recently had new test . Am still so unwell all time . Been taking 50 mcg Levo with no affect just getting worse also of hi calcium and bone scan shows osteopenia . Still feel sick all time no appetite and like my body’s giving up . My results are as follows completed at MMH
Tpo 195 oil/ml
Tsh 3.45 mu/L 0.27-4.2
Ft412.7 pmol 12-22
Ft3 3.2 pmol3.1-6.8
He 147gl
Ferritin 148ug/l
Active b12 95pmol
Folate3.5ug/L
Vit d 92nmol/L
Did the fast and stopped the Levo to get best results .
can’t understand why I am so very unwell . I take all the supplements suggested by you all am gluten free.
can anyone suggest anything ? Xx🤢😫
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Jemjet
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Do you have the ranges for the blood tests, ie is the range for FT4 say 12-22? The reason we ask is because it makes all the difference how far along the range percentage wise you are.
Your high calcium will be making you feel unwell, have you had parathyroid tested ? Maybe look at all the supplements you are taking in case you are overdosing, especially vitd and calcium.
Presume you mean primary hyperparathyroidism, hyperthyroidism isn’t the same thing.
If so you need scans to locate the tumour and surgery to remove it, levels of calcium and pth do fluctuate but the problem needs to be sorted as hypercalcemia is potentially very serious.
Seen endo and he said they won’t do anything as test numbers not high enough as my pth normal and adjusted calcium only point 2 above range but am so unwell .
They don’t listen even though a professor I went to see did report suggesting exactly what you are saying also have now developed reactive hypoglycaemia seems it’s got to cause serous problems before they do anything so sad that symptoms and being so unwell doesn’t matter numbers come first . Xx
It can be a struggle to get diagnosed and treated, mainly because parathyroid trouble isn’t understood by the majority of Drs, it took me 2 years of continual pestering before I was finally referred to a surgeon and he was furious it had taken so long.
How do I get them to scan the parathyroids if he says my results are not high enough to warrant a scan it doesn’t seem to matter how it is making me so very poorly and on top of the hashimotos that still causing so much illness . The aching in my body is ridiculous .
I’m afraid it’s a slog trying to get a diagnosis, you could consider getting a second opinion from an Endo experienced in parathyroid disease, I had to go private and even then it was hard going.
A cursory look at your post, and it looks like you were put on a starter dose of Levo 3 months ago and left there.
I haven’t read your history in detail, but it’s possibly a very classic example where we get the starter Levo dose, the doctor doesn’t understand that Levo needs to be at a full replacement dose (which in broad numbers is 1.6mcg per 1 kg of body weight). They leave us on 50 and we still feel horrible. And we are left thinking “it’s not working.” Reality is you’re just not taking enough.
You are ready for an increase - most go from 50 to 75. Personally when I was on 50, I went up to 62.5 for 6 weeks and then 75 for the next titration period. There’s always an adjustment period when you increase - low and slow always works best- you need to take the next 3-6 months to titrate Levo to full replacement.
That makes sense at present no affect at all think my optimum dose is 75 for my weight . My t3 as dropped from previous to 3.2 range was 3.1-6.8 my previous result in April 4.3 range the same
My results just getting worse and more things develop and think I have a conversion problem hence came on here to get opinions am not so savvy at this just know feel like am dying and now parathyroid probs too xx
Well here’s how I approached it. Because it was after 1 year on 50 mcgs when I found this forum.
At the time I was searching for answers since my doctor made me feel like there was something else wrong (anti depressants was his first offer lol).
50 mcgs helped a little… trying to think back now, but maybe my joints felt a little better. I think my rosacea started to lessen. I think I got fewer headaches at that point. Can’t recall, but what I do recall as I was still completely dysfunctionally tired.
I was passing out/body shut down every day or a few times a week into an involuntary nap where the tv could be blaring and family running around, and I just turned off.
My brain fog - oh the brain fog!!! I started writing every single thing I was doing down, and would constantly completely forget what I was in the middle of.
Since then - about 1 year ago - I have now increased to 100 Levo and 10 t3 daily.
And about 3 weeks ago I actually clearly and distinctly noticed a sense of normalcy. Not perfect. But totally acceptable : )
I remember saying “I feel like I’m dying.” “I feel 90 years old.” It’s such a distinctly hypo feeling - where we feel like that. No one can understand it unless you’ve been there.
Here’s the good news - you feel like that because you don’t have enough T3, because you don’t have enough t4.
So titrate your Levo, go LOW AND SLOW (do not be tempted to rush it, it will backfire), set your expectations for another 3-9 months… hopefully it lifts sooner, but don’t feel hopeless if it takes longer.
Get your increase, you are on track, on your way.
Caveat - I know nothing about calcium issues, so you should key word search in this forum, not create a new post with that in the title . There are definitely people here with shared experience, I can’t think of their names off the top of my head.
“I remember saying “I feel like I’m dying.” “I feel 90 years old.” It’s such a distinctly hypo feeling - where we feel like that. No one can understand it unless you’ve been there.” — Thank you for this, internet friend. I have said those exact words and no one seems to truly understand the life stopping gravity of the horrible feelings we endure when not treated properly. At my worst, I’ve laid down to sleep and actually thought that I would not wake up and was ok with that because I was in so much agony. It can be horrible. It can also get bette but it’s a test of patience to get there.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Hi I followed all instruction on testing not taking any calcium or Vit d am taking all other supplements on site recommendations just don’t seem to be improving . Have all test results except the endo has not done 24hr urine or the parathyroid scan he said calcium serum and adjusted are only slightly raised . As for my hashimoto it’s a night mare waiting for nhs referral to endo but whilst waiting I made appointment to see him private hoping to get help but as I written above he says high enough . Am tired so tired now of trying to get help am so poorly . He said possibly need T 3 but nhs will not give it and would have to pay for prescription privately . Am lost to it all how can they leave somone so poorly . Feel like am better off dead than living like this and begging for help . There that much going on I don’t know how to make myself feel better but the nhs are not going to help this is a living nightmare . It my gp whom as helped the most running test and doing referrals . I feel like one massive burden .
Typically dose Levo is slowly increased in 25mcg steps until Ft4 is steady at 70-80% through range (testing correctly with last dose levothyroxine 24 hours before test)
Typically that’s approximately 1.6mcg Levo per kilo of your weight per day
So unless very petite likely to eventually need at least 100mcg per day
How much do you weigh in kilo
For good conversion important to maintain GOOD vitamins as well
If Ft3 remains low ……Then is time to consider adding SMALL doses of T3 (2.5mcg or 5mcg ) alongside levothyroxine, usually as 2 or 3 doses per day at roughly equal intervals throughout the day
Are you by any chance on Teva brand of Levo? Your symptoms are much like mine used to be before I managed to get my helpful Doctor to prescribe Eltroxin and I haven’t looked back. Hope you feel better soon x
you need MORE thyroxine not less and soon. And if you’ve given up thyroxine (which is needed for every single cell in your body) it’ll take even longer to get back to feeling good.
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