[RebeccaJT]

#1018208

Hi Folks

To cut a long story short, ATDs are not working. I’m on a high dose carbimazole (and have been for about six months, with a bit of tinkering here and there) but I’m still going hyper on 30mg of carbimazole with 3x40mg propranolol – this is my third or fourth relapse into hyper symptoms. On my first round of 30mg I went hypo within about ten days, so it would suggest that my body has cranked up the thyroid hormones as my T3 is now nearly at 9 on 30mg. This is aggravating my TED. Was finally seen by a TED specialist surgeon last week who said hormone swings, and inadequate treatment to date has not helped my TED. His advice is total thyroidectomy. Am now awaiting come back from endo re dosage, drug regime etc and have requested an appointment to see him and discuss my options. Also after reviewing my medical history with my TED surgeon, he agrees with my endo that I’ve had untreated Graves for about five years (i can’t remember the last time I felt ‘normal’ or rested, or energetic, or serene to be honest!!). I’ve put on 28lbs, have double vision most of the time, my hair is falling out, and I’m so exhausted I can barely function.

My question is should I just get it over with and take the darned thing out???? This is what the eye docs want but it still feels drastic. I am very very tired of being ill!

The eye doc says there are ‘no implications’ for my eyes if I have surgery and then in the next breath mentioned steroids which doesn’t sound like ‘no implications’ to me. I told him I refused to take them and as far as I’d read the only reason I’d need to take them is if I was inadequately monitored and allowed to go hypo. He agreed that going hypo is the worst thing that could happen to my eyes. I then said in that case everyone would then have to work very hard as I was NOT going to take them.

My concern is here in the UK monitoring for GD is poor – with total thryoidectomy they would put me on replacement the next day (unlike sub total where they’d leave me for two months) but I’d probably have to buy private tests in between NHS tests to keep an eye on my levels. Also if I don’t tolerate thyroxine, then no doctor would prescribe me armour for fear of being struck off – it is very controversial here, the only standard treatment available is thyroxine (which I think you call synthroid). It used to be prescribed twenty years ago, but the drug lobby has put an end to that. So my only option would be buying my own armour on the internet and dosing myself, so I’m scared about that too! Trying to tell myself its highly unlikely that I won’t tolerate replacement.

I appreciate that as I’m still a bit hyper I’m probably thinking a bit too much – my head is swirling with options (which all feel like really bad options) but I really am at the end of my tether.

Can anyone advise re surgery and also the chances of me having to take steroids? Should I hang in there a bit longer on the ATDs?

Thanks

Rebecca

[Ski]

#1063264

Hi Rebecca,

You’re actually dealing with two separate (but related) conditions, so let’s try to draw those boundaries first.

Graves’ Disease, the thyroid disease, is why you are hyperthyroid, and why you would be deciding on thyroidectomy as your treatment.

If the ATDs have not been working for you this time, then you need to figure out how to achieve normal, stable thyroid hormone levels. There is one other ATD (PTU), and it can be effective in patients who do not respond to carbimazole. It is controversial here because it has recently been prohibited for use in children due to a potential of causing liver damage and, in rare cases, liver failure (both ATDs have that potential, but the risk is slightly higher with PTU). Perhaps this is something you’ve already tried, but I’m trying to cover all bases.

Thyroidectomy is a good way to treat your hyperthyroidism, and it sounds as if you have a handle on what happens after surgery in your healthcare system, so funding the interim testing to be sure your levels are good can shorten your recovery time and ensure that you don’t slip into hypothyroid territory for long. Thyroxine is chemically identical to our own thyroid hormone, the substance your thyroid is overproducing right now, so it’s EXTREMELY rare for people to be intolerant or unable to achieve normal levels using it. There are various inert substances inside the pill that some people are sensitive to, and there is a very strict protocol for taking the replacement hormone (empty stomach, wait 30-45 minutes to eat, wait 4 hours to take mineral supplements), so sometimes patients need to use another brand or pay closer attention to the way they take their replacement hormone, but taking the leap that you’ll have to buy Armour clandestinely and manage your levels alone is a BIT far to take this right now. ” title=”Very Happy” /> I understand, I was hyper too… Just try to manage what you can manage TODAY, and cross the next bridge when you know you must.

Thyroid Eye Disease (TED) is the reason you may need to take steroids. It is related to GD, and TED happens often coincidentally with GD, but in the strictest sense of the word, does not respond one way or another to thyroid treatment. It has the potential to be aggravated by radioiodine (RAI) treatment, so if you are experiencing severe TED symptoms, your doctor may not want to use RAI treatment. In a rather odd sideways twist, if you have RAI treatment AND take steroids concurrently, typically there is no aggravation of TED symptoms due to RAI, but that’s not the decision you appear to be faced with just now. TED can also be aggravated by going severely hypothyroid, but that typically resolves when thyroid hormone levels are stabilized, so minimizing your risk of becoming severely hypothyroid will serve you well.

If your doctor is recommending that you take steroids for your TED symptoms, then it’s possible that your doctor is trying to protect your sight, and also manage your "hot phase" so that you have a better result in the "cold phase." TED has a well-defined disease curve, but the actual time associated with the whole process is something that’s unique to each patient. It can be anywhere from one to three years, and cigarette smokers get the longer disease curve, but everyone who is conclusively dealing with TED has basically four phases of disease: an initial "hot phase" where changes are rapid and dramatic, a "plateau" where things don’t change much, a period of some improvement, and finally a "cold phase" where changes have ceased to occur. Some patients’ eyes return nearly to normal in the improvement cycle prior to the cold phase, and so they thank their lucky stars and move on with their lives. Other patients have continuing issues with bulging, double vision and tissue swelling, and once the cold phase is reached, those patients can look into surgical solutions for those problems. Surgery earlier than that could aggravate the condition and negate any benefit gained through surgery, so it is only recommended in the cold phase (except for patients who may be experiencing compression of their optic nerve ~ that could take your sight, so surgery is done on an emergency basis to save sight). Now, the reason I go through all of that litany is to let you know that steroids, used early enough in the process, can minimize the damage caused by the "hot phase" so that your eyes are in better shape when you ultimately reach the "cold phase." It’s true that they carry their own side effects (though none that would affect your thyroid hormone levels, FYI), and those risks must be weighed against the benefit of reducing the effects of TED’s hot phase, but I think you should have a frank discussion with your doctors about those specific points, rather than giving them an "I WON’T" statement. It’s important to have all the information, including your doctor’s insight, before you make that final decision. It is still your choice, after all is said and done.

I wish you luck! Let us know how you’re coming along!

[snelsen]

#1063265

HI Rebecca, I would like to share my experience with Graves’ AND TED. I will probably rattle on too much, but take what you will that is helpful. Ski’s excellent and factual email will be a good reference for you to review as you hear my experience. You eye doc is right to say that a thyroidectomy is unrelated to TED.

As Ski said, they are two separate entities. As you see in her email, and reflected by what I am going to say, prednisone is unrelated to Grave’s. So let’s talk about TED (which I have now.) My experience has followed the 2+ years time period. Probably more, for I went to a very good eye doc who completely missed all classic symptoms of TED, continuing to prescribe yet another pair of super expensive glasses, with small corrections. Of course they did not "help." Including that unknown period of time I am close to three years. Finally, when objects were swimming in my vision, when my scalp, head and back muscles were in spasm,my eyes were red and scratchy, I still did not know what was wrong. But the eyes tearing all the time were driving me crazy. So I stepped in an unknown eye docs office to ask about my eyes, tearing. I saw him for 5 minutes, he told me I had Graves’, sent me for an orbital CT, 20 minutes later, I could see for myself the thick, bulging muscles of my eyes,primarily the inferior muscles, the ones that allow us to look straight ahead and up. I could NOT do that without seeing double. So I had been unconsciously adjusting to that to see one object, buy tilting my head further and further back. I was in the hot phase for sure. Because my vision was changing every darn day. He held up 2, the 3 fingers on one had, 5 on the other, saying that I could plan on this lasting 2-3 years. That I should also see a neuro-eye doc to check my vision.
OK, about prednisone. A very useful drug to be prudently given during the hot phase of TED. I had oral pred once (60mgm a day for a month, plus a slow taper) and IV steroids twice. There was VAST improvement in my symptoms. The purpose, though was to reduce the swelling in the eye socket, which in turn was pressing on my optic nerve. It definitely has its’ place in the hot phase. However, as I saw the color red less clearly, and my visual fields were decreasing (although I really did not realize it myself) my optic nerve was threatened so much that I had to have an orbital decompression in the active phase to save my vision. It is not typical to have an OD in the active phase for any reason but that reason. Feel feel to write to me to ask more ? about TED.
Re Graves’. I had the same experience as you did. I did not respond to ADT;s. I kept swinging back to hyper. I was kind of a nutcase. I just wanted the darn thing OUT. Felt happy about that. Had the surgery. Went well. You Need to find a surgeon who does them frequently. My surgery was a sub total, so I did not need thyroid replacement for many years. (Based on how I felt, plus labs.) Finally got a little hypo. Began Synthroid. Important to take as Ski said. I love Synthroid, Have a lot of confidence in it. I have a lab once a year, or if I am wondering if I need more or less. An important thing for all of us to remember when dealing with Graves’, that is easy to forget sometimes on this board, is that we can feel differently, for reasons other than GRAVES! A thing or each of use, plus our docs, to remember.
As an aside, I am using someone else’s computer, it is Thanksgiving here, am in Sun Valley where it is 22 below zero, an I lived in England for two years. Gotta go!

[RebeccaJT]

#1063266

Hi Folks

I just wanted to check back in and thank you both for your posts and also update you with where I’m at. First the good news, I have stopped smoking entirely and was seen at the eye hospital last week where they were delighted with the improvements in my eyes and said more than any medical procedure or drug, smoking cessation was the biggest thing anyone could do to help my eyes. Pleased and proud of myself for that! I definitely have more lid definition (my eyes are less staring, the lids aren’t pulled back so far) and I think protrusion is better. They don’t want to see me again until May (although will be querying this date change, it was originally March, just to check the good old British NHS isn’t being stingy with resources!!). Doc said that whilst she couldn’t rule steroids out as my thyroid levels aren’t yet stable so my eyes are still changing with the swings, based on her current assessment of me I wouldn’t need steroids. PHEW! I am terrified of taking them, I know myself and I jsut know that I wouldn’t cope mentally with the side effects. She also said Prednisone is hard mentally to bear.

The not so good news is my double vision is worse and I’ve worked out (and this has been confirmed by both my endo and the eye surgeon) that it is directly related to my shifting thyroid hormone levels. I’m still not under control and I’ve been on 40mg carbimazole for several weeks now to no avail. Endo says biochemically I am ‘about right’ for this stage in the process (T3 8, T4 22 (up from 17 on 30mg, T3 didn’t change, TSH 0.03) and it’s a marathon not a sprint and as I’m so incredibly sensitive to any hormone changes they need to bring me under control gently and slowly, and run me at the top of normal range where I’ll feel happiest. Eye doc also says the worst thing possible for my eyes is being allowed to go hypO so endo is also listening to that.

Endo reckons that I will not tolerate surgery and in his opinion (he is a good and experienced doctor, at a leading teaching hospital in London – ie he’s one of the best in the country) I will most likely be in the significant minority (its about 10%) who do not tolerate synthetic hormone medication. He hinted at the whole Armour situation here and said, ‘medically that would leave me with very few options to help you’. He said my body hates its hormones being tinkered with and he feels that surgery is not the right choice for me and I should hang out for remission on ATDs. I’ve yet to ask him about PTU.

I am struggling greatly with weight gain (two stone now) and hair loss – both hugely impacting my self-esteem. I am also very agitated and anxious. I am incredibly tearful too – I cannot stop sobbing. I feel very down and sad and I’m losing hope that this treatment is going to work. Whilst I’m pleased about my eyes, I’ve now been on this hormone rollercoaster for nearly six months and I’m reaching my limit of what I can take. I’m also a recovering addict and I need to be careful to maintain my emotional balance so my sobriety is not put at risk. Plus as other people have posted, doctor and I worked out that I’ve probably been undiagnosed for about five years so have had years of anxiety, panic attacks and supposed ‘mental problems’ (believe me it was torment) for years and years and I’ve really had enough. I’m trying very very hard indeed to maintain a positive attitude but I’m finding this illness distorts my thinking and my feelings so that I almost feel a bit trapped inside it. I appreciate that self-pity won’t help me but I just feel very overwhelmed with it all at the moment.

Endo says surgery is still a choice if ATDs dont’ work but at present he seems to be shrugging off my symptoms with ‘you are doing fine’. I don’t feel fine and I’m starting to feel a bit desperate.

Also I’ve not really got to the bottom of whether I also have Hashis – I have a very high TPO antibody reading, others are negative although I don’t think my TRab antibodies have been tested.

sorry that is all a bit jumbled, I’m very tired today (brain fogginess is also at critical levels too).

Some light at the end of the tunnel would be greatly appreciated and thanks for all your support so far.

Thanks

Love

Rebecca
x

[RebeccaJT]

#1063267

oops seemed to have posted the same information twice, sorry! x

[Bobbi]

#1063268

The eye disease is a separate autoimmune disease. Wonky thyroid levels can cause an aggravation of symptoms of the eye disease, but controlling your thyroid levels does not control the development of the eye disease. I had the eye disease ten years ago, and was left with only intermittent double vision. But it is always worse (the double vision) when my thyroid levels are "off." The reason is that there are six muscles (three sets) in each eye that must work together to provide single vision (as opposed to double vision). When the thyroid levels are off, those muscles are not working properly, so the symptoms like doubling increase. But this doesn’t mean that controlling the thyroid levels controls the eye DISEASE.
The eye disease is caused by antibody action, not thyroid levels. Some unfortunate people develop the eye disease without ever having out-of-whack thyroid levels. So you need to separate the two conditions in your mind when it comes to thinking about treatment issues. Taking the steroids, if needed, could save your sight. Yes, there are serious side effect issues. No question. Typically, though, steroids are not even ordered, here in the States, unless the optic nerve is threatened, and the issue becomes one of weighing possibly blindness against the side effects of the steroids. Sometimes, there can be surgical interventions to ease up the conditions around the optic nerve, but this, too, is an extreme intervention (akin to the steroids).

[lhc11]

#1063269

Hi Rebecca,

I don’t really have any advice for you but I wanted to offer my sympathy and encouragement, and also say that for someone experiencing fluctuations in her levels/symptoms for going on five years that you actually seem to have it very together; when I was hyper I couldn’t write a coherent two sentence email!

If I were you I would want to ask your doctor what he means by saying that you "wouldn’t tolerate" surgery and what makes him think you would fall into the minority of those who can’t take Synthroid. I’m not saying I don’t believe your doctor, and maybe he did tell you why already, but I’m just curious. I know it happens–one of my neighbors has Hashi’s and then it took forever for her to convince her doctors that she needed to take Armour rather than thyroxine, though this was a long time ago. I asked my doctor about it prior to my surgery in June and she was not concerned (but, as you say, we have access to Armour in the US) — and as it turns out I have been lucky and Synthroid works fine for me. Of course you would not want to take the drastic step of undergoing treatment (RAI or surgery) that would put you in a position of needing a drug (Armour) that you can’t access where you live! So I can certainly understand being scared and sad; maybe asking about PTU is a good idea, if you have not.

On a more cheerful note, many congrats on quitting smoking! That is a HUGE achievement, especially for someone going through what you are, and you should reward yourself with whatever makes you feel most good (other than smoking or any other addictive substance, obviously) right now.

Hang in there,
lhc11

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