Awful itching all over

[jazzlover]

That is awful that they canceled your appointment!!

Could you trial some diet changes (low histamine or lower histamine foods) .. and even some anti-histamines to see if it helps?

Google is your friend ..... and we are too!

[irish]

I have been thinking and remembered some things that my hubby had to do that helped his itching. First of all, oils and fragrances on skin can really trigger itching. If you can find fragrance free skin creams this should help. Oils hold in the het of the body and will increase a persons itching. This is also true of vaseline. I worked on dermatology for a while and this is an old tried and true tradition.

Also, when you shower use just warm water as the warmer water draws the blood up into the skin and tissues and will really trigger itching. People will get such red skin and white blotches and want to scotch for hours. This is when an antihistamine helps. There is a newer antihistamine OTC now. It has been on the market by script for about 10 years and I use it often.

It is called Xyzal and the dosage is 5 mgm. This works like Benedryl with less side effects. Really helps with the itching and doesn't cause sleepiness. It may be more expensive but less sleepiness is almost worth it. I would check with the pharmacist and see if she has anything she wants to educate you on. Also, may want to know if you can cut the pills in half. Sometimes with spendy pills people will try cutting in half to see if the 1/2 tab helps them enough so that they can save some money. Need to ask about this though. Good luck. Irish

[Honeybee]

Thank you for your help Irish and folks.
I went out today and brought a natural or supposedly natural sunscreen, not tha I ever sit out in it but as I drive. It felt horriblso washed it of.
I have one bath a week anyway as I have always had dryish skin and now I jump on almost cool water,no soap and out again. I am wasting only loose cotton clothing. I am not sure if this is an allergy so to speak as I am not exhibiting running or inflamed mucous membranes. I have been taking an anti hodtami e on and off but it is of little help. I did look into mast cell activity syndrome but I do not think it is what is at foot here due to absence of other symptoms.
All I know is I went through the menopause at 52 and have sjogrens. There is an odd TSH blood test results but in the UK if you only test low TSH and normal t3and t4 they will leave it for 6 months!
Did buy some aloe vera gel and Aveeno so will see if it makes any difference. I am worried I will never get comfortable again.....i read so much on the menopause and the decline in sebum etc that given I have not been sleeping I felt that maybe that's it for me
I need to be able to see light at the end of the tunnel again and am wondering if although we do losethe sebum production due to oestrogen drop, perhaps I will balance a bit more again. HRT is a big fat no for me as there is too much breast cancer in my family and I have had no children which increases my risk again.
Oh another day to get through......
The pharmacist this afternoon did wonder if the auto immunity sjogrens was the problem.
Thanks anyway for help. I have googled myself into a stupor these last few weeks and apart from depressing myself remain no further forward. Am I am normally so positive
Xc

[Honeybee]

P.s apologies for the auto correct spellings in my last post.
I did buy some flax seeds today, poss boost hormones? And I will start myself off on fish oil again.
I am vegetarian mostly but do eat a little fish now and again.
I have strictly followed elimination diets in the past and for a long time but I ended up quite ill afterwards so I may have to think very carefully before embarking on another one. I am quite slight anyhow. I researched anti histamine diets but as anti histamines make mo difference whatsoever I am a little caitious about that one. I do not each much sugar , drink or smoke. The only thing I can think of is I was taking and only once a week, 2 codiene phosphate tablets. So opioids are a prob for itching but 2 tablets a week which where stopped some weeks ago, I think I would be diverting energy in the wrong direction if I barked up that tree.
Xx

[Honeybee]

Just an update on the ridiculouse itchy scratchy skin episdode.
Still incredibly uncomfortable, seems impossible to imagine I will ever get my old more comfy skin back.......
My GP dismissed the TSH result as I knew she would. Nobody will even look at it without the T3 and T4 being abnormal, so with just the TSH levels slightly low, meaning its actually over producing, I have to wait and request another blood test a few months away. She even said there is nothing wrong with your thyroid, the tests are not that great, I am not so sure on that and have unfortunately been here before with Dr's. Before I was diagnosed with Sjogrens I was even labelled as having a somatic disorder, not something anybody wants on medical notes as it invariably unfavourably influenes other health care providers. She was very insistent I tried HRT and I reluctantly agreed, my menoause was over TWO years ago and I have not had any problems thankfully.
Personally after much research I am thinking the persistent all over skin discomfort is a little out of proportion for a drop off in oestrogen, sure itches and dry skin do happen but my skin feels as though it is having scratchy wool held against it all the time. Its very uncomfortable.
I want to think this will end, it has to end and I am hoping that it is indeed a sjogrens flare of some sort, I really do.
I will give the hrt a month as so far it has flared my IC to an extent not experienced fo 20 years, and I suspect that  nasty pain in my pelvis is the synthetic oetrogen fuelling endometriosis which had disappeared over the years. My GP is quite obsessed with hrt anď has oft?n mentioned it.
I am trying several approaches, diet etc and in the last week it has sl?ghtly ramped up. Frustrating x

[araminta]

So sorry you're still having this problem.   I can't think of anything else to suggest at the moment, but if I hear of anything I will of course let you know.  Good luck with the HRT.

[irish]

I do want to mention that the soap or detergent we wash out clothes in can cause a person to itch terribly. I had to wash all my hubbies clothes in a very mild soap. I used Lux liquid but I don't know if you have it in GB. Also, you would do well to see an immunologist as they deal with autoimmune, immune deficiencies and allergies. These three medical problems are very closely related and it is amazing what this type of specialist can do.

Itching can accompany any autoimmune disease just check out all the literature on line. So often body rashes and itching show up as the first symptom of some autoimmune diseases. Also, if you see another doctor you might want to ask about having a blood test called TPO. This is a test that measures the peroxidase in our system that is elevated when we have Hashimotos. Hashimotos is an autoimmune thyroid issue. One doesn't need to have elevated TSH to have an elevated TPO. Now, many doctors may not agree with that but there is much literature out there about this.

Remember that many autoimmune diseases are also accompanied by Hashimotos and hypothyroid. Also, just about all of us with autoimmune disease have been called a little crazy at times. I have psychiatric on my medical records....who cares. After I was diagnosed that answered that question. Doctors need to be more careful about throwing those diagnoses around. It does make it hard for us to pursue medical care as we have to be so darned careful how we say things to the doctors. Good luck. Irish

[jazzlover]

That is so terrible that they won't take care of your low TSH. Mine was not even showing up as blatantly low and I am being treated with Armour Thyroid. It does help a lot of symptoms.

It also affects the itching.

I take a combo of H1's and H2's .. I take generic Xyzal (I get it by prescription so it is cheaper) and Pepcid. The combo helps block the histamine being over-produced by the body. It should also help your IC.

Maybe you could also try Quercitin for the mast cells? It's natural.

[Linda196]

TSH is Thyroid Stimulating Hormone, so a low reading indicates sufficient or too much thyroid hormone; as the amount of available hormone decreases, the TSH increases to stimulate the glands to produce more, so a low reading , especially with normal T3/T4 usually indicates that the levels maintained synthetically are sufficient.

[Honeybee]

Sorry Linda, forgive me but I am not quite sure what you mean? Do you mean that I have nothing wrong at all with the thyroid and the TSH test was completely meaningless? I understand the bit about T3andT4 as these are indicators. But when I rang the thyroid association they said that the TSH on its own can be an indicator of a subclinical level of distinction, so now I am doubting what they say! Oh I really am confused as we were going to pursue this with my GP.
What to do.....

[Honeybee]

Okay. So that is the thyroid ruled out, those TSH tests are clearly pretty confusing and I do tend to trust what you guys with your years of knowledge do say, so thank you Linda. I will stop thinking it could be subclinical start of thyroid.The thing I was thinking was my Mum developed thyroid disease at exactly to the age I am now but just because my Mother has it and I have Sjogrens do not really mean much I guess.
So the itching worsened overnight and I will have to think again but at least I will not bother my GP with the thyroid thing.
Thanks to Irish and Jazzlover for the good advice.
Honeybee x

[Linda196]

I hope you don't take my post as a medical diagnosis because I'm surely not a doctor! My meaning was, in the light of you taking Thyroid supplementation, and having normal T3/T4 values, it could very well be subclinical hypothyroiditis, but that isn't necessarily a Thyroid issue. It may be over supplementation to a normal thyroid.

I didn't see if you have any hives with the itching, which would be a very good indicator of MCA or other AI mediated itching.

I didn't actually realize this until I was doing some research based on your question, but the incidence of autoimmune puritis (itching) in Sjogren's Syndrome is 42-53%! https://www.frontiersin.org/articles/10.3389/fimmu.2019.01303/full  scroll down to the section on Sjogren's Syndrome.

[Honeybee]

Linda
I have pm'd you.
Sorry I did not mean to burden you with my "thinking aloud" in placing your advice above medical advice, although to be honest it is probably just as relevant!
I am going to pursue the thyroid on thinking again, another test in a couple of months is needed really, if the tsh remains low, I will insist on an endocrinologist. I owe myself that one.
I have stopped the HRT as I am not at all happy with the state of my bladder whilst being on it, neither do I like the way it has made me feel within myself, somehow it feels like it does not suit me and given the fact I have anti phospholipid syndrome, I really do not want to risk a clot, i have noticed a slight lacy  poss livedo rash on my legs for the past 18 months so I am wondering if it is active again. I am a little annoyed my GP ignored that concern and just said how well her other  patients did on hrt......
I do not have hives with the itching so am not sure if mast cell activity is involved in fact aprt drom slight redness the skin surface is smooth. However, I am not going to rule out some kind of histamine release. Interestingly at the time this started I was taking codiene phosphate, only once a week and then only 2 tablets one night in the middle of the week, so not compounded heavy use, but, I had been doing this for 6 months or so. I stopped when this started so I just do not know.
But as Linda and Irish have said, AI's can do this to the skin, and moisterising it is not making any difference but I dare not give up with it. I get in and out of a cool bath once a week. I hate the water now.
Anyway thanks so much for your help, I think I would feel very alone without it.
Honeybee x

[katie1111]

Chronic itching is one of the main symptoms of PBC - Primary Biliary Cholangitis - which I have.  It is an autoimmune disease of the liver.  What works for me is oatmeal based soaps.  Some are more effective than others.  You have to experiment.  One of the best that is available it most drug and grocery stores is St. Ive's Oatmeal and Shea Butter.  Another is Grandfather's Oatmeal soap and one that you can order on line is Getaguru handmade olive oil soap with oatmeal from www. getaguru.com.

Katie1111

[irish]

Just a reminder that one needs to have a doctor check out the PBC possibility....blood work whatever. There are so many issues that the Sjogrens can cause. It is really sickening that all they mention in relation to Sjogrens is the dry eyes and mouth.

The gastrointestinal tract is now finality being researched and it is being found that so many issues can be caused by the workings of the colon and other organs such as liver, etc. There are so many enzymes and other secretions that are important that we didn't know about before. I just read that they are thinking that Parkinsons could be caused by the involvement of the Gastrointestinal tract, etc.

Kidney function issues can also cause itching. Does your doctor understand how bad your itching is? Just for your information , there are some women who have issues with their liver when they are pregnant and they will get a little yellow and itch just terrible .....after they deliver the problem goes away.

This just goes to show you that there are so many weird things that can happen to the human body and we, and our doctors, need to always think outside the box. I have been blest with my last 2 internists who have been over 40 and know that things do't always go by the book. If I tell them I have something going on and that I have been through something similar they are good about listening to me.

It takes a long time to get to that point I can tell you. We argue our way through health care the first few years it seems. This is why it is good to document our symptoms,medications reactions and dates, etc cause we can go back and prove things to our care givers. Good luck. Irish