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[Jayniebobs]

I'm 50 this year, I've had an underactive thyroid for around 10yrs been good for a while now on 125mg levo , b12 deficiency 3 mth injections for a couple of years and now myasthinia gravis october 2020, waiting for MRI, today was told also have thyroid eye disease,(even though drs told me I couldnt have it, not right thyroid disorder) also menopause, just need some guidance, I'm a bit lost feel like I'm losing the plot! Been internet trawling but just wondering if any of you out there have same issues xxx

[Buddy195 Administrator]

I have TED and Hashimotos, so you are not alone with this. I would recommend you take 200mcg selenium daily for minimum 6 month as this can help. Good eye drops are important too- eg HycoSan or HyloForte (both preservative free). Try to see a TED specialist ophthalmologist- TEDct are a good organisation for information & can recommend specialists in your area. Please don’t worry unduly, as there are many treatments that can help. What eye symptoms do you currently have?

[Jayniebobs in reply to Buddy195]

Nice to meet you, I've a lot of double vision, it's when I'm getting tired or when I've been driving for more than 20mins, which I've been adjusting my life around this, I've a prism in one lense of my glasses and its great but because I only wear glasses for distance, when I've taken them of I cannt see a bleeding thing. The dr suggested I get clear glasses with a prism in for reading.

[Buddy195 Administrator in reply to Jayniebobs]

I’m glad the prisms are helping. I had an occupational health review at work as I needed some adjustments (eg dimmer switch for lights/ larger pc screen, more breaks from screen etc). I need to wear yellow over glasses for night driving & reactive lenses at other times, as I’m very sensitive to lights. I’m currently trialling T3 in addition to Levo & it is helping to alleviate some swelling & discomfort (recommended by TED specialist ophthalmologist). Do you have your latest thyroid blood tests? Being on an adequate dose of Levo is very important.

Ps when I posted on the forum re peri menopause I was recommended The Hormone Cure/ Goddfried which is a really useful book & helped me find supplements that matched my symptoms- lots of questionnaires to complete to see what suits you.

[Jayniebobs in reply to Buddy195]

Just waiting for appointments, so will post when results are in. Thank you will get ordering what you've suggested.

[Jazzw]

I'm 50 this year, I've had an underactive thyroid for around 10yrs been good for a while now on 125mg Levo

When you say “been good”—according to whom? You? Or your doctor? We find oh-so-commonly here that people aren’t actually on the right dose of levothyroxine for them but that their doctors believe they are because they’re dosing according to the TSH. When people aren’t on the right dosage, other problems tend to come along, like B12 deficiency, folate deficiency, ferritin deficiency and Vit D deficiency because low levels of thyroid hormone result in poor gut absorption.

And sure enough...

b12 deficiency 3 mth injections for a couple of years and now myasthinia gravis october 2020

Three monthly injections often aren’t enough. Many need them every 8 weeks at least, some actually need them weekly or daily.

waiting for MRI, today was told also have thyroid eye disease,(even though drs told me I couldnt have it, not right thyroid disorder)

Wrong again, doctors. Actually, you can have thyroid eye disease with Hashimoto’s Disease, the autoimmune disease which frequently causes hypothyroidism. It happens less commonly with Hashimoto’s than it does with Graves, but it does happen sometimes.

So by now (if not already) you’ll be getting the picture. Our doctors often don’t know very much about hypothyroidism. They maybe get an afternoon lecture on thyroid disorders at uni and forever afterwards believe that levothyroxine, titrated to the whims of the TSH, is all that’s needed to resolve this “simple” medical issue. Hey ho. Sometimes it is that simple. But for many of us, it really isn’t.

also menopause

Ah yes. Doctors like to blame menopause for middle-aged women feeling ill. Saves having to look for the real problem.

just need some guidance, I'm a bit lost feel like I'm losing the plot! Been internet trawling but just wondering if any of you out there have same issues xxx

Oh yes oh yes oh yes. But I’m happy to tell you you’ve found the right place!

Right, first things first. Do you have a copy of your most recent thyroid blood test results? If so, post them here and people will let you know what they think. If you don’t, you have a right to your own blood test results, so ask the receptionist at your local surgery to print them off for you—and then post them here for comment.

[shaws Administrator]

Welcome to our forum. I'm sorry you have several autoimmune diseases.

A B12 deficiency? Did they check that you do not have Pernicious Anaemia (rather than a B12 deficiency?)

This is some advice to get the best possible blood test result for thyroid hormones:-

Always get the earliest blood draw, it is a fasting test and allow a gap of 24 hours between last dose of thyroid hormones and the test and take it afterwards.

Request, B12, Vit D, iron, ferritin and folate if you've not had these tested.

Get print-outs and post on a new question.

[Thenightowl in reply to shaws]

If I can comment on this- I definitely wouldn't recommend getting b12 tested again as it's not supposed to be tested once on injections. Your levels will be higher because of the injections, and many GPs are offering testing to get people off injections, saying that they no longer need them (unbelievably, even if they have pernicious anemia!). They are putting people on tablets, which they can't absorb. There are a lot of people having this problem on the b12 society forum. From a questionnaire sent out to members of the pernicious anemia society, I remember reading that only 7% said that they thought injections every 3 months were enough for them. The 3 monthly regime was based on test results and not symptoms, from a cost-saving study.Whether you have pernicious anemia or not, if you have previously tested low, without being on a strict vegan diet, then you are not absorbing it and injections are needed for life- which it sounds like you are already on. The intrinsic factor test for it is only 40-60% accurate anyway.

But you might need injections more frequently, and good folate levels are needed for your body to make use of the b12 that you do have.

Definitely get ferritin tested, under 30 is low, around 100 is optimal.

[Jazzw in reply to Thenightowl]

Thanks for posting this. That’s my read of the situation too. Many doctors just don’t seem to understand that having an injection of B12 will substantially raise B12 levels but that it doesn’t mean it’s bioavailable (usable by the body). And loads seem to think that tablets will do instead of injections when many with PA can’t absorb via their gut very well.

It’s a shocking situation. But sadly becoming increasingly common. Maybe there’s just too much for GPs to know these days. Except nothing much has changed regarding treatment for B12 deficiency, PA or thyroid disorders in 40+ years...

[SlowDragon Administrator]

Hashimoto’s can also cause thyroid eye problems. Swollen eyes, dry gritty eyes

Sounds like you need to get full thyroid and vitamin testing

Common for thyroid levels to get a bit haywire around menopause

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common with Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[mb008]

HiI am 52, with hashimotos and like you feeling okay until recently. My problems resurfaced when I tried switching to erfa from thyroid s. Realy struggled but thankfully been able to source thyroid s again. Started back on that and hoping symptoms settle down. I'm worried about menopause too and how that may throw everything out of whack potentially.

Last few days my eyes have been really dry. I use drops, but it feels dry behind the eyes if that makes sense to the point that my eyes feel as if they're scrunching from the back.... my skin and hair are so dry as well.

I just wanted to let you know that there is someone going through something very similar. Please do let me know how you get on. This forum has helped me so much when I've felt low or unsure.

I am taking cod liver oil, but then found omega 7 tablets so started on those, plus hydrosan drops.

[pennyannie in reply to mb008]

Please just ensure that the lotion, potion, spray or drops you use for your eyes are

presrvative free : and you may well neeed to change products from time to time .

[Starfish123]

Of course you can have Ted with hasimotos, it’s just more likely to be hyperthyroidism than hypo.

You could try buckthorn oil supplements they help with dryness, I find I don’t need drops as much during the day. I also found it solved internal dryness that I had, I wouldn’t be without them now.