Feeling hopeless and scared....

[lizlou29]

Doctor said it could be hypothyroidism but results were only borderline so treatment might not be necessary. . Going to talk to my opth about it tomorrow as I have seen suspected a thyroid problem for quite a while.

[littlemermaid]

Yes, important. If GP is a non-starter even with the severe dry eyes, he might be able to do a referral to an endocrinology consultant, or he might have to recommend the GP do it, depending on what your local system is. Another possible is to ask Patient Services for your NHS Trust to find you a GP who manages thyroid conditions because there can be a big difference in knowledge and experience. I think you are right not to attempt tea tree shampoo eyelid margin scrubs without his advice because your eyes have been very sensitive. We stop them in flare up. If he's interested, something might come up at the conferences because there are Ophth there who are doing well with this.

You need to have a chat about Nurse-zilla and what he wants you to do when he's not in clinic. And follow-up Appointments Booking disasters. I would stick with this one if it was me, he is kind and thoughtful despite the difficulties of the NHS he bears for his patients.

[NotADryEye]

Were you diagnosed borderline hypothyroid or borderline Hashimoto's hypothyroid?

[lizlou29]

I was borderline hypothyroid. Just had a blood test for it again today.

[NotADryEye]

Ok. Let us know when you get the test results.

[lizlou29]

NotADryEye- I had the results today and I still have a high TSH, the opthamologist I spoke to sent a memo to my doctor (GP) to suggest starting on thyroxine again. I spoke to her saying I want it investigated more thoroughly because I think it is a cause of a lot of the problems I am experiencing (not just my eyes) and she said I just need to start on thyroxine and she will monitor the TSH. I'm not happy particularly because my brother is having to have radioactive iodine treatment because he didn't receive the proper care from his GP and his endocrinologist said he could have avoided it if they had treated it properly in the first place. I know it's a different type of thyroid problem but I don't think my GP is taking it seriously enough.

[lizlou29]

I've persuaded my GP to order book me for a thyroid antibodies blood test to see if it is Hashimoto's, but I was wondering as I had a negative ANA would it not show be positive if my thyroid antibodies are high? I'm a bit clueless about this.

[NotADryEye]

NotADryEye- I had the results today and I still have a high TSH, the opthamologist I spoke to sent a memo to my doctor (GP) to suggest starting on thyroxine again. I spoke to her saying I want it investigated more thoroughly because I think it is a cause of a lot of the problems I am experiencing (not just my eyes) and she said I just need to start on thyroxine and she will monitor the TSH. I'm not happy particularly because my brother is having to have radioactive iodine treatment because he didn't receive the proper care from his GP and his endocrinologist said he could have avoided it if they had treated it properly in the first place. I know it's a different type of thyroid problem but I don't think my GP is taking it seriously enough.

lizlou, an elevated TSH indicates a sluggish thyroid. I have Hashimoto's (indicated by high TPO) and for me the issue is therefore thyroid inflamtion and resulting hypothyroid. It is clearly your decision, but hypothyroidism is relatively easy to treat with synthetic thyroid hormone. The key is getting the right dose - not too high and not too low - and the dose you need may vary over time.

Keep in mind that the thyroid controls numerous functions, more than the eyes, but also eye secretions. If you are hypothyroid you can have aqueous deficiency and poor slow meibum secretion. Your skin can be dry. I ended up with kidney stones. I'm sure you know about many of the symptoms. Delaying treatment can make things worse. In my case, when I was undiagnosed, I believe hypothyroidism contributed to a severe recurrent corneal erosion after an eye injury. The wound in the cornea kept opening. This went on for a year and healed only after two stromal punctures.

When I was finally diagnosed with Hashimoto's it was a great relief and I started Synthroid immediately. Of course, and again, this is your choice.

Clearly there are thyroid issues in your family. My husband, as it turns out, is hypothyroid, with borderline Hashimoto's, which is rare for men, but nevertheless, his TPO is slightly elevated. We aren't genetically related but we are both Eastern European where Hashimoto's is relatively common. I have an aunt with Hashimoto's.

It sounds like your brother may have been hyperthyroid, which is more difficult to treat. But once you are hypothyroid, it is rare to become not hypothyroid.

Why did you stop taking thyroxine?

If you'd like to talk off line, let me know. I can call you via skype. Feel free to send me a pm.

[NotADryEye]

I've persuaded my GP to order book me for a thyroid antibodies blood test to see if it is Hashimoto's, but I was wondering as I had a negative ANA would it not show be positive if my thyroid antibodies are high? I'm a bit clueless about this.

I had an elevated ANA, but was not diagnosed with arthritis and my TPO number was very high. However, I'm not sure if ANA would have to be high if TPO is high.

[lizlou29]

NotADryEye - I just tried responding to your PM but it says you aren't accepting messages :/

I have started taking the Levothyroxine again. I stopped because I was having palpitations that turned out to be down to the sleeping med I was taking. My GP isn't convinced I have hypothyroidism as I've had varying TSH results between 3 and 7 in the last nine months but she has restarted the Levothyroxine on the advice of the opthamologist.

I am having the thyroid antibodies blood test next week now as they cancelled it today....

My 30th birthday is in November and I had been planning a holiday but there is no way I can go away in the state I am in at the moment. It's so frustrating when I think back to how good things were a year ago. I guess we all think like that.

[Guest]

My 30th birthday is in November and I had been planning a holiday but there is no way I can go away in the state I am in at the moment.

Maybe consider going on the holiday anyways? It would be good for your spirits to get away, wouldn't it? Just a thought...

[elena]

Have you tried scleral lenses?

Hi, lizlou29 - Apologies if someone already suggested this on this thread and you've responded about it (it's a very long thread!), but have you tried scleral lenses? My situation was similar to yours with the exception of the insomnia, which is obviously a major additional factor - I'm 32 and my dry eye started when I was 28 - I felt like the rest of my youth was robbed from me; I was very depressed and crying constantly, had considered breaking up with my long-term boyfriend so that he didn't have to carry the burden of constantly supporting me through it, etc... I had tried everything that was suggested to me by doctors (many of whom really understand shockingly little about dry eye...if I hear "some eye drops should take care of that" one more time i think I'll lose it) and had lost hope that there was anything out there that could help me in the slightest. The thing that finally turned my life around was scleral lenses. The worked almost instantly, from the moment I tested a trial pair in the doctor's office. They require a lens specialist to get fitted and have them ordered, and there may not be anyone like that in your area which may be why your doctors haven't suggested them before (assuming they haven't). They're also somewhat controversial because not enough long-term studies have been done to satisfy the powers-that-be that they're "clinically effective" (my insurance company won't cover them as medical, for instance - they consider them cosmetic), and they don't work as well for everyone - but I had such great success with them that I'd hate to see anyone suffering not even give them a shot.

Best of luck, lizlou29 - I truly, truly hope you find your way out of the pit you feel like you're in. I know that feeling....it's terrible. It sounds like you've been feeling better over the course of your thread, and the community here is really spectacularly supportive. Sometimes it helps just to know you're not the only one feeling the way you do.
Please keep us posted.
elena

[lizlou29]

Elena - yes i should probably start a new thread!

The two consultants I have spoken to about sclerals have both said they wouldn't recommend them for me because I have MGD as well as AD so the risk of infection is too high. I'm not sure if part of it is down to the cost to the NHS. My current consultant said he would suggest saving up some money and going to Boston to get prose fitted but then he is probably earning about 5 times as much as I do....

I'm feeling better on the depression front. My sleep had got better but now the pain wakes me up at 3/4 every morning and I struggle to get back to sleep. I'm looking into my thyroid condition more and as I have low estrogen and progesterone levels I am going to speak to my doctor to see what can be done about that as I feel there is a link between these things and the worsening of my eye condition.

[NotADryEye]

NotADryEye - I just tried responding to your PM but it says you aren't accepting messages :/

So sorry about that. I've been having technical difficulties since the hacking, but everything seems to be working properly again.

I've had varying TSH results between 3 and 7 in the last nine months but she has restarted the Levothyroxine on the advice of the opthamologist.

I'm not sure about non-Hashimoto's, but with Hashimoto's the numbers can fluctuate wildly. There is something called thyroid storm. It becomes very active. You can become hyperthyroid for a while. Although I wasn't under the care of a physician, neither tested nor diagnosed, I believe this happened to me before Hashimoto's. My weight dropped inexplicably almost over night and stayed down for about a year. There were other things going on, but that was one of the classic precursors to Hashimoto's.

I am having the thyroid antibodies blood test next week now as they cancelled it today....

Remember to ask for the results, the actual numbers, not just the doctor's diagnoses of normal or not. The antibody number, for us with mgd, is important.

[dominorose]

Hi there,

I also have Hashimoto, and really think it's related. My endo says the lab results are normal but I would like to share it with you to be sure...

So my lab results:

T3L : 2,6 ng/l (standards: 2,0 to 4,4)
T4L : 15,7 ng/l (9,3 to 17,0)
TSH : 2,85 mUI/l (0,27 to 4,20)

Anti thyroglobulin antibodies: 25 UI/ml (standards: <115)
Anti thyroperoxydase antibodies: 466 UI/ml (<34)