internal vibrations

[Carole7]

I have been diagnosed with Hyperthyroidism and my main symptoms were constant internal vibrations. I have been prescribed Carbimazole however no easing of my symptoms. How long were people on Carbimazole before there symptoms subsided??

[pennyannie]

Hello Carole and welcome to the forum :

Can you please share with forum members your initial blood test results and ranges that were run prior to you being prescribed the Carbimazole to include which antibodies were found over range and positive and probably looking like a TPO - TgAB - TRab - TSI and ranges or written as the TSH Thyroid Receptor AB ( anti body ) with a cut off number.

There is more than 1 reason why your thyroid has become overactive - and it depends on which antibodies were found positive in your blood test.

Carbimazole is an Anti Thyroid drug that semi blocks your own daily production of T3 and T4 thyroid hormones and usually prescribed when your TSH and T3 and T4 levels are outside their ranges.

Depending on the dose of Carbimazole and the levels of your T3 and T4 - it may take a week or two before these symptoms ease off - and the symptoms probably caused by too high a level of T3 :

We need a bit more information and help better understand and explain to you where you are in this phase of ill health.

[PurpleNails Administrator]

Welcome to forum

Difficult to say at what stage symptoms will improve as we don’t know how high your levels are & how you will respond to treatment.

Most improve by 6 weeks. This is the stage the thyroid levels are usually re-tested & dose needs to be adjusted, but it is gradual.

Do you have any test results? you need TSH, FT4 & FT3. Any thyroid antibodies tested?

Hyper can sometimes be transient, have drs checked the cause of your hyper?

[Carole7 in reply to PurpleNails]

I’m under endocrinology and they feel it was caused by undiagnosed coeliac disease. My tsh was 0.01 and I’m not sure about the others they just commented that they were high

[PurpleNails Administrator in reply to Carole7]

Coeliac very common with thyroid autoimmune. Going strictly gluten free will help resolve many associated symptoms but its not usual to hear of it causing hyperthyroidism.

How much carbimazole have you been given?

Have folate, ferritin, B12 & Vitamin D been tested, likely affected if thyroid abnormal and diagnosed coeliac.

You are entitled to your results, online access is really useful if available, if not obtain printed copy. You need a printed copy with lab ranges.

[Carole7 in reply to PurpleNails]

All have been tested and daily supplements prescribed by GP. Am on 25mg of Carbimazole and 120mg of propanol

[PurpleNails Administrator in reply to Carole7]

What supplements exactly. They tend to be low / least absorbable types. Levels will need to be rechecked.

That's a high dose propranolol. Did you report severe palpitations? Do not stop abruptly. Slowly reduce if planning to stop propranolol.

[Carole7 in reply to PurpleNails]

Methycobalamin1000 units, colcalciferol 800 units and ferrous sulphate 200mcg

[humanbean in reply to Carole7]

Methylcobalamin is a form of Vitamin B12 and is the one that works best for most people. 1000 micrograms per day might be sufficient, but it can be taken at higher levels if needed. It is the only vitamin I know of which is very, very safe even at very high levels.

Colecalciferol is another name for Vitamin D3 which is the one most people use to raise their levels if the dose is high enough. 800 iU is a low dose, and might not raise your level. There are many people on the forum who take from 2000 iU up to 10,000 iU per day, depending on whether they want to maintain their level or raise it.

The official recommended doses of vitamin D are far too low, and they were set at the levels they are to avoid rickets in children, not actually to make people feel well.

Higher dose supplements of D3 are easily found on websites that sell supplements e.g. Amazon or Ebay, but it is best to shop around online for the best prices.

Ferrous sulfate is an iron supplement that irritates the guts of people who take it and a lot of people can't tolerate it. I wrote about iron supplements in this reply - there are lots to choose from that are better tolerated than ferrous sulfate.

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

strongly recommend you got hold of actual results and ranges

just testing TSH is completely inadequate

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Bloods should be retested 6-8 weeks after starting or changing Carbimazole dose

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also TSI or Trab antibodies to definitely confirm autoimmune HYPERTHYROID disease - also called Graves’ disease

You also need TPO and TG thyroid antibodies tested at least once these can be high due to autoimmune HYPOTHYROID disease, called Hashimoto’s.

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms, before becoming increasingly hypothyroid

TPO or TG antibodies can also be mildly raised with Graves’ disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

With coeliac disease low vitamin levels are highly likely unless testing and supplementing

You should get vitamin levels tested automatically as coeliac

What were most recent results

Exactly what vitamin supplements are you taking

[Carole7 in reply to SlowDragon]

I have already had 2 iron infusions and b12 injections along with a stat dose of vitamin D. Ferritin is now 128, b12 is 154 and but d is 54. Supplementing all 3 daily as prescribed by GP.

[SlowDragon Administrator in reply to Carole7]

Low iron/ferritin more common with HYPOTHYROIDISM than hyper

Obviously low vitamin levels are associated with coeliac

Vitamin D is still too low ……how much are you taking daily

[Carole7]

800 units

[SlowDragon Administrator in reply to Carole7]

That’s a very low dose of vitamin D

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Many members find they need at least 2000iu daily as a maintenance dose

Higher dose possibly when wanting to increase your level

Possibly more in winter than summer

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

Gluten free diet is very low in magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[radd]

Carole7,

I'm not Graves-hyper but Hashi-hypo. However, read my two year old response to a previous poster and other members experiences regarding 'internal vibrations' here ..... healthunlocked.com/thyroidu...

[FW23 in reply to radd]

Hi Carole7So sorry to hear about your symptoms. They are so scary.I developed night tremors and burning/tingling of my feet,palms and lips 36 hrs after the Covid vaccine. I was eventually diagnosed with hypothyroidism and put on 50mcg levothyroxine. The night tremors continued for several months and having read an article about Covid and stress I did meditation for the vagus nerve. It may have just been the medication but I slowly found myself able to control the tremors until they completely diminished. I found the meditation on YouTube( I've looked for it again but can't find it). It involved being in a sitting position and pushing your breath and anxiety out of your lower spine. Be kind to yourself, give your self some treats.

[Kiki_76]

Hi Carole, I was diagnosed with Graves’ disease this year. I’ve since developed internal vibrations. I was first put on Carbimazole but had to come off it as it caused a terrible rash all over my body. So now I’m on PTU as that’s the only other option re medication. I did also start an anti depressant around the same time as starting PTU. But I spoke to my endo consultant to find out if the tingling (mainly knees down) was due to the PTU - he said he’d not heard of it in 20 years! So now I’ve put it down to the anti depressant. It’s been about 8 weeks now it’s definitely lessened but still there. I seem to notice it in bed when I wake (about 50 x per night🙄). But wouldn’t you think the endo consultant would’ve said to me it could actually be a symptom of the Graves itself? Sorry I’ve no advice I just didn’t realise it could potentially be connected to the thyroid rather than anti depressants. Good luck x

[anna-c]

I was prescibed propanalol to deal with it in addition to carbimazole and it helped within a week if not less.

[Carole7 in reply to anna-c]

I’ve been prescribed propranolol 3 times a day along with Carbimazole but they haven’t seemed to make any difference and been on both for nearly 6 weeks now. It feels like I have a phone in my pocket that’s constantly on vibrate.