[Kimberly]

#1064490

Stephster wrote:Is this the right amount of drugs ? How fast should they be working ? Also, I am so scared of gaining even more weight – I have put on 4lbs in the past week. As an ex large person, this scares me a lot ! I keep toying with the idea of taking less drugs, but I am also scared of the condition.

The internet is a great source of info, but also contains far too many scare stories, e.g. about thyroid storm.

I don’t know whether to keep taking the cipralex either, and I no longer trust my UK physician. The consultant says continue with it ?

Hello – Sorry to hear about your difficultites…but I’m glad that you finally got a correct diagnosis…*and* that you found us! I got to spend 5 days in London last summer (including a trip to Wimbledon) and sooooo want to go back!

The dosing of anti-thyroid drugs is a bit of a trial-and-error process. The first estimate is usually based on how hypER you are. Then, you should be getting blood work at least every few weeks to check your levels of Free T3 and Free T4. As your levels fall back into the "normal" range, your dosage should be reduced. It can take a few weeks to start seeing relief from our hypER symptoms. The meds start working right away to block production of NEW thyroid hormone, but our bodies still have a certain amount of stored hormone that needs to be used up before we start feeling better. Everyone is different though — I saw a huge difference in my levels in just 2 1/2 weeks.

Unfortunately, it is *very* common around the world to misdiagnose Graves’ as an anxiety or depression disorder. However, we are not doctors on this site, so we can’t tell you whether to discontine the cipralex. I would definitely consult a doctor that you trust about this issue.

Yes, weight gain is often an issue for patients who are treated with Graves’…however, your #1 priority right now is to get your thyroid levels back to normal. The sooner you can do this, the sooner you will be back on the road to good health! Since you have read about Thyroid Storm, you know that this is a potentially life-threatening complication. However, in *most* cases, Thyroid Storm happens in patients who have not been correctly diagnosed and whose thyroid levels are totally out of control. The fact that you have been diagnosed and that you are getting treatment is good news. The elevated heart rate and semi-panic attacks are actually pretty common when we are hypER…however, I would suggest getting a doctor’s advice on how best to deal with these.

Best of luck to you…feel free to post additional questions here…or just vent if you need to!

[Stephster]

#1064491

Thanks Kimberly ” title=”Smile” />.

We live slap bang in the middle of the UK, about 90 miles north of London. It’s only 1 hour on the train.

I only stumbled on this site by accident, but have been doing lots of catching up on the bulletin board already. It’s good to know that others have my symptoms/concerns. It sort of hit me last week, that yes I am actually ill and that I have a condition – I have actually given myself ‘permission’ to be ill now and am no longer pushing myself all the time. I have always been one of those get up and go, get things done sort of people, and have tried to maintain that even whilst feeling terrible. I had the urge to just keep going as ‘normal’.
I am no longer worrying so much about getting back to the gym ( not been for a few months ) and not fitting into my clothes.

I took the step of letting my friends know, just to explain why I have been so unsociable and irritable of late. Today I went to see Personnel at work to talk things through with them. I am a teacher ( 16-19 year olds ), and the job is stressful. I don’t need the extra stress of my line manager going mad, because I need to go for blood tests or am not at my best !

I feel like I am getting things back under control ! Thanks for letting me talk this out ” title=”Very Happy” />

[Stephster]

#1018395

Hi everyone

So glad to have found this bulletin board – I just feel in need of a bit of support and information and advice from people who really know about it. The more I read, the more scared I get !

I don’t know how long I have been hyperthyroid, but I gained 40 pounds when pregnant with my little boy, born last May. Mainly ‘coz I was just HUNGRY all the time and had lots of complications. The weight has slowly dropped off but stopped with 14 pounds still to go in about March time, as I could not stop eating, especially having cravings for lots and lots of suhary carbs. I have always been a gym junkie, especially body pump classes, but around the same time my muscles started to ache like crazy, culminating in hardly being able to move and feeling really weak. I also got really really anxious and was diagnosed with anxiety and depression in February, being prescribed 10mg of cipralex a day.

Long story short, my hairdresser started noticing my hair loss, I got diarrrheoa, felt nauseous all the times, had insomnia, sweats, racing heart and palpitations that went on for hours, tremors, etc. The doctors kept treating me for mental disorders. Eventually, I got to thinking that it was indeed all in my mind. Luckily, my parents live in Germany, and insisted I went to see their Doctor when I was visiting them. She immediately did thyroid bloods, which came back as free T3 and T4 three times above normal levels, and TSH below 0.001.

Luckily we have private medical insurance through my husbands work, so rather than waiting, I have been to see an endocrinologist already. With my family background ( thyroid problems on both sides ) he is fairly certain it is genetically based and Graves, although no eye disease is present. I am now on 40mg anti-thyroid drug, and a beta blocker.
My heart rate is still up, and my BP suppressed. He will be doing bloods and antibody test next week.

Is this the right amount of drugs ? How fast should they be working ? Also, I am so scared of gaining even more weight – I have put on 4lbs in the past week. As an ex large person, this scares me a lot ! I keep toying with the idea of taking less drugs, but I am also scared of the condition.

Two nights ago, I woke up in the middle of the night with a massive headache and my pulse was going at 100 bpm…. I was very very scared, which probably made it worse. Iced water and extra beta blocker did help, but it felt like I was dying. Sorry to sound melodramatic. I am honestly not a drama queen, this is just so scary.

The internet is a great source of info, but also contains far too many scare stories, e.g. about thyroid storm.

I don’t know whether to keep taking the cipralex either, and I no longer trust my UK physician. The consultant says continue with it ?

Anyway, thanks for any info/advice in advance. Oh I forgot to say, I am 40, live in England, am married, work full time and have a little boy aged 16 months !

[lhc11]

#1064492

Hi Stephster — it’s great that you found this site while you’re still hyperthyroid; I only found it when I was already quite a bit calmed down, and I could really have used the site (the best one as far as I am concerned) at the place you are at right now! I can’t comment on the weight gain you’re currently experiencing, as I lost a ton of weight while hyperthyroid (my issue is now that I’m gaining it back….when I would have liked to stop gaining it back a few pounds ago….). But I just wanted to say that my thyroid levels were about 4-5x normal and when I started on the anti-thyroid drugs I was taking 60 mg (20mg, 3x per day). It then went progressively down from there as my levels improved, until I was taking only 5 mg per day–I forget exactly how fast but I can tell you my levels weren’t in normal range for at least 6 weeks, maybe a little longer (I had my thyroid removed 9 weeks after my initial diagnosis). So you just have to try to be patient and hang in there–as almost everyone on this site will tell you, it DOES get better. I too had the palpitations that kept me from sleeping and the incredibly high pulse rate (in my case, 140!) and was on the beta-blockers…which I was then also able to stop taking.

It took me a long time to be able to accept that it really wasn’t all in my head. And I had doctors giving me anti-anxiety medication too, so I sympathize with your dilemma (I continued to take mine all the way through my surgery, but I had been on it before so didn’t have much of an issue with doing so; I’ve since gone off of it). But on this, as Kimberly says, you do need to consult with your doctor. I was of the opinion that I would take anything that might help while I was in crisis!

Again: it gets better!!!! Fortunately, they really do know how to help with this once they figure out what is actually the problem.

best,
lhc11

[bluewave]

#1064493

Hi Stephster,

I’m sorry to hear that it took so long to get dx. With elevated bp, an increased heart rate and family history of thyroid disease, a med student should have known to run a thyroid panel. I was undiagnosed myself for at least 11 months, and my endo couldn’t believe my other Drs missed it.

Only your dr can decide what dose is right for you, but you are pretty hyper. I was on 40mg methimazole for about a month after having been on 20 and then 30 for a few months. It took time, but it is helping and now I’m on 5mg/day and no beta blocker. However, the beta blocker really helped control my heart rate, heat intolerance, and even my nervousness in the first two months.

I think you shouldn’t worry too much about a thyroid storm since you’re on meds and under a dr’s care for your thyroid, but again, this is something to speak to your dr about to get his guidance regarding this.

Maybe you could get another opinion regarding cipralex. You said you have or had nausea and diarrhea — did these start only after the cipralex? These are possible side-effects of it, but I had both quite a lot while hyper, but the diarrhea went away very quickly on treatment; the nausea not so quickly. Also, I found my nervousness greatly reduced on the ATDs.

Hope you feel better soon.

[Stephster]

#1064494

Hi again everyone

Thank you for being so welcoming !

I am feeling a lot more positive today, as I feel I am starting to take some positive action, and also having found this forum really helps.

I got my husband to read the FAQ section last night, so that he has a better understanding to. I think it can be quite hard for family and friends to really understand what it is like – and I imagine I have been a little hard to live with over the past 6 months !

I have a question for you guys. In Europe it is usual for doctors to treat with anti thyroid drugs for 18 months to see if remission can be achieved . My doc says this happens in about 50% of cases. Apparently if this doesn’t happen I can try drugs for another 18 months, but of course there is always the danger of side effects, or radio active iodine. I understand that in the States, doctors are more likely to advocate RAI or removal earlier on, using the drugs to stabilise first. Is this correct ? Also, what are the advantages/disadvantages of each approach – speaking from personal experience .

Also on a more trivial note. I love coffee, and have really tried to cut down since my diagnosis. Would there be any benefit in cutting it out completely ? If there is, I will, reluctantly.
Did anyone else crave chocolate and other sweet things ? I am usually more of a savoury person, but have been really craving it. My diet has always been pretty healthy, but these cravings have been a feature now for about 6 months, especially at night. I actually wake up and raid the fridge.
What kind of exercise can I do ? Is body pump too much ? How high can my heart rate go ?

Sorry to ask so many questions, but the consultant hasn’t been that helpful.

Thanks

Steph

[Harpy]

#1064495

Welcome to the club Stephster
I am here by proxy, my partner is the patient.
You seem to have taken a fairly level head in the process and by what you have written it seems you may not have the brain fog issues as bad as some have had, which makes it very difficult to understand things and almost impossible to make informed decisions, so congrat’s on that side.
My partner also started the same way as you, her levels were about 10 times normal range.
The protocol in Australia is similar to Europe where 18 – 24 months on ATD medication is allowed for remission, my partner is at 3.5yrs now with positive signs of an increase in TSH levels. She is working with both the Endochronologist and a Naturopath and gets blood tests regularly to check for blood and liver issues where ATD’s may cause side effects, all her bloods have improved over the period, so far so good.
It took a few months to get her outward symptoms under control and her heart rate and other internal symptoms were much better after about 12 months, her physical damage such as skin and hair issues has been gradually getting better and now she is at the stage where everything is normal and she looks and feels better than she has for many years, just waiting for the TSH to continue upward, which is a sign of the body thyroid regulation system restarting, so she can start weaning of the ATD’s. She has been on PTU (50mg/tab) and the first 2 years her levels were jumping around as was her medication between 3-5 tabs, in the last 12 months she has gradually reduced to 3 tabs in March, and her levels are behaving in a predictable way, her most recent tests in july showed a drop in both T4 & T3 levels.
As for your question on coffee, everything you can do for your body will help you heal, so healthy nutritious diet and mild exercise, you can go a bit harder once your hormone levels get into the normal range, but stress will work against your healing process, so if giving up coffee alltogether will make you irritable & stressed then maybe just cut back on coffee.
I like the 80:20 rule, you will get 80% of the way with 20% of the effort, but it will take 80% of the effort to get the last 20%.
The only things I would avoid (my opinion) are Soy products, Trans Fats, take aways & highly processed foodstuffs, oh and also be aware of excessive iodine, ie use sea salt rather than iodised salt.
Good luck with your journey.

[lhc11]

#1064496

Hi Steph — to answer your question about different countries, yes, from everything I’ve read European doctors prefer to try the ATD route first, whereas American doctors tend to opt (or push) for more aggressive methods earlier on. I was given a much lower level of remission possibility by my doctors–more like 30%, with a chance of the problem returning down the line (but the endocrinologist also, interestingly, said that the percentage rates seem to be different with different populations). I am someone who opted for surgical removal for a number of personal reasons (my doctor would have let me do whatever I insisted upon), and you can learn more about that experience by searching for posts with the word "surgery" (or under my username, lhc11). Lots of people on this board have talked about their past and present experiences with RAI, too.

I was impossible to live with while very hyperthyroid! I, or rather Graves’ disease, put my husband and mother through probably the worst two months of their lives (as my mother is still telling me… ” title=”Wink” /> ).

best,
lhc11

[Kimberly]

#1064497

Hi Steph – You are correct that RAI is the most frequently used treatment in the U.S., but all three treatment options have pros and cons.

With Anti-Thyroid Drugs, you have the possibility of remission – but you have to watch for potential liver and white blood cell issues, which are rare, but serious side effects of these meds. When the meds are discontinued, there is always the potential that our hypERthyroidism could return.

Except in rare cases, RAI and Surgery will permanently take care of our hypERthyroidism. However, with either surgery or RAI, you will be on thyroid hormone replacement for life — and it does take some trial and error to find the right doseage that will stabilize your thyroid hormone levels and make you feel good. This can be a really difficult process for some patients.

As with any surgery, thyroidectomy comes with a risk of complications. The most common complications with this type of surgery are damage to the nerves around the vocal cords and parathyroid glands.

The RAI treatment is not recommended for women who are pregnant or who hope to become pregnant within 6 months. Also, in some patients, RAI can exacerbate eye problems.

As for the coffee, I personally switched to decaf after I was diagnosed. The problem for me when I was hypER was that caffeine made my hand tremors worse – to the point where it was obvious to anyone around me. I went “cold turkey”, but if I had to do it over, I would try to wean off slowly. Even with my levels regulated, I still find that a cup of regular coffee really give me the shakes, so I mostly use decaf.

Sweet cravings have pretty much been a constant state for my entire life. ” title=”Very Happy” /> But yes, I definitely notice that those cravings get worse when I am hypER.

As for exercise, only a doctor can tell you exactly what exercises are safe for you and what heart rate is considered acceptable. This question has been raised frequently on the boards as of late, so we hope to get some clarification from the doctors at our upcoming conference this October.

Hope this helps!

[cynthia]

#1064498

I can really appreciate your situation for more than one reason I am also a coffee fiend however my hyper episode took care of that or the meds anyway I could drirk a whole pot by myself in the morning but cut down to 2 big cups after becoming hyper….. the first thing I did the day after my sugery was go to the coffee pot ha ha I know it isn’t good for you but we all have our things let your body tell ya wha to do I have been ill for years with out really knowing it was on meth… then PTU combined 3 monthes had hard time with the meds side effects…. after surgery feel sooo much better will always recomend unless a physical reason for not having I really hated the meds so it was a easy choice for me good luck

[Lauri]

#1064499

Steph, I was not a big sweets eater, and still really am not, but when the HypER phase set in…I craved Ice Cream and cookies like crazy!!! Every night I had to have a big bowl before bed. Now that the HypO phase has started, I do not crave any sweets at all. And this week i am starting my monthly cycle, where i should be desiring chocolate, and it hasn’t happened as of yet…

As for the coffee…I was also a person who could drink a pot a day…probably stil could…but currently am down to 1-2 big cups a day as well…maybe one before dinner. I never had the problem with drinking coffee and having any side effects from the caffeine, and i do love my coffee… ” title=”Very Happy” />

[Stephster]

#1064500

Thank you for all the info – it’s really helpful to have some input from other people who have experienced this illness either directly or indirectly.
I have decided to cut back on the coffee, as I think giving up completely would make me far too crabby !
Glad to have found you guys and to be part of this forum:).

Steph

[snelsen]

#1064501

Coffee! The ritual of holding on to a coffee cup with one hand, the newspaper in the other, when I get up in the morning, is one of my favorites. Fortunately, the "moderation in all things" philosophy works nicely for me.
Shirley

[Stephster]

#1064502

Well I decided today that I may be chubby but that shouldn’t let that hold me back anymore. I am going to concentrate on getting healthy and then on getting thinner again.
So I have been and gone blonder, and bought some nice clothes rather than waiting to fit back into my old ones !
I also took my little boy for a nice walk in the English countryside, and met my friend for a cream tea ” title=”Smile” />.
I am still a little self conscious when out in public at how sweaty and hot I get. Everyone else was walking round wearing jackets today, and there was me in a vest top still looking flushed. I think the being permanently hot is one of the most annoying symptoms. I have got paranoid and started carrying round deodorant with me everywhere I go. In retrospect this was one of my first noticeable symptoms – I have always felt the cold and am a Raynaud’s sufferer !
Incidentally, does anyone feel more clumsy since being diagnosed ? I am forever tripping over things, knocking things over, dropping things. My memory is also terrible and I have become somewhat scatty. Being a teacher, I noticed about 3/4 year ago that I was forgetting what I was saying, or searching for a word whilst talking. Is this the ‘brain fog’ that others have been talking about ? I just put it down to being tired and stressed before.
Also, do people’s symptoms get worse when stressed. I had a pretty stressful day on Tuesday, and my muscle aches/pains came back with a vengeance ?
Wish I could make the conference. The dates are right as it falls into my half term, but sadly it would cost too much ! It would be good to meet up with others.

[Kimberly]

#1064503

Hi Steph – Love your positive attitude! Here are a few comments…

The sweating does get better once you get regulated. When I was hypER, I had certain shirts that I had to stop wearing because it was totally obvious how much I was sweating. Ugh!

I can’t really comment on the klutziness/Graves’ issue, as I have struggled with being a bit clumsy for my whole life. ” title=”Very Happy” />

Yes, *many* of us find that we have memory issues. It does get better once our levels are regulated, but I still notice that my memory is NOT what it used to be. I’ve also heard of patients searching for a common word and being unable to come up with it. There is actually a medical term for this, but I forget what it is. Seriously.

And, yes, I absolutely find that my symptoms get worse when I get stressed. I have been on anti-thyroid drugs for close to 3 years now. I mostly stay regulated, but have had 3 hypER episodes since my diagnosis, all of them related to stressful times in my life. Definitely a good reason to slow down and remember to BREATHE!

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