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[Katemcgg]

Hi I was diagnosed in November of last year with Graves' disease and am undergoing block and replace treatment.im taking 20mgs of carbimazole twice a day and 100microg of levothyroxine in the last two weeks my hair has started to fall out quite badly has any one else experienced this .

[Valarian]

Hi Katemcgg. I’m on titration, and have been losing hair from my scalp for months (I think since before I began taking Carbimazole). On the plus side, I didn’t need to wax my legs at all last summer !

[Hidden]

Hi Katemcgg, I was diagnosed with Graves last April, I've been on block and replace for months. I've suffered hair loss and memory loss as my GP under medicated me for over 2 months, despite Endo writing numerous letters to them about it! I'm feeling a bit better since on higher Levo dose, hair loss is better so is memory, my hair is still very thin, but not losing as much. Waiting for date to have total thyroidectomy due to suspect nodules, hoping things will be better after that. Hope your hair loss slows down soon, maybe your thyroxine meds need increasing?

[redeyes2]

I have Graves too. Was wondering what is block and replace?

[Millea in reply to redeyes2]

Hi there. Block and replace is when you take a high dose of Carbimozole (enough to entirely stop the production of hormone by the thyroid) and then replace it with Levothyroxine. It can be prescribed instead of a thyroidectomy or radio-active iodine treatment - which either remove or destroy the thyroid. However all of the above render the thyroid inactive (or gone) which is not good if, as in my case, you suffer from Thyroid Eye Disease as well as Graves. Radioactive iodine is an absolute no no if you have TED. I am on a permanent dose of 20mg carbimozole with regular 6 week blood tests to monitor plus selenium daily.

[Lisa31SW in reply to Millea]

How do you know if you have Thyroid Eye Disease?

[Valarian in reply to redeyes2]

An alternative antithyroid therapy to block and replace is 'titration', where you start out on a high dose of carbimazole, then once your thyroid levels are within teh reference range, the dose is gradually reduced to the smallest possible (usually 2.5mg). You then stay on this until a year to eighteen months after you began the therapy, at which point, you stop it altogether to see whether your thyroid will function normally.

There isn't much to choose between the approaches from the outcomes perspective. With titration, it can take a while to get the optimum dose sorted, but by the end of the period, you've probably got a pretty good idea as to whether your thyroid is behaving or not. With B&R, your thyroid is effectively given a complete holiday, with synthetic thyroid replacing what your body would have produced itself, but at the end, you some straight off the high dose of carbi and the levo at the same time. In both cases, you need regular blood tests.

[Silver_Fairy]

You need to get copies of your thyroid test results. If you are undermedicated (Levo) you will begin to get hypo symptoms.

[trelemorele]

It sounds like they made you hypothyroid.

Hair loss I'd due to low or lack of thyroid hormones.

If I was you I'd check your TSH t4 and t3 levels. Don't relay on doctors telling you "bloods looks ok". Take the results and check for yourself.

You may need either lower dose of carbimazole and/or higher Levo separately or together.

[Katemcgg]

Hi thanks everyone i have a doctors appointment tomorrow and see my consultant in march . So I feel like I can ask some relevant questions .

[Valarian in reply to Katemcgg]

Main thing is to ask for a copy of your results, and if they change your meds, ask them to explain why they are doing this so you can judge whether they make sense.

With block and replace, the point is to prevent your thyroid from working, so if anything, you might expect them to increase the levo rather than reducing the carbi.

It's really difficult to differentiate hyper v hypo just by symptoms, because people are affected in different ways, and although some symptoms are perhaps more likely if you are hyper, others may experience them when they are hypo.

[Alexkjones]

I’ve had graves nearly 4 years now. Was on b&r for 18 months. I too lost some hair as they were late getting me enough Levo as I went too underactive ie tsh over 2.5ish but it did grow back. When I came off b&r and tried for remission I had 3 months of hell, with my body sending adrenalin shots to me daily, as the adrenal glands were picking up the slack I think. Not pleasant. My remission also failed within 5 months so then I’ve been on titration ever since. Currently on 2.5mg carbo a week switching to 5mg for the next week and then back to 2.5mg and repeat. All going well. Have however put on 3 stone over the past 4 years and diastolic blood pressure is now high. So bought a Fitbit at Xmas and trying to move more and take back some control. Have lost 1/2 a stone so far and generally feel pretty good. Still 2.5 stone to go but ill keep trying. At least the graves seem fairly stable rather than going from under to over active every 3 months. I’ve found a routine that keeps me fairly stable with the weekly switching. Alex

[cc251254 in reply to Alexkjones]

Well done Alex !

[Valarian in reply to Alexkjones]

Really well done !

Have they tried to convince you to go for RAI or thyroidectomy ?

[Alexkjones in reply to Valarian]

Not yet thank god. Endo is happy with me plodding along

[Alexkjones]

Ps. I have Now lost nearly 3 stone since Xmas still on the 2.5/5mg routine switching weekly. Blood pressure now normal. Just getting some minor eye bother now and dry skin on my elbows and knuckles. Anyone else get these symptoms? Alex