Thyroid - differing opinions?

[Dino40]

In January I was diagnosed with sub clinical Hyperthyroidism and Thyroid Eye Disease after attending the emergency eye clinic with terrific orbital pain/tighness, swelling around my eyes, redness, more blurry vision than normal (on steroids for another condition which causes focus problems) and slight protruding in one eye.

TSH was 0.31 (range is 0.55 - 4.78)

Free T4 14.4 (range is 11.5 - 22.7)

Total T3 1 (range is 0.9 -2.5)

So they measured my antibodies for Graves disease.

anti-TSH Receptor Antibodies 2

(Range for anti-TSH receptor

Negative <2.9 IU/L

Equivocal 2.9 - 3.3 IU/L

Positive >3.3 IU/L)

TPO antibody negative

So because I'm under Endocrinology for my other condition (which I'm on steroids for life for) they weren't concerned about my thyroid and discharged me before the results of my antibody tests. Obviously then got my antibody tests and Thyroid eye disease was kind of dismissed as well as not having a thyroid problem. Eye clinic still felt there was a thyroid problem.

Anyway ended up back in emergency eye clinic due to the awful orbital pain this month and the registrar said that all measurements etc were similar to January and I have to wait to see someone else (someone more senior) but said eye pain couldn't be thyroid.

Thyroid results this time were

TSH 0.36

T4 13.7

and awaiting T3.

So my question is as the TSH is low do I have a thyroid problem or as Endocrinology say there isn't one? Think they're leaning to it all being steroid related as I'm on a higher dose than my normal maintance dose and they haven't found out why.

B12 was low last year, and I had one lot of treatment for it.

On high dose of Vitamin D due to Hyperphosphatemia last year.

MMA blood test for B12 end of last year was 16.6 (range under 32)

Folate not tested.

Only other significant results that are consistently high for years are

MCV 107.4 (range 83.0 - 101.0)

MCH 35.9 (range 27.0 - 32.0)

Some Consultant said that could be linked to B12 and Thyroid.

Thanks

[Buddy195 Administrator]

Welcome to the forum Dino40,

I am sorry that you have been experiencing so much pain/ discomfort with your eyes.

Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition). I understand what a ‘battle’ it can be with some specialists if you are not under the the more typical ‘Graves/ TED’ umbrella!

It is recommended to take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

TEDcttedct.org.ukWelcome to the Thyroid Eye Disease Charitable Trust - TEDct

I also recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.

[Dino40 in reply to Buddy195]

Thank you Buddy195. Endocrinology did say selenium which I've been taking and I asked my optician about eye drops as I'd just been using the bog standard ones and they got my GP to prescribe hycosan. The eye lot said my eyes are inactive thyroid eye disease and I did join a Facebook group but not sure which one but someone said they weren't sure mine was inactive as I have so many symptoms.

The eyes can just get so tight sometimes as well which is where a warm face cloth comes in handy and yes I have the light sensitivity as well. I also started with bouts of double vision this month too.

I'll get that information pack and I have been taking photos as things like the redness I get up in the night and my eyes are completely red.

Endocrinology here is rubbish at best. They've been useless dealing with my other condition so not surprised they can't handle this. I'm prepared to go privately if it gets me to a better one just need to find one so will do some dogging. I've struggled to find a good one privately before with my other condition as they all specialise in diabetes and don't care about anything else.

Many thanks

[greygoose]

FT4: 14 pmol/l (Range 11.5 - 22.7) 22.32%

Subclinical hyperthyroidism! Load of tosh! I don't believe there's any such thing. With an FT4 as low as yours you're not any sort of hyper. Seems to be one of those false 'diagnoese' they dish out when they haven't a clue what's wrong.

It's not about the TSH. It's about the thyroid hormone levels, and your FT4 is much too low. If you didn't have a thyroid problem it would be around 50% through the range.

TSH is unreliable, anyway, it changes throughout the day, every day. What time of day was the blood draw for this test?

They may have tested TRAB and TPOab, but they haven't tested Tg antibodies, and if they are high that would mean you have Hashi's. The picture is far from complete. But doctors don't understand this, they think that the TSH 'tells them all they need to know'. So, when it doesn't tell them anything, they have to make something up.

And your eye problem doesn't 'prove' you're hyper, either, because that seems to be more to do with autoimmune conditions than being hyper, so you can have it with Hashi's. Don't let them fool you, you are not hyper.

[Dino40 in reply to greygoose]

Thank you greygoose.

I have multiple health conditions and I think they thought hyper because as well as having the eye problems I also suddenly started loosing weight since last October (hadn't been able to loose weight for years and had been putting it on due to medications for very high blood pressure) and my hand tremor was worse, the exhaustion was worse etc..

Endocrinology said oh well your TSH is only mildly surpressed. (Not sure if they were thinking the steroids were causing it) They are useless here and they've been unable to manage one of my other conditions so I'm not surprised by their attitude to be honest. They passed the buck before to my Respiratory Consultant who has now re-referred me back to them. I really need to find a good Endocrinologist but not had much luck so far but with my other condition and I'm thinking a thyroid problem as well I really do think I need to try and find one. Problem is they're all so focused on diabetes they don't care about anything else. 🙄

[greygoose in reply to Dino40]

I don't think they thought at all. Either that or they have no idea what hyperthyroidism is! Your TSH isn't in the least suppressed (I wonder if doctors know they can consult an on-line dictionary at all times!) it's just slightly under-range. That does not constitute any sort of hyperthyroidism.

[Buddy195 Administrator in reply to Dino40]

I initially presented as ‘hyper like’ (weight loss, palpitations, fast pulse, tremor…. In addition to positive TED) so I was diagnosed with Graves, but (encouraged by forum members here) I questioned this and found I actually have hypothyroidism/ Hashimotos.

[Dino40 in reply to Buddy195]

Thank you Buddy195 it is a confusing picture at times.

[PurpleNails Administrator]

You can have TED without Graves / hyper / or any thyroid antibodies.

It’s just that thyroid antibodies, TRab in particular, & thyroid issues often appear at the same time as TED diagnosis. There isn’t a specific test for TED.

Medics assume TED & Graves only appear together but the mechanisms are not clearly understood. There’s a great deal of mis-understanding. For example, I have hyper nodule (not autoimmune) most drs assume I have Graves hyper & TED. I explain I don’t have Graves, never had TED diagnosis & they look at me as of I’m stupid & say you must have. When I meet another dr & repeat what I’ve been told, they look at me as if I’m stupid & say I have the wrong hyper for TED. Orbital MRI suggest otherwise, 1 letter even says the TED doesn’t feel related to TED?

Strictly speaking your TRab is in borderline range. Under 2.9 being negative (under expected limit) & 3.3 being unequivocally positive. Most antibody ranges are negative up to a threshold limit eg 0 - 2, over 2 being positive. This new range method just adds to the confusion.

As for mildly suppressed TSH, that’s usually enough to freak dr out. TSH can be extremely unreliable the FT4 & FT3 is what must be taken into account.

Keep monitoring levels. Try to test under consistent circumstances. Early morning draw ( before 09.00) fast overnight. If you take biotin containing supplements, cease them 3/7 prior to test as has potential to interfere with test process.

[Dino40 in reply to PurpleNails]

Thank you PurpleNails.

See that's what I wasn't sure of whether you could problems with your eyes without the anti bodies. I also don't know what effect the steroids are having on the results.

It's tricky for me to get a 9am blood draw as we have a child to get to school. My next official blood test ina month is just after 9 so will see what that says. The one I had done the other day they were testing for something else so I'd had my breakfast and they surprised me and said oh we'll do your thyroid whilst we're at it and I did say I'd had my breakfast etc..

I had wondered about my antibodies because it's just at the end of the range and like I said I don't know if steroids affect it. 🤷‍♀️

I can imagine how exhausting it must be for you having to explain to drs. Sometimes you really just can't be bothered having the conversation all over again.

[SlowDragon Administrator in reply to Dino40]

Steroids can lower TSH

You need full thyroid and vitamin testing including Ft4 and Ft3 and both TPO and TG thyroid antibodies

You could do private testing at home ……early morning

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

[Dino40 in reply to SlowDragon]

Thanks SlowDragon.

What are TG antibodies?

Anti TSH and TPO antibodies are negative.

Though as someone said above the anti TSH is borderline.

I never know if the steroids affect the results, it's always a concern for me that the true picture is hiding underneath.