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exhausted & on my knees here - any ideas what's wrong so I can go back to dr armed.

(37 Posts)
ErnesttheBavarian Wed 24-Feb-16 18:02:36

Have hashimotos thyroid disease (underactive)

Diagnosed 3 years ago. basically I feel shit almost all of the time. I wake up feeling knackered and drained, have big bags and dark circles under my eyes, my skin is extremely dry, my eyes are extremely dry (have to put drops in several times a day inc 1st thing before I open my eyes otherwise it feels like I'm ripping the cornea off). I am also constantly constipated and did I mention exhausted? I started drinking loads of water (3L+) but made no difference to anything.

But my blood test results come back "good". I have now seen 3 different doctors (2 gps and an endocrinologist) and they all say how good my results are. I say but I feel like death. And they say but your results are good.

I nearly cried when it happened today for the 3rd time. So, when I go back to the doctor for the results, and they say they are good, I would really like to be able to at least suggest something maybe they didn't think of.

Or do I just accept this is as good as it gets, or does anyone have any magic suggestions for beating feeling totally exhausted and dry and scaly too?

ps also have coeliac disease if that counts for anything.

HeyMacWey Thu 25-Feb-16 11:19:42

Get your actual levels so you can see whether you are in the top of the range for vitamins.
Have they checked your b12 and vit d?

ErnesttheBavarian Thu 25-Feb-16 11:27:14

Don't know re vitamins will ask. But I do take (not regularly ) vital d as son is deficient. She said my thyroid levels not just in normal range but actually good.

HeyMacWey Thu 25-Feb-16 11:28:30

Did they test for anything else other than your thyroid bloods?

Danglyweed Thu 25-Feb-16 11:29:45

Check your folic acid levels?

RubySparks Fri 26-Feb-16 19:51:05

Sending sympathy! I have coeliac and Hashimotos and also don't feel great. The dose of levothyroxine seems to make a big difference to me. I felt dreadful on 50mg and fine on 100mg for a while until I got anxious and panicky so dropped to 75mg which seems about right.

I still get tired easily so work part time and don't try to do too much on any one day. I also have a near constant pins and needles sensation in feet and legs that I cannot find a cause for so just put up with that!

I also was low in Vit D and B12 so getting those up helped.

VimFuego101 Fri 26-Feb-16 19:56:47

What are they actually testing? TSH only, or a full thyroid check including FT3/4?

I second the advice to get your Vit D and B12 checked too - those are interlinked with your thyroid and if they're low will have a knock on effect.

ErnesttheBavarian Sat 27-Feb-16 15:53:52

God I'm not sure. I get the print out but it's just a massive long list and I don't understand most of it.. I'll ask about FT3 & 4 & B12.

If she says they haven't tested for FT3 & 4 or B12 do I request that they do? What if she says all the results are great and everything is ok. Do I then cry, put up with feeling shit forever, ask for something else?

The tiredness is taking over my life. I was in bed at 8 last night. I had a row with my dh cos he took me out to dinner on our anniversary - and booked the table for 8.30. I just wanted to cry. The thought of going out at that time, when I would prefer to be going to bed,

Ruby, sorry you're also going through this too. The pins and needles sounds horrid.

I am not good at being assertive with doctors and I don't know even what I should be asking for.

HeyMacWey Sat 27-Feb-16 18:47:42

I'll have a look back through my bloods and see what they refer to as per the b12 testing then this might help you decipher your results Ernest
Sorry you are feeling so shit - I have me/cfs so recognise that bone crushing exhaustion.

ruby the pins and needles can be from b12 deficiency so maybe look at sublingual tablets if you were just taking regular ones.

RubySparks Sun 28-Feb-16 09:17:01

Thanks, B12 I got injections for so came up quickly and that helped with brain fog feelings. I found one GP who helped as she said she liked to see TSH closer to 1.0 so was helpful in getting levothyroxine dose upped, other GPs were happy to say thyroid results were normal or fine even though I was clearly having symptoms!

Clarella Sun 28-Feb-16 17:10:32

As this BMA book explains, nearer Tsh 1 is best or even a little below.

It would be interesting to see what all your previous results were. And if b12, vit d and ferritin have been done. You could ask for t3; it does go up and down during the course of the day though so not always hugely accurate. I think they prove an inability to convert by testing t3 at a certain time, raising t4 and testing again a few weeks later at same time. If t3 doesn't rise, there's a conversion issue. (Think it's a genetic thing too).

ErnesttheBavarian Sun 28-Feb-16 19:41:58

See you see, you've blinded me with science. That's my problem I just can't get my head around it. I'm not totally thick, I mean I have a degree but clearly science isn't in my skill set. One nice doctor did draw me a picture once and explain but he might as well gave been talking in Hebrew or urdo or Japanese. Take your pick.

And thank you for raking the time. i just don't get it. Should I put up a pic of my results and soon can tell me if tgey can make out some? Added complication - it's in German, but loads of these terms are v similar in both or latin ?

RubySparks Mon 29-Feb-16 07:15:59

Yes post results! Forgot about the confusing part... You are looking for a Lowish (close to 1.0) TSH result as this means the T4 will be in range. If you are not making enough T4 your body will increase TSH to compensate. TSH is thyroid stimulating hormone so it affects output of thyroid gland, and results will show a reference range for the lab that tested. GP will want results to be in range, you want them to be right for you! i.e. you feel better and symptoms decrease.

Clarella Mon 29-Feb-16 10:23:07

Ernest I think it took 10 years for me to fully understand it, then forgot it when all was well, had to relearn 5 years later. I'm 19 years into it and just about get most of it (except where the hypothalamus etc are involved!!!!)

ErnesttheBavarian Wed 16-Mar-16 07:39:56

Ok I lost my resultsblush but found them again this morning ( in the the bag). I'm going back to the doctor today. How do they look?

RubySparks Fri 18-Mar-16 04:46:16

How did you get on with doctor? I am hypothyroid but I think your results maybe showing hyperthyroidism?

ErnesttheBavarian Fri 18-Mar-16 17:22:15

You think hyper? Why? I am totally number blind on this. Just can't get my thick head around it

Wolpertinger Fri 18-Mar-16 17:34:19

Your thyroid results are OK so you are left with either you are just tired or it is something else. As you have autoimmune thyroid disease you should have Addisons ruled out as well as B12 and vitD levels checked.

Clarella Fri 18-Mar-16 18:11:41

What s/he said.

Clarella Fri 18-Mar-16 18:14:19

Sorry bit short!

I'm surprised an endo hasn't tested for other things already?

ErnesttheBavarian Fri 18-Mar-16 20:33:44

I take vit d every day so I doubt there's a problem there. I had a quick look at Addison's symptoms. I do consistently have low blood pressure, but I think that's the only thing, (apart from the exhaustion of course) that stands out. Definitely not unexplained weight loss hmm

Thanks for looking at it. I just changed (in fact retuned to an old) gp. We moved house about 5 years ago so I changed gp then. He was ok but some problems, so I just reverted back to my old gp. I didn't have thyroid problems or coeliac disease when I was with this original gp, it was all dx 3 years ago. In fact I think I only went 1 or 2 times as I used to be healthy with no health problems so don't really know the gp that well.

In the mean time I have seen an endocrinologist and this new gp have both done blood tests and both said they were fine but no explanation for the exhaustion or suggestions for how I can improve it.

RubySparks Fri 18-Mar-16 21:57:23

I thought hyper as TSH so low and t4 slightly high!

MissSmiley Fri 18-Mar-16 22:05:33

I have coeliac disease and when I was diagnosed my ferritin was very low. I suffered with incredible tiredness until I had an iron infusion. My other iron was always normal. I even had a haematologist tell me I should have no symptoms from low ferritin.
Maybe double check that yours is ok.
Good luck.

RubySparks Fri 18-Mar-16 22:05:43

What dose of levothyroxine are you on?

Here is the thyroid uk interpretation chart too!

MissSmiley Fri 18-Mar-16 22:09:23

Oh I also had sarcoidosis (it's the same gene thingy) before I was diagnosed with celiac and one of the main symptoms of that was tiredness but that was so bad I couldn't even get out of bed. Hope it's not that.

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