Hashimoto's......need some feedback

[pwilson30662]

I first noticed that something was wrong when my hair suddenly began falling out in large clumps leaving bald spots all over my head. I also had been feeling extremely tired to the point that it was affecting my everyday life as well as my job. I just chalked it up to being a busy mother of 5 including a set of 9 month old twins, that would wear anyone out right? I began to think that maybe the hair loss was due to stress as well, but I decided to make an appointment with my doctor to be safe. I went to the doctor and answered some questions and had some blood work done. Within a few hours of leaving the office they called me with my results. First of all, my iron was low and I was being started on iron pills, no big deal. But then she said "you're thyroid test was abnormal.......very abnormal actually". She had already set me up with an appointment to have a thyroid scan and uptake and told me to come in and have more bloodwork done. I noticed the screen at the end of my thyroid uptake read "thyroid uptake at 25 hours 1.3%". Other than that I was never told any of the results of any of my tests in numbers. When the results from all of the tests and bloodwork came in they called me for an appointment. My doctor told me that I had Hashimoto's thyroiditis. She really didn't explain much about it except that it is an autoimmune disorder and that it would result in the eventual break down of my thyroid. She also said that for some reason my thyroid is now OVERactive instead of underactive. So she wrote me a prescription for Tapazole which is a medication to treat hyperthyroidism. I was also set up with an appointment to see an Endocrinologist, but the appointment was a month away. Anytime my husband and i would ask any questions she would tell us that that is all she could say and to let her know what the Endocrinologist says. I was confused by my thyroid being overactive because I know that Hashimoto's results in underactive. It wasn't until I came home and did some research on the internet that I fould out that this does sometimes happen and why. I also found out that sometimes the thyroid is overactive and sometimes it is underactive as a way of wearing it's self out. So I had a major concern with taking the prescribed medication. If I am on medication to slow my thyroid down, wouldn't it be harmful if I take it when it is already underactive? She said she was prescribing it just so that I would be on something in the meantime before I saw the Endocrinologist. Another concern of mine was with the thyroid uptake, isn't 1.3% low?? I took the medication for a while, but I did end up stopping. Even now after stopping the medication I have symptoms of hypothyroidism. I am gainig a lot of weight in a short amount of time and eventhough I am beginning to regrow hair, I am also losing more every day. Are there any underlying conditions I should be concerned with? My doctor acted as though there could be something else wrong in connection with the Hashimoto's. As a matter of fact she said that she is curious to see what the Endocrinologist finds. Since all of that I have also developed a swollen lymph node in my neck. I noticed it while I was at work one night. My neck became sore and upon feeling it I noticed the swollen node. That has been several days ago and it is still there, but the pain has subsided. Although I found it by feeling my neck, you can also see it. I have had a cold, so that is probably the reason for it, but I can't help but wonder if it may be connected because of my other concerns. Any feedback would be greatly appreciated. I don't go to the Endocrinologist until June 5th so I am a nervous wreck right now. What can I expect at my appointment?

Thanks in advance for any input.

Pam

[Jen!]

Hey there!
Did you find out the actual numbers from your blood test? It's a good idea to ask the receptionist for a copy of the report so you have the nomal reference range for the lab as well. (the reference ranges slightly vary from lab to lab because of different methods and machine callibrated differently even if they use the same method)

You are right that with Hashimoto's you can have overactivity to begin with - this is why the tapazole is being prescribed. I know this seems confusing because you said you are experiencing hypo symptoms such as the fatigue - BUT that is not that unusual either. Many people experience paradoxical symptoms ie. the opposite of what you'd expect for hypo or hyper. BUT also fatigue is closely related with low iron levels - so it is hard to accurately say that your thyroid is causing the fatigue because you have more than one thing going on. Nonetheless your thyroid problems would have to be contributing to your current set of symptoms on some levels.

They wouldn't prescibe Tapazole if your thyroid was already underactive - you must be overactive ie. very low TSH. So it is not harmful for you to take the medication - if the hyperthyroidism condition is not controlled you could run the risk of thyroid storm (RARE), which is a life threatening condition. Please take your medication. For more info on thyroid storm...
http://www.emedicinehealth.com/thyroid_storm/article_em.htm

TSH stands for Thyroid Stimulating Hormone and this chemical is a messenger made by the pituitary gland in your brain. The pituitary gland acts a bit like a sentinel in a feedback loop (the hypothalamus is involved too but it gets pretty complicated, so basically...)- if there is not enough thyroid hormone in the bloodstream (underactive gland-hypothyroidism) the pituitary gland detects this and produces large amounts of TSH to stimulate the thyroid gland into releasing thyroid hormone. Vice Versa; if there is adequate thyroid hormone in the bloodstream then a normal amount of TSH is produced and if there is too much thyroid hormone (overactive gland-hyperthyroidism) there will be very little or no TSH produced at all.

Have you finished breastfeeding? I don't think it is safe to use Tapazole while breastfeeding - please check with your doctor.

Many women find that thyroid problems rear their ugly heads after pregnancy or menopause - all of the other hormone changes can sometimes trigger an underlying condition that may have been laying dormant. Do other people in the family have thyroid disease?

I don't know much about thyroid uptake scans sorry. Hopefully someone else will give you some feedback with their thoughts too.

When you have one autoimmune disorder you have a slightly higher chance of having another autoimmune disorder such as pernicious anaemia (there are many other types). BUT dont' worry - this is not too likely. Ask your endocrinologist about this one, if they suspect something they will send you for more tests.

I would imagine that you will be sent for an ultrasound of your neck - what you think is a swollen lymph node could be a thyroid mass/nodule. Your thought that it is glandular and associated with your cold could also be correct too. - It is not uncommon with any type of thyroid disease that the thyroid gland becomes enlarged. But again it is not a cause for painic - growth usually happens very slowly - I think the statistics are something like growth of 5-10% per year. Surgical intervention is usually only taken when the gland becomes so big that it obstructs other structures in your neck or for cosmetic reasons if the goitre becomes visible, or if malignancy is suspected. 95% of thyroid nodules are benign - I don't want to scare you, all the numbers are on your side!!!

I'm sorry this is all probably information overload for you right now - as if you haven't already got enough on your plate with the twins too!

I reccommend that you learn as much as you can - and try not to stres and think the worst. Knowledge is power - but don't scare yourself.

I has been my experience that nothing with thyroid problems happens very quickly - beware. My experience has taught me how much of a virtue patience is... lol!!

Sorry for having waffled on too much...:o best wishes for health and wellness!!
Cheers!!!;)

[GD Women]

Hey Pam,

You are getting some good info. here. Although it sounds like you have done your home work and that's a plus for you and your Hashi. The more we know the better off we are with our health issues. Here is a little more info. for you - hope I am not repeating.

Sounds like you might be Ha****oxicosis (Hashi), where you primarily have Hashimoto’s thyroiditis, PLUS hyperthyroidism; excess TSH, T3 and T4, causing temporary hyperthyroid states with transient or temporary hyper symptoms. This is not unusual for Hashi patients and it is most likely to be encountered in the early stages of autoimmune hypothyroidism.
Hashimoto's Thyroiditis is actually a systemic disease where the thyroid is major target organ. Once it is present it doesn't seem to go away, although the disease usually waxes and wanes and some patients never have further trouble.
The anti-bodies, however, usually stay positive and are of little help in assessing the activity of the disease, merely the diagnosis.
Anyone who is genetically predisposed to autoimmune thyroid disease can develop Ha****oxicosis (Hashi). So its likewise, the same with Graves' disease, who can become Hashi. I started out Graves', will still am, but now I also show beginning stages of Hashi only RAI treatment for Hyper/Graves' kept me from swing into full blown Hashi or late Hashi.

Low thyroid uptake may mean hyperthyroidism caused by certain conditions such as for one, inflammation of the thyroid gland like thyroiditis.

Tapazole will help control hyper stage or bring up levels until you get into the Endo.

If you have Hashimoto's thyroiditis and a thyroid lump, it must be examined completely to insure that this nodule does not represent a cancer. This examination is usually done by needle biopsy to prove whether or not the thyroid lump is benign or malignant. Although you are unlikely to develop thyroid cancer and Hashimoto's thyroiditis together, you are at increased risk for a special type of thyroid cancer called a lymphoma which can be treated and cured if discovered early. Therefore, no thyroid nodule should be ignored.

As suggested, get copies of your thyroid test with Labs reference range which will help you follow your own progress and perhaps have some input in your treatment with meds.doses and thyroid levels. It also help to list them when you are referring to them in your posting. Also if you are estrogen, whether by natural means or medication, make sure they do the FT-4 and FT-3, with the TSH. Estrogen does not interfere with FTs (frees) however can interfere with the Ts (totals).

If you have any question through your Hashi journey, we are here.