PRESSURE IN HEAD & POSS. TED -Thyroid Eye Disease

[Toto88]

Can too much or too little levothyroxine cause a pressure pain in your head & stiffness in your neck aswell as tinnitus & ear problems? Also if one eye is showing larger than the other on a regular basis with piercing pain can this be TED ? Thyroid Eye Disease ? I am at the moment on levothyroxine 50 mcg & 75mcg alternative days plus a small amount of T3 . I am seeing a private Endocrinologist who thinks my levels are normal but I’m feeling worse !!

[PurpleNails Administrator]

The bulging of one eye can be a sign.

The eye pain can be especially behind the eyes, or when moving eyes. Head pain may be separate eg migraines or even eye strain.

Are your eyes red or dry, sensitive to light?

Most doctors do not consider TED a possibility unless you are diagnosed with Graves. (The TSI is considered the bio marker for both Graves & TED. Also TRab) but this not strictly true as those who are hypothyroid & those that have euthyroid levels can also have TED.

You may find your optician more helpful than GP or specialist. My specialist refused to refer me as although hyper it’s from nodule not Graves. The optician recommended drops eg hycosan and supplied a letter recommended referral, I have many symptoms including eye misalignment.

Some areas provide a emergency eye service via opticians and can liaise direct with hospital.

Some of your symptoms sound as of you may be under medicated, stiff neck & tinnitus. Do you have any results you can post?

For full thyroid function you need:

TSH

FT4

FT3

TPO & TG Antibodies

Folate

Ferritin

B12

Vitamin D

Leaflet on TED

btf-thyroid.org/thyroid-eye...

TED charitable Trust has an excellent site for information on TED

tedct.org.uk

[kinderen3]

I have the symptoms you mention - stiff neck. Severe tinnitus, eye pain, headache - but not bulging eye- and found out that I also have Lyme disease and Bartonella ( one of the co-infections) . I think Bartonella might also cause the thyroid problems Sometimes. I was diagnosed with Graves but this proved wrong as I don’t have the anti-bodies but I did have hyperthyroidism. It is difficult to get a correct Lyme/ Bartonella test- they are often wrong- and I went to a functional medicine therapist after I also developed MCAS and got tested through her. Best of luck in your journey!

[limonene7 in reply to kinderen3]

I also have had similar issues since starting on Levothyroxine, 3 years ago. Could be under-medication as I have consistently had low FT3 or could be levo itself. My left ear often has popping/crackling which the ear specialist has told me its ‘not draining properly’ (AKA eustachian tube dysfunction) which could be caused by various issues but she couldn’t say what because she said the inside of my ear was as ‘clear as a bell’ and no sign of inflammation. (Silent reflux, very common in hypothyroidism, also creates a wide range of similar symptoms due to pepsin being aspirated into ear canal etc). I have also had tinnitus in the same ear, ever since, which alternates between two different pitches (nutritional deficiencies such as B12 have also been shown to cause tinnitus). I also have stiffness in my neck but I’m generally very stiff all over but I think this is due to under medication because the levo has caused my FT3 to drop much lower than it was before starting the medication. I also have occasional sharp pains in my eye but I don’t know if this is normal or not. Generally speaking, I’ve had a huge array of weird little symptoms that all coincide with hypothyroid and/or levo. I am hoping that working at optimising all my hormones and nutrients that my mystery symptoms will eventually subside. I don’t know if any of this is helpful but good luck!

[Toto88 in reply to limonene7]

Thanks for replying - I do get acid reflux & take a PPI four hours apart from my levo but still I have terrible head pressure, stiff neck, tinnitus etc ! I’ve had a head MRI & spine which was normal apart from 2 Thoracic herniated discs which I’ve had since my late 20s ! About 5 years ago I went up on my levothyroxine to 75mg a day & although my tinnitus subsided I was having headaches daily & muscle joint pain in my legs so I reverted back to 50mcg & 75mcg levo alternative days. I don’t have the muscle stiffness in my legs but I do have the stiff neck & shoulders now which originally I never had ! I was started on T3 three times a day but my heart was pounding so I reverted back to just once a day & will see what twice a day does now. I honestly don’t know if it is the levo ? I take Almus brand ! Originally I was always on just 50 mcg but once I hit menopause I think that’s when the game changed. I’ve tried HRT for three months but was still the same - maybe it was the wrong one or I gave up too soon ? My Vitamin D was v low at one point & the GP had to put me on 40000 once a week for a month - it is still very low from my last blood test but I’m supplementing 4000 daily now & taking Vitamin 12 & magnesium. At one point I stopped the levo altogether & was actually feeling better but then slowly the tiredness crept it - they say coming off it has this effect & you shouldn’t but when you feel so awful all the time you have to make choices. The pain in the eyes has slowly got worse & as mentioned particularly in the left eye - I just came across the TED & saw def the resemblance!!

[Toto88 in reply to kinderen3]

Is Lyme disease not caused by a bite ? I’ve never been tested for either of what you mention but I’m in so much pain daily I will look into anything & thanks for offering some advice.

[Batty1]

Strange to read your post I have your same issues and never thought of TED and no doctor mentioned it also says my levels are good … Im thyroid-less.

[Toto88 in reply to Batty1]

Sadly GPS have no idea when it comes to thyroid !! I came on this site purely for help years ago & ive learned more from here than the twenty five years of having hypothyroidism! The lady who runs this site is an absolute gem 💎 & if it wasn’t her fighting determined spirit to keep on I think we would all still be in complete darkness about our condition!!! No GP or NHS Endocrinologist tells you or even properly advises you about any alternative treatments !! I was never told not what or when to take the levo when I was young! I had no idea how much the body relied on the thyroid & sadly I was ommitted into a mental institution with psychosis when I was young which I now know was caused by hypothyroidism which hadn’t been tested for or treated. DO NOT ever allow your GP to treat your condition - they are not qualified & that’s what needs to change.

[shaws Administrator]

The following may be helpful as I think it can be a 'common' complaint.

youtube.com/results?search_...

[Toto88 in reply to shaws]

Which video are you meaning plz ? The link goes to several different ones ? Thanks

[helvella Administrator Thyroid UK in reply to Toto88]

I think that shaws meant that you might get something out of viewing a few of them. Not just one video, with one idea, but several.

[TurkeY787]

I’ve got all the same symptoms as you i’ve been referred for my eyes and they say there’s nothing wrong the lumps just a fatty bit they said underneath my eye when I know it’s not everywhere I’ve been just keep fobbing me off all the time also had problems with my ears for 10 weeks now being referred to the NET now I hope you get yours sorted

[Frodo]

According to what I've read recently, you can have thyroid eye disease without even having systemic thyroid issues. As well as having both of course.

[PurpleNails Administrator in reply to Frodo]

Do you recall where you read that?

My endo stated as I do not have thyroid antibodies, TED not possible. I have a toxic nodule so hyper but not autoimmune.

[Frodo]

I can't find the original post I saw but this says the same: "TED can occur in people when their thyroid is overactive, underactive or functioning normally. It can also occur after treatment for Graves’ disease."

btf-thyroid.org/thyroid-eye...

[Frodo in reply to Frodo]

I think you linked to this site earlier in the thread?

[PurpleNails Administrator in reply to Frodo]

Thank you.