[SlowDragon Administrator in reply to PeggysM]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

Obviously results from endocrinologist may be slightly different and ringing or email endo secretary for these

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

[PeggysM in reply to SlowDragon]

Thank you. I think I'll have to ring the secretary. The last time I rung the gp secretary they couldn't access the results as it was the hospital that requests the tests. If the GP request them then they can access them.

[Lora7again in reply to SlowDragon]

My antibodies are Thyroglobulin 4000 and underneath it says 600 ... I would have to log into medichecks to say exactly what the 600 is but it is antibodies. I have been like this for years and I cannot seem to lower them except on one occasion when they dropped down to 2500 and the medichecks Doctor said your antibodies are lowering which is good ... well the next test they were back up to 4000 and he made no comment. I laughed when he said your TSH is 0.77 and your thyroid is now normal! what I have enlarged multinodular goitre. His advice continue to have blood tests every 6 months .... he wants me to keep paying medichecks to test my blood doesn't he pmsl

[pennyannie]

Hello again PeggysM

I replied to your first post, and would just like to know if you have now had confirmation that you actually do have Graves Disease ?

It's a simple question to ask, and the endo is duty bound to have run these tests.

You are not asking anything out of the ordinary - you simple need confirmation of what you have been diagnosed with through the blood test, which is normal procedure, and for Graves Disease you are looking for TSI / TRab positive antibodies.

I know it's a difficult time for you, the endocrinologist has this answer, and if he hasn't he will run the correct blood test so you know, and we know, what health issues we are dealing with, otherwise we're still in the dark and second guessing which in itself causes unnecessary additional stress and anxiety.

[PeggysM in reply to pennyannie]

Like I say, when I asked he just said blame your genes it's autoimmune shown by the positive TPO. I was pretty tired and been suffering anxiety after an unrelated meds change a month ago. (I'm very medication sensitive). He was very dismissive of the question I feel in hindsight. I know I should've pushed for a more definitive answer and that's down to me. I'll ring for the results soon. I've tried this morning but the secretary wasn't there. And thank you for replying 🙂

[pennyannie in reply to PeggysM]

I understand where you are :

Could you ask for a letter confirming your diagnosis, including the a copy of the blood test that was run to support the diagnosis, showing the antibody tests, confirming the TSI / TRab antibodies.

Will your doctor help you in this, and act on your behalf if you feel you are hitting your head against the wall ?

[SlowDragon Administrator in reply to PeggysM]

Often if consultant is defensive it's because they are out of their depth......perhaps he didn't know which antibodies needed testing for Graves

Many endocrinologists are only Diabetes specialists.

[LAHs in reply to SlowDragon]

My god, can't these dopes just get on Google and type in "What are the blood tests for Graves disease?" Then go have a chat with colleagues at lunch time and check out one's ideas. a) you prove Graves then (I would) b) disprove hypothyroidism. One hours research, one hour lunch break, 2 blood tests and that's it.

[Lora7again in reply to pennyannie]

I am glad you have so much confidence in the Endocrinologist mine overdosed me on PTU so my TSH was 9 and his response when I burst into tears when I felt so ill was to offer me counselling. This man had written papers on thyroid disease and had graduated from Oxford so I thought he was an expert ... I was so wrong.

[humanbean]

Just bear in mind that life with a destroyed or removed thyroid is NOT easy and getting back to "normal for you" is often impossible, despite doctors telling patients that all they have to do is "take a little white pill" after RAI or surgery and they'll be fine.

I have read a few reports from patients that the doctor held up their fingers while they said it to indicate how little the pill is - as if the size of the pill you have to take to "replace" the thyroid is the most important thing about getting one's thyroid removed or destroyed.

The truth is, if you lose your thyroid you will lose something which produces at least five hormones, plus probably others yet to be discovered, and doctors replace it with just one and tell patients they will feel great.

The alternatives for patients are to use medication to try and bring the thyroid under control, and keep it there for as long as possible. Plenty of people have gone into remission from Graves' Disease and stayed in remission for years.

There are people who can never get into remission, and they may have to face destruction or removal of their thyroid eventually. But it isn't a decision anyone should be forced into quickly and nor is it a decision to be taken lightly.

[virtualreality]

Hi there, as others have said, high TPO antibodies can indicate Hashimoto's (underactive) or Grave's disease (overactive), but the blood test results you've included further down this thread indicate overactivity. It's the TSH receptor antibody (TRAb) test that will tell you if it's Graves or not, so hopefully your consultant will be able to provide those results to you. Earlier this year, my Dad was diagnosed with confirmed Graves with very similar results to yours. Symptom severity doesn't always correlate with how extreme the blood test results are, so it is possible to have marked symptoms even if your hormone levels aren't severely out of range. So glad the carbimazole seems to be working for you, and good luck with getting the answers you need.

[Lora7again in reply to virtualreality]

My so called expert Endocrinologist said "You probably have Graves' Disease but it could be an overactive thyroid sometimes it is hard to tell" I wonder where he is now? I feel sorry for his patients because he tried to pressure me into having my thyroid removed which I decided against and I am so glad I still have my thyroid now because I am in my second remission.

[purple64]

I have graves and keep being told that I need radio active iodine or surgery. My levels are "normal" whatever that is but antibodies are still high. Don't be pushed into having surgery or RAI until you have all the facts. I am still on Carbimazole and will continue with it for as long as possible. As the consultant said its MY choice. At my last appointment she said no proof Carbimazole is safe long term then in the next breath said some patients had been on it for 15 years 😂. Take care and find out as much as you can don't be afraid to ask even if it does sound silly 🤗

[Lora7again in reply to purple64]

I know people in the US who have also been on it for years and they are monitored just to make sure it doesn't affect their liver which it can in rare cases.

[purple64 in reply to Lora7again]

Exactly. She contradicted herself with her comments. I have my liver checked about twice a year because of the medication for my eye.

[Valarian]

A lot of people with Graves test positive for TPO (an indicator if an autoimmune thyroid disease, ie Graves’ or Hashimoto’s), but the specific antibody tests for Graves’ are TSI and/or TRAb.

There is thought to be an hereditary element to autoimmune diseases, but ‘it’s in your genes’ is probably a bit simplistic. Viruses and major stressful life events have also been implicated. Some of us have no obvious family connections with autoimmune problems ( which obviously doesn’t mean they don’t exist).

[Lora7again in reply to Valarian]

I think I might have it because I am half Irish and there is a connection because of the potato famine in Ireland where people were starving to death.

[purple64 in reply to Lora7again]

Really, my mother was Irish 🤔

[PeggysM]

Thank you to everyone who has taken the time to reply to my posts, and for all the information given. I tried a few times to speak to the secretary today, without success. I will try again tomorrow.

There is certainly a lot to think about and a lot of information to take in.

I will update this post as soon as I have more information to give, whenever that will be. 🙂

[PeggysM]

OK, so I've tried several times over the past couple of days to get in touch with the consultants secretary. No luck.

I've never had a problem before. I had to contact her after each thyroid blood test was taken to chase up the results, after I'd made the appointment for the biopsy that never happened, pretty much for everything so they could chase up results etc. straight away. So I'm putting this down to unusual. I'll update, with any results, when I've spoken to someone. 🤔

[PeggysM]

I finally now have my results.

My TPO is 587 (normal range 0-75)

TRAb 3.5 (normal range 0.0-0.9).

These were taken on the 26th September.

[PeggysM]

I have to reduce my carbimazole to 15mg for 3 weeks and then 10mg for 3 weeks then 5mg maintenence. The letter came through yesterday but I have to contact the GP for an appointment. That may take a week or more due to the new year period. Has anyone got any experience of this and what to expect. I'm hoping my thyroid levels will stay within normal limits but I'm bothered I'll l start feeling poorly again. Also my sister is being investigated for arthritis, possibly autoimmune. There's no thyroid problems in the family, so mine seems to be out of nowhere. But, does it link to other autoimmune diseases within family. I know a person with one type can be at risk for other, but its the family element I'm interested in. She has had thyroid tests too but nothing showing, though that was me over the last 2 years until recently.

[pennyannie in reply to PeggysM]

Hey there Peggy

I doubt many people will find your latest results down at the bottom of your original post from 10 days ago :

Suggest you start a new post offering up the TPO/Trab antibody results from September and the medication you have been now told to take, along with any blood tests results, and any other questions and issues you are concerned about.

There is usually a genetic predisposition, maybe a generation away from you, and Graves Disease can be triggered by a sudden shock to the system, like a car accident or unexpected sudden death.

I was physically threatened and verbally abused by a work colleague, and felt very frightened and vulnerable. Four months later I was diagnosed with Graves Disease.

You might like to take a look at the Elaine Moore Graves Foundation website.

She has Graves Disease and found little help when going through RAI in the late 1990's so wrote a book to help others. She is a medical researcher and now runs a very well respected and knowledgeable platform for all Graves patients worldwide.

There is an open forum, much like this amazing site where you can ask questions and receive answers from the community as well as from Elaine herself.

[PeggysM in reply to pennyannie]

Thank you very much! I'll take a look at that. I'll start a new post as suggested