More false hope? We'll see...

[AgB621]

I mentioned this in another post but I wanted to make one that's exclusive to this...

I went to an endocrinologist today and said my thyroid felt slightly enlarged. She said it was probably nothing but she wanted to do an ultrasound anyway. Within a few seconds of the ultrasound, she told me I had a classic case of Hashimoto's Thyroiditis. She said I would definitely need thyroid treatment at some point in my life, and it might make pregnancy a bit more complicated, but we just had to monitor it every year and chances are it wouldn't cause too many problems. She ordered a blood test for my thyroid levels, but said they were probably normal, and as long as they were I wouldn't need treatment.

Well, that's all just fine, but then what about my fatigue? Why insist I probably have no symptoms when I so definitively have this condition which, hello, causes fatigue?! This is the closest I've ever gotten to a real explanation, this is a condition we are certain of, there's no question about this, and yet I'm still being told this might not be the cause of my fatigue??

Some of the symptoms in the material she gave me surprised me. In addition to fatigue and drowsiness, it also mentions forgetfulness, difficulty with learning, and increased sensitivity to many medications. I have terrible issues with memory loss, I have a much harder time than I used to at picking up new concepts, and without constant reinforcement they're just gone anyway, and I have to get most of my medications compounded. Certain medications I can't tolerate at all, there was one I took (can't remember what it's called) that was giving me all the standard side effects at 1/250th of the standard dosage.

Maybe she just didn't want to give me false hope, or maybe she really believes that my fatigue is unrelated to this fatigue-causing condition, but I feel so close to an answer, and this one is so easily treated, it's hard to not to hope that my thyroid levels end up being way low so I can start treatment and maybe feel a little better. I just want to be even a little less tired. It would make such a huge difference in my life.

Does anyone else have this condition? If so, what was your experience with it?

 

[My Butt Hurts]

The way I understand it is that low thyroid levels are easier to treat than high thyroid levels. For a hypothyroid, you can take synthetic medication that mimics the thyroid, and bring your levels up to where they should be.
You fatigue could be caused by that, but it could also be caused by any of your Crohn's symptoms, or any other medications that you are on, or college life, or just life in general.

 

[D Bergy]

I have not researched this at all but you may want to see if an Iodine deficiency could play a role in this.

I know they took it out of bread many years ago and replaced it with Bromine which is not the same. Bromine actually prevents the absorption of Iodine since they are not distinguishable by the thyroid gland.

Just something to rule out.

Dan

 

[AgB621]

Hashimoto's is an auto-immune genetic disorder much like Crohn's. So far, I haven't seen anything relating iodine to Hashimoto's, or using iodine as a treatment, but I will keep an eye out.

 

[soupdragon69]

Hi AgB,

Yep sounds very familiar. I was finally diagnosed after 18mths of decline in my health in my mid 20's (turn 40 next march).

The way mine worked was: exhaustion that became more intense as time went on, muscle aches and pains, trouble concentrating and remembering things on the short term side i.e. if I didnt repeat something 2-3 times within a short space of time of learning it I lost it totally (could even read novels multiple times as couldnt remember what they were about! ;-)).

I cut back and back on my work hours over many months and eventually couldnt cope with even an 11hr week. Became very depressed, my skin dried out and I eventually lost my night vision too (didnt realise til I was on treatment and got it back!).

Thing is my thyroid function tests were NORMAL or BORDERLINE every single time. It wasnt til my GP at the time decided I must be epileptic (due to childhood history at 18mths of seizures) because I was having spells they thought could be "absence attacks" and he sent me to a neurologist that something was finally done. The neurologist thankfully was able to find my childhood records on microfilm at the same hospital and review and told me I had never been epileptic and wasnt then either! By that point my liver function was deteriorating and my GP gave me a choice of going to a liver consultant OR a consultant specialising in Crohnic fatigue syndrome (on the neurologist diagnosis of ME). I went to the liver consultant and HE told me it was my THYROID even though my tests were normal!!!!

Put me on thyroxine and 6wks later my thyroid function tests showed my thyroid was hardly working at all. They realised I needed very high doses of thyroxine and now with my crohns etc they have told me I have huge autoimmune issues.

Hashimotos Thyroiditis is autoimmune AgB. Crohns is autoimmune.... I have been diagnosed with a skin disease that is autoimmune and also in recent weeks diagnosed with rheumatoid arthritis which is autoimmune too...

Three of the above at least can cause exhaustion....

So exhaustion on the thyroid front is a realistic thing to look at!! If you think it is contributing to your exhaustion then keep a close eye on it and make sure you are happy with the treatment you are receiving.

Something my gastro consultant mentioned to me is that Crohns patients tend to have "normal" blood results and thats why they can be really clinically sick but the tests are fine. They dont know why it happens but it was so much easier for him to understand why I had such a tough time getting my thyroid issues diagnosed and I now make a point of stating its an ongoing issue whenever I go to a new clinic like with Rheumatology recently. It has certainly helped me to get effective treatment sooner.

Something I will say is I have found I have needed higher doses of meds over the years than normal and my gastro cons and GP both feel it is due to poor absorption with my Crohns having gone undiagnosed. Since it was diagnosed and treated my thyroxine has been able to be decreased a little too. There are some meds however that I was very sensitive to and had bad side effects even when not within therapeutic range for it. So you are not alone there either. Food for thought!

Will stop waffling at you now AgB but hope my thoughts help you bit and that you get some results or at least feel you can question things more rather than put up with something you are unhappy about.

Thinking of you

 

[AgB621]

Wow, your issues sound so much like mine, I too can read novels two or three times and feel like they're new every time, and I actually have noticed I'm less inclined to drive at night. I'm convinced my mother has this too, even though she has almost no symptoms (though if poor night vision is a symptom she definitely has that!) She has dry skin and hair, but she's convinced it's due to menopause and normal aging, but I got this from somewhere. I don't know why I have such a strong feeling she has Hashimoto's too, but it's there and I feel I should listen to it. I told her to see an endocrinologist.

Are you saying that my thyroid levels could test normal but they could still technically be low for me? If that's really the case, then would trying treatment still be a good idea?

My endocrin ologist said that the Hashimoto's made the Crohn's more likely, but I saw a GI for a second opinion (at the advice of my GI) and despite the Hashimoto's she still thought Crohn's was "unlikely".

Oh well, we'll see what a pill cam says.

 

[soupdragon69]

I found when driving at night I used to feel as though my eyes werent open enough and kept checking they were. At one point I was driving with them wide open and trying hard not to blink. Sounds stupid but it was a very odd feeling and its the only way I can describe it.

I noticed on another thread you reckon you have had the thyroid problem for 11yrs? By the time I was diagnosed in my mid 20's my cons asked me if I had any major changes in my life at any point that I felt I couldnt explain but they just werent "right". I told him when I was in my last 2yrs at high school I was in the top 3 of all my classes be it languages, math, history, geography, english, computer studies etc. Then over a period of about 6mths everything nosedived and I really seemed to struggle to get my head round math and other things too and I dropped into lower ability classes as a result yet no one ever questioned it. I had to work all the harder to get any improvement. The cons that diagnosed my underactive thyroid reckoned I had hit the decline when I hit puberty as when I worked it out that was when all my exam results changed at school. He told me he thought my thyroid function peaked and troughed til eventually it gave up and the reason my tests were always borderline or normal or sometimes just below normal but not enough to warrant meds is because my body was constantly trying to compensate.

Another thing I learned is that underactive thyroid can inferfere with your monthly cycle and other hormonal aspects in your body too. So have a think and see if you have any other issues too ok?

I certainly found my mental ability improved gradually as my thyroid function was improved with thyroxine daily. It took them almost a year to level me out so be prepared for time to change if you do go down this route.

As you can see from my experience it could be possible your body is compensating and your levels may "read" ok for the parameters set but actually you may not have enough if you are displaying physical symptoms. Keep in mind though that many things have similar symptoms and it takes time to work down to the real cause. I also had 2 GP's at the time tell me I was a hypochondriac or I was depressed. I ended up yelling at my own GP who worked part time (this was in Ireland not where I live now) and saying I was depressed because there was something physically wrong with me NOT showing physical symptoms because I was depressed and did she understand that because the 2 clowns up the corridor thought I was making a mountain out of a molehill!! LOL

You wont be able to try treatment unless it is prescribed and very closely monitored by a medical practitioner AgB so perhaps it is something worth discussing in more detail with them?

If you have one autoimmune disease it apparently leans you more towards another. I too was tested for Coeliac and being of irish decent both my GI and my GP thought it was that and were shocked I had Crohns because I dont loose weight and am in fact overweight. But that is due to years of steroid usage for asthma and also my underactive thyroid making it harder to lose the weight.

It is possible it runs in the family yes... my mother was underactive for years and on highish doses (125 micrograms daily) and my father was diagnosed very late in life and is on a tiny dose in comparison (25micrograms daily). Food for thought eh? I was on 200mcg for over 10yrs. It was decreased to 175mcg over a year ago after the crohns diagnosis and I started absorbing better.

Feel free to PM me if you want to talk more ok? Hope you get some results soon and some treatment on the aspects you feel you need. Hang in there honey things WILL improve but I totally understand why you feel so frustrated on both fronts.

Thinking of you