[Bobbi]

#1066359

Hi, and welcome to our board.

Not everyone loses weight while hyperthyroid. Most do, but some actually gain weight. One of the harmful aspects of being hyperthyroid is that we lose bone over time, and muscle mass over time. Losing muscle mass, particularly plays havoc with our metabolic rate: muscle, even at rest, burns more calories than other tissues do. So, when we lose muscle, we cannot eat as much as we normally do without gaining weight. When we get our thyroid hormone levels back under control, and in the normal zone, muscle starts to slowly return. It doesn’t matter what treatment option we use, once our thyroid levels normalize, muscle starts to return. This looks to many people like weight gain, and it is, but it also signals a rise in metabolism, allowing us to eat more without gaining weight. When we are healthy again, we can go back to our normal activities, and our weight should normalize over time.

[Lissa]

#1018670

HI Guys ,
I have recently been dignosed with graves disease .

I went to my gp about 7 months ago because of chest pains I had been having aching musles and was also very tierd all the time . He then sent me for blood test which showed my levels were at 40 ! I was referred to a endocronoligist and after seeing him he confirmed I had graves disease . He had asked me if I had lost alot of weight which I have not in fact I have gained so much weight in the last two months my clothes are not fittng .I don’t think that he beleived me !

My gp had started me on some meds which gave me itchyness and made me feel worse so I stopped taking them .I am going for a nuclear scan today and I have to say am a bit scared I don’t know what this is and what its for !! The specailist told me he would then be putting me on more meds and I do have to say this all worries me as I have been told when you go on the meds you gain weight as I have already gained so much I don’t want to gain any-more cause I was already a tad overweight and I don’t need the extra kilos .

I was always a very active person now find myself to tierd to be going out doing things. All I seem to do is sleep ,eat ,work ,and drink. I find that I cannot drive my car of a night because I get so tierd that I fall asleep.I have sore eyes and a burning feeling in them all the time my musles ache I do come out of breath when I try to do any exercise and I have high blood pressure now and also a fast heart beat . The doctor says I also have tremmors although I don’t feel them .
I also get very scared and feel like everything is closing in on me although I have had a very bad year so far with family illnesses and sick animals and really just about every thing i touch seems to go bad . I can normally live with things like that but it all just seems to much .

I find myself searching for answers because the doctors dont seem to know or they dont want to give you the imformation you need .
Thanks for listening to My rambling .

[Corinne]

#1066360

Hi,
Your symptoms actually sound very much like mine! My dx was a recent one as well. Honestly I thought I was pregnant. I too gained weight and the fatigue and cloudyheadedness were almost unbearable. I also used to be active but find myself making up excuses to stay home and not go out with my friends….which of course they don’t understand. But the weight gain, which isn’t as typical as weight loss, really is getting to me! I find myself hoping that I will lose it all when I get treated, but I don’t think that will happen. I also have been avoiding working out, because its not good for my body when its in turmoil, and because I get out of breath really easily.

Anyways, the nuclear scan is probably just so that the doctors can look at your thyroid and calculate how over active it is. You take an Iodine pill, with very small amounts of radioactive iodine, 24 hours prior to being scanned (sometimes this can be an injection too, but Im not sure how often they do that anymore…). The scan itself is painless, and took me about 30-40 min. You just lie there and let the camera move around you. I almost fell asleep. But, because they know how much iodine they gave you, they can calculate how much was taken up by your thyroid (pretty much the only organ that takes up iodine) and give you a percentage. My doc said that upper level of normal uptake is around 30% (this number may be a bit different for your doc) and I was at 67%. They will use this number, and your bloodwork to calculate a dosage for medication (such as methimazole) or if you choose, to calculate a dosage for radioactive iodine treatment. This is a higher dose of radioactive iodine with the goal of killing off the cells of your thyroid so you are not longer hyper. But, all in all, the scan is really nothing to be too worried about. It is helpful to have a doctor to explain this all for you! But, this website is also really helpful so I hope you find some good information!! And I hope you feel better soon.

What medication made you react badly? Is it helping at all?
-Corinne

[Corinne]

#1066361

Oh, I forgot to mention, the scan is helpful for calculating uptake, but its also helpful to see if all regions of your thyroid are taking up iodine evenly. It is possible to become hyperthyroid because of nodules in your thyroid that are overly active. Nodules are just small portions of your thyroid, that are visible by the scan, that are more active than other regions (they will show up lighter or darker than the rest of your thyroid). This could indicate to your doctors that they have to investigate other reasons for hyperthyroidism besides Graves, because many Grave’s patients have thyroids that evenly uptake iodine. I think Grave’s is the most common cause of hyperthyroidism though, so really still try not to be too concerned about your upcoming scan!

[Lissa]

#1066362

Hi Thanks for the info I had my scan they injected my with iodine and then i was a bit freaked out by the scan machine . I had a wonderful guy who did the scan and he was very patient and ended up doing the scan with me sitting up .

The tablet that effected me was NEO-MERCAZOLE 5mg 200.I was put on three of them to start with maybe the dose was not right necause my gp put me on them

The doctor also asked me if I was getting hot and sweaty . Which this is not the case I am finding myself cold .When we drive in the car with the air con on I am cold and get goose bumps so I put a blanket on cause every-one else is hot because its normally around 38 to 40 degrees. Its also been hot in the mornings and onmy way to work I have the heater on in the car I also wear long sleeves and long pants for work and i work outside in the heat and I am not bothered by it at all.

Not sure if you are suppose to have sore throats but i find I do have a constant sore throat .
Do you have these as well Corinne ?

[Kimberly]

#1066363

Lissa wrote: My gp had started me on some meds which gave me itchyness and made me feel worse so I stopped taking them .

Hi Lissa – Was it your doctor that recommended you stop taking the meds? The reason I ask is that if you are hypERthyroid, this does need to be treated to avoid potential complications such as heart issues and muscle/bone wasting.

If you haven’t spoken to your doctor’s office about this, please contact them. There are two different anti-thyroid meds: Methimazole/Tapazole and PTU. Some patients who have itching issues with one will do OK on the other. If the itching is mild, your doc might recommend an anti-histamine — but if you have a severly allergic reaction, your doctor will probably recommend that you pursue a different treatment option, such as RAI or Surgery.

If you (and your doc) decide to stay the course with the anti-thyroid drugs, it is important to take them on a regular schedule, without missing any doses. Although the meds start working immediately to block production of NEW thyroid hormone, it can take a few weeks for the body to use up its existing stores of hormone — so it might take a little while to get some relief from your hypER symptoms. Also, I found myself very run down during the first couple of months on the meds, as my body had gotten used to being in a hypER state — so it took some adjusting to get used to "normal." Hang in there — and feel free to post questions here. There are many knowledgeable folks on these boards!

Best of luck!

[Kimberly]

#1066364

Lissa wrote: Not sure if you are suppose to have sore throats but i find I do have a constant sore throat .

Oops, I meant to reply to this as well. It’s a good idea to run this past your doctor, as he/she might want to do a White Blood Cell (WBC) Count to make sure that your WBC levels are OK. One of the rare side effects of the anti-thyroid drugs is that one’s WBC levels can become severely depleted. One of the symptoms of this is a *really* bad sore throat, often accompanied by fever. If it’s just a minor sore throat, this could be from the scan that you had done…but again, it’s a good idea to check with your doc.

[Kimberly]

#1066365

Corinne wrote: But the weight gain, which isn’t as typical as weight loss, really is getting to me! I find myself hoping that I will lose it all when I get treated, but I don’t think that will happen. I also have been avoiding working out, because its not good for my body when its in turmoil, and because I get out of breath really easily.

Hi Corinne – There are a LOT more of us struggling with weight gain than you might expect! I asked about this at the last conference, and one of the docs said that there *might* be a "resetting" of metabolism for some people who have thyroid issues. I know that my metabolism is very different than it was when I was diagnosed in 2007. Of course, I’m now over 40, so that might have something to do with it as well. ” title=”Very Happy” />

You might check with your doctor as to whether there are any activities that he/she feels would be safe for you. Trying to work out when we are hypER is dangerous — but as our levels come back into the normal range, it’s good to get those muscles stretched out and moving again.

[Lissa]

#1066366

Hi kimberly ,
It was me who stopped taking the meds because I was so icthy and also had a red blotted rash on my face .It took me five months to get the oppointment with the specailist so it was annoying . I was taking them for about four months before I stopped and I knew it was bad not taking them but it was just so annoying. I see him again on Thursday so i dare say he will put me on some more.

My sore throat is constant and sometimes goes away for a day or so only to come back again I forgot to mension this to the doctor as my memory has become so bad so I will start writing some things down to remind me .

thanks every-one for the information its very helpful taa

[Kimberly]

#1066367

Hi Lissa – Yep, the wait for a specialist can be very frustrating! But perhaps if you called the office to ask about the rash and the sore throat, they could give you some guidance before your visit on Thursday. My understanding is that the sore throat is usually REALLY bad if it is the white blood cell issue…but your doc’s office might want to err on the side of caution and check your WBC anyway. Best of luck!

[Corinne]

#1066368

Lissa-
I have definitely had the hot and sweaty-ness before I was taking medication, and when I forget to take my medication, etc I get hot. But, the sore throats I do not have. As Kimberly said you should definitely talk to you Dr about this symptom, as it is a rare side effect of the ATD’s to decrease your white blood cell count….resulting in sore throats/flu like symptoms so call right away so they can do some additional blood work and make sure everything is ok. I have heard of people getting sore throats after radioiodone treatment, but I dont think thats usually with low doses that you get when you get the scan, and I think it goes away pretty quickly (it didn’t happen to me though).

Kimberly- That is interesting to know that more people then I think have actually gained weight with GD. It has been really frustrating and the doctors look at me confused when I say I have definitely gained weight. It was like the opposite for me when I was still working out I was gaining weight (not just muscle because I could feel myself getting bigger, and not just the number on the scale) even when I was eating less than my normal amount of food and sweets. Now with ATD’s I still feel like I am gaining weight slowly, all in the tummy area. Its really frustrating. I think my body is still adjusting to the new medications (I have skipped 2 periods….did this happen to anyone- 3 tests told me Im not pregnant? It makes me think my body is freaking out a bit) But after I feel like Im adjusted I do plan to start a light workout regime (with help from my doctor) and diet. I can’t wait to get started, and to start feeling better.

Also, I was curious, after you decide you want to do RAI, and if I have been on the ATDS for just over a month now, is there a reason to have to wait 8 wks prior to doing the RAI? My doctor said make an appt for 8wks from now. I am anxious and I want to do it sooner. I was wondering if there was a reason to do this, like if I have to be stable for RAI, or is it just because she is busy and that was the first available appt with her?

[Ski]

#1066369

You do need to stop taking the ATDs in order to ensure that your body will take in the RAI (ATDs inhibit iodine absorption), and it takes a while for them to flush out of your system. Ask the doctor for the rationale for an 8 week wait ~ we find that many doctors have differing opinions, and it would be helpful for you to know your own doctor’s reasoning.

[Author]

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