Intermittent Strange sensation on scalp feels hot burning sometimes sometimes tingly could it be thyroid or hormone related ?

[alysonkerry-]

I’m a 58 year old women with hypothyroidism which I’ve had for many years I take levo 100mg each morning in recent weeks I have been having strange sensations on my scalp. Sometimes a hot flash tingly sensation sometimes a prickling sensation hard to describe not a headache not my skull or brain just an oddness strange feeling on my scalp which when I apply pressure disappears. No other symptoms no vision disturbance dizziness nausea or anything else. Has anyone else experienced similar ? I am not due to have my thyroid bloods done at GP until June or could it be hormonal/menopause related ? Any replies advice or help would be very much appreciated :))

[SlowDragon Administrator]

Recommend getting FULL thyroid and vitamin testing done

Either now privately or you can try and get GP to test ….but you are unlikely to get Ft3 tested

Do you always get the same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

If yes Which brand?

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Always test early morning and last dose levothyroxine 24 hours before test

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[alysonkerry- in reply to SlowDragon]

Hi SlowDragon my Levo is a brand called accord 🤷‍♀️ Think I’ve had the same one for a while. I used to be on eltroxin after struggling with a previous brand but of course that became no longer available a few years ago.It’s a few years since I had a full blood panel done so think I will take your advice and have one done privately that checks just about everything. I have had this brand of levo for a while now but it can and does sometimes change. Re vitamins I have intermittently been taking nature’s best multi max advance ( multi vitamins & minerals with Lutien & turmeric one a day as well as extra magnesium tablets). I’m always concerned about taking too many vitamin tablets as I eat a very well rounded diet ?

As you will see another member has suggested I’m on too high a dose of levo ?

I’m struggling with my weight at the mo & one or too other hypo symptoms (although not sure if that’s menopause related ?) but don’t feel I need a reduction? But if I get bloods done hopefully they will shine a light on things.

Thankyou so much for your advice will post blood results once I have them 😊

[SlowDragon Administrator in reply to alysonkerry-]

Multivitamins are never recommended on here

Most contain iodine, including this Nature’s Best multivitamin

Iodine not recommended for anyone with Hashimoto’s

Also looking at ingredients contains folic acid not folate

Suggest you stop taking this multivitamin and test levels

Better to only supplement what we need. Typically that’s vitamin D and vitamin B Complex

Retest full thyroid and vitamin levels annually

[alysonkerry- in reply to SlowDragon]

Thanks slow dragon will stop immediately get bloods done and ready evaluate once I have results & if need be take B complex & vitamin D.

[alysonkerry-]

Thank you for your prompt reply will send another message tomorrow with all the information you have asked for :))

[Marz in reply to alysonkerry-]

How is your B12 level ?

[alysonkerry- in reply to Marz]

I haven’t had it checked for a while but I’m going to get a full blood test done Thanku :))

[Marz in reply to alysonkerry-]

Are you supplementing B12 or a B Complex ? If so your results will be skewed. Perhaps you have a result from earlier ....

[alysonkerry- in reply to Marz]

My multivitamin has B12 50ug B1 5mg B2 4mg B3 16mg B6 10mg it says to take one a day but I only take every couple of days as I’m wary of taking too much not sure if I’m doing the right thing ? It’s a few years since I had it checked the GP is only interested in testing TSH that’s why I’m going to have a private blood test done. Thanks again for your interest :)) ps. Will post blood results once I have received them.

[Marz in reply to alysonkerry-]

When you have the private test done do include B12 - Folate - Ferritin - VitD on addition to the TSH - FT4 - FT3 & ANTIBODIES TPO & Tg. When you have the results start a new post so more people see it ....

Have you looked at the symptoms of B12 Deficiency ?

EDIT - forgot to mention that you should cease the B Complex for a week before testing - Biotin can skew results.

[alysonkerry- in reply to Marz]

Thankyou for the info Marz have checked B12 deficiency symptoms & can’t say I really have them other than the parathesis of my scalp ?? But I’m having it tested. Test I’ve ordered covers full thyroid main vitamins cortisol magnesium etc. I won’t take any vitamins between now and testing on the next few days either thanks again will post results . 😊

[jamesal0]

Your're over cooking the Levo. Drop it for a day or two and see if you feel better. The Levo builds up in you system and starts messing with your nerve ending. If my suggestion works you may need to just drop 25mg off your dosage every second day or something. Any way main thing is you are perfectly normal and don't need to go off and be checked out buy a neurologist like I did

[alysonkerry- in reply to jamesal0]

Oh really I feel like I need an increase not a reduction but really appreciate your advice I’m going to have a full blood panel so will see where my levels are but will give reduction a go thanks again :))

[jamesal0 in reply to alysonkerry-]

My GP was always trying to push my Levo up because my TSH was garbage. But the more he did the worse my neurological symptoms got. Crawling scalp, tingling feet, nervy bladder, brain fog etc. I worked out for myself Levo was the problem and eventually found a name for it "t4 pooling". 50-75 mcg levo was all I could tolerate. The ultimate fix was going to Desiccated Thyroid but that's got it's own challenges

[alysonkerry- in reply to jamesal0]

That’s really interesting to hear I know it’s not one size fits all for thyroid problems although often the GP’s don’t seem to understand that. Only you know know how you feel hope your all sorted now & feeling good thanks for the info much appreciated:))

[jamesal0 in reply to alysonkerry-]

I believe you can't fine tune thyroid hormones with blood tests. They are point in time (when drawn) and don't represent your thyroid requirements over a whole day/week very well. You may need 90 mcg per day or 105 who knows. Levo comes in 25mcg dose increments so GPs mostly put you up/down 25, because that's easy for you to remember. But to be optimal you need to use symptoms and fine tune. I always go down first because that's safest. Find a side effect and then slowly tune up until you go high. Now you need something in the middle. This might be take daily normal dose but add some or drop some every 4th day .

[alysonkerry- in reply to jamesal0]

Thanks for insight will bear it in mind 😊

[Alanna012 in reply to jamesal0]

With respect, the T4 pooling doesn't necessarily mean you don't need an increase. There are reasons for pooling such as inadequate rate conversion to t3, low cortisol, low iron or other vitamins and minerals.

It's not uncommon for someone to become T4 toxic whilst still being undertreated. It's a truly miserable position. Of course dropping dose seems wise, but then the person is still undertreated and symptoms eventually increase. Leaving the person feeling like they cannot win. That's why it's so important to regularly test t3 levels in ratio to that of T4.

[alysonkerry- in reply to Alanna012]

Thanks Alanna even though I’ve been hypo for almost 20 years I’ve never heard of T4 pooling until yesterday so Thankyou for explaining its a minefield of information and sadly the GP’s know very little about it & even the Endo I saw at one point didn’t explain things at all. Awaiting my blood test so will see what the results show thanks again for replying :))

[Batty1 in reply to alysonkerry-]

Having both menopause and thyroid issues is hard to determine which one is causing what … are you on HRT?

[alysonkerry- in reply to Batty1]

I know that it’s very confused no not on HRT

[SlowDragon Administrator in reply to jamesal0]

jamesal0

You can’t possibly say wether anyone needs dose increase or reduced without getting full thyroid and vitamin testing

100mcg is NOT a high dose at all

As a rough guideline

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).

[alysonkerry- in reply to SlowDragon]

Thanks again slow dragon over the years my dosage has varied from 50 to 150 mg per day have just ordered blood tests so will post again once I have results 😊

[SlowDragon Administrator in reply to alysonkerry-]

Only test early Monday or Tuesday morning with last dose levothyroxine dose 24 hours before test

[alysonkerry- in reply to SlowDragon]

I will do that test should either arrive Saturday or Monday morning so will take test accordingly and hopefully have results towards end of next week. Order the blue horizon gold standards do covers most things I would like to know huge thanks for your help and support 😊

[helvella Administrator]

I found something out very recently.

People can suffer multiple very mild doses of shingles over years. Sometimes they notice absolutely nothing. But other times they have very mild symptoms.

Could that be it?

The reason I am so aware is that I currently have it - but quite seriously! Your description of your scalp feelings is quite close to what I felt in my scalp that I am thinking it worth a punt as a suggestion. And I realise it is possible that some events over the years could have been extremely mild doses.

(Dismiss this is seconds - we all get besotted by the things we are suffering. More likely to be wrong than right. )

[alysonkerry- in reply to helvella]

Thankyou for taking the time to post your thoughts o have no rash anywhere or anything that would make me think of shingles but the body is a strange thing so who knows hope your over your shingles soon 🤞🏻😊

[HowNowWhatNow]

Hi AlysonI’ve been having the same / a similar thing and have if anything too high a TSH (over 4 the last time it was tested a few weeks ago) so would not say I have been taking too much levo either.

I am mid-investigations for Sjögren’s and other connective tissue connected-AI conditions.

I would suggest you go to see a dentist and check how your mouth hygiene is. That was my first sign that something was up in the head area.

[alysonkerry- in reply to HowNowWhatNow]

Thanks Geogeor for sharing your situation and thoughts I have recently been for my 6 monthly check up at dentist & all was fine. I do get dry irritated eyes but no dry mouth and the only other symptom is heat on head area where sensation is usually the scalp at back or top of head and hot flashes that’s why I wondered if it could be related to the menopause/hormonal or thyroid? Once I have my blood test results I will post again thanks again and hope you get well soon a d get to the bottom of your problems too 😊

[HowNowWhatNow in reply to alysonkerry-]

Good luck getting to the heart of your problem.

[Sleepybunny]

Hi,

I normally post on the Pernicious Anaemia Society forum on HU.

Might be worth you looking at the symptoms of B12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

Lots more info about B12 deficiency on PAS forum.

[alysonkerry-]

Thanku sleepy bunny will check those sites out & once I have blood results will know a bit more :))

[alysonkerry-]

Hi everyone who so kindly replied to my initial post I did receive my blood test kit from blue horizon but struggled to get a sufficient sample. I have just received an e mail confirming this so they are sending me another kit out 😬 I would appreciate any advice or tips on how best to collect a good blood sample Thankyou & if I do get any results will post ASAP although you can only post bloods back at the beginning of the week so it depends when u recieve kit to when & if I get results this is why I have taken so long to post this 😌

On a positive note my strange scalp a sensations have disappeared thankfully so goodness knows what caused them. I will still however endeavour to get blood test done & post again then .

Once again huge thanks for all your support & advice & for taking the time to reply everyone 😁

[OsageOrange]

I know this is several months old, but just reading. My wife is experiencingvexactly the same odd sensations oon her scalp. The began almost exactly when she increased her dose from 25mcg to 50 mcg based on doctor’s advice.

[alysonkerry- in reply to OsageOrange]

hi and thanks for your comments I hope your wife’s discomfort disappears soon. Eventually the odd sensations disappeared and ironically my thyroxine was increased from 100mcg to 125mcg per day. Sometimes a certain brand of thyroxine can cause us problems. It’s not a nice experience to have I never really got to the bottom of what caused my problem but thankfully I know longer have it and can only wish that your wife is babk to normal soon 🙂