dodgey tsh

[ozzy1000]

i'm a bit baffeled by my hashimotos...... i was diagnosed in december after a long period of feeling pretty rough.... my tsh was 39.6, t4 was down below normal range but not too bad... after about 5 weeks of 25mcgs of levo'  tsh was about 19 and t4 was up slightly, another 5-6 weeks on 50mcg and tsh was about 13 and t4 was up a bit more (can't remeber)...... looking good! 75mcgs maybe 100 should do the trick you might think?... started taking 75mcgs and i began to feel loads better, so much so i didn't even bother going back for bloods, then about 3-4weeks ago i started to feel really hypo again, I haven't changed anything about how i take my tablets, i have never missed a dose.... so i went for bloods on monday, got the results yesterday... TSH is 32 again!! T4 is in normal range (i can't remember; they told me on the phone, I have an appointment today)...

whats going on??? my doctor suggested erratic TSH is often due to non/inconsistent conmpliance with medication... which, frankly, i find very patronising.... i take the stuff religously as i don't want to feel like this.....

thanks, owain :)

[AR-10]

LOL!!!

Sorry! I get confused.
I am laughing a lot right now.
Good therapy for me. :-)

Glad you found a good doctor. I live in a small town, so I can visualize the stir the "nice young doctor" created when he came to town. LOL!! I love this forum at times like this. Hahaha!!!

Hope he gets you feeling better soon.

[kitty9309]

I thought you were a guy!

You certainly painted a nice picture with your story. Sounds like a very small town, indeed. At least the ladies are happy!

[ozzy1000]

LOL!! i'm a straight 31 year old man :) swooning indeed :) i added the description of our scotts man as it makes me chuckle and i thought yous guys might appreciate some colour to a story. i live in a tiny village in england and Dr Mcarthey is new to the village practise... i've walk past old ladys on the street saying 'have you met the new Dr Mcarthy, what a lovely man, oh and so sensitive, hansome too' etc.... everyone loves him :) he's probably the most excitement the 'ladys of cheriton' have had for year :)

[kitty9309]

I wish I could see your doctor! And hear that accent!

I am amazed the he agreed that the Hashi's can wax and wane and that the antibodies are fired up!  Most doctors would say" I don't know why this increase hasn't helped."

I have had the issue of doing well after a couple of months on a dose only to find that I go a bit downhill again until the next increase. Maybe that is a similar phenomenon to what you are experiencing. I have no clue, but would love to have an answer.

Can you ask your Scotsman doctor for me? LOL ;)

I am glad you are getting good advice.

[AR-10]

Good to know you got some answers and a med increase. I hope that does the trick for you.

I agree with kitty about the generics, but you can save that argument for when your TSH is going up or two 2 points rather than twenty or thirty.

Hashimoto's does tend to cause yout thyroid hormones to wax and wain, so getting minimal testing every three months is a good idea if the doctor will allow it. That way you can change med doses as needed without your levels getting too far out of balance.

Best of luck to you.
Now quit swooning over the doctor!  :-)

[ozzy1000]

firstly i didn't miss an appointment.....there was no appointment... i was told to have bloods every couple of months or so. i had them every 5 weeks for the first three lots of bloods purely because i was intregued to see the effect. with each of these my dr suggested if i could tollerate more levo then i should take it. ( i had trouble tollerating levo at first and had to come down to 12.5mcgs for the first 2weeks then 25 for about 5wks etc..)

;
I went to my appointment today and basically my dr agrees with kitty. he said all thats happening is that when i first got diagnosed my Hashi's must have been just starting to kick off properly, i had a couple of months where the levo was compensating better, but now the antibodies are really laying into my thyroid the 75mcg isn't touching it... so we just need to up the conpensation to match... basically i'm just iller than i was in december... my dr said nothing about my body anitcipating increases or me doing anything wrong, just that hashi's waxes and wains, and at the moment its getting worse...
I also had suspisions about the generic brand Levo... dr seemed dismissive of this... he was very helpful though.. there's 2 dr's at the surgeory that are completely useless(hence my frustrated tone in the first email) and two that are totally flippin' fabulous, this was one of the later :) (six foot plus young scottsman that got the village ladys all of a flutter)

cheers for the responses, i now have 125mcg inside me today.. we'll see how that goes :) O xx

[AR-10]

You shouldn't have to start over on your meds, but you need to keep getting your blood checked every six weeks until you are on a dosage high enough to compensate for what your thyroid is not producing.

The doctor's mention of non-compliance is understandably upsetting, but you would be amazed at how many people quit taking their meds or start playing with their dosage. Cutting pills in half or skipping days.

And you did skip that appointment...

So the doctor was half right.

Part of the problem is that you haven't found the correct dosage to maintain your hormone levels yet. Kitty pretty much summed it up.

The other thing is you may be starting into a period of thyroiditis, and your Thyroid function has declined even further temporarily. Maybe. Your TSH can go up and down when your gland swells and then the swelling goes down.

Combine that with a med dosage that can't keep up, and your TSH could vary by quite a bit.  

[kitty9309]

Are you on generic or brand name levo?

The generics may not be consistant in actual stated dose from refill to refill if the manufacturer of the generic product changes.

You more than likely just need an increase and the Hashi's is catching up quicker than the meds can handle.

How much time elapsed between when you started 75 mcg and felt well untill you went back for the last blood work?

[stella5349]

What's going on is your body was taking the slow increases and converting the T4 into what you needed.

When you didn't follow through (as many do when they feel better) your thyroid was waiting for the scheduled increase and when you didn't get it - it dumped on you!

I hate to be kurt - but don't blame the doctor on this one - it seems they were doing everything appropriately - Labs regularly - small increases are good and very appropriate.

You were feeling better so you missed you lab and scheduled increase your body was used to . Hashi can change things daily - but you seemed to be responding very well before you missed your lab.

You could be starting over again b/c of the decision you made.

I hope things correct themselves for you quickly