Internal Shaking 17 months straight!! HELP ! - Thyroid UK

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Internal Shaking 17 months straight!! HELP !

I had my thyroid removed in 2009, been on Eutroxig 75mcg ever since. Been changed up to 100 mcg, and got severe headaches so back down to 75 mcg. The last 17 months Ive had internal non stop shaking. Came on suddenly along with blurred vision.

Had every test imagineable including 3 MRI's in a year, been to top neurologists, radiologists, opthamologists . Im so sick of this buzzing inside.

Been to a Chinese herbalist too.

I changed drs my one was useless , as this shaking has had him stumped, as it is with my new dr. Shes got no idea either. Ive done a print out of some of peoples experiences and comments on here. And I will demand that she helps me !

Im on beta blockers ( deralin /propranolol 40mg twice daily).

Im finding my shaking is at worst in the mornings until I swallow the Eutroxig tab then it seems to settle but the shaking goes on aaaaaaallllll day and night.

Blurred vision I can deal with but I want the shaking to stop. I cant live like this any more. Im in Australia. Thanks hope to hear from you soon with some help to stop the shaking!!!

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What are your most recent blood test results and ranges?

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 Thyroid antibodies are raised

Low FT3 is highly likely after thyroidectomy

Many people need the addition of small dose of T3

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Professor Toft recent article saying, T3 may be necessary for many. Otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

Might be worth considering testing for DIO2 gene variation

bluehorizonmedicals.co.uk/t...

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 to be adequately treated when on just Levothyroxine

sps.nhs.uk/wp-content/uploa...

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I'm surprised that with clear MRIs it hasn't been suggested by the Neuro that you might have essential tremor. Has that been mentioned at all? People often think it is just shaky hands, but it can be much more than that, including the internal buzzing which I have, and the vision issues. Before I started propanolol I also used to walk at a tangent to where I was heading lol. In terms of symptom control, have you tried the slow release version? I was taking 80 mg SR which was great symptomatically but because I also take 3 different meds for high BP it was intermittently dropping my HR too low so I now take 10 mg x 4 times. However, my Neuro has said that if that particular BB doesn't help, then there are other meds for essential tremor that work differently. Of course, in your case it could also be down to being on too low a dose of L-thyroxine, and as has been suggested by SlowDragon, if you post your thyroid etc results with ranges, members can comment.

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Hi shakygirl. I have hypothyroidism and have high inflammation levels with joint/ muscle aches and pain with mysterious rashes . My GP has referred me to a rheumatologist. My appointment is beginning of January. Last month I started with an internal buzzing sensation. It comes on whenever I try to rest or sleep. It’s driving me mad 😠. I can’t sleep properly and it’s really upsetting. The only way I can describe it is I feel like i’ve Swallowed an electric razor ! Sometimes I feel the buzz in my legs or feet. Then it moves to my hands and sometimes it’s in my trunk. Could this be anxiety related or a nerve problem. Hope you get some peace from it and a resolution xx

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