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[weegiz12345]

Please help new to this site today. Am on carbizamole for overactive thyroid and am slowly gaining the weight I lost. Have read it can continue and you can end up obese. Am barely eating anything please any ad ice greatly appreciated.

Louise

[greygoose]

I think that, to get the best advice, it would be a good idea to post your latest blood test results.

How were you diagnosed hyperactive? Did you have positive TRAB or TSI antibodies?

[weegiz12345 in reply to greygoose]

I can’t find my results for when i was diagnosed. I had all the usual overactive symptoms. was given beta blockers to lower my heart rate and carbizamole 30 mg. The doctor told me my thyroid levels were very high. 6 weeks later my blood test were normal and the carbizamole was reduced to 10mg. I’m now on 5mg and my blood tests are normal. But my weight is going above what I lost and creeping up. I’m vertically eating nothing, a couple of bows of cereal a day. Please help. This has all happened in 6 months. My mum has an underactive thyroid.

Louise

[greygoose in reply to weegiz12345]

The problem is, the majority of doctors panic and have a knee-jerk reaction when they see over-range Frees, and suppressed TSH, and put you on carbi without doing the right tests. Could be that what you actually have is Hashi's. In which case, carbi is not the right treatment, you numbers have gone down too fast, and you are now very hypo. But, without seeing any labs, we really can't tell. It's not something one can guess at: we need the numbers to be able to help you.

[weegiz12345 in reply to greygoose]

Thanks for the reply, doctor said I’d most likely got Graves’ disease.

[greygoose in reply to weegiz12345]

Yes, well, he would. That doesn't mean you do, though. You need the proper testing.

[weegiz12345 in reply to greygoose]

Found them, TSH <0.01 freeT4 13.5 free T3 5.6 does this help?

Louise

[greygoose in reply to weegiz12345]

I would imagine those are your most recent results, aren't they? I was thinking more of the results when you were diagnosed.

And, please, when you give results, can you also put in the ranges? Ranges vary from lab to lab, so we need those that came with your results.

[weegiz12345 in reply to greygoose]

These are the results I first got and the last joy ones I have, sorry.

[greygoose in reply to weegiz12345]

OK, so you don't have your results from diagnosis? Do you know if they tested antibodies? If so, which ones?

[weegiz12345 in reply to greygoose]

Reading the first letter I received it says biochemistry showed a suppressed TSH but markedly elevated free of T4 of 60 and a free T3 of28. Does this make any sense?

Louise

[greygoose in reply to weegiz12345]

Ah, yes, OK. So, that does sound like Grave's. But, you'd be amazed by how many times they get it wrong!

[weegiz12345 in reply to greygoose]

So any advice on the weight gain?

Louise

[greygoose in reply to weegiz12345]

None, I'm afraid. It just happens sometimes that hypers put on weight.

[PurpleNails Administrator]

I have a hyper nodule which is treated by carbimazole.

As weight loss is common when hyper for most (not me) regaining it once on carbimazole and your level are stable is also very common. We are advised to be careful as we have become accustomed to larger apatite. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods. 2 bowls of cereal a day will not be enough calories to sustain you and your nutrient levels will also deplete too quickly.

What are your most recent bloods test results as your thyroid level may have become too low, even though you are on a low dose or carbimazole. GPs do not always do a full thyroid function. Do you have online access or obtain an actual print out of results? You need your results with ranges (ranges vary between labs). TSH, FT4 and FT3 should have been tested. Your carbimazole need to be adjusted by FT4 & 3 not TSH alone.

Graves should also be confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) for (AIT) (Autoimmune Thyroiditis & Graves) ultimately AIT causes hypothyroidism but can cause transient hyperthyroidism.

You also need to test vitamin D, folate, ferritin and B12. These need to be optimal for thyroid health and cause symptoms

[weegiz12345 in reply to PurpleNails]

Most recent are, TSH <0.01 freeT4 13.5 free T3 5.6 and the first letter I received it says biochemistry showed a suppressed TSH but markedly elevated free of T4 of 60 and a free T3 of28. Does this make any sense?

[PurpleNails Administrator in reply to weegiz12345]

Suppressed TSH and very high frees are very likely Graves. Your frees now in range? Would need ranges to be sure, they are usually shown in (brackets).

TSH still suppressed and can lag behind for a long time, which is why dose adjustment should be by frees.

You haven’t had a TSI or TRAb test? That’s the only way to conclusively confirm Graves.

Has specialist advised how you will proceed?

How often are you tested?

[weegiz12345 in reply to PurpleNails]

Just been told have blood tests every 6-8 weeks and that I will be on carbizamole for. a year .

[PurpleNails Administrator in reply to weegiz12345]

The NHS guidelines view 18 month a limit for carbimazole & allow this time to achieve remission. Some find they need a longer time but are encouraged to undergo radioactive iodine (which is offered as first option by NHS) or surgery if RAI is not suitable (eg you care for young children). You have plenty of time to do research on all the options first. Don’t be pressured into any decisions.

Do make sure you get copies of all your results including ranges for your records and keep a diary of your symptoms & dosage.

[weegiz12345 in reply to PurpleNails]

Thanks xx

[pennyannie]

Hello Weegiiz

It is essemtial that you have your antibodies tested for Graves as already detailed :

Graves antibodies can both stimulate ( TSI ) and or block ( TRab ) and it can be a bit like a tug of war if they are both active :

The AT drug is blocking your own thyroid hormone production, so as you high levels of T3 and T4 come back down and into range the AT drug may need to be titrated down further.

It is highT3 that gives you the symptoms of hyperthyroidism and now possible low T3 that has given you the symptoms of hypothyroid, one of which is weight gain.

During this phase of the disease your metabolism has been in overdrive and weight loss apart there is a very good chance you have been metabolising too fast to gain any nutrients from your food.

It's necessary to keep your core strength strong and solid during this phase. The converse is also true as a slower than normal metabolism for you will also cause nutrient deficincies, so please ask your doctor to run levels for ferritin, folate, B12 and vitamin D and then post back the results and ranges on here for considered opinion.

As with everything it's not a question of being in range somewhere but being at optimal levels for you within the range.

The NHS generally give around a 15/18 month window for AT medication with a view to this being a one off and your levels drop back down to normal, and on no AT drugs, you find remission and get on with your life.

However Graves is an autoimmune disease and it also needs you to try and understand why this happened and yes, it can be generic and there was probably something that triggered your immune ststem to attack your thyroid.

Your thyroid is the victim in all this and not the cause - the cause is your immune ststem attacking your body.

You might like to read around Graves Disease and suggest you dip into the Elaine Moore Graves Disease Foundation website as there is much research on the auto immune component this this disease and It will be in your best interests to become your own best advocate as Graves seems to be a poorly understood and badly treated auto immune disease.

I'm with Graves post RAI thyroid ablation in 2005 and now self medicate, managing lingering Graves, thyroid eye disease and hypothyroidism.

[weegiz12345]

Thanks xx

[Valarian]

Most people seem to regain the weight they lost while they were hyper. The main thing to watch out for is that your appetite may have increased while you were hyper and as your metabolism was running faster than usual, you would have needed the additional calories; obviously that won’t be sustainable as your thyroid levels come down.

Two bowls of cereal a day may or may not be the right amount of calories, but they are unlikely to provide all the nutrients you need. It would be worth trying to get yourself back onto a well-balanced diet initially. There are plenty of apps around that can help with this, they can also help you track calories, although the combination of a balanced diet and stable thyroid levels may be enough to stop any further weight gain.

[weegiz12345]

Thanks for this. Xx