Finally diagnosed hypo- The questions begin: Differing TSH in 3 days...

[mft76]

Hi all- I am new here- 42 y/o female. A week ago I could not even compose an email. Now, I am a week into med. and diagnosis (only on .025 Levothyroxine) and I have a speck of energy (small win!). So I have a question. Well I have a lot of them, but I'll start here (p.s.- I have read a ton about hypo- and have had a feeling I was for almost a year when I started reporting fatigue). Another clue- I went totally keto Jan 3- my husband, who eats far more than me, has lost 35 lbs- my weight never budged more than 2 lbs in either direction- I do all the cooking- until I go too tired and had no appetite. I could go on and on as you know the elusive-ness of this is so nuanced (brain fog, agoraphobia, misdiagnosis of depression, hair loss, mystery aches, on and on...) But here goes 1st question: I FINALLY went to ER after a week of shortness of breath- They did every test under the sun- all clear, then TSH showed up as 7.23. I think even 2.5 is high for me, as I felt ill with that # a year ago. Here's the wierd part- 3 days later my TSH was 3.75 (checked by GP). I know stress can elevate cortisol and potentially TSH- but that much in 3 days? Please let me know if you have thoughts and if you have had this sort of experience. T3 and 4 are 'normal' Thanks!

[Marz]

Have you had anti-bodies checked to rule out Hashimotos ? Anti-TPO & Tg ? This could be a reason for the TSH to vary. Were tests done at the same time ?

[mft76 in reply to Marz]

Hi Marz- Thank you so much for the reply. They did not test TPO/ anti TPO or Tg at the ER- only TSH- (they seemed busy ruling out a blood clot). They did run other panels, and the only numbers that were slightly high (I don't have them in front of me) seem to be linked to hypo.

3 days later, at GP, they tested TSH, T3 and 4. They tested TPO and it was reported as 10. I'll be sure to have antiboties tested as well as Anti- TPO and Tg tested in my 'follow up' at the end of the month- or sooner.

Thanks again! I'll keep you posted. Take care

[Hidden]

Hi Mft. On this forum the tsh is a notriously unreliable test but trying to convince the medical profession is like argueing with a stone.There has been a lot of reasurch to show that it should not be used as a diagnostic tool, if you are interested follow dioganes whom I belive helped develop the tsh test in the first place. It varies as to the time of day it is taken in particaular, so when you have your bloods taken, first thing in the morning is best before food and do not take your levo for 24 hours before hand.It sounds like you were very poorly. Dont ever stop taking your hormones now you have started as this can trigger a mixodema crisis and it sounds like you were close to one at A n E.

You describe your T4 and T3 as normal and they might be in the same way as a size seven shoe is normal but that does not mean it fits you.

It is great to have you on the forum, keep us all posted. You have a way to go with this and there will be ups and downs.It can take a long time to get thyroid treatment right but it is great that you are feeling a bit better. You are legally intitled to your blood results. It would be good to get a copy and keep a record of them and any problems post the results on the forum. There are lots of very skilled people here who can help.

[mft76 in reply to Hidden]

Hi Mandyjane- Thanks for reading and replying to my post:). I am learning how unreliable TSH is- quickly. Thanks for the warm welcome- i will indeed keep you posted on my journey. I'm glad I feel a bit better too- I hope i never have an ER break the news a GP should have year(s) ago)

[shaws Administrator]

The TSH changes all day long so that's why the advice is to get the earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose and test. Levo should be taken with one full glass of water and wait an hour before eating. Many take theirs when they get up but others prefer a bedtime dose. In that case you'd have to have last eaten a meal about 3 hours previously (food interferes with the uptake of the hormones). and miss this dose if having a blood test next a.m. and take afterwards and night dose as usual.

If GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these as everything has to be optimal.

Your dose of 25mcg is extremely small - usually it is 50mcg with 25mcg increaes every six weeks until TSH is 1 or lower. As Marz has suggested, ask for antibodies to be checked next time. If antiboies are present it means you have an Autoimmune Thyroid Disease as it is the antiboies that attack the gland until you're hypo but treatment is the same.

[mft76 in reply to shaws]

Thanks so much- doing meds all the right ways- interesting though, my high TSH was at 11pm and my low was fasting at 8:30 am. The thyroid is so mysterious. I should know by my follow- up if I need a dose increase(I suspect so). For sure will request antibody test- not thyroid- but autoimmune in all forms is all over my family. Take Care!

[greygoose]

TSH is highest early morning, and drops throughout the day. It also drops after eating. But, it can also vary from day to day. And it's all this variation that makes it such an unreliable indicator of thyroid status. The most important number is the FT3, even though that also fluctuates, but to a lesser degree. So, if your FT3 hadn't drastically changed, then there's nothing to worry about.

[mft76 in reply to greygoose]

Thanks for the encouraging words- I'll keep you all posted.

[greygoose in reply to mft76]

You're welcome.

[mft76]

Thanks again for your replies and your wisdom. Adding in some new info- went to Dr. early 3 weeks ago (before more blood tests were in order) as I just knew .025 levo was not enough- she raised it 50% to 37.5 for now (I suspect this will go up after blood tests near the end of next month). She also diagnosed PCOS and stared me on Metformin 500mg 2x a day. I brought my husband as a rock and witness- highly recommend bringing a trusted friend/partner/relative. My energy is up a bit and my mood is for sure better... (FYI like so many other women, I was wrongly given wellbutrin as well as a wacky sleep test reporting sleep apnea- but w/ no signs of it- I think the sleep Dr was a fraud) I am learning every day to listen to MY BODY and so glad hormones are now being addressed and I'm getting 'there'. I will post after blood tests/next Dr visit as I appreciate when folks don't 'fall off' when they feel better- and I sure plan on feeling better!