Hi, my husband is suffering with a variety of symptom that are making normal life really hard at the moment. He has been taking Levothyroxine 100mg for some years, He had a small lung tumour removed a year ago, and was diagnosed with COPD at that time. He takes inhalers. He was recovering after the surgery, but in the past three months has been unable to sleep, is constantly fatigued, breathless, has low mood, no appetite.
The clinicians seem flummoxed as to the cause of these symptoms, and we are having various tests and scans, but don't hold out much hope. We have suggested that maybe the thyroid is imbalanced, but have been told that the blood tests don't indicate this.
It has been suggested to me by a friend that maybe he has a condition where the thyroid needs T3 but the body isn't making it. Shesaid that this wouldn't show up in normal blood tests.
Please, any advice would be much appreciated?
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jammysandwich
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In order to answer your question we would need to see at the very least a TSH + T3 + T4 reading - it would also be good to know his inflammation, antibodies, and ferritin, folate, B12 and vitamin D readings.
Possibly his ability to convert the T4 - Levothyroxine into T3 - the active hormone that runs the body is compromised - this can happen when there is high inflammation, thyroid antibodies and / or non optimal levels of the core strength vitamins and minerals - namely - ferritin, folate, B12 and vitamin D.
If your doctor is unable to action this full thyroid panel for you - there are Private blood companies who can, as listed on the Thyroid uk website - who are the charity who support this patient to patient open forum. thyroiduk.org
If taking any supplements these need to be stopped around a week before the blood test -
The blood test should be n early morning fasting appointment - with your husband just taking in water o/night and there should be around a 24 hour window from his last of T4 - so we measure what his body is holding rather than that recently ingested.
I now arrange a yearly full thyroid panel as my doctor only runs a TSH which isn't enough when you are not well - you can arrange - at a surcharge - through Medichecks or Blue Horizon for a nurse home visit to draw the blood - and find this the easiest least stressful arrangement - and you can then post the results and ranges on this forum and you will be given considered opinion about your husbands thyroid function and what the next best steps back to better thyroid health are.
“… high inflammation … non optimal … ferritin …”? I have never made any connection to this. I don’t want to jump on this persons post. I will question this myself.
We know that we need optimal levels of the core strength vitamins and minerals -
ferritin, folate, B12 and vitamin D - in order to be able to utilise and convert T4 into T3 - and everywhere I researched suggested that no thyroid hormone replacement worked well until ferritin was over 70 :
I also read that conversion of T4 into T3 can be down regulated by any physiological stress ( emotional or physical ) any chronic long term health issue, inflammation, antibodies, depression, dieting and ageing -
with the T4 converted to reverse T3 which acts as a competitive inhibitor of T3 and reduces metabolism, suppresses T4 to T3 conversion and blocks T4 and T3 uptake into the cell.
I've no links as such - though do have some old copies of papers from - Thyroid Science - and the ferritin suggestion comes from reading around on several well respected Stateside websites.- one being Joseph Mercola.
Thanks pennyannie, even further interested in what you say. I was thinking from a slightly different perspective but the effects may be remarkably similar. I have high ferritin and high CRP, both signs of ‘inflammation’ plus lousy conversion. Medichecks said to seek medical advice due to the CRP. None of my own medics have picked up on this. It’s true I am not doing brilliantly. Interesting what you say about RT3. I have just done a test for this too, not due back for another 10 days or so. It’s not much thought of on the Forum but just checking to see what’s happening to my T4 (highish) if I am not converting - although my dose is way lower than my ‘weight’ suggests.
I have experienced difficulties taking T3 so now trying to get the best out of my T4 in the mean time.
It’s info PaulRobinson has asked for a coaching session with him. It will be interesting. Reached dead end with medics. In fact ended up in a lot more trouble dealing with them.
I wonder - since we have further investigations for a low ferritin - does the same apply for a high ferritin and I would think high CRP needs investigating ?
Since you are dealing with other long term health issues - if medically appropriate - a T3 /T4 combo would be considered - followed by T3 only if the combo did not resolve symptoms.
I had high reverse T3 - way over the range back in 2016 - I was on T4 monotherapy since 2005 and post RAI thyroid ablation and more ill than I had ever been in my life with I believe the consequences of drinking this toxic substance - but found no help nor understanding and referred to a a conundrum.
I started taking an adrenal glandular - as I read RAI was also taken up - to a lesser extent by other glands and organs within the body including the adrenals - and 3 months later my ever so achey, bruised feeling back was less problematic and I was able to stand long enough to watch the kettle boil and boil an egg - that was progress -
Anyway - I was refused both T3 and NDT by the NHS in 2018 and started self medicating - I found T3 very powerful and then trialled NDT which I found much softer on my body and have stayed on NDT ever since -
I still take an adrenal glandular and need to maintain with supplements my B12, folate and vitamin D - and I manage ferritin myself - though food ( chicken livers ) :
I haven't had my reverse T3 retested and for the last 7 years taking half the amount of Levothyroxine when as prescribed T4 monotherapy -
I can see from my blood test results that my T4 is just around 25% through the range - with a T3 at around 90/110% through the range - so presume my reverse T3 - now not a problem and reduced into range and at an acceptable normal level and function.
Everywhere I turn I feel like I am ‘outside the game’. Remember when children, if someone or some group did not like you, or got joy out of manipulating you? This all feels like a bigger game but same. Everyone (or at least someone) knows the rules but won’t tell you. That would spoil their ‘game’. Having hypothyroidism is like an adult form of that game.
The existence of the Forum tries to undo that for us but there is so much to consider. Sounds like knowledge of RT3 is not completely useless. It might provide a bit of a pointer.
I have a Gp appointment very soon and I will follow these ‘inflammation markers’ up. However as many doctors also seem to ‘not be in the game’ either, I will no doubt remain in the dark on that one.
I found no help, advice nor support from within the NHS - and the more I pushed for answers as to my decline in health - the more alienated I became.
I saw 1 doctor privately - ( the head of Endocrinology at the NHS hospital where all my treatment was undertaken ) who didn't answer any of my questions re my having Graves Disease and having had RAI thyroid ablation some years earlier - and who just suggested I should go on the net - buy what I needed and he would help me privately.
At the time - I thought I had wasted my money and that he must have been mad - but a few year later - after continued reading around on here and other places - there I was with a laptop , knocked back again - several times by the NHS and had self sourced all thyroid hormone treatment options -
I couldn't afford and didn't want to see this man again - so read up and Did It for Myself - I'm not 100% and the first to admit this - but I am a darn site better than how the NHS would have me and I do have my independence and life back .
This is an all too common an experience. Whilst doctors and Endos apply a blanket treatment for all those with Hypithyroidodm, the 20% will remain poorly. Uphill a year ago, I managed to navigate the nhs system and stay on ndt, but that all went applecart a year ago & the nhs has left me without treatment for nearly a year. I have lost all faith in doctors as they seem to have no sense of a duty of care to wards my life, preferring to endanger rather than save lives, now they have the choice. Dogma rules which is incredibly difficult to dismantle.
Currently under a nhs endo that I was sent to by my local endo dept with agreement that I need ndt, treatment plan sent....but no funding as of yet. Thats the nonsense of the nhs...... I no longer believe the nhs has my best interests at heart at all.
My high inflammation markers came right down after a few weeks on Low Dose Naltrexone. Of course the GP won’t prescribe but easy to get privately. It’s not an overnight fix though.
I have seen naltrexone mentioned a few times in the Forum. Never quite got my head around it. Information overload again - I suppose. I will think about this again. Great you brought it up. Thank you. Any chance you can PM me with a source?
Press the chat button at the top of the page. This opens a page where you just enter my ‘tag’ arTistapple and when it’s set up just write your message and send. I hope this explanation is correct.
Yes I read this too. Just wondering if I do indeed have high rT3 I might be taking too much Levo. Unlikely I think looking at weight/Levo ratios. Anyway PaulRobinson has asked for this test and if it helps him work out a strategy for me, I am willing.
My understanding is that high rT3 has nothing to do with the weight/ dose ratio of levo. It is to do with genetic mutations in the Dio1 and/or Dio2 SNPs that govern whether your body can convert the T4 you are taking into the T3 it needs. Some people are 'poor converters', see midgley et al 'Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency '.pmc.ncbi.nlm.nih.gov/articl...
Thanks BB001. Without doing the Dio testing, I know both sides of my family had thyroid and pernicious anaemia issues. However thank you for diogenes reference. It’s time to reread it and see if anything in a new light can be revealed. Much appreciated!
An idea of whether you are a poor converter can be obtained from doing the following calculation when not on any meds contain T3 and results are in pmol/L.
FT3 ÷ fT4. If <0.25 you are a poor converter of T4 to T3. Tania Sona Smith of thyroidpatients.ca has written articles on this.
You may need more T3 directly if you convert poorly. My understanding of RT3 is that it's the bodies way of getting rid of excess T4. This happened to me when I was put on a drug that lowered conversion and uptake. Rt3 goes up as my body couldn't convert or utilise. I had to lower my dose to accommodate and wait for my body to recover.
But you need the other cofactors optimal too. Sure Paul will.look at all of this carefully.
I did have had a highish inflammation marker of 10 it has now dropped to 5. I am still not happy with this but I know my thyroid is inflamed. I woke up today with a red mark on my neck like someone had tried to throttle me 😅
Your description made me think of low B12. Especially as he had an op a year ago. Sounds like a situation I was once in.
Some anesthetics reduce B12 levels. Quite why doctors don't seem to know that, I don't know. Low B12 causes symptoms very much like hypo symptoms. But he could also have a thyroid problem at the same time. If so, then he wouldn't be able to much up his B12 level to optimal even after a year or so. So, very important to get B12 and folate tested.
"It has been suggested to me by a friend that maybe he has a condition where the thyroid needs T3 but the body isn't making it. She said that this wouldn't show up in normal blood tests."
That's not quite right. The thyroid doesn't need T3, the thyroid makes T3. But all the other cells in your body certainly need it. But it would show up in the blood tests - as long as both FT4 and FT3 are tested.
Very much agree that B12 (and folate) should be tested.
I'd also consider checking for iron deficiency. I'm not trying to push jammysandwich to read the paper linked below - simply to show that there can be iron deficiency issues alongside COPD.
COPD: Iron Deficiency and Clinical Characteristics in Patients With and Without Chronic Respiratory Failure
Hi @greygoose, just to clarify that in terms of modern anaesthesia, only nitrous oxide depletes B12 and only with prolonged exposure. The amount taken in labour, for example, would be unlikely to cause significant depletion of B12 levels.
I suggest getting an early morning (8-9am) cortisol blood test done in case the inhalers are suppressing the HPA axis, resulting in tertiary adrenal insufficiency. Note that this will require not using the steroid-based inhalers before the blood draw that day. Unfortunately, many health professionals are seemingly unaware of secondary and tertiary adrenal insufficiency
jammysandwich Have a read of the Patient Information Leaflets for the inhalers, and have them to hand when you ask for the early morning cortisol blood test. Adrenal insufficiency is potentially fatal, so should be investigated if only to rule it out (hopefully).
It’s absolutely ESSENTIAL to get FULL Thyroid and vitamin testing done
And to test correctly
100mcg is quite a low dose, especially for a bloke
Approx how much does he weigh in kilo?
Does he always get same brand of levothyroxine at each prescription?
Exactly what vitamin supplements is he taking
Low vitamin levels are highly likely on levothyroxine, but especially if not on high enough dose
As others have said anaesthetic can significantly lower B12
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If he normally takes 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
I wasn't right until I was on 125mcg levothyroxine and I'm thinking I'm ready for a rise. I eat a few Brazil nuts everyday . Apparently the selenium in them helps conversion of T4 to T3. I would ask for blood tests. Hope you find your cure
Please try private tests & endocrinologists. GPs do not test T3. Taking T3 could help with his condition, however, there might be other reasons for that too.
Your DH should do full testing for thyroid as @Slowdragon outlined above. In addition, he probably needs a full iron panel that includes Iron, Transferrin, TSAT (Transferrin Saturation), and Ferritin. If the doctor only looks at Hemoglobin and Ferritin for anemia, they can miss both low iron and low saturation.
Another issue can be “low in range” iron but high ferritin - this is usually because of inflammation causing the ferritin to be high - with low TSAT, meaning hemoglobin carrying oxygen isn’t available to the cells. TSAT can often be the most important test result and some studies have suggested treating with iron even with high ferritin, while others focus only on reducing inflammation. A good hematologist would (hopefully) look at the pieces of the puzzle, including zinc, copper, B12/folate and hepcidin levels to determine if iron infusions would help with his symptoms. (Any hematologist or pulmonologist with their medical degree should be aware of the effects of low TSAT and low T3. I’ve been through this as both a lung cancer and thyroid cancer survivor.)
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GP's first response to medichecks blood and cortisol results
Possible secondary hypothyroidism 
Diagnosing underactive thyroid
My husband and his thyroid problem
