Weird eyes: I have a mixed bag of symptoms, some... - Thyroid UK

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Weird eyes

Fizzwhizz profile image
65 Replies

I have a mixed bag of symptoms, some classic hypo but others not so like weight loss and weird eyes. Sort of a bit staring and glassy looking. I have dry eyes and got told I had blepharitis but am careful to keep eyes clean and am on top of this. There not bulgy as such but can you have a mixture of graves and hypo symptoms? Thanks

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Fizzwhizz profile image
Fizzwhizz
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SlowDragon profile image
SlowDragonAdministrator

your previous post shows you have Hashimoto’s

Lots of hashimoto’s patients have eye symptoms

Medics tend to associate Thyroid eye disease only with Graves’ disease but it can be an issue with Hashimoto’s too

Adding a daily selenium supplement may help

Buddy195 has info on TED association

Fizzwhizz profile image
Fizzwhizz in reply toSlowDragon

Thank you. I think I read some of Buddy’s post. I just wondered as my grandmother had classic Graves eyes and weight loss. My eyes are just weird. Sometimes I think I’m imagining it as no one has commented they’re a bit staring and a slew of nasty dry eye symptoms which could be menopause too. What a lot to unpick. I eat brazil nuts for selenium. Just ordered the B12 you recommended. The weight loss isn’t typical either. I did have low appetite but that’s improved and I feel better than I did even though I’m not medicated currently. I have appointments coming up one private one NHS. No idea what NHS will make of me as my bloods that they would check are all within range….

J972 profile image
J972 in reply toFizzwhizz

Have you ever been tested for Graves’ antibodies? TSI and/or Trab?

My daughter has elevated TPO (usually associated with Hashimoto’s) AND elevated TSI.

Fizzwhizz profile image
Fizzwhizz in reply toJ972

Yes, just been tested and my thyroglobulin and TPO antibodies are way above range but haven’t had an appointment yet to see what’s to be done about it. NHS just keeps telling me my TSH was normal and just had private testing to uncover the antibodies situation. I have so many typical hypo symptoms apart from the weight loss but was thinking they were menopause related until recently when I felt the Raynuards and rosacea couldn’t be menopause and were autoimmune. NHS just keeps telling me I’m fine according to bloods and annoyingly private HRT GP only looks at and treats HRT issues. I think my thyroid has been sub optimal for quite some years unfortunately.

SlowDragon profile image
SlowDragonAdministrator in reply toFizzwhizz

Hashimoto’s frequently starts with transient hyperthyroid type symptoms (and results sometimes) …..initially loose weight as thyroid cells break down and release excess thyroid hormones…….before becoming increasingly hyperthyroid

To test for Graves’ disease (autoimmune hyperthyroid) you would need TSI or Trab antibodies tested. Usually can only be done via endocrinologist

Private Graves Disease antibodies test

Has to be by private blood draw, which adds to the cost

medichecks.com/products/tsh...

Fizzwhizz profile image
Fizzwhizz in reply toSlowDragon

Thanks. I’m going to sit down later and go through all this again. Your replies have been really helpful. I know my family history has both graves and hypothyroid issues. Most of my symptoms do fit with hypo so what you’re saying makes sense. I wish it wasn’t the case but at least now I have one set of results that indicates there’s a problem. Thank you.,

Flecmac profile image
Flecmac in reply toJ972

Could you explain TSI and/or Trab please? Thank you.

J972 profile image
J972 in reply toFlecmac

I’m very much still learning myself 🫣

TRab means TSH receptor antibodies

TSI stands for Thyroid-Stimulating Immunoglobulin

Testing positive for either of these confirms Graves’ disease.

I’ve had this link shared a couple of times now. It succinctly outlines the spectrum of autoimmune thyroid diseases:

thyroidpatients.ca/2020/04/...

Flecmac profile image
Flecmac in reply toJ972

Thank you. ☺️

Fruitandnutcase profile image
Fruitandnutcase

When I had Graves my eyes weren’t great. They didn’t bulge but the muscles were weak, if I read for too long I couldn’t focus properly and when I watched TV I used to get a double image as the credits filled at the end of if there was any writing on the screen - I’d hesitate to say it was thyroid eye disease but my eyes felt horrible.

I don’t know how often you are putting your dry eye drops in but you need to use them regularly throughout the day - almost like overdosing at least for a while. Not just morning and night. I used to have them in every pocket and bag so that I was by never without them. Be sure to use preservative free drops.

You can also get a thick gunky gel for night time. Your eyes might feel better if you can use either an eyebag you can heat in the microwave (you can buy them either online or from your optician) or else use a facecloth squeezed out in hot water. Once you’ve done that you can massage your eyelids gently.

I also take EkoPura Omega 3 vegan algae oil DHA capsules. I got them for my bones (I’ve got osteoporosis - so keep an eye on your bones if you think you have an overactive thyroid- no one thought to mention that to me - although yourHRT should protect your bones. I wish I hadn’t stopped it, unfortunately at my age 75, I can’t see me getting to start it again) anyway, I discovered when I ran out of my first packet that my eyes got drier again. When I got more and read the back of the pack it says they are for ‘eyes and brain’ and believe me they really helped my dry eyes, so think about taking them, I buy them from Amazon.

Have you posted your thyroid results anywhere for people to see? As for ‘normal’ - I imagine your doctor means they come somewhere within the range.

Fizzwhizz profile image
Fizzwhizz in reply toFruitandnutcase

Thanks, I’m familiar with eye drops in every pocket and the thick stuff at night. My eyes have been better though recently in terms of dry eye symptoms. I think oestrogen for me was leading to oestrogen dominance and not helping my eyes. They do look stary now and glassy though. Yes my TSH, T3 etc are normal but T3 and TS4 (private testing) were low in range and TSH creeping up but not alarming to NHS as within range. Private antibody testing has shown Hashis but not diagnosed yet. Hence my struggles to unpick symptoms as I have weight loss which isn’t typical of hypothyroidism. I packed in the HRT because I was spotting and felt rubbish on it but obviously it wasn’t being balanced out by any thyroid meds at the time. I actually feel better currently in terms of energy, mood etc so no idea what’s going on really. Trying to get my head around all my weird symptoms. I’ll look into the omegas thanks.

helvella profile image
helvellaAdministrator in reply toFizzwhizz

weight loss which isn’t typical of hypothyroidism

True in that it is less common. But it does happen. There are several possible explanations but they include loss of muscle mass. And, in extreme, that can be serious.

It could also that you are not digesting what you eat as well as you used to. And you might also be failing to absorb nutrients as well.

The assumption that weight loss occurs in hyperthyroidism, and weight gain in hypothyroidism, has seen all too many misdiagnosed. Even to the extent of the treatment being inverted.

FallingInReverse profile image
FallingInReverse in reply tohelvella

Great point helvella Fizzwhizz

I have been the same weight since college! 30 years ago. I lost about 5-7 pounds while breast feeding and when marathon training oh so long ago!

But right now today I am exactly the same number as I was 30 years ago. Maybe it’s sagged to new places lol. But the number is identical.

And I am still dysfunctionally hypo and clawing my way to optimal Ts : )

Indeed we hypo folks are all the same and yet all so different.

Fizzwhizz profile image
Fizzwhizz in reply tohelvella

Thanks yes I think I do have difficulties absorbing food now, hence my improvement on my supplements. Although I do get worried about those. HRT not clearing well from my system and causing spotting has left me scared and aware that only tiny amounts of certain things are extremely potent. I feel the GP providing the private HRT should have been more aware of why my body was poor at clearing it but sadly in the UK at least it seems common to treat patients as separate sets of symptoms with boundaries to that care rather than as a whole system. I’ve only lost 3kgs but I wasn’t big before but previously had struggled to lose weight. I did have a period of low appetite but that’s improved now. Trying to add lemon to food to aid stomach acid and support my gut biome.

Jasper79 profile image
Jasper79 in reply tohelvella

Yes, that matches my experience. Hypothyroid since diagnosis 2019 and lost weight steadily 91kg in 2019 down to 73kg now - less than when I was 20! 79 now.

Certainly think a lot is muscle mass - I have peripheral neuropathy and my calf muscles have really shrunk.

Pleased to see there is at least some explanation.

FallingInReverse profile image
FallingInReverse in reply toFruitandnutcase

Fruitandnut!

“I couldn’t focus properly and when I watched TV I used to get a double image as the credits filled at the end of if there was any writing on the screen - I’d hesitate to say it was thyroid eye disease but my eyes felt horrible.”

I had/have that while driving! Eyes get so tired they start to relax and blur unless I make effort to stay focused.

Ever figure out the mechanism/physiology/biology behind it happening, and does it still happen for you??

helvella profile image
helvellaAdministrator in reply toFallingInReverse

With double vision, the first thing to do is check whether it is monocular or binocular.

I had monocular double vision a few times while definitely hypothyroid. And did not have thyroid eye disease.

Just adding:

Simply put your hand (or something else) over one eye, then the other. Switching slowly to allow adjustment. And check whether it is the same in both eyes. Or might stop when either eye is covered. :-)

FallingInReverse profile image
FallingInReverse in reply tohelvella

Hm! Well reading your response I didnt have actual double vision, but my eyes - both of them - feel tired, so took a lot of effort to focus.

So… binocular , BUT not double, just tired and weak.

That being said - Just sitting here and realizing that I did just have an eye exam, with a retina scan as I have thinning retinas on the edges so have to watch out for floaters. All stable for now.

But more importantly perhaps I had to reduce my glasses prescription for distance as my age has made my close up vision worse and therefore the far away better.

Maybe this is actually one of those things that is NOT thyroid related???? like when my dr told me my thumb hurting was not arthritis but how I held my cellphone to text. Hmmmmmmm!

Litatamon profile image
Litatamon in reply toFallingInReverse

Double vision could be low b12; it is a documented symptom. I had until I was diagnosed.

thyr01d profile image
thyr01d in reply toLitatamon

Thanks for this helpful piece of information Litatamon

SmallBlueThing profile image
SmallBlueThing in reply toFallingInReverse

I would find my eyes got exhausted when wanting to look upwards, particularly at the end of the day. I don't drive, nor travel, much, but on long journeys my eyes darting around more than usual would bring on the exhaustion more quickly. My then-GP said a TSH receptor antibody test was specialised, and wouldn't refer me.

Double vision was becoming noticeable enough to get checked at an appointment with an optician, in March 2020. My new GP had me in for an appointment last summer and the double vision was the first thing I mentioned. I also have left eye double vision, which I think is due to astigmatism. I've now had some appointments with a hospital orthoptist (great to see the kids in the waiting room, coping with their challenges) and am due for a CT scan in a couple of weeks' time (wondering what will happen about the contrast agent). I've had antibody tests for myasthenia: acetylcholine receptor (AChR) antibodies and anti-MuSK (muscle-specific kinase) antibodis, but don't yet know the results. I get sudden onset pain and weakness in hips and shoulders.

The Prof said the UK population is OK for selenium and as I'm in no way in an active phase of thyrotoxicosis, supplementing selenium was not recommended. My TSH was suppressed but fT3 and fT4 both in-range a year ago, but they were over-range two years ago, following COVID-19 a year before. My TSH was over range, when tested in January.

Fruitandnutcase profile image
Fruitandnutcase in reply toFallingInReverse

No, my eyes (and my other muscles) went back to normal once my thyroid sorted itself out. I just kept doing all the things I mentioned above.

I developed inflammatory arthritis a couple of years after I went into remission from Graves so unfortunately I’m pretty creaky now plus I’m a lot older into the bargain and I’m finding age doesn’t help anything!

Basically at that time my eye muscles just couldn’t sustain the effort to keep my eyes in line, especially as I used to take a bus to meet my husband after work, it was a long trip from where we live to where he worked and I read all they way so it wasn’t surprising that after an hour and a half I couldn’t see straight when I stopped reading. With the credits on TV the double image was vertical - I used to see the words and a shadow of the words beneath them. I think my eye muscles were just getting very tired, but then all of my muscles were getting tired at that time.

One of the first signs of thyroid disease I had was that if I got down to ground level to take a photograph I was unable to get back up without help of some sort, I thought it was because I had too much gear in my back pack but eventually I was so exhausted that I stopped being able to walk for long distances, couldn’t stay awake after six o’clock but couldn’t sleep either plus I lost masses of weight and I had all of the classic hyper symptoms so I suppose my eye muscles being weak as well wasn’t really surprising.

It’s hard to believe how your thyroid affects so many parts of your body not to mention your mood. It took me a long time to be diagnosed and any time I went to see a doctor which wasn’t all that often I was made to feel like a hypochondriac, I knew something was wrong and I was sure it was something autoimmune but just couldn’t figure out what it was. Three months before I crumbled and was finally diagnosed a GP looked at me like I was a specimen under a microscope and said ‘I think you’re needing your holiday’ - she didn’t add ‘dear’ but it was implied.

Hope things go well when you see your endo.

Fizzwhizz profile image
Fizzwhizz in reply toFruitandnutcase

Thanks, like me I’ve had a niggling feeling thyroid was on the blink but more recently put it down to menopause/ageing. According to various GP as my bloods were in range it’s not thyroid causing Raynuards, rosacea, fainting episodes, depression, exhaustion. At least I’m on it now but am worried the NHS endocrinologist might not take me seriously either.

Fruitandnutcase profile image
Fruitandnutcase in reply toFizzwhizz

Have you got someone you can take with you for support? You could also note down your main symptoms - not too many you don’t want to overwhelm the person you see - plus a couple of questions.

Have a look at this link for ideas - if you Google ‘making the most of your consultant appointment’ you will find similar hints

securicaremedical.co.uk/blo...

Here’s another one

kingstonhospital.nhs.uk/pat...

Fizzwhizz profile image
Fizzwhizz in reply toFruitandnutcase

Thanks, I have noted all my symptoms. I’m going to ring the secretary and see if I can see someone who has an interest in thyroid. I’m in a mood to try get this sorted now so will see what response I get. It’s just so frustrating when it’s been rumbling on for so long and I knew some wasn’t right!

FallingInReverse profile image
FallingInReverse in reply toFizzwhizz

Fizzwhizz

Good chance it’s all hypo!!!

For me:

Reynauds- numb white fingers - down to thyroid, doesn’t happen anymore

rosacea - cleared up when put on Levo

fainting episodes- didn’t have

depression- clearing up with Levo

exhaustion-still working on this one but at least I understand what’s happening

Hypo - the gift that keeps on giving!

Fizzwhizz profile image
Fizzwhizz in reply toFallingInReverse

It’s good to hear that, thanks. I was wondering if levo might help me or whether it would be a long journey of ups and downs like with the HRT! I never got to the satisfactory point with that and have currently given up as I was spotting. Although my antibody results look scary to me they’re in the 100’s not thousands so maybe I’m mire boderline. I’m hoping so. I still have shed loads of symptoms though but as my vitamins are all over the place too hopefully supplements will resolve. My energy is better. Weirdly I’ve found postponing my beloved coffee until 9 am helps and trying to improve my gut biome and manage my stress a bit better. I gave up my exercise class and just doing tons of walking instead. Baby steps. So glad levo has helped you feel better.

JGBH profile image
JGBH in reply toFruitandnutcase

Hi, have sent you a PM.

crw2ddd profile image
crw2ddd

Hashi patient here. In the absolute height of my illness when my TSH was 90 and my TPO antibodies were 9000 I was underweight at 96 pounds and ended up with uveitis. Got it under control with armour, selenium, omega 3s and a lose dose of amitriptyline for sleeping and pain.

Fizzwhizz profile image
Fizzwhizz in reply tocrw2ddd

Thanks, your figures were really high. My TSH is 2.8 and T3 and T4 in range but low end. My antibodies are in the hundreds not thousands. I have appointments this week one private and one NHS so hopefully can begin to put things in place. I feel a bit like I’m scrabbling around in the dark just adding supplements in but I think they’re helping.

someone42 profile image
someone42

I have had both Graves and Hashimotos at the same time.

Fizzwhizz profile image
Fizzwhizz in reply tosomeone42

I did wonder if it was possible also I read somewhere you can be hypo but initially present as graves then become more hypo although I think my problems have been going on a decade at least but maybe I was borderline before and the menopause had shifted things. I dunno 🤷‍♀️ The more I read the less I feel I know about what’s happening in my body.

helvella profile image
helvellaAdministrator in reply toFizzwhizz

There is much confusion here - not surprisingly.

Many with autoimmune thyroid disease have periods during which they switch from having low thyroid hormone levels to having higher levels. This is just in the nature of the autoimmune disease - with lots of questionable "explanations" from professionals and others. Such as hormone being released from thyroid follicles as the destruction continues. Some will eventually be shown to be real but others will simply be suggestions/guesses.

Periods of high thyroid hormone levels have all too often been mis-diagnosed as Graves. If you just go by FT4 and FT3 you typically see both somewhat elevated - along with symptoms associated with hyperthyroidism. But usually the thyroid hormone levels are not nearly as high as Graves can reach.

This if why it is so important for Graves to be diagnosed by TSH-receptor antibody testing. TRab or TSI (thyroid stimulating immunoglobulin). If negative, it is likely a "swing" rather than Graves.

Non-specialist doctors all too often fall into this trap.

But it is also entirely possible to have destructive autoimmune thyroid disease and ALSO have Graves. Which can cause a complex pattern of thyroid hormone levels over many years. With destruction of the thyroid, the maximum possible thyroid hormone levels drop.

J972 profile image
J972 in reply tohelvella

Hi helvella,

How commonplace would you say this combination is? I’m not after figures but a sense, based on your understanding and experience. For example, if you were to (quite innocently) say to an endo “It’s quite rare to test positive for both TSI and TPO antibodies, isn’t it?” would you expect derision and sneering from said diabetes specialist? Just wondering.

helvella profile image
helvellaAdministrator in reply toJ972

That actually highlights another aspect that I just ignored for the sake of simplicity!

TPOab (and even TGab) quite often test positive in Graves - even when there is no real suggestion that the person currently has Hashimoto's. That is, no other evidence of thyroid gland destruction.

However, the whole area is more like a bog than a swimming pool. Totally muddy.

I ran this search:

europepmc.org/search?query=...

And immediately found a couple of relevant papers:

Epitopes specificity of antibodies to thyroid peroxidase in patients with Graves' disease, Hashimoto's thyroiditis and overlap-syndrome.

europepmc.org/article/MED/3...

FRI549 The See-Saw Theory - Hypothyroidism Due To Hashimoto's Thyroiditis Followed By Hyperthyroidism Due To Graves' Disease

europepmc.org/article/PMC/P...

And there are many more. The science is in no sense settled, still less the medicine side.

No - I do NOT understand it all. Just enough to realise that we end up having to go by our day to day, week to week, symptoms and not read in too much to antibody tests however useful they are in establishing some diagnoses.

J972 profile image
J972 in reply tohelvella

Thank you, I was aware that TPO antibodies can also indicate Graves’, however, my daughter’s thyroid blood tests are paradoxical. They warrant a separate post, which I plan to do soon. I found the encounter with the endo very difficult and I really tried to go in with an open mind. There were other factors which worsened the experience but i shan’t go into them here.

tattybogle profile image
tattybogle in reply toJ972

"For example, if you were to (quite innocently) say to an endo “It’s quite rare to test positive for both TSI and TPO antibodies, isn’t it?” would you expect derision and sneering from said diabetes specialist? Just wondering."

Some detailed info here J972:

thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/

plus other articles listed under category - 'thyroid autoimmunity'

thyroidpatients.ca/home/sit... thyroidpatients.ca/home/site-map/

J972 profile image
J972 in reply totattybogle

Thank you very much , I’ll take a careful look through all those links. 🙏

Fizzwhizz profile image
Fizzwhizz in reply tohelvella

Gosh it’s so complicated. I thought I was getting better informed and had some results that pointed to an answer. Now I feel I need a battery of further tests to include Graves antibodies, Sjorsens, coeliac and can imagine the pushback from the NHS. I only have these results after medichecks and another private blood test plus I was paying for HRT which might have been doing more harm than good. 🙈

helvella profile image
helvellaAdministrator in reply toFizzwhizz

It is very complicated.

In general, doctors who have not come across these issues are very likely to get things wrong. I think only doctors who have experience are likely to understand. And we without any medical training simply have to do the best we can. But it is a tough path to follow.

Rexz profile image
Rexz

Well, I'll throw this out there. Just based on your confirmed Hashimoto's. Based on Hash, dry eyes, and possibly digestive issues (weight loss), I would have yourself checked for Sjogren's Syndrome another autoimmune disease. This is a simple blood test for SSA ab and SSB abThere is documentation where Sjogren's is loosely associated with Pernicious Anemia, Pernicious Anemia is firmly associated with Hashimoto's where it is known that 40% of those with PA have Hash. I happen to have been diagnosed all three, PA, Hash, and Sjogren's. YAY! 😜

One of the most common manifestations of Sjogren's is dry eyes. Then there are dry mouth and chronic dry cough. My SS has manifested in the latter. Which was both terrible and funny during COVID when out in a public place and I'd cough to see all heads snap and turn towards me with this look of daggers!😊

Best wishes, Rexz

Fizzwhizz profile image
Fizzwhizz in reply toRexz

Thank you. I’ll make a note of that. I did read about Sjorgen’s and I did have very low folate at one point which was causing issues. I have a symptom list a mile long so trying to unpick what’s what isn’t easy especially with menopause in the mix. I already have Raynuards and rosacea…. I’m wondering about possibly being coeliac too as that might explain the weight loss.

Buddy195 profile image
Buddy195Administrator

As others have said, please endure correct antibodies are tested, as I was misdiagnosed as Graves (palpitations, weight loss, tremor etc) but antibodies showed Hashimotos.

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 recommend you 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. An alternative is 1-2 Brazils per day (as each can contain 50-90ug according to soil type). It’s important not to take too much selenium as doses exceeding 400ug can be toxic.

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.

I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.

I 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.

I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health, so this is worth considering if you have any concerns about your vision.

Above all, be careful when searching on line. Remember, Google images etc focus on ‘worst case’ scenarios.

For me, my symptoms massively improved when thyroid levels and key vitamins were optimal. My TED ophthalmologist & endo supported a trial of combination treatment (as my conversion was poor). This made a huge difference to my eye swelling. I still have slight misalignment and one ‘glassy’ eye (more noticeable in photographs). I also have light sensitivity (esp peripheral) & need to wear reactive lenses.

Fizzwhizz profile image
Fizzwhizz in reply toBuddy195

Thanks, I have an NHS endocrinologist appointment this week. After years of being told by GP bloods in range though I’m scared they won’t take me seriously. I have a battery of private tests that show low vits, creeping up cholesterol, though NHS test said this was in range the bad cholesterol is higher, and my recent antibodies tests are private. My TSH is sitting in range and so are my TS3 and 4 though both low. I have a list a symptoms a mile long and am sure they’ll dismiss me as a woman of a certain age. I have a private appointment too online but not sure what to expect. I feel wary after private HRT was only looking at those hormones and actually increasing my oestrogen dominance. Getting referral from the NHS for testing for coeliac, Sjorsens, optometrist etc feels like pie in the sky and I dunno how much private treatment will cost. I also have intermittent pain under my right rib which I think is possibly gallbladder which is connected to thyroid function too. 🙈

Buddy195 profile image
Buddy195Administrator in reply toFizzwhizz

Unfortunately it can be a lottery with endocrinologists, as some specialise in diabetes rather than thyroid. Sadly, some are happy if thyroid readings are ‘within range’ rather than optimal. I would write down all your symptoms/ questions prior to your appointment. Sending you best wishes 🦋

Fizzwhizz profile image
Fizzwhizz in reply toBuddy195

Yes, that’s my worry. At least I now have some out of range results to show rather than just a long list of symptoms. I have no intention of being unprepared /fobbed off this time. It’s been going on for years. Thank you. I’m actually going to ring the hospital tomorrow and see if I can possibly see someone with an interest in thyroid/menopause symptoms.

Muffy profile image
Muffy

My daughter lost so much weight before she was finally diagnosed as hypothyroid. Not everyone has weight gain.

Benjipuss profile image
Benjipuss

Spotting , however slight, post menopause should always be checked out . Please see your Dr to arrange a scan .

J972 profile image
J972 in reply toBenjipuss

Yes but it can also be entirely normal and a result of one’s body adapting to the hormones. It’s a known side effect, certainly in the first 6 months of a newHRT regime.

Benjipuss profile image
Benjipuss in reply toJ972

I see! Though I’d still be cautious!

Fizzwhizz profile image
Fizzwhizz in reply toBenjipuss

They won’t scan in my area. Told me the protocol is to wait 6 weeks and see if it stops. It has so doubt they’ll scan.

Benjipuss profile image
Benjipuss in reply toFizzwhizz

In my limited experience a scan is offered asap. I’ve had two, but am not on hrt . First time was clear , second time a polyp. Wish areas provided similar services

Fizzwhizz profile image
Fizzwhizz in reply toBenjipuss

I agree it’s not helpful that it’s different in different places. I questioned her as I asked for a scan and she said the protocol was waiting 6 weeks to see if it stopped. I’m not sure what the NICE guidance says. I’m fairly sure it was because my body wasn’t clearing the HRT effectively which is another issue to do with low thyroid function.

Benjipuss profile image
Benjipuss in reply toFizzwhizz

I’m just a tad concerned for the poster as has lost weight too ( though obvs may not be an issue)

Fizzwhizz profile image
Fizzwhizz in reply toBenjipuss

Yes, I was concerned about this and said obviously my concern was cancer but that wasn’t really focused on and as a different GP had referred me to endocrinologist this GP seemed to leave it at that. Maybe I should push for a scan. I’m not sure they will though if that’s not the protocol. It’s so confusing. I thought any post menopausal bleeding was a concern. 🤷‍♀️

Benjipuss profile image
Benjipuss in reply toFizzwhizz

Agree, take care. Most are not cancer but can still be an issue

Fizzwhizz profile image
Fizzwhizz in reply toBenjipuss

Thanks, I might try see if I can push for one, especially as I’m now pretty sure I have thyroid issues as well so my body’s had progesterone but oestrogen still been building up. I was concerned about this due to breast cancer too. It’s scary that there’s not more of a joined up holistic approach in my opinion.

Benjipuss profile image
Benjipuss in reply toFizzwhizz

I think you can ‘demand’ a test! You have to use the word ‘ demand’ : but obvs this may have changed over the years. I was told this by a much trusted Gp that has sadly retired! I’ve always had extra oestrogen but not been a problem as far as I know . I agree. I wish there were Drs with medical and knowledge of natural methods too. Some positive consolation in that in most cancer tests most people are negative. Take care x

Fizzwhizz profile image
Fizzwhizz in reply toBenjipuss

Thanks, I think I might insist! I know, I’m reading a thyroid book by a sadly deceased GP. He talks so much common sense and doesn’t over favour blood results above patient symptoms.

Janeylou69 profile image
Janeylou69

Hi fizzwhizz I had weight loss as well for a bit ,I'm underactive ,and also my eyes are weird as well plus my eyes are really sensitive , do you have graves as well .

Fizzwhizz profile image
Fizzwhizz in reply toJaneylou69

Thanks, I don’t know. I’ve finally got some out of range results for antibodies via private testing. I’ve been back and forth from the GP for years saying I thought I had under active thyroid but got nowhere. I was also on private HRT and kept mentioning to her that I thought I had thyroid issues but she doesn’t deal with that. It’s frustrating as I’ve been banging oestrogen in and not really feeling better when maybe I shouldn’t have been on HRT 🤷‍♀️ I’m finally on it now though but so much to unpick and understand.

nettecologne profile image
nettecologne

I had Graves, TED and Hashimoto until I got rid of my thyroid. Pathology confirmed that I had both.

Fizzwhizz profile image
Fizzwhizz in reply tonettecologne

I hope you feel better now? Your story underlies the importance of proper testing and diagnosis.

nettecologne profile image
nettecologne in reply toFizzwhizz

I was tested constantly during 25 years. It changed, Graves antibodies high in beginning and TPOs too. Then only TPOs for 20 years, then Graves antibodies back with a vengeance plus TPOs. All antibodies always sky high. My body just deciding to kill me somehow;)

Catseyes235 profile image
Catseyes235

hi …I had dry stary eyes for quite some time before going on to develop full blown Thyroid Eye Disease which involved double vision and occasional scratches on the cornea. Eventually I had a very successful operation in 2001 and have been fine since then. Not all symptoms go on to get worse, often subside, and much depends on optimal treatment of your thyroid. My condition developed during menopause. Any connection I don’t know but eventually turned out I was a poor converter of T4 and TSH readings totally meaningless. Do have a look at this site. I also found TED foundation really helpful and supportive at the time. Good luck.

rarediseases.org/rare-disea...

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