Itchy itchy itchy!

[Scaredikat]

Hi, I've been on 50mcg Levi for a couple of years. During that time my skin has got more and more itchy. It's all over like my skin is crawling, no rash, no dryness, just gets itchy where anything touches and comes up in raised red marks. At first I thought it was just another symptom of the hypothyroidism as tbh the meds haven't really helped with symptoms despite my bloods being fine. I'm taking off the shelf antihistamines bit I'm wondering if it could be the levothyroxine? I was on teva to start with but changed quite early on to activis/ accord. Any links to itchyness/ histamine release before I start a quite restrictive low histamine diet? My docs just said allergy testing was a waste of time and I have to put up with it but it drives me nuts and not sure if the antihistamines interfere with the levo. Thanks!

[SlowDragon Administrator]

50mcg levothyroxine is only a starter dose

Blood should be retested 6-8 weeks after each dose increase

All blood tests should be done as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before test

Is this how you do your tests

Please add most recent results

For full thyroid you need to test TSH. Ft4 and Ft3 plus both TPO and TG thyroid antibodies. Also essential to regularly retest vitamin D folate ferritin and B12

What vitamin supplements are you currently taking?

[Scaredikat in reply to SlowDragon]

Hi Slow Dragon. Yes I follow all the advice on here, have the blood taken first thing in the morning before I take my tablet etc. I had my first check at 8 weeks and every 6 months since and been consistently in range. Last results were March - FT4 16 (range 11-22), TSH 1.73 (range 0.25-4). Tested positive for antbodies so its autoimmune. I dont take supplements so will ask for retest of vitD and B12 as been a while since i had those. It's not so much that I'm asking about though, more if my itching could be caused by the Activis/ Accord Brand levothyroxine? In reality my TSH was 6 when i was started on the levo so im really just borderline and sure my symptoms are stress/ adrenal related so maybe I could come off the levo and see if that stops the itching?

[SlowDragon Administrator in reply to Scaredikat]

Just testing TSH and Ft4 is inadequate

Ft4 is only 45% through range

Helpful calculator for working out percentage through range

Likely Ft3 is lower, as with Hashimoto’s we are often poor converters of Ft4 to Ft3

Recommend getting TSH, Ft4 and Ft3 tested

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

Come back with new post once you get vitamin results and full thyroid results

[Scaredikat in reply to SlowDragon]

Thanks for all this. I'll get some more tests done.

[Singoutloud in reply to Scaredikat]

I had itching with Mercury pharma which did calm a little when I changed to Actavis & Wockhardt. I already know I have a sensitivity to Acacia which is used as a filler/binding agent in some tablets. I'm trying to narrow nown other ingredients but anti histamines cause the same itching I'm trying to get rid of. I'm optimally treated with T3 only at the moment, most vitamins are at a good level. I'm not at the point where I'm going to start cutting food groups out of my diet but it might come to that. In the meantime a coat hanger to use as a back scratcher is my constant companion.

[Scaredikat in reply to Singoutloud]

Hi, thanks for this. I might see if I can change to wockhardt, just to see if it makes a difference; I've had a look and it has slightly different ingredients to activis. Thanks.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Levothyroxine doesn’t “top up” a failing thyroid, it replaces it. So important to take high enough dose. Typically that’s at least 100mcg per day

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

If left on too low a dose for long time it can be difficult to increase the dose. Many need to step up in 12.5mcg steps

[shaws Administrator]

A concerned and helpful doctor?

"My docs just said allergy testing was a waste of time and I have to put up with it "

I am not medically qualified but suggest you get a blood test, if you've not had one recently. I'd request:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Doses are usually increased by 25mcg every six weeks, after a blood test, until your TSH is 1 or lower and FT4 and FT3 should be towards the upper part of the ranges. The latter two are rarely tested but there's no harm in asking.

[thyr01d]

Hi Scaredikat, I recently read that, now here I'm a bit lost, low ferritin or low iron, not sure which, maybe both, can cause itching all over. Didn't mention a rash though. Also, have you tried looking up histadelia. So long (20 + years) since I read about this but histadelics suffers from allergies which apparently often respond to certain nutrients. Vitamin C does not help and folic acid makes it worse. The book recommends calcium, methionine, zinc and manganese (and possibly a drug called Phenytoin because it's anti folic acid). If you can find a book called Mental Illness and Schizophrenia, The Nutrition Connection by Dr Carl C Pfeiffer, it's in there and the book argues that Mental Illness often is not that at all but nutritional imbalance. Better check that his findings have not since been discredited.

[Scaredikat in reply to thyr01d]

Thanks for your reply and your recommendation. I'll have a look at that. 😊