Anyone had rashes, possible psoriasis, after starting on Levo?

[Roulette26]

Had RAI in January, started Levothyroxine 50mcg in April. Developed a dreadfully dry and itchy scalp plus numerous other weird, itchy rashes on my body. Has anyone any experience of this. When first mentioned to my consultant he dismissed it, the endo nurse thinks it may be a reaction to the brand and is requesting a change through my GP. In the mean Time had a face to face with GP who’s referring me to a dermatologist. I’ve got a private appointment with a trichologist, my scalp is unbearably itchy plus I’m losing hair! Couldn’t get a private dermatologist. I’ve tried all the recommended over the counter remedies, coconut oil etc. Now on 100 mcg Levo.

[pennyannie]

Hello Roulette and welcome to the forum :

Primary hypothyroidism caused by RAI is known to be more difficult to treat.

RAI is known to " trash " vitamins and minerals:

It is essential that you are monitored and dosed on T3 and T4 blood test results with the intention of these two vital hormones being balanced and both being in the upper quadrant of their ranges.

Your feedback loop is now broken and aTSH blood test result seen in isolation does not offer the information necessary to maintain your health and wellbeing.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3.

T3 is said to be about 4 times more powerful than T4 and I read most people use about 50 T3 daily, just to function.

If being treated on monotherapy with Levothyroxine your body needs to be able to convert this storage hormone into the active hormone T3.

No thyroid hormone works well if your vitamins and minerals, especially ferritin, folate, B12 and vitamin D are not maintained at optimal levels and this is an area that needs looking into and possible self supplementing as you may well be in the range, not qualify for NHS prescription but not high enough to support thyroid hormone replacement conversion.

So, you will see from the above that if on T4 monotherapy you have lost your own natural production of T3 and basically been down regulated by some 20% of your overall wellbeing.

Some people can get by on T4 alone : some people simply stop converting the T4 into T3 at some point in time ; and some people simply need both these essential hormones dosed and monitored independantly to restore and acceptable level of health to the patient.

If you have Grave's Disease and don't know of the Elaine Moore Graves Disease Foundation website it is worth dipping into to learn about this poorly understood and badly treated autoimmune disease.

I have managed to turn myself around and to better health thanks in the most part to this amazing forum and Elaine's book and website. I'm with Grave's post RAI in 2005 and now self medicating as I found little help or understanding in the medical mainstream NHS.

P.S. It could just be the Levothyroxine brand you are taking doesn't suit you and causing the skin iritation : there are several brands available so there is choice, and some contain certain fillers that upset some people.

Do you have any blood test results to share with us ?

[Roulette26 in reply to pennyannie]

Only have my recent standard blood work,

TSH 8.71

T4 18

Thanks for the lengthy response. The amount of info I get from the consultants is minimal. I enquired about vitamins and minerals when I was hyperthyroid before RAI, was told “we don’t recommend them”.

[Jeppy in reply to Roulette26]

...you will get fab info & support 👍🏼

[pennyannie in reply to Roulette26]

Well, I guess that's why we are here, it's really ridiculous, as you would think they would prefer their patients getting better rather than going in reverse, but then maybe they would be out of a job !!!!

Your TSH is too high, this needs to be down at around 1 or lower:

Do you have the range for the T4 and did you take your medication before you had the blood draw ?

If you check out the Thyroid uk website, the charity who support this forum, amongst other things, you will find a list of private companies who will undertake the blood tests and run the appropriate full thyroid hormone panel, plus the vitamins and minerals, if your doctor can't or will not help you, and then you can put the results and ranges, up on here, and you will be talked through anything that needs to be actioned.

It's recommended you take your daily T4 after the blood test, and this should be a fasting blood test, taking just water, and as early as possible in the morning.

It's a massive learning curve and you are where we all started off, but it is a start, and you'll pick up a lot by simply reading other posts and the answers they receive.

[Jeppy]

Hi. I had very itchy time it did go.

My process was changing brand twice i ended up with activas Teva was often mentioned as an iritant when they changed fillers, fillers may be the cause

Also i had low adrenals i suspect my rash was connected here Although docs hadnt a clue it all settled down eventually. I saw Dr Peatfield at that time and he also didnt know.

Is rash also behind ears & neck, mine was, i ask as saw this on internet as adrenal insufficiency but not a known web but looked identical to mine

Best wishes