Over Active now Under Active..,

[MistyD]

Hi, my first post here and not sure if anyone can help but I was diagnosed with over active thyroid a couple of month back. Have been taking 2x 20mg carbimazole per day and 1x 5mg bisoporol fumate per day. Blood test now reveals I’m slightly under active. Now I’ve been asked to collect more meds today (presume for under active but I don’t yet know what they’re called) and to take them alongside those I’m already taking for over active. Does that sound right?! I’m having my first appointment with endocrinologist on Monday. Am I now going to veer between the two forever?! Thanks for any thoughts!

[shaws Administrator]

Those who have been in your situation will respond when they read your post. I am hypothyroid and don't have knowledge.

[MistyD in reply to shaws]

Ok thanks very much.

[greygoose]

First of all, do you get copies of your blood test results? If not, you should. You need to know exactly what was tested and exactly what the results were. You need to take control of your disease so that you can fight your corner intelligently. Above all, you need to know if your antibodies were ever tested - TRAB or TSI antibodies - or did your doctor just guess that you were hyper and treat you according to his guess. Once you know that, you can make informed decisions about your treatment.

Treatment should be given with the patients informed consent. But doctors rarely bother with that. Your doctor is not there to dictate to you, he is there to advise you - that's why it's called a consultation.

[MistyD in reply to greygoose]

Thank you, it’s more complicated than I thought, and I realise I need to study it a lot more!

[greygoose in reply to MistyD]

Yes, it is complicated. But not impossible to get the hang of. We patients can do it, the wonder is that doctors can't! lol

[shaws Administrator in reply to greygoose]

How right you are greygoose.

[Marz]

As explained by greygoose is is SO important to see the ACTUAL results - they are yours and you are legally entitled to them. The reason we say this is because there have been a couple of cases recently where the member did in fact have Hashimotos - which causes you to swing between Hyper and Hypo - also you could have both Graves and Hashimotos. So you need the full testing of anti-bodies to make sure. Is your Endo a good guy or a Diabetes specialist - check him/her out first ....

[MistyD in reply to Marz]

Thank you. I just googled him. He is dual trained in endocrinology and diabetes. Also trained in metabolic medicine. I’m just at the beginning of learning about all of this and I can ask for copies of the results but I don’t know what questions to ask or quite why I’m asking them!

[Tostig]

Some people are treated with what's called 'block and replace', so production of thyroid hormones are stopped and thyroxin is given because it's easier to get the dosage exactly right. Or so I understand - I've not been treated this way. I'd have thought the first step would be to reduce Cmz though and see if that is enough to keep you stable. It's incredibly frustrating to have this constant yo-yo effect, where you're either under or over. My sympathies. But - if they can get the Cmz at the right level, you can be quite stable for a long time. Go with a list of questions!

[MistyD in reply to Tostig]

Thanks for replying. Yes, reducing the Cmz would make sense to me too, but the more I read the more I don’t understand! I felt lethargic and unmotivated before deiagnosis and since taking these meds I realised how I pretty much feel like my old self, so I’m worried about taking additional meds. I don’t like not really understanding. I’m not even sure what can happen to me whilst carrying this disease or if it will go away or will I always be on tablets now?

[Valarian in reply to MistyD]

With luck, you may achieve remission from Graves , and never need tablets again.

This probably only happens about half the time, although if your Graves’ flares up again, you can usually have at least one more go with antithyroid treatment before the endos really begin pushing more radical options . If your thyroid really won’t stabilise, they will suggest you consider having it ablated with radioactive iodine (RAI) or else surgically removed. In either case, you will almost certainly become hypothyroid afterwards, and need to take thyroid replacement for the rest of your life. Having an underactive thyroid is considered less dangerous than being hyperactive, especially where excess thyroid levels cannot be controlled effectively with antithyroids. However, once you’ve lost your thyroid, it cannot be replaced, so this isn’t a decision to take without a lot of research and consideration. Although your endo is likely to mention RAI and surgical alternatives, it should be at least twelve months before you need to start thinking about them seriously.

btf-thyroid.org/information...

btf-thyroid.org/information...

btf-thyroid.org/information...

[SlowDragon Administrator]

Early stage Hashimoto's (hypothyroid) can swing from hyper type symptoms to hypo symptoms

We have seen GP's assume it's Graves' disease (hyperthyroid) without doing full testing

Hence greygoose saying it is EXTREMELY important to know exactly what you have had tested

To diagnose Graves you need Trab or TSI antibodies tested. Has this been done?

Link about thyroid blood tests

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

Link about different antibodies

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

Link about Hashimoto's

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

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

UK GP practices are supposed to offer 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. They can no longer charge for printing out, ( EU rules changed after May 25th 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus which exactly thyroid antibodies have been tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

[MistyD in reply to SlowDragon]

Thank you, i’ll Look at these links and I appreciate you telling what ideally I should be tested for. I will ask for that. But once I have that info what do I do with it? I’m just being blindly led through this by the GP at the moment (well, I’ve seen her twice). She hasn’t given me any real background nor do I know what to expect about how I might feel. I am probably lucky that I don’t feel awful like some of the contributors on this forum (and never felt quite that bad), I have merely felt a bit rubbish but have always managed to carry on normally, but since taking the meds I realised how I had my energy back. The doc has told me to collect my new prescription from docs Reception and doc hasn’t asked to see me, the Receptionist told me herself that I now have slightly under. I’d have thought the doc should see me briefly...Also, apart from the feelings of anxiety and nausea I’m not sure what other symptoms I should be looking out for, or what I should be doing, behaving, eating etc.

[Nathalie70]

You shouldn’t be given drugs for an under-active thyroid. You will probably need to reduce the dose of Carbimazole. As Carbi tablets come as 20 and 5mg, the new drug may simply be 5mg.

[MistyD in reply to Nathalie70]

Ok thanks, that’s what I wondered. My doc hasn’t asked to see me she just told the Receptionist to tell me I’m now slightly under and to pick up the prescription and take those tablets alongside my current meds. Then to get another blood test in a month’s time. I’ll report back what the meds are, tomorrow. One other thing, if you guys are reading this thread, is it the case that every now and then you feel completely exhausted and can barely get up? I’ve had this twice over the last month and have had it occasionally over last few years but not sure if due to illness, meds or other factors - hard work in garden one day or couple nights reduced hours sleep. (Background: I’m 51 and think I’m over the menopause by 5 years, so I figure it’s not that)

[Valarian in reply to Nathalie70]

Prescribing a high dose of antithyroids (eg Carbimazole) in parallel with thyroid replacement such as levo is one of the standard regimes for treating Graves’ Disease.

[SlowDragon Administrator]

If you have Graves' disease you should be referred to an endocrinologist, GP should not be managing it

Get full printed copies of exactly what has been tested, with results and ranges. Come back here for advice

If not satisfied that enough has been tested, then either go back see same GP, or different one and ask questions and for a referral to endocrinologist after advice on here

Other option is full private testing. Many on here do this as NHS often refuses to test FT3 or correct antibodies

[MistyD in reply to SlowDragon]

Thank you that’s interesting. I do have private medical healthcare through my work so perhaps I should explore that. I think the doc thinks I have Graves but I’m assuming the endocrinologist will be able to determine that. I’m seeing him on Monday. I felt absolutely exhausted today and I wonder if that’s part of what happens with over an active (but apparently it’s now slightly under).

[Valarian in reply to MistyD]

Exhaustion isn’t unusual, although there can be a bit of a ‘Duracell bunny’ effect due to a racing metabolism - wear yourself out with a frenzy of activity, then collapse from exhaustion. It does get better as your thyroid levels stabilise.

If it is Graves’, if your results are under, it will almost certainly be because you are slightly over-medicated. Don’t be tempted to stop the medication without guidance from your endo, as to have the best chance of achieving remission, you need to be on the carbi for 12-18 months.

[Valarian in reply to SlowDragon]

Graves’ patients usually have regular FT3 tests on the NHS, although sometimes they can only be ordered by the endo, so MistyD may need to wait for this (and antibody tests) until her first endo appointment.

[Valarian]

as Greygoose and Marz have said, we will be able to give you more information if you post your results and the reference ranges (usually in brackets after the results).

My expectation is that you will have had TSH and FT4 tested, maybe also FT3, although you may have to wait for the endo to request this. Your endo is also likely to request antibody tests, probably either TRAb or TSI, (which show whether your hyperactive thyroid is due to an autoimmune condition called Graves’ Disease or not). Another antibody,TPO, is also elevated in more than 50% of Graves’ and almost all cases of Hashimoto’s disease, although the levels for Hashi’s are much higher than for Graves’.

Given the amount of Carbimazole prescribed, your starting levels of FT4/FT3 will probably have been quite high, perhaps even double the reference range.

It is difficult to get the dose of Carbimazole right when Carbimazole alone is prescribed, and it isn’t uncommon for some people to dip below range temporarily.

Assuming you do have Graves’ (the most common cause of hyperthyroidism), there are two regimes for anyithyroid treatment (ie Carbimazole). The first is titration, which involves gradually reducing (‘titrating’) the dose of Carbimazole as thyroid levels come into range, and then keeping them there until at least 12 months have passed since treatment started with a maintenance level dose (perhaps 5mg).

The second is called block and replace. A high dose (maybe 30-40mg) of Carbimazole is maintained throughout treatment, but once the patient’s thyroid levels are within range, they are supplemented with thyroid replacement (levothyroxine) to keep thyroid levels in balance. It sounds as though you are on this regime. Each endo dept tends to have its own preference.

In both cases, treatment is usually maintained for twelve to eighteen months. At the end of the period, the Carbimazole is withdrawn altogether to see whether the Graves’ has gone into remission. Success rates for the two regimes is apparently pretty much the same. Titration tends to take a bit longer, require more blood tests, and be more likely to lead to thyroid levels temporarily dipping below range due to over-medication. Block and replace requires a higher dose of Carbimazole throughout, and also means you are unlikely to have any idea as to to whether your Graves’ is in remission until the Carbimazole is withdrawn.

btf-thyroid.org/information...

Good luck !

[MistyD in reply to Valarian]

I can’t tank you enough for all this information. Thank you so much for taking the time to read through it all! It is enlightening and SO helpful to go armed with this info to the endo on Monday!

[SlowDragon Administrator]

With both Graves and Hashimoto's going strictly gluten free diet may help

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

[MistyD in reply to SlowDragon]

Again another interesting and most helpful response. I’m overwhelmed by the amount of in-depth information and helpful tips. You guys really know your stuff! Thank you SO much for all this help! Isn’t it a shame that our docs don’t have the time to tell us any of this?!

[SlowDragon Administrator in reply to MistyD]

Many of us made no progress until dealt with improving low vitamins and gluten or other foid intolerance.....neither of which are really considered important by medics

They only acknowledge coeliac, because there is an easy yes or no test.......that's very unreliable. No test available for gluten intolerance, you just have to try it

[MistyD]

Thank you, i’ll Have a look at the gluten free foods. Picked up prescription today and it is for Levothyroxine (one each morning 100 microgram) to take alongside the Cmz. Presume to balance it again. Docs receptionist wasn’t sure if I should continue with the bisoporal fumarate as well - at first said yes, then called back and said no. (My doc isn’t there today). It’s only 2 days before I see endo so presume he’ll tell me if I have to go back on them. (Realise they’re for high blood pressure and presume not directly for over active thyroid, but haven’t had my blood pressure checked since). I’ll ask him to check the antibodies and check if I have Graves or Hashimoto’s (I thought that related to under). I’ll ask for copy of my blood test results too and post them. Appreciate all the help and advice!!