Consultant appointment

[Hkm2281]

I finally had my appointment after suffering with graves. It was over very quick no bloods, just took my pulse. Was in there for 15 mins, then out again. Plan is to take carbimazole 40mg, then in 6 weeks start taking thyroxine along with the carb for 18 months. I apparently won't need a blood test for another 5 months, when I have a review with him again.

[SlowDragon Administrator]

Well that was an underwhelming appointment then

you need to organise your own testing of vitamin D, folate, B12 and ferritin....plus a TPO and TG antibodies for Hashimoto’s

Saw you had a low ferritin result in previous post

Frequently we need to supplement to improve low vitamin levels and this helps reduce symptoms

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

25% off Medichecks tests today

Coeliac blood test too as gluten free diet helps or is essential for thousands of Graves’ disease and Hashimoto’s patients

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 strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

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

[Hkm2281 in reply to SlowDragon]

Thank you for your reply and yes I think I am going to have to have them tests done. Its very slow progress but I'll get there x

[pennyannie]

Hey there again,

Well it might have felt like a waste of time but at least, at last, there's now a plan and a prescription for some AT drugs.

OK, so you are to put on what is called " Block and Replace " - initially the AT drug blocks your thyroid production and during those first 6 weeks your levels of T3 and T4 should reduce back down into range and your symptoms reduce accordingly.

Please be aware of the symptoms that Carbimazole can cause, and if there is a sore throat developing, go straight back to the doctor, or A & E and be switched to an alternative.

At 6 weeks the thinking is your levels will have reduced sufficiently and so rather than allow " you to fall " further and into hypothyroidism, the endocrinologist is adding back in some Levothyroxine to try and balance you out to an acceptable level of T3 and T4 and obvious wellness, on your part.

So, let's see how you get on - one thing, just looking back you said you thought your vitamins were ok and in range last time they were checked - please get ferritin, folate, B12 and Vitamin D actioned again, even if you have to do this privately, and remember it is not about being somewhere ' in the NHS range ' but optimal :

No thyroid hormone replacement works effectively if these essential vitamins and minerals are not strong and solid, and so post these results and ranges back on here so we can see if supplementation is required, despite the fact your doctor may see this as unnecessary.

Please keep copies of all blood test results, along with notes of your symptoms on the varying doses you may receive over this first phase, as the more information you have the more knowledgeable you will become and therefore have some input into future conversations and decisions on your treatment options.

[Hkm2281 in reply to pennyannie]

Yes I feel better now there is a plan. I just feel why couldn't the GP put me on that medicine in Dec but hay ho.

Yes it's a case of seeing how I get on now, he did make me aware of the side effects. Thank you, support is very important xx

[asiatic]

Block and Replace is a good choice but I would be concerned at being left 5 months before bloods are checked. When I was changed to B and B I was started on 20mg. Carbimazole. Within a few weeks I was very Hypo and my TSH shot up to 39 and fT4 below range at 9. I felt very unwell and saw my GP who added in 100mcg. Levothyroxine. 4 weeks later my fT4 shot up to 33, well over range and all my hyper symptoms returned. Over the next 5 months I needed many dose adjustments. Fluctuating between hyper and hypo caused my TED to worsen. This hopefully won't happen with you but listen to your body and see your GP asap if you feel unwell as a lot can happen in 5 months !

[Hkm2281 in reply to asiatic]

Obviously I had read on her advice fo have bloods after 6 weeks of having carb. He was adamant it was ok to wait. How will they know how much thyroxine to take?

[Graves1234]

That’s pretty much how my appts. went - just took notes on how I was feeling and I had blood tests every 6 weeks though only TSH T4 and T3.. this went on for 18 months and then I came off Carbimazole for 6 months . They test again to see where I was and went from there.

[Hkm2281 in reply to Graves1234]

I wouldn't mind if he agreed to regular blood tests, I'm just being left!

[Graves1234]

I really think 6 months should have been 6 weeks as they need to establish whether you are on the correct level of carbimazole.... I had my altered a few times until they were happy with the range.. My suggestion is that you query the months and was it meant as weeks as your levels will need to be checked.

Good luck

[Hkm2281 in reply to Graves1234]

No unfortunately it was definitely 5 to 6 months he said its just not necessary before and hes a professor lead of the endocrinology department!!

[Graves1234 in reply to Hkm2281]

Hmmm well 5-6 months seems an extremely long time if the amount of carbimazole is the incorrect amount.. I started on 10mcg a day but ended up on 20mcg..

[Hkm2281 in reply to Graves1234]

Kirsty had my appointment through its the 11th dec. Oh man that seems way too far away!!

[vocalEK in reply to Hkm2281]

Then he is obviously an expert. To find out which kind, read this: bmj.com/content/bmj/329/748...

[helvella Administrator Thyroid UK in reply to Graves1234]

With block and replace, the amount of carbimazole is not critical. The intent is for it to suppress the thyroid completely and 40 milligrams will usually do that.

Once the existing high levels of thyroid hormone drop, rather than reducing the carbimazole, simply add in levothyroxine. Amount something of a guess. As is waiting six weeks before doing so.

[Hkm2281 in reply to helvella]

Ok well then that makes sense, so my levels arent necessarily that important it more about the balance. That's fair enough then if there's no exact science. Thank you

[helvella Administrator Thyroid UK in reply to Hkm2281]

That is broadly right. But...

1) The change from having too much thyroid hormone to not enough can be sudden and significant. It might take six weeks - it might not take that long. Think of putting the brakes on in a car. You stop. You don't really need to use a stopwatch or the speedo to know when that happens!

2) The 150 micrograms of levothyroxine is just a guess. It could be too little or too much. Don't believe that it is possible for anyone to know how much you need. If you are not being tested then try to track your health and how you feel - run a diary.

[Hkm2281 in reply to helvella]

Yes definitely I will. I mean if I feel that I'll I can always go to my GP surgery and have bloods done there. We'll see what happens, I'm just glad I have medication now as I was left for so long with nothing. Thanks

[Graves1234]

You won't be on LevoThyroxine for Graves unless you need RAI and the RAI makes you hypo, it may not or you have a thyroidectomy in which case I think you will need levo thyroxine or similar. But your Graves may settle after 18months meds... mine didn't but your may ..

[Hkm2281 in reply to Graves1234]

He said I would start taking thyroxine after 6 weeks, block and replace treatment or something. Yes he said to take this for 18 months then I can try stopping, fingers crossed.

[Graves1234]

Hmmm ... well I can only say I was on Carbimazole until I had RAI which then led me to require LevoThyroxine.. because of too much RAI which made my hypothyroid whereas I was Hyperthyroid initially with Graves. Were you made aware of your levels of TSH T4 and T3 when told you were Graves or have you already entered these..

Best regards

[Hkm2281 in reply to Graves1234]

These were in jan

TSH 0.01 (0.1 to 4)

T3 22.4 (3.5 to 6.5)

T4 61.3 (9 to 22)

TRAb 32.1 (0.1 to 0.9)

[asiatic]

Each Endo has his own approach. Your's is giving you a very high dose of Carbimazole to completely block your thyroid. He will probably then add in 100 mcg. Levo to replace what is not being produced. It is very important you are monitored at least every 6 weeks during this time usually by your GP as you will probably need a few adjustments and in 6 weeks you could become very hypo.. I did not feel I needed such a high dose of Carbimazole as there is more chance of side effects. 10 mg. was enough to block my thyroid. You need to experiment with doses until you feel well and your fT4 and fT3 are about mid range. Your GP can contact the endo for advice on any changes.

[Hkm2281 in reply to asiatic]

Yes thank you, my GP Is pretty good. Maybe it was just everything with coronvirus. I would imagine outpatients will be shut by mon