Low TSH, normal FT4 and Thyroid Eye Disease. Conflicting advice from GP.

[Nadine70]

My TSH is very low, I have Graves and TED. My FT4 is mid-range and my doctor is trying to get me to reduce my thyroxine levels. I am getting puffiness around my eyes again and worried that I'm going back into an active phase of the disease. I had decompression surgery last year. I understand my TSH will therefore be surpressed. Confused whether I should actually INCREASE my thyroxine as being hypo is bad for TED, Help!!

[helvella Administrator Thyroid UK]

I feel exposed by ignorance about TED. You might find some specific information of use here:

tedct.co.uk/

Rod

[Nadine70 in reply to helvella]

Thank you very much.

It's quite scary the lack of knowledge some professionals have in this area.

[helvella Administrator Thyroid UK in reply to Nadine70]

My first interaction with a medical professional re TED, a specialist eye nurse, heard her expressly say that you cannot have TED and be hypothyroid. Although then very new to the world of thyroid, I had already read that it is possible in people with hypothyroidism, and those with nothing odd about thyroid hormone levels.

So, yes, there is much ignorance in exactly the place you'd hope for knowledge.

(This was not for me - I do not have TED.)

Rod

[Nadine70 in reply to helvella]

Thanks.

It's just so frustrating isn't it. I find I self-manage the disease much of the time. The USA seem to be much more aware and ahead of the UK regareing thyroid disease and it's treatment.

[shambles]

Hi Nadine70

If you have any concerns you should ask your GP for an appointment with your Ophthalmologist or call the hospital and ask for a same day appointment or your consultant to call you.

I have active TED and been told the following:-

Keep the TSH low as possible.

Do not let a GP or an Endo ever tell you to alter meds without full consultation with eye consutlant.

If you feel any change or disconfort to all the eye department immediately

The eyes take precedent over thyroid.

I have seen one of the top Opthalmogolists in the country and he said what Rod said! My point is that if the the Opthalamologists say no one knows enough about this eye disease, you can pretty sure your GP certainly doesn't know!

Yes going hypo, ie not enough meds can effect your eyes, so can stress, smoking, sleeping without enough pillows, all sorts of weather, light exposure, a rise in antibodies the list is long. It's a complicated disease. My eyes have been very good for the past 4 months and this last few days, terrible, yet I can't think that I have changed anything.

Might be good to post your blood results here if you can. I was told the same last year when my TSH was 0.24 (0.55-4.79)

I wish you well.

[Nadine70 in reply to shambles]

Hi thanks so much for your detailed response. It's so so good to hear I'm not going crazy.

I was discharged by both the opthalmologist and endochronologist 3 years ago as my thyroid was under control. I find this pretty unbelievable!!

My last results were TSH 0.013 and FT4 was 18.4. My GP has recommended a lower dose of thyroxine but I know that, as I am now midrange FT4, lowering my dose will probably not be the best advice. So I have not adjusted my meds. I read that,once you've had a thyroidectomy, the body confuses the levothyroxine with TSH and therefore it becomes surpressed. Can I ask you what your FT4 was when your TSH was 0.24?

The last time I tried to get a referral back to hospital, I was like a hot potato with both the endo and the opthalmologist arguing about who would see me (it's like a chicken and egg situation with the TED and my lab results being off).

I believe I have Graves disease but I'm not even sure which lab results to ask for in order to see what's going on with me.

My TSH has fluctuated a lot over the last eight years. I just feel totally at a loss what to do regarding my eyes, The thought of going through the decompression and squint surgery only to have recurring eye disease is so so depressing. I feel as though time is of the essence. A referral back to hospital will take at least six to seven weeks.

I really appreciate your advice and help, many thanks. I know I need to get referred back to hospital but it seems pretty futile as they were not very helpful last time where it seemed like the nirvana was to achieve a midrange TSH and FT4 lab result.

Regards Nadine

[shambles in reply to Nadine70]

I guess it all comes down to whether your eyes are active again or not? The only way to find that out is see the consultant. I am not sure if all hospitals operate in the same or that if you have TED you must have the same level of treatment regardless of where you live, although I doubt it.

I would urge you to call the eye clinic and ask for an appointment. They may say weeks/months but if you say you believe your case is urgent they should put you through to the Sister/Staff Nurse and they will help you with either an appointment or a call back.

I have played piggy in the middle with the eye consultant and endo, the eye consultant going to a room next to door and shouting at the endo. Madness. But the further 'chicken and egg' is, if you became too distressed over the situation it could cause a further flare up to your eyes, another reason why you should be seen as soon as possible.

On the plus side, I understand that people do suffer 'flare ups' and they can last from days to weeks but it is only temporary. Again if you are seen by the eye consultant, they can prescribe anti-inflammatory drops.

Here are my last blood tests that show my T4 being at the top end and TSH being out of range. I may have a slight T3 conversion problem. These tests were done in December. I am due more next month. As far asking for more tests, I'm not sure other than TSH what is relevant to TED. I am making an educated guess that if you had an infection, for example sinus that might impact your eyes or mimic TED. I would like to think that if you are see the eye consultant he will send you for an MRI.

Free T4 22 9-23

TSH 0.24 0.55-4.79 abnormal

Free T3 4.7 3.5-6.5

I am surprised that you say you were discharged 3 years ago, I'm not sure that is normal. I see an endo every six months or more if required and eye consultant every three months.

I take 125mcg of thyroxine, b12, vit d, magnesium and selenium. The selenium is not for long term use but reported to help with eyes.

I think I said my eyes have been out for the past few days, maybe it's the sudden change in the weather. Good weather = bad eyes, oh the irony.

I hope this helps and pray its only temporary for you.

[Nadine70 in reply to shambles]

Thanks so much for your help, I will take your advice. I'll post when I get some answers!

[TTLady]

Seriously Nadine get yourself back to the eye hospital. If your TED was far enough into stable to allow decompression then recurrence is rare and needs treatment now. Your opthalmologist will know this and should see you within a very short space of time. I suspect high dose steroids are what you need. TED is a separate conditionscondition from your thyroid issue and should be treated by an opthalmologist not an endo - don't let them mess with your eyesight!!

[Nadine70 in reply to TTLady]

Thanks very much, I answered rather than responded to your answer (see below)

[Nadine70]

Thanks very much, you're right, things wouldn't have progressed so much if I'd have been treated properly in the first instance.

I'll contact them first thing in the morning.

Thanks for your advice and support.

[TTLady]

I nearly lost my sight and have no colour vision in one eye don't get over looked like I did get the right treatment early enough xx

[Nadine70 in reply to TTLady]

I'm so sorry to hear that, however, I am not surprised. The last time I had a flare-up they told me I had to get a referral by the gp, in writing, and then wait for an appointment. Some two months in total. It's a disgrace and much depends on where you live and who your endo is.

Hoping you are well and healthy now x