Been re tested, feedback request

Hello all,

My nice GP ordered an early re test on my thyroid as I was feeling so awful since starting on levo.

I am still feeling pretty awful. A few hours of feeling a little better but long periods of feeling terrible. Headaches from tablets are beginning to recede, that god! Was getting headache every night.not weeping so often, was breaking down into tears every few hours but its subsiding and my depression seems to be more stable.

My results are as follows:

TSH 2.35 mlU/L (0.3 - 3.94)

T4. 14.3 pmol/L (12.3 - 20.2)

T3. 4.2 pmol/L (3.7 - 6.7)

This companies to 5 weeks ago when they were

TSH - 4.22 (0.3 - 3.94)

T4. - 11.3 (12.3 - 20.2)

T3 - not tested first time

My vitamin D is insufficient :

Serum total hydroxy vitamin D 26 nmol/L outside reference range.

He has given me a supplement to take twice a week for 7 weeks then he says he's going to retest my thyroid and vit D.

Gp hasn't tested my B12 as he said my blood count on first blood test was reasonable. Does this seem fair? Or should I go and get it tested privately? I have been on ppis for over a decade and have struggled with as yet undiagnosed stomach pain, low appetite and nausea, lots of wind for 7 months. Trying to come off ppis but am stuck as 15mg.

I don't know why I am still feeling so bloody rough. Struggling to get out of bed, do anything. Pushing myself to try, but just feel like shit all the time. Except for odd few hours here and there.

Thanks in advance.

Hattie x

22 Replies

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  • You are feeling awful because you are still hypothyroid. You need a higher dose of meds. May I ask how much levo you're taking and what the supplement is?

  • Hello, nice to here from you again.

    I'm on 50 levo and not sure what D supplement is or level, picking meds up on Monday.

    GP says he doesn't want to raise dose yet (only 5 weeks) as I seem generally a bit sensitive to side effects and he's worried raising it too quickly would be a struggle. I do have a tendency to struggle with side effects. Never coped very well with antidepressants. Currently on 25mg of sertraline, but I've been telling GP and shrink for a long time that I don't think antidepressant therapy has helped.

    I have explained to him in careful detail about have awful I feel. I think they always suspect it's depression in 'the driving seat'. Although I have insisted that I actually feel less depressed than I have for a long time since starting levo. Just knackered and constant headaches, nausea and stomach discomfort.

  • The thing is you may not 'cope well' w antidepressants because you are hypothyroid and not depressed (or rather depressed because you're still hypo). This does not mean you are sensitive, it means you're still unwell.

    Are you being tested every 6-8 weeks?

    It seems like if someone who is being treated for depression is found to have hypothyroidism you'd want to get them on the right level of meds asap so you'd find out if that makes them feel better, not drag it out indefinitely while still giving them the other meds they say aren't helping.

  • I agree, I'm beginning to wonder if my depression has just been driven by my low thyroid all this time. Like I said to diogenes, I'm going to just keep going back to GP, wear him down, camp out on his bloody doorstep.

    I'm desperate to get better. I have two very elderly parents who really need some help. My brothers do what they can, but I should be there for them. My GP knows all this and yet he still, like you say, 'drags it out'.

  • It can be difficult and complicated but if you keep at it you'll find some kind of resolution. I know what you mean re parents, you want to live life and be present for what you have right now rather than resting up and hoping you feel better tomorrow, or when they change your meds or when your iron levels are better etc.

    Good luck to you, keep learning and working at it and you will see improvements. I am not completely recovered, far from it, but I had about six months of feeling well and I feel better now than when first diagnosed. All of it gives me hope. x

  • That good to hear, keep going, don't give up . Sunnier days ahead.

  • I'm so pleased for you, you seem to me like an exceptional person, with all you do to help people on here. May you continue to improve

    Hattie x

  • I'll just refer you to a reply to another post I made earlier. When you read it, look at your TSH results and comapre them with what the authors say should be if you are normalised on a T4/T3 dose and are closest to normal results otherwise in your body.

    .

    Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy

    M Ito et al. Thyroid. 2017 Feb 06.

    BACKGROUND: Some investigators reported that among athyreotic patients on levothyroxine (LT4) monotherapy following total thyroidectomy, the patients with normal serum thyrotropin (TSH) levels had mildly low serum free triiodothyronine (fT3) levels, whereas the patients with mildly suppressed serum TSH levels had normal serum fT3 levels, and the patients with strongly suppressed serum TSH had elevated serum fT3 levels. The objective of the present study was to clarify which of these three patient groups is closer to their preoperative euthyroid condition.

    METHODS: A total of 133 consecutive euthyroid patients with papillary thyroid carcinoma who underwent a total thyroidectomy were prospectively studied. The patients' serum levels of lipoproteins, sex hormone-binding globulin, and bone metabolic markers measured preoperatively were compared with the levels measured at postoperative LT4 therapy 12 months after the thyroidectomy.

    RESULTS: The postoperative serum sex hormone-binding globulin (p < 0.001) and bone alkaline phosphatase (p < 0.01) levels were significantly increased in the patients with strongly suppressed TSH levels (≤0.03 μIU/mL). The postoperative serum low-density lipoprotein cholesterol levels were significantly increased (p < 0.05), and the serum tartrate-resistant acid phosphatase-5b levels were significantly decreased (p < 0.05) in the patients with normal TSH (0.3 < TSH ≤5 μIU/mL). In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.

    CONCLUSIONS: The serum biochemical markers of thyroid function in patients on LT4 following total thyroidectomy suggest that the patients with mildly suppressed TSH levels were closest to euthyroid, whereas those with normal TSH levels were mildly hypothyroid and those with strongly suppressed TSH levels were mildly hyperthyroid. These data may provide novel information on the management of patients following total thyroidectomy for thyroid cancer or benign thyroid disease.

    ncbi.nlm.nih.gov/pubmed/280...

  • Thanks for your response, I struggle a bit with all this complicated stuff. I haven't had a thyroidectomy, maybe I'm missing the point though? Apologise for my densness.

    Hattie x

  • You're not dense, there is deffo a learning curve on thyroid issues and the scientific papers are another level entirely.

  • Regarding your stomach pain...

    Ask your doctor for a test for Helicobacter Pylori.

    Why were you originally prescribed PPIs?

  • My GP hasn't but I'm fairly sure the endoscopy I had last September said that I hadn't got it. Maybe I need to double check that

  • The upshot of the article is that the TSH range for normal healthy people does not apply to those whose thyroids have been damaged/lost. Therefore your TSH levels are far too high for health in your condition. They should be around 0.03-0.3 according to the paper. Your FT4 is crawling along the bottom of the range as if FT3. So all together that indicates undertreatment

  • I don't understand why my GP won't up my dose now a little, even just 25. He is wanting me to wait 6/7 weeks. I've been so ill for 7 months already. I have told him how desperate I'm feeling, not so much depressed, just desperate to feel better and get on with my life now that I'm not so depressed. Thanks for this feedback. I think I'm just going to keep re booking to see GP every few weeks. Just be a 'thorn in his side' so to speak, wear him down. It's awful that I have to do this whilst feeling so dreadful, but it seems the only way forward.

    Thanks for coming back to me.

  • I do think you should PUSH for a B12 test. Your GP is wrong to think if the Full Blood Count did not flag anaemia that your B12 is OK. Low B12 can be a cause of low mood and neurological conditions. Folate should also be tested as it works with B12 in the body. Also test Ferritn. Those three are not included in the FBC but are very important as they need to be optimal for thyroid hormones to work well and for you to feel better.

    Hope you soon feel better and receive the increased dose soon. If you click onto diogenes name you will read about the research he is involved in - he is Dr John Midgely .... 😊

  • Thanks marz ,

    My GP did my serum foliate - > 20.0 {>3.8 ug/L} - been on supplement for few years

    Ferritin 55 ug/L (13.0 - 150.0) within the reference range but maybe could be better?

    I will read up on Dr Midgely, thankyou

  • B12 result ? -

    b12deficiency.info/signs-an...

    Scroll down the page of the above link to read the neuro-psychiatric signs and symptoms of B12 deficiency .... PPI's prevent good uptake of B12 so you will be low.

    Ferritin could do with a nudge.

    Dr Midgely is diogenes who responded to your post above. Click onto his name to read more of his work mentioned in other posts he has made. Think I am trying to say - you really do have good advice backed with all the scientific knowledge in his responses to you. Maybe download and share with your GP if appropriate.

    Hope you soon feel stronger ...

  • GP wouldn't do b12? May get it done privately

  • Please do look at the B12 link I gave you above - when you see and read the importance you may wish to let him know. There is a Draft letter on the website helping you to write to your GP - explaining the importance of B12. Your GP is criminal in his negligence especially as he knows you are taking a PPI.

    Spend half an hour or so on the PAS Forum here on HU to learn more about B12 ....

    thyroiduk.org.uk/tuk/testin...

    Link above to Private testing companies through Thyroid UK :-)

  • Thank so much Marz, I will get reading and look at the letter template.

    Hattie x

  • Hi Hattie. Sorry you're feeling so rough. Hang in there it WILL get better. Agree with other posters you're still hypothyroid, but it's early days yet if you've only just started levo. I was started on 50mcg levo back in June. I was told it could be too much of a shock to my system to start on more, as my hypothyroidism at diagnosis was classed as "severe" (TSh 70.00, ft4 0.3). I was feeling awful at the time, but nothing compared to how savagely, terrifyingly can't-get-off-the-floor horrendous I felt after starting the levo! Incredibly emotional, nauseous, in bits, remember sitting in my armchair clutching my six month old baby wondering how long baby could survive if I died sitting there (I'm a single mum). And so disappointing as I'd been so relieved to be given a pill that would make me well "very soon" they said. And of course they said it was "impossible" the levo could make me feel worse, treated me like a hysterical child. No other option unless I wanted hospitalization they said. They made me wait ten weeks to up my dose to 75mcg (the b@@tards), but now I know you can properly assess the efficacy of each dose increase after a minimum of 6-8 weeks so if I were you I would hassle your doc for retests every 6-8 weeks. Any earlier and you won't be able to see the full effect. Keep increasing levo dose until you feel well (probably when your ft4 and ft3 are in the upper quartile of the range - even if it means your TSh goes really low - some of us need it to be almost zero to feel well). By the time I reached 100mcg I was back to how I'd been feeling before starting levo, bit more improvement on 125mcg and so on, nine months on and I've made a lot of progress. It's noticeable that after each doseage increase I would feel much better for a few days, then symptoms would return but a bit less strongly. So three steps forward, two steps back. That's how it's been for me anyway. Hope this helps. Ps also agree that your depression is highly likely to be directly caused by your hypothyroidism. And may very well go away once your thyroid levels normalize :-) x

  • Dear nonstopmummy,

    I can't begin to tell you how much your post means to me.

    Thank you for sharing your story, my heart goes out to you. I am appalled that you had to suffer so much as well aslooking after a young baby, you poor thing! You are very brave to have battled through and now be reaching out to help others. I consider myself very lucky to be getting so much support from so many lovely people.

    Sending you lots of gratitude and love

    Hattie x

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