Idiopathic Itch

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Dear reader,

This is a call out to Graves companions, isotretinoin takers, experts and medical professionals - I am experiencing an unbearable itch around my neck and upper back for 6 months now, and more importantly, much difficulty concentrating at work (financial analysis). My boss has informed me of my lack of problem solving skills three months into my probation (new job) and has asked if I would like to leave.

The itch is inconvenient because it occurs under warm, stuffy, crowded, undue stress, and mostly in poorly-aired environments - getting around and to work has been a problem. There are however no visible signs on the skin, only mild redness on the skin upon scratching but no raised bumps.

The itch started when I was on isotretinoin x 30 mg daily morning, more than halfway into the course. (I have been on a few courses of isotretinoin since 2009, with acne vulgaris reappearing despite completion of x10mg planned courses.) I have since stopped consumption of isotretinoin since 07 Jan 2014. The itch persisted, and not improving despite consuming cetirizine, telfast + prenisolone, and desloratadine.

A positive blood test was reported for hyperthyroidism when we were finding the possible cause of itch. The endocrine doctor has not identified the cause for the itch, and the only solution is to consume antihistamines at x03 daily. I will add here that it can be a 9 when the itch occurs (1 - 10, 10 being the most unbearable) - have sporadic suicidal thoughts but have learnt to fight from it, which is a good thing.

This is a summary of my records with some observations over the years. I attempt to document as much information as I can recall, without overstating unnecessary information.



neck, back itch - 6 months to present

heat intolerance - 1 year to present

hand tremors - 2 years to present

fatigue - 6 years to present

trouble sleeping - 6 years to present

nervousness - 9 years to present

irritability - 9 years to present


frequent bowel mv - 2 months to present

weight loss (3kg) - 1 year to present


No goiter

No Graves ophthalmopathy

No voice changes


Blood Work - 17 Jan 2014

Haemoglobin Determin. 11.95 L G/DL (N 14 - 18)

MCV 65.67 L FL (N 76 - 96)

MCH 20.11 L PG (N 27 - 32)

MCHC 30.63 L G/DL (N 32 - 36)

Lympho % 43.66% H (N 16 - 40)

Neutro % 42.53% L (N 48 - 80)

(not mentioned items in full blood count are within normal range)


Blood Work - 04 Mar 2014

Creatinine = 61.00 L umol/L (N 65 - 125)

TSH < 0.02 L mIU/L (N 0.45 - 4.5)

Thyroxine, Free (FT4) = 32.00 H pmol/L (N 10 - 23)


Blood work - 14 Mar 2014

TSH Receptor Ab = 4.2 IU/L (Normal < 1.0 IU/L)

T3, Free = 7.1 H pmol/L (Reference Interval 3.5 - 6.0)

Thyroxine, Free = 26 H pmol/L (Reference Interval 8 - 21)

TSH < 0.01 L mIU/L (Reference Interval 0.34 - 5.60)


Ultrasound, Thyroid - 14 Mar 2014

The isthmus measures 0.1 cm.

The right lobe measures 5.2 x 2.1 x 1.3 cm.

The left lobe measures 5.2 x 2.3 x 1.2 cm.

The gland is normal in size and shape. It shows heterogeneous echogenicity but normal vascularity. Few bilateral thyroid nodules are seen.

At the right upper pole there is a 0.3 x 0.3 x 0.1 cm hypoechoic nodule, no suspicious features.

At the left upper pole there is a 0.7 x 0.4 x 0.3 cm, hypoechoic nodule, no suspicious features.

At the left upper pole there is a 0.4 x 0.3 x 0.1 cm cystic nodule, no suspicious features.


Thyroid returns heterogeneous echogenicity (?thyroiditis?

Multiple thyroid nodules are seen, these do not demonstrate any suspicious features.


My concerns are

(i) I heard Carbimaole / PTU will cause itch when first consumed, how can I work on avoiding this?

(ii) Is there a way to recover from the concentration/memory + alleviate the itch? If not does that mean I will have to find a way to work freelance at home? (humid country 0.79 with overpopulation 7301 px/km2)

Would gladly hear your views and advise. Cheers.

1 like, 21 replies


21 Replies

  • Posted

    Are you in UK or USA? I ask because I cannot believe you have had to suffer theses symptoms for such a long time! I have had hyperthyroidism twice in 3 years and both times the symptoms have been alleviated by "block and replace". However as it is likely to keep reoccurring I have been given the option of having the thyroid removed, which I have agreed to. This is a personal choice as I cannot stand to keep having these horrible symptoms even for a couple of months so I do not know how you can bear it for 2 wonder you are suicidal. Change your doctor!
  • Posted


    Wow. I feel for you. I have Graves disease and aside from my TSH which was less than 0.01, my T3 and T4 were elevated at diagnosis but not as much as other Graves patients that I know so I was lucky that I was diagnosed early in my disease. I had an itchy lesion on my forehead at one point that was caused by stress and I rubbed it with Cortisone scalp lotion and it quickly went away. I had it for months, it was biopsied with no definitive results but I know it was my immune system attacking me and when I put the lotion on, it was telling my immune system "False alarm, go to sleep". My brother and I both have had itchy inner ears which we scratched, would get infected, treated with antibiotics and we would start all over again until I swabbed my inner ear with the Cortisone Scalp lotion and it stopped the itch and hence the scratching. My brother does not have Graves but we had the same ear condition and his responded to the lotion as well.

    So I would recommend you ask your doctor for Cortisone scalp lotion and rub the itchy areas with it for starters.

    Also, my TSH stayed at less than 0.01 for 2 years until I added L-carnitine to my regimen. Regular L-carnitine only raised it to 0.05 but when I used Acetyl-L-carnitine, my TSH came into the normal range at 0.78. I was unable to get Acetyl-L-carnitine for a year and my TSH quickly dropped again below normal but never to less than 0.01. Then when I was able to get the Acetyl-L-Carnitine again my TSH rose to 1.4. When I first took the L-carnitine, I was able to cut my Methimazole dose to half.

    So, I would recommend you start with Acetyl-L-Carnitine 500 to 1,000 mg daily added to your thyroid treatment medication (take at the same time as).

    I have suggested this to others on the Board and their hyperthyroid symptoms abated, especially the muscle problems, sleep problems and brain fog.

    You have to have frequent blood work though because the Acetyl-L-carnitine combined with your antithyroid meds raises the TSH very quickly., I am now considering going on regular L-carnitine again instead in order to stabilize my TSH results where I want them.

    There is a great article you can Google on the use of L-carnitine in hyperthyroidism and Graves patients by Dr. Salvatore Benvenga from Italy and show it to your doctor. Here in Canada and the States, you can buy regular L-carnitine and Acetyl-L-carnitine in health food stores but in Europe, perhaps Britain also, it is a prescription item.

    Others on this board have reported also on the use of a herbal medication called ashwagandha as very beneficial for our disease.

    If you are willing to try these suggestions, it is important that you work closely with your doctor, have frequent blood thyroid test monitorings and adjust your dosage of both your prescribed antithyroid meds and the carnitine meds appropriately.

    If you do this, please let me know how it works for you by messaging me privately or posting to this Board.

    In addition to these suggestions, it is important that you treat stress with stress reduction techniques like breathing, meditation, yoga or whatever works for you for stress reduction as our diseases are triggered by stress.



  • Posted

    It sounds like also the acne problem could be caused by hormonal imbalances, in which case the Ashwagandha will help with that immensely. Veronica has posted on this board about it and other herbs that are excellent for our problem. You may want to scan the Board for her previous postings.


  • Posted

    Sounds like my symptoms before I had my thyroid removed :-(

    I'm sure its not medically correct but I found that a small amount of canesten cream worked wonders for the itch - on my left ankle and top of left foot.......

    Thyroid problems are a Nightmare !

    Remember - take thyroxin( after thyroid removal etc ) in the morning when you get up, NO MILK for an hour and allow 30 minutes before you have any food or drink except water.

  • Posted


    I have the itching that's driving me crazy. Mainly face behind my ears eyebrows neck chest and my boobs. Norah's like you said, just the redness from the itching. I also have been diagnosed with Graves' disease. I take 20mg carbimazole. My endo put this up for a month and the itching stopped. He has since dropped it and the itching has come back with a vengeance. It stops itching for a few days, then I'm left with really dry flakey skin. Then the cycle stars all over again. Not a nice and embarrassing. Hope you get sorted soon and start to feel well again. X

  • Posted

    I had terribly itchy palms and feet but only when I was given too high a dose of Methimazole (similar to Carbimazole.) I think on a minimum dose it would be fine. I was also given a topical gel for the itch. I'm not sure what kind, probably either like either a cortisone type or Benedryl.

    Have you been able to stop taking the isotretinoin? or have a blood test which might show a possible drug reation to it? If you have stopped taking it, is the itch still present?

    Confusion, often called "brain fog" is a common symptom of hypothyroidism... but it may also happen when the thyroid hormones are reduced too quickly.

    Do you also have a fast pulse or high blood pressure?

    Were you tested for thyroid problems at all before, or while developing any of your symptoms of the last 9 years, or any time before this most recent test?

  • Posted

    Hi Carol,

    I am in Singapore but posted here because we do not have such forums. Note that I didn't know if the observations were symptoms to an illness, it could have adrenal fatigue, or was Graves undetected over those years. I recently found out that my dad was diagnosed Down syndrome during a health checkup some ten years ago, though he functions perfectly normal - not sure if it might be a contributing factor. I am seeing the endo specialist tomorrow, shall update you if he recommends to have them removed! (My ultrasound report above shows it is benign however, don't know if removing the thyroid will help but definitely open to the option).

    I suppose I excused myself to be under stress too much (and that it is an acceptable by-product of our society).

  • Posted


    I guess I will take the meds the doctor will prescribe and ask for the cortisone scalp lotion to go with. I am currently using a 3% menthol cream which helps me get by, it numbs but doesn't have the subdermal application cortisol has which I would gladly like to try.

    I shall request for Acetyl-L-carnitine when I see the doctor tomorrow. Will also tell them about ashwagandha. Let's hope they are open to the suggestion of having them alongside their prescription. Will show them the paper by Salvatore Benvenga as well. Update you on my progress and bloodwork again!

    I'm thinking, must I put an end to my bust schedule? I have been listening to classical and jazz music these days, will attempt to pick up meditation and digital painting soon but striking goals off my checklist seem difficult for me.

    Yes, it will be good to solve the underlying problem at hand, ie. stress.

    • Posted

      Your doctor will not prescribe the carnitine or endorse its use as he knows nothing about it.  You get this in health food stores.  Same about the Ashwaghanda.  The other thing that helped me when I had an itchy rash due to autoimmune causes was an antihistamine drug called Atarax (generic name hydroxyzine) which needs to be prescribed by your doc.  If you start on the Carbimazole and take the acetyl-L-carnitine with it, it will work better and you will require to lower the dose as your lab results improve.  This you have to work with your doctor to do.  
  • Posted

    Hi Ross,

    I will try to get hold of the canesten cream. On the morning routine thing, I observe similar habits! Figure that the body needs time to 'boot up' before it is ready to digest food properly but needs water not to feel hydrated upon waking up. Do you also agree that milk tends to increase hormonal levels?

  • Posted

    Vicki, thanks.

    I guess I will have to take the carbimazole when my doc prescribes them (before the confirmation bloodtest was done) and put effort to have more frequent bloodwork done (to help titrate the thyroxine levels better). Do moisturisers work for you? I am using "Aqueous Cream", thought the skin specialist also recommended "QV cream", a very think water-based moisturiser for the body. Isn't it difficult to get around with all that problem? Hope you are getting out of the cycle soon

  • Posted

    Hi Fern,

    I have since stopped consumption of isotretinoin since 07 Jan 2014. The itch persisted, and not improving despite consuming cetirizine, telfast + prenisolone, and desloratadine.

    I have a weak pulse and slightly lower bp.

    Was not diagnosed thyroid or any autoimmune disorder until two weeks back. Only been able to work backwards these few days and truth be told, hindsight is 20/20.

  • Posted

    Hi. The doc gave me steroid cream before the diagnosis. It helps far around 20 minutes after applying it. Then the itching starts again. But hey ho I can't gave everything, it's of all the other symptoms have gone. For me the eye swelling was more upsetting and the thyroid eye disease. I look like I've been in a fight. And lost. 😖
  • Posted

    There are two main concerns the endocrinologists seem to have if you are hyperthyroid or have Graves' Disease: 1- Racing heart with potential "thyroid storm" and death; and 2- Bone loss and osteoporosis. I know they have checked my BP and resting heart rate, and I know that my pulse was very high when distinctly hyperthyroid, and sometimes about 3 to 4 hours after taking Cytomel it elevated to around 90 to 95. Conversely it seems like BP below 100/60 and pulse slower than 60 seems to happen more often when I am hypothyroid.

    I just did a Google search for "isotretinoin effect on thyroid" and found this information from NCBI (National Center for Biotechnology Information) which is a site I trust: I am trying to avoid actually sending a link to the site, however, because it tends to delay the posting of the comment.


    "There are many adverse effects that have been described for isotretinoin. To the best of our knowledge, this is the first report of a possible association of oral isotretinoin intake with autoimmune thyroiditis and ocular myasthenia gravis (OMG).

    "Case Presentation

    "A 19-year-old Caucasian male, who had used oral isotretinoin ... for the previous six months, was referred to our clinic." [talking about eye problems] ...


    "Autoimmune disorders may be triggered by oral isotretinoin treatment. Clinicians prescribing isotretinoin should be aware of the possible association between isotretinoin intake and concomitant autoimmune thyroiditis and OMG."

    There was nothing in it about itching that I saw, however, so I don't know how valuable that information is.

    I just hope you are able to deal with your situation well, and make the right, informed decisions about your health.

  • Posted

    Not sure about the hormone levels but changing the timing and taking the pills without my morning brew ( milky tea ) literally changed my life and in 12 hours. For over 2 years I'd felt vacuum packed into a chair after just a small amount of physical activity - now I can do a 10 hour slog with almost no effects and do it again the following day. Its absolutely wonderful to be active again - and it seems to be just a matter of timing and no milk for a while after taking the pills.

    The information about this came from a nutritionist who is also a senior member of the National Federation of Spiritual Healers - she had the same issues, did a lot of research and gave me a 10 second description by phone about how milk prevents thyroxin being absorbed. A truly miracle cure, for me at least. Now that's sorted, I can honestly say that as a fairly active 50 something bloke, I am back to normal with no ill effects from not having a thyroid. 3 months ago I was resigning myself to life as a couch potato.

    RE the itch - I had dreadful issues with one foot - to the point I couldn't wear a sock or shoe - I guess its the cortisone in the canesten that calms things down, but it was dramatically effective for me. Occasionally if I am inactive and don't adjust the thyroxin , it can flare up but is easily controlled with a smear of the stuff.

    As an aside, my specialist - who is a very well known and respected consultant said that he had only seen one thyroid storm in his entire career and that the chances of it were minimal. Obviously it can't be ruled out, but he didn't seem to think it was a serious issue and there was a much higher risk of heart problems. I had the full whack of symptoms and my thyroid was really going for it despite the medication, so it had to come out. All a bit scary, but I was eating a jacket potato the same evening after a 3 hour op and home in 48 hours - if it hadn't been for the total lack of energy for a couple of years afterwards it would have been the perfect op !

    Good luck !


Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up