I've been having some really rough times over the last few months (maybe longer).

Since I gave birth 2.5 years ago, I got progressively worse. Hashimotos tests were negative, had them done about 1.5 years ago. I've been hypo for 20 years, I was on Levo for 16 years then T3 only for 3.5 years (Levo wasn't working and my T3 levels were low, and had lots of hypo symptoms). I felt great on T3 only and got pregnant on T3 only. They convinced me to add 50mcg Levo when I was pregnant and I was unwell all the way through the pregnancy. My baby was born full term, health, health weight (6 lbs 4oz). I stopped taking the Levo when I gave birth and went back to T3 only. About 4-5 months post partum I started to get body aches and pains, and back ache, numbness in left leg and foot. I though I might have a slipped disc but I just had a lumbar MRI and it came back negative. I'm at my wit's end. I swapped some of my T3 to NDT 6 months ago,hoping that the body aches and muzzy head will go, but it didn't. Currently I'm on 25mcg T3 (circadian dose at 3am) and 2 grains ofNDT (taking 1.5 grains at 11am and 1 grain at 5pm).

I haven't done a look test since I have been on NDT. What do I need tested apart from the obvious 3?

I'm in constant pain and muddle up my words, I want to say one words and another one comes out, and say words in the wrong order in the sentence. I feel like my head is a big myzzy sausage. I cannot tolerate hot or cold weather, and it's been really hot where we are (Hungary).

To top it all, my husband and I have been arguing like all the time, he says that I'm bad tempered and argumentative, and nasty, which I find very hurtful, I don't feel like I am, but I'm inconstant pain and I find it hard to know if I'm being realistic.

Please can anyone advise me and could you please send me links to info that could explain to my husband how I am feeling and what's it like to be hypothyroid? Sometimes I feel like even though I'm trying super hard to do everything and I would hope for a praise, his expectations I can never meet, he says I lazy to look for my daughter's water bottle and asking him where it is, but I already looked and couldn't see it. Sometimes I don't see stuff even if it is right in front of me. It's so frustrating and I feel so stupid! Maybe if he knew what a struggle it can be being hypo, then maybe he can understand and be more supportive if he loves me, or if he thinks it's too much for him then he will leave. :-(

9 Replies

  • How are your levels of B12 - Ferritin - Folate - VitD ? They need to be OPTIMAL and not bumping along the bottom of the range ....

  • I'm not sure! Last time I had some of these checked was 1.5 years ago (before I didn't take T3 for about 15 hrs and didn't take iron supplements (or any other supplements) for 9 days.

    FT3 - 3.14 (2.00 - 4.40)

    FT4 - <0.02 (0.93 - 1.70)

    TSH - <0.005 (0.270 - 4.200)

    Ferritin - 148.3 (13 - 150)

    Complete Blood Count - everything within range apart from Hematocrit - 37.6 (37.7 - 48.0)

    WBC Differential - everything in range apart from Lymphocytes - 1321 (1500 - 4000)

    Total Iron Binding Capacity - 286 (228 - 428)

    Serum Iron - 105 (37 - 145)

    UIBC - 181 (112 - 346)

    Thyroglobulin Antibody - 0.38 (0.00 - 4.11)

    Anti TPO - 0.15 (0.00 - 5.61)

    Sodium - 139 (136 - 145)

    Potassium - 3.94 (3.5 - 5.1)

    Chloride - 104 (98 - 107)

    TCO2 - 24.9 (22.0 - 29.0)

    Anion gap - 10.1 (10.0 - 12.0)

    At this point I was on T3 only.

    They didn't check D3, B12 or Folate, however I take 3000iu of D3 most days, 1500mcg of B12, and a B complex that contains folate I think. I can't find the box, we've just been to my parents for a week and haven't unpacked it yet...

    So I thought my levels would be OK?? Maybe not?? What else do I need to get tested? I'll need to look into private tests here.

    Could please anyone advise me on what info I could give my husband so he can understand what's it like to be hypo and all the struggles?

    Thank you!

  • Can anyone please help me and post any links to info that explains to family what is it like to live with hypothyroidism? Thanks! X


    Good website that may have other relevant articles ....

    Good advice from Kalicocat .....

  • Based on these tests and being on t3 only at the time I think your ft3 is a little low, you may have needed more meds. When on t3 only your ft3 should be a bit above range. Your sodium and potassium where a little low too. Have a read of all of the info on Hang in there, I know how hard life can be living like this, let alone with a little child to care for too. Add to that when people don't understand the impact of this chronic illness :) You have felt good before on t3 only and that may be where you need to be again. Take care and keep going, you are doing a wonderful job being mum. x

  • I agree, you need to get your B12 tested. B12 deficiency can make you anemic, meaning low hemoglobin and hematocrit, regardless of your ferritin level. Your red blood cells may be too big, or macrocytic (meaning a higher MCV). What is your MCV value? Is it at the high end of normal?

    My mom was B12 deficient and her lymphocytes were also low (along with below normal hemoglobin and hematocrit) and I've read of other people having low lymphocytes with B12 deficiency.

    Also, your ferritin is high. It could be high from inflammation as ferritin is an acute phase reactant, however, I think it's more to do with the fact that you are taking iron supplements. I think you should stop your iron supplements to let your ferritin come down, high ferritin levels are dangerous. I would also get a CRP (C-Reactive Protein) and an ESR done to see if you have any inflammatory process going on.

  • Hi, thanks. I had some basic tests done 6 months ago and my hemoglobin was 148 (120-160), and hematocrit was 0.439 (0.360-0.460) so I think those are OK?

    I'm sorry but what is MCV? I don't know what my MCV is.

    That high ferritin was 1.5 years ago and it was even higher before, while I was pregnant, but 4.5 years ago was super low at 42 (20-150 I think the ref. range was...) and I got it up to 90, but then it got really high even though I wasn't taking iron supplements anymore...

    At the last test 6 months ago they didn't do ferritin but my iron was 16.6 (8.8-27.0) and my transferrin was 2.70 (2.00-3.80).

    My lymphocyte was 34.1 (20.0-40.0).

    When I had the high ferritin 1.5 years ago, I wasn't taking any iron supplements and neither was I taking any iron supplements when I had this last blood test 6 months ago.

    Please can I ask. What's ESR and CRP and what do they show? Thanks!

  • CRP is C-Reactive Protein and ESR is erythrocyte sedimentation rate. You sound like you could have some inflammation going on. Homocysteine may be another inflammation marker you might want to ask for.

    Have you had any other autoimmune testing? For any of the rheumatoid diseases, like Lupus? It's best to get those things ruled out, just in case. Also have you had a liver panel done, I'm always asking for one of those since I'm diabetic, diabetes affects the liver in a big way.

  • Once you are taking B12 supplements - further testing will produce skewed results I'm afraid. Please read the site below to learn about B12 Deficiency and the further testing that may be helpful .....

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