Still feeling hypothroid

[Busylizzie]

I was diagnosed as being hypothyroid 2 yrs ago with a TSH of 15 after feeling tired all the time and weight gain.  I had an episode of being hyperthyroid 18 yrs ago a year after the birth of my son which was treated with carbimazole?  I've been healthy all my life until 2 yrs ago when all this started.  I was eventually started on generic thyroxine 18months ago of 50mcg which helped but I still felt tired even though he said my TSH was normal.  Last November my GP increased it to 100mcg after a lot of pressure from me as I still felt tired, was having heavy periods and was anaemic so he also gave me a 2 week course of iron.  He also sent me to see a consultant who did tests for adrenals and Lymes disease and sleep apnoea, all of which came back negative.  In January the consultant reduced my thyroxine to 75mcgs as my TSH was slightly suppressed at 0.1 even though I felt a lot better.  I've gradually felt worse and worse as the year has progressed, I've had my blood tested again and have a TSH of 3.5 and free T4 of 12 but he won't increase it.  Aug had a yeast infection which gave me a UTI, then was anaemic due to heavy periods and am now on iron 200mgs daily. My GP started me on progesterone to regulate my periods 2 months ago (I am just 50 now) he says my oestrogen levels are still high and therefore not in menopause.  2 weeks ago I had a ?gout attack in R big toe and its jumping from joint to joint in hands and feet, doc has taken bloods to identify if it's arthritis ,I feel cold, tired and am just existing, my last TSH was 2.8 what can I do as am the end of my tether.

[KarenZ]

Hello BusyLizzie:
I can relate to how you feel. Your last post mentions that you feel like you have the flu all the time. When I read that I wondered if you had been tested for active Epstein-Barr Virus. In addition to Hashimoto's Thyroiditis I have this dibilitating virus. It's like a double whammy for zaping you of energy. To say I am fatigued is an understatement. At present my TSH is within normal range, but with this virus I feel like I am dragging all the time...like I have the flu. I posted to you only because you may want to request testing for the virus. On a side note...have you ever had mononucleosis? I did, so when I was tested one of the results came back saying that I had had the virus prior, in addition to the virus being active now. It seems to me that Epstein-Barr is one of those illnesses that many medical docs don't really understand. IF you have the virus AND it is active you may want to consider treating with a naturopathic physician. I know that most insurance companies don't cover alternative medicine, but they have a better handle on how to treat it and make you feel better.
Wishing you good luck with getting better for 2006.

[Ussie]

My TSH is very very low and I am not hyper at all.

[Mark Lupo, M.D.]

Sounds like you did better with a lower TSH - would try a dose of 88mcgs with target of around 0.5 - there is great debate in this matter, but this answer should be helpful to your symptoms and acceptable to your doc. Below is more info -

The treatment of hypothyroidism means striking a careful balance between a patient's symptoms and the lab (usually TSH) value.  TSH is the most relied upon lab by thyroid experts world-wide to determine appropriate levels of thyroid hormone replacement.  It does not directly reflect tissue activity of thyroid hormone but there is no test available that does that and TSH is the best approximate we have now.

That being said, the target TSH is 0.5-2.0 for a patient on replacement.  In general, patients who are older or have heart disease do better with a TSH that is not <0.5 as shown in several studies that these patients have increased risk of premature death.

Younger patients who are otherwise health may feel better with a TSH that is slightly lower than 0.5.  There are definite risks associated with TSH <0.1 even in patients who "feel fine" -- studies show that a TSH this low over time can significantly alter heart function.

[Busylizzie]

Thanks so much for all your answers and support.  I will try again with my GP to increase my thyroxine slightly.  I am just so tired of being tired and sleeping half my life!  If I could get rid of the fatigue I could deal with all the other issues!  I used to regularly exercise, now it takes all my energy to load the dishwasher!  I don't even get hungry anymore yet am still slowly gaining weight, so depressing!!  Activities that I used to enjoy are becoming really difficult to keep up with and so I end up cancelling.  I just feel like I have the "flu" all the time.  I slept over 12 hrs last night, it's as if I am in a fog!
           Thank you again!

[ancientmariner]

Lizzie,

It has been my experience that the TSH test is not always reliable, and can be affected by taking oral thyroid replacement. I have also found that thyroxine, a synthetic T4 medication, does not work as well as natural desiccated thyroid. This is because your own thyroid, when working properly, gives your body T4 plus T3, and other lesser known hormones. When you take synthetic hormones, you're missing hormones that your body needs. I take Armour Thyroid, 3-1/2 grains a day (210 mg), after 3 miserable years on Synthroid. My TSH is undetectable, but I can tell you that I am NOT hyper, and not taking too much thyroid. I feel better than I have since I started taking thyroid replacement.