Hyper/Graves? Need help with results: I would... - Thyroid UK

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Hyper/Graves? Need help with results

I would appreciate it if anyone could take a look at these results, especially the TPO, and give me their opinion.

Been on Carbimazole since 12/11 - started on 5mg, increased to 10mg on 29/11 and 15mg on 10/12.

At 1st Endocrinologist appointment 10/12 I was told that the TPO levels indicate Graves. Asked for the full set of antibodies to be done and she told me it wasn't necessary.

Thanks in advance

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Datatraveller

At 1st Endocrinologist appointment 10/12 I was told that the TPO levels indicate Graves

Oh dear, I think you need a new endocrinologist.

Raised TPO antibodies suggest Hashimoto's.

To confirm Graves then it's TSI/TRabs. She should really have done these before deciding you had Graves and putting you on Carbimazole.

ThyroidUK's article about thyroid antibodies:

thyroiduk.org/tuk/about_the...

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Thanks, that's what I thought might be the case. If I have Hashi and am having a Hyper episode would Carbimazole help? How long might this kind of episode last for.

Really grateful for your help. My endocrinologist is a diabetes specialist.

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Datatraveller

My endocrinologist is a diabetes specialist.

Mmmm, most of them are unfortunately, and most of them know very little about treating the thyroid :(

We are seeing more and more of this diagnosing Graves and prescribing Carbimazole without doing the relevant tests to confirm it, when in fact the member has Hashi's.

I don't have Hashi's so have no personal experience to share.

If you were alread on Levo and were having a hyper-phase, it would just mean reducing your Levo temporarily until things settle down.

I don't know what happens when you have a hyper-phase before diagnosis though. SlowDragon is our Hashi's expert and she may be around to comment.

In the meantime, here is some information about Hashi's which you might find helpful:

You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies so it's a good idea to test

Vit D

B12

Folate

Ferritin

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Thank you, I'm already taking selenium, and the GP tested B12, folate and ferritin which were all within range (shown on the results above), but I wonder if I'd benefit by increasing the levels a bit as they all seem to be within the low half of the range.

I use a high dose "Better You" Vitamin D spray, so hope I'm OK on that.

I think I may have to go back to my GP and ask for Vit D and full antibody tests.

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You can have slightly raised TPO or TG antibodies with Graves.....but it can be Hashimoto's too. Hashimoto's tends to have higher levels

healthline.com/health/antit...

The only test that definitely confirms Graves is TSI or TRab antibodies tested

Ask GP or endo to test these

Important to test vitamin D too

Though your levels of FT4 and FT3 are pretty high, suggests Graves

With both Graves and Hashimoto's look at strictly gluten free diet

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

chriskresser.com/the-gluten...

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OK, thanks, I think I'll ask my GP, she's very helpful and knows she doesn't know much about thyroid conditions, which I think is better than a diabetic specialist who thinks she knows (if that makes sense).

Will be looking into gluten free diet, too.

Again, everyone's help is much appreciated.

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ThyroidUK have a list of recommended endos -I can’t remember who to email for this, but one of the admins should be able to help.

With a non-existent TSH and FT3 more than double the reference range (also FT4 when you were first tested) this could definitely be Graves, but a positive TRAb/TSI antibody tests would confirm this for sure. (If the test is negative, unfortunately it doesn’t necessarily mean you don’t have Graves’ as antibodies fluctuate - one of the many joys of autoimmune thyroid disease).

You may find it worth sharing this info from NICE with your GP, as she sounds helpful - they aren’t compulsory, but they do give an indication of what is considered good practice in the U.K., which includes TRAb tests.

cks.nice.org.uk/hyperthyroi...

It isn’t uncommon for a GP to prescribe a low dose of carbimazole (eg 5mg/day) to take the edge off things, and for a bigger dose to be prescribed by the endo, but it looks a bit odd that you’ve had two increases. In such a short space of time. Normally, treating Graves’ isn’t about gently increasing the dose of medication until the thyroid levels come down, it’s about getting thyroid levels under control quickly with a relatively high dose of carbimazole, then reducing it gradually to ensure the thyroid remains under control. With both FT3 and FT4 were double the range, a typical starting dose (under a thyroid specialist) might be more likely to be 40mg/day. However, your current dose has obviously made some impression as FT4 has come down.

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Thank you, that's really helpful, I've saved the NICE guidelines for future reference. I'm seeing my GP on Monday so I'll ask her to organise the TRAb/TSI. It did seem a bit strange to be messing around with low doses, my instinct was that it would be better to knock the levels down as quickly as possible. I think the GP just wanted to tentatively make a start while I waited for the Endo appointment.

Incidentally, the Endo said that if I was still Hyper after 12 months of Carbimazole they would operate. Is this normal? Seems a bit drastic after only 12 months.

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Hyperthyroid conditions are supposed to be referred to specialist care, so GPs tend only to prescribe large doses of antithyroids in consultation with an endo - this is as it should be, but the endo needs to be a thyroid specialist.

Normally with Graves’ you can reckon to stay on Carbimazole for 12-18 months, with the dose being reduced over time, and then finally stopped altogether once it’s been down to 5mg/day(or maybe 2.5mg/day) for a while, and thyroid levels have remained within range and reasonably stable. You can’t cure Graves’, so the objective is to achieve remission.

If they haven’t managed to get your thyroid levels down in that time, or if you come off the medication and levels shoot up again, you will usually be offered radioactive iodine treatment (RAI) which will destroy your thyroid, meaning you will almost certainly become hypothyroid and need to take thyroid replacement hormones for the rest of your life. Another option would be surgery, again you would become hypo. There are pros and cons to both options, and to be honest, neither of them is that attractive.

The rationale for this approach is that hormones are something your body produces naturally, whereas carbimazole is a medication which can have some pretty nasty side effects. The side-effects of being hyper can also escalate more quickly than those of being hypo - given your thyroid levels, I guess you may already have experienced thumping heart rates, tremor, breathlessness, muscle weakness etc - basically your entire system is being driven to run at a much faster rate than is healthy.

If your thyroid levels remain high or your Graves’ is very unstable, surgery or RAI may be the best options you’ll have of regaining some normality. You’re way off needing to consider this yet, so I would just read up about the options, listen to the experience of people here (there are people who’ve had both positive and negative experience), and try not to worry too much about it for now. You can’t be forced into either of these options, but they may actually be the least worst options available.

If your levels remain slightly high, but generally kept under control with a low dose of carbimazole, staying on carbimazole in the long term is an option - and there are people here who are doing this. It may mean arguments with your endo, and your best chance will be to try to find a good endo, who would have no problems with the approach if it appeared to be a reasonable option for you.

If you relapse after coming off carbimazole, you could simply ask for another shot at the full treatment. In effect, that’s where I am, although I never got as far as coming off the medication. My thyroid levels were coming down nicely from June 2017 until this time last year, then they shot up again, so my dose was increased back up to 30mg/day in the New Year, and it’s been reduced very gradually over the last year-I’m still on 15mg/day.

There are leaflets about all the options, and more info about being hyper here:

btf-thyroid.org/information...

However, for now, I wouldn’t worry too much about what might happen in 12 months time, the last thing you need at the moment is to add to your stress by worrying about something that may never happen.

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Thank you for that detailed and very helpful response. Yes, I have experienced all of the symptoms you mention, and after 4.5 wks of meds I am still doing so, although to a lesser extent. I'm not dwelling too much on what might happen, but have obviously got an eye on how things might pan out. I'm not keen on the idea of taking Carbimazole long term, so fingers crossed that it kicks in nicely over the next few weeks.

Thanks again for sharing your experience and knowledge.

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