Help! sore scalp and losing lots of hair...

[mrsthyroid]

I have graves disease and and am currently on my second round of treatment after relapsing earlier this year. Currently on 10mg of Carbimazole per day and over the last 6 weeks my scalp has been very sore to the touch and it feels like it's getting worse (If I brush a knot out of my hair I feel like someone has yanked a huge clump out!). I've been losing loadddddds of hair, this happened last time I was on treatment so I kind of expected it but the soreness is worrying me. Not sure if it's just an effect from having abnormal levels or whether it's an effect of the medication.

Any one else experienced this? x

I'm on the waiting list for a thyroidectomy...

[M1zzM4zz]

I have just started 15mg of Carbozimole and I am having the same problems although my head isn't sore to touch anymore just clumping is still apparent so I avoid brushing and washing as much as I can. I am a bit of a mess anyway so my hair doesn't even get noticed a messy bun is the way forward for me, for now.I bought some caffeine shampoo and I now have little new hair growing here and there so maybe give that a try and u leave it on ur scalp for two mins at least and I think this also soothes ur scalp I may be wrong but I up for trying anything right now x

[mrsthyroid in reply to M1zzM4zz]

Thank you x I've been using Alpecin caffeine shampoo for a couple of weeks now and just trying to wash as little as possible, my head definitely doesn't feel as tender as it did a few weeks ago which is good x

[Angel20]

10 mg carbimazole is low dosage, try splitting the dosage into 5mg morning and 5mg in the evening, also if not already taking you need vitamins, to boost your immune. You may find this helpful take also together with your carbimazole 500mg l-carnitine morning and evening in total 1000mg l-carnitine. What the l-carnitine does is push up your tsh it will not happen immediately but it helps longerterm.

[mrsthyroid in reply to Angel20]

Thank you - I'll have a look into that! I've recently changed to 10mg one day followed by 5mg the next so going to see how I get on with that, my levels have balanced out a bit so reducing my dosage a little x

[Angel20 in reply to mrsthyroid]

I have only been taking carbimazole for 16 days so far, its early days for me to see whether it is working or not, hence adding the l-carnitine take them together. It can take up to 6 weeks to see whether 10mg carbimazole will raise my tsh and bring down ft4 and ft3, I have however, noticed a slight improvement since starting carbimazole.

[Lora7again in reply to Angel20]

The TSH can take months or even longer to rise and lags behind, sometimes it never does. Mine is 0.38 at the moment. I think mine no longer works and will always be low. As long as your T4 and T3 are in range they are what count.

I just copied this from Elaine Moore's site.

Course of Graves’ diseaseIn the early stages of Graves’ disease, for instance, patients typically have alternating periods of symptoms and periods of remission. These symptoms can change in their degree of severity over time, and the predominant symptoms can change. In about 1/3 of patients with Graves’ disease symptoms spontaneously resolve and patients may remain in remission permanently or for many years. Other patients may continue to have periodic episodes of symptoms and over time, their thyroid hormone levels can rise. When this happens, symptoms of hyperthyroidism become persistent. In Hashimoto's thyroiditis, when sufficient thyroid cells are damaged or destroyed by inflammation, thyroid hormone levels continue to be low.

[Lora7again in reply to Lora7again]

This is interesting because I have suffered with hay fever since I was about 10 and I didn't realize this. It is also off Elaine's site.

ALLERGIES AND OTHER CAUSES OF GRAVES’ DISEASESeasonal and food allergies as triggers in Graves' disease© Elaine MooreThe immune stimulation caused by the allergic reaction causes immune system changes that trigger and worsen Graves' disease. Allergic TriggersAllergies are a well-known trigger in the autoimmune hyperthyroid disorder Graves' disease. The sustained hyper-alert response in people with seasonal or food allergies leads to an erratic autoimmune response. In Japan allergies to cedar pollen have long been considered the most significant contributor to Graves' disease. In the United States seasonal allergies to ragweed, pollen and food allergens are considered common contributing factors for Graves' disease. Allergic reactions in subjects worldwide have been shown to contribute to the development of Graves' disease and to cause disease flares in patients on anti-thyroid drugs. Relapses in patients already in remission from Graves' disease are also linked to allergic triggers. The mechanism in which allergies trigger GD can be demonstrated with blood tests

[Lora7again in reply to Lora7again]

Other stuff that can trigger Graves'

People with food sensitivities can have an array of atypical symptoms such as behavioral disturbances, mood changes, bloating, indigestion, nausea or constipation that they don't associate with a particular food. Gluten sensitivity is much more likely to occur in patients with autoimmune thyroid disorders. Yet, diagnosis often remains elusive unless symptoms are severe.A food diary is helpful in determining if food sensitivities are a contributing factor to relapses and flares in Graves' disease. Eliminating certain foods for several weeks can also help pinpoint food allergens if symptoms improve. With undiagnosed seasonal allergens, Graves' disease flares or relapses that tend to occur at the same time of year suggest an allergic event.Triggers of Graves’ DiseaseCommon triggers for Graves' disease include stress, allergens, excess dietary iodine, lowselenium levels, sex steroid hormones, and infectious agents. Infectious agents can trigger autoimmune disease and cause flares related to the organism itself or the immuneresponse launched by the infection. Antibiotics and other medications used to treat infection can also alter the immune response.

[mrsthyroid in reply to Lora7again]

I was reading about this yesterday and am considering doing a home test for food allergies to see if there’s anything I should avoid... just struggling to find a company that have good reviews!

I also have thyroid eye disease so want to do anything I can to stop this in it’s tracks as don’t want my symptoms getting any worse. I’m just awaiting my MRI scan results to see if this is still in its active state,

I need to find a resource of what should / shouldn’t be on the menu!

[Lora7again in reply to mrsthyroid]

The only thing I avoid is coffee and too much alcohol. I did try going gluten free for about 6 months but it did not help. I have been lucky and although I did have a slightly bulging eye at the beginning I did not get TED but my eye would twitch for days. However it has affected my nails and my hair in the past. At the moment one of my nails has slightly lifted off its bed which can be a sign that my levels are getting too high. I really need a blood test but I am too scared to go to my local hospital because of the high coronavirus numbers in my area. I have heard you are more likely to contract the virus if you attend a hospital so I am avoiding them for now.

[mrsthyroid in reply to Lora7again]

I took my blood test forms to my doctors rather than going to the hospital for my tests - it felt like a very safe place and clean and not too many people around. One in one out x

[Lora7again in reply to mrsthyroid]

Unfortunately my GP only tests the TSH even though I have Graves' disease written on my notes so I do my own private blood tests.

[Lora7again]

I am sorry I did not see your thread until now. Sometimes when your thyroid levels are moving either up all down it can cause your hair to shed. I have had 2 lots of extreme hair loss over the last 10 years and both times once my levels were stabilized my hair grew back.

How are you now?

[mrsthyroid in reply to Lora7again]

Hi Lora - I've recently changed to 10mg one day followed by 5mg the next so going to see how I get on with that, my levels have balanced out a bit so reducing my dosage a little. I had this exact thing on my first bout of treatment, hopefully it'll stop (or at least reduce!) if my levels get sorted x

[Lora7again in reply to mrsthyroid]

Because of the hair cycle you are losing hair from what levels you were at 3 to 4 months ago so usually hair loss resolves itself after 6 months. Unfortunately mine went on for 2 years both times because I had not removed the trigger which was that my thyroid levels were not right for me. I feel well when my TSH is lowish at 0.38 and my T4 is top of the range. I am not taking anything at the moment because I am in my second remission. My last one lasted 4 years but they can last a lot longer.

Have a look at Elaine Moore site because she has helped me a lot over the last 10 years.

elaine-moore.com/

[mrsthyroid in reply to Lora7again]

Thanks Lora - I’ve been having a good read through all of Elaine’s articles this morning! Definitely going to make a few changes to my diet / lifestyle x

[Lora7again in reply to mrsthyroid]

My hair stopped falling out over a year ago and it now looks ok. I think once your levels are right for you yours will do the same. I found it extremely distressing watching hundred of hairs drop out every day so I paid to have some hair extensions added by Lucinda Ellery. It was very expensive and I think there are hair dressers who are a lot cheaper. It helped me cope with having such thin hair and I didn't have to wear a hat all the time to hide my balding head.