My Hypothyroidism, do you have it and can tell me what to do

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
581
Reaction score
0
Points
0
Well, as mentioned in a topic in the kitchen, I've been having issues with my throid. Lately I've been having symptoms such as hoarseness, tiredness, changes in my period, puffy feet & according to someone I work with, says I have a puffy face. My thyroid has been bouncing around and up and down since February 28, 2011 when I had it tested for the first time to yesterday. Here's the lowdown.

February 28, 2011 (First time ever in my life my throid was tested)

TSH: 3.06

FT4: 1.16

December 12th 2011, 17 days before second kidney failure and high potassium 9.4 (Second thyroid test, 11 months apart)

TSH: 3.25

FT4: 1.30

July 11, 2011 Five Months later and one week after Grand Mal Seizure

TSH: (HIGH) 4.35

August 14, 2012

TSH: 3.94

FT4: 1.26

Everything I read says the ranges differ in different labs and my labs ranges are 0.27 to 4.20, however I've been reading that those can be old numbers and in 2003, they revised it to be 0.3 to 3.0 as being normal and today's test says 3.94 so according to the latter, it's way above normal. I read that doctors tend to go by the old numbers 0.4 to 6. In the hospital once it was over 6. It is bouncing around a lot but not going down, steadily going up. Anyone with experience of Hypothyroidism?
 
I think you should review the list of hypothyroid problems and see how many symptoms you have on the list... then take that info to the doctors appt and ask where he/she stands on the ranges. I was borderline "normal" and was misdiagnosed for over 7 years. When I realized I had over three quarters of the hypothyroid symptoms I convinced my doc to give me meds. I was 100% better within a week. He still states he doesn't think I have it. Lol. But I'm still on meds and if I stop them I go back to miserable. I've since met several docs who state they treat borderline patients with meds with great results.
 
Thanks Julie, I've actually been experiencing some symptoms, tiredness, puffy feet, hoarseness, poor memory, a little weight gain. Bad part is, they have certain ranges and although they said at the hospital I have a mild hypothyroidism, they did say the thyroid was enlarged and I had a goiter. The ranges my lab has, my levels are considered within the norm but in some charts, my level of 3.94 is considered abnormal and the charts say up to 3.0 is normal but have also seen that some doctors tend to use old numbers to go by.

Also, that even if you are just borderline, you should be treated and more times than not, once you do, you go back to normal. I get tired even after a nap, sleepy, that and the hoarseness is the most prominent
 
Hi-- I am similar to you I have thyroid goiter and numerous nodules. My thyroid normally remains within normal range as far as blood work goes, but on occasion I have been hypo then hyper within a short period of time.. Overall, they say I am euthyroid... normal thyroid function. You may want to have a thyroid ultrasound.
 
Thanks Mary. One week after my Grand Mal, my thryoid was 4.35 and it's never been below 3.06. And now it's going up again. I think my primary doctor plans to test it again in December. I'm scheduled for bloodwork, then follow up with him January 4th which is weird since it'll be two years to the day of my Grand Mal seizure and I see my Neurologist one month and a day before the Grand Mal seizure which will be two years January 4th
 
The hoarseness seems to be getting worse, instead of once in while, it's daily now and I'm hoarse when I wake up, then it goes away and when I talk throughout the day, it gets bad again. I'm going to tell my doctor I need to know what is going on and to test me again.

The levels have gone up 69 points on my tests since the time before this one
 
Hmm. I still think I would ask for imaging of the thyroid to augment the blood work, either ultrasound of the thyroid or possibly nuclear medicine thyroid uptake and scan.

MaryK
 
He may order that once he knows what Symptoms I'm having. My levels are going up and the they go down again, not by much though, then they go up again
 
I have hypothyroidism. since 2001.

TSH can change as much as 3 points over the course of the day. It isnt a thyroid hormone, it is a pitiuitary one. It has an inverse proportional relationship to the thyroid - the higher it gets, the more it is telling the thyroid to work, the less work the thyroid is doing, hence a higher TSH shows a LOW thyroid.

It has a pulsatile diurnal pattern, maximum level at about 2.30 in the morning, LOWest level at 2.30 in the afternoon.

Measuring it at 8am is the closest you'll get to a mean average result.

For some people (myself included), it doesnt work. My TSH was 1.61 when i was the most ill. It never got above that level (that was measured, anyway).

My TSH has been < 0.01 for the better part of a decade. I suspect my thyroid has atrophied away anyway.

The blood test results you need to have and be paying attention to are FREE T3 and FREE T4, which are direct measurements of the free fractions of thyroid hormone in your bloodstream, available to your muscles and tissues. The rest is irrelevant.
 
My levels have gone up more than down. And although I'm now having hoarseness daily, the symptoms of tiredness comes and goes.
 
To be honest, the difference between a 2.8 reading and a 3.1 reading, for example, is negligible since it changes threefold over the course of 12 hours.

If at 2.40am it is 5, at 8am it can be 3.5 (which is "normal") and at 2.40pm be 2 (which is even more "normal"). At 2.40am the result is abnormal because the thyroid is really struggling, but the other two results are within the normal limits of the range.

None of those readings mean the thyroid isnt struggling. The NHANES II study proved that the average TSH in a healthy population is 1.5 - anything higher than that means your thyroid is struggling and needs some help.

If your doctor wont accept this, try an endocrinologist. If youre in the UK, go private forthwith.
 
It's never been below a 3.06 since the first time he tested it. My doctor is a very good doctor, he just doesn't want to jump the gun and treat it if it's not necessary but I think with this latest thing, he'll know it's necessary.
 
A list of your symptoms that you've written down will help.

I was reading earlier that several epilepsy meds can cause hypothyroidism. Maybe that's how mine ended up going bust? I was diagnosed with hypothyroidism in 2001 - i was diagnosed with E in 97 ... turns out my brother and my mom have hashimoto's, but i dont.
 
Last edited:
Doctors office called while I was asleep, leaving a message. Saying everything looked good, normal, etc and the only thing I might need is more water pill. In other words, he's saying my thyroid is normal, which I think is a crock.

I wake up every morning barely able to talk, been hoarse off and on everyday & I'm tired a lot and my period has changed. I know something is wrong with my thyroid but doctors keep saying it's in the normal range.
 
They do that. Its annoying. The only solution is to change docs. Thyroid.about.com keeps a "top docs" list by state....
 
The doctor I saw isn't my primary doctor, he's the urgent care doctor cause I couldn't get in to see my primary doctor. His schedule is very full and he's going on vacation soon for 3 weeks. I know my thyroid isn't normal. I wake up every morning barely able to talk, my voice is hoarse almost all day long, I'm tired, I gained weight and when I do lose weight, it's extremely hard to lose and there are changes in my period and somtimes when I swallow it feels like something is there, where the thyroid is.
 
I think an appointment with an Endocrinologist will help you. They are the best when it comes to sorting out complicated thyroid problems.
 
Actually, I was rereading my hospital report from when I was in the hospital for my seizure and I thought the TSH 4.35 was the level at the time, but that was a different time. Actually the report says my TSH level at that time was TSH 5.57 and T4 1.49. Says and I QUOTE "Her thyroid function is abnormal, TSH 5.57, free T4 1.49, this displays a mild hypothyroid state. Her thyroid feels diffuse, suspect possibly a goiter"
 
Then really your next step would be an appointment with the specialist, the endocrinologist for further testing.
 
Back
Top Bottom