I have been refused any increase in Liothyronine due to lab results. Despite being on same dose for a year, I still feel ill and have breathing issues when moving about. All hypo symptoms too.Recently my blood tests showed a problem and I have to have a bone density scan. I was diagnosed with osteoporosis 25 years ago, and stayed on alendronic acid and calcichew tablets for 20 years.
GP said I may need to start taking them again, depending on the result.
Can anyone make any suggestions please?
I just want to get well.
I've been on levothyroxine, which made me ill.
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DandyButch
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Can you give us the actual numbers, please? Blood test results and ranges, and how much T3 you're taking? Otherwise, any suggestions would just be pure fantasy.
I do not have actual Thyroid test results, not accessible on Patient Access because done at hospital. Only GP tests available to access, but they only do TSH.A letter from my endocrinologist to GP on 18th September 2024 stated maintaining detectable levels of TSH and high dose T3.
My Serum Alkaline Phosphatase :
145iu/L (30 - 130 iu/L)
Not liver, but bone, hence the scan referral.
I am currently on 20mcg Liothyronine, 2 x daily = 40mcg.
Well, 40 mcg is not a high dose when on T3 only. And if your TSH is still detectable then you're probably under-medicated. But, without seeing the lab results no-one can say anything for sure. But if you feel you need an increase and they won't give it to you, the only other solution is buying your own.
Are they blaming your low TSH for your osteoporosis,
Not a good idea to take calcium supplements unless your calcium is very low. It is neither a treatment nor a cure for osteoporosis and could make things worse rather than better.
I was taking lots a supplements, as recommended on this forum. Then, following blood tests via GP which showed elevated B12, elevated Vit D, no need for iron etc, doctor told me to stop all of them.
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
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 if taking
We don't actually recommend taking supplements on here, we recommend getting your nutrients tested - vit D, vit B12, folate and ferritin - and taking what you need. Absolutely no point in taking anything if you don't need it.
How high were the B12 and D? What a doctor thinks is high and what is actually high are often two different things. But even if they were high, that doesn't mean you can stop them forever, because the levels will just drop again. We hypos tend to need supplements for life.
But magnesium is different. Highly unlikely that that is high, and bones need lots of magnesium. And, as it's water soluble - as is B12, by the way - excess is excreted.
Be very careful with anything a doctor says about nutrition. They know nothing about it! Always double check whatever they tell you.
Sorry, but that is an awful way to present blood test results. It's difficult to sort out all the different numbers. And we need to see all the results together on any given test. You can just take one result and draw conclusions from it, you need to interpret them in relation to each other.
So, your B12 was high, but with B vits that's ok because they are water soluble, so you excrete the excess. And the thing to do is reduce the dose, not stop it completely. As you can see, both your B12 and your folate have dropped considerably since then, and will continue to drop until you start the B complex again.
Same with vit D. It was high, but not too high. And the dose should just have been reduced, not stopped. It is now dropping again.
So, when I said you should double check any nutritional 'advice' a doctor gives you, I meant ask on here, not get private tests. The tests are ok, it's the interpretation of the results that is wrong.
I am only able to supply it this way via Patient Access. I.E copy the results.I listed my full blood test results from April 2024, 7 months ago, on here.
Seems to me you got as much help as any of us are capable of giving. And now you've got more here. What exactly do you want that you're not getting? Perhaps your questions aren't very clear.
Well, I tried to help - I wanted to - otherwise why would I have replied. I explained to you why your doctor was wrong in his reaction to your nutrient levels, and thats not making you feel better! But as far as his refusal to increase your dose goes, there's not much any of us can do about that. Except to tell you that there are only two possible solutions: either you find a better doctor or you buy your own T3 and self treat. And if that's being abrupt that's just the way I am; I, too, have been having a very hard time since 2019, but I still try to help where I can - and I didn't say anything when you were abrupt with me, I just took it in my stride because I know suffering can make people that way. And all the other people that took the time to reply to you and you just dismissed as unhelpful, understand that too.
So, sorry for not being able to give the answers you require but if the problem is that you're under-medicated then the only solution is to increase the dose, because that's how hormones work.
Thank you. I thought I needed to restart them, but GP told me to stop them after my April 2024 bloodiest results, so, I did.Probably best to ignore GP in this respect.
Hi, More learned people on this site can aide you about your lio increase need. I did have air hunger before my thyroid meds, finally, got adjusted after the mfgr. of my NDT closed shop. All good, now. My first dexa scan in 15+yrs showed osteoporosis. Knew I would not take rx drugs -- check out algaecal website -- located in Canada. Good luck to you -- Ord's/Hashi's not fun & aging, definitely, not for sissies!
Well, your CRP is above range. Optimal levels of CRP are usually < 1mg/L. Optimal thyroid hormones and nutrients can lower that level, and gentle exercise may help too.
Your haemoglobin is very good, although it would be worth your while to research what may be causing it to slowly rise. This link might help - click on the plus signs under "Common questions" :
Thank you -- was unaware of air hunger related to low iron/ferritin. My air hunger resolved w/optimal dosing of NDT. CRP & haemoglobin were not a medical concern. Ferritin, B12, & D3 need improvement. Now, to get the sleeping thing resolved!
Thank you kindly for your reply. The trouble is all the mixed messaging from all angles and, not being able to afford private, trying to interpret what to do with lack of concentration and brain fog. I mean GP, Endo, this forum, on-line, medical papers etc.
I was advised to stop the osteoporosis treatment because I had been on it over 20years, which is supposed to be the limit in treatment. My GP said that depending on scan result, I may have to resume treatment.
My blood test in March was TSH 0.09 mIU/L,
T3 5.2pmol/L, T4 undetectable.
Endo stated 6.8pmol/L T3 upper limit.
I am due another blood test before my next appointment around February 2025.
Thank you, I found this info on a letter, as directed. No ranges though.
I think it was around 12 hours before the blood test 20mcg (one of two daily)I was taking various supplements, ones recommended on this forum, but was told by my GP to stop all of them after my blood test results in April.
I started them again yesterday and today.
With 6 months between appointments it is a very slow recovery especially when nutrients are not monitored, or consistently thoroughly monitored.
And, the medics, when they have done their 'bit' blame mental health issues on substandard recovery, when the substandard treatment could well be the cause of the mental health issues.
Separate magnesium in afternoon or evening, ideally 4 hours away from T3
And a daily vitamin B complex…..best taken immediately after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
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)
Post discussing how biotin can affect test results
Boy yes. Since age 33 following premature menopause after birth of first child. GP said I was too young. Ended up really bad. 7 years later due to my own determination proved I was right, all along. GP eventually apologised.I was managing OK until this. Last 4 years since hashimoto's diagnosis and treatment with levothyroxine. All over again. No-one listens, no-one cares. Lost job etc. Down, down, down.
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Still not feeling well following RAI in January
Still not feeling well after increase
Starred Liothyronine in December still not feeling great 
