I've done a new round of blood tests, due to tiredness, headache, hair loss etc and here are my results:
Serum free T3 level 3.9 pmol/L 3.1 - 6.8
Serum free T4 level 17.8 pmol/L 12.0 - 22.0
Serum TSH level 0.01 miu/L 0.27 - 4.2
Serum ferritin 16 ug/L 13 - 150
They didn't look at any other levels (such as D3, B12 etc). I've been taking B12, Magnesium for the past few months and I'm also taking calcium (because of low PTH value).
Can someone give me some hints regarding T3/T4 levels? Is the conversion rate ok?
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A PTH result needs to be evaluated relative to a serum calcium measured at the same time. If both PTH and calcium results are normal, and appropriate relative to each other, then it is likely that calcium regulation is normal.
Low concentrations of PTH may be due to conditions causing hypercalcaemia, or to an abnormality in PTH production causing hypoparathyroidism. Excess PTH secretion may be due to hyperparathyroidism, which is most frequently caused by a benign parathyroid tumour or kidney disease.
Calcium - PTH Relationship
If calcium concentrations are low and PTH concentrations high, then PTH is responding as it should. Depending on the degree of hypocalcaemia, your doctor may investigate the low calcium further by looking at your vitamin D, phosphate, and magnesium levels.
If calcium concentrations are low and PTH concentrations are normal or low, then PTH is not responding to the change in calcium appropriately, and you may have hypoparathyroidism.
If calcium concentrations are high and PTH concentrations are high, then your parathyroid gland is producing inappropriate amounts of PTH and your doctor may request X-rays or other imaging studies to check for the cause and severity of hyperparathyroidism.
If calcium concentrations are high and PTH concentrations are low, then your calcium regulation system is working normally but your doctor will do some further investigations to check for non-parathyroid related reasons for your elevated calcium.
If calcium concentrations are normal and PTH concentrations are high, then your parathyroid gland is having to produce more PTH than normal to maintain your blood calcium level. This is most commonly due to either vitamin D deficiency or chronic kidney disease.
If you already have plenty of calcium - and from what you say you don't know how much you have - then any extra calcium could end up being deposited where you don't want it e.g. in your organs or lining your arteries.
One of the parathyroids has been damaged during the operation (I have thyroid cancer), so the doctor said I would always have low PTH and so I'll always have to take calcium supplements.
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
How much levothyroxine are you currently taking
Do you always get same brand of levothyroxine at each prescription
Currently Ft3 is far too low
Ferritin is dire
You need full iron panel test for anaemia
Likely to need iron supplements
Are you vegetarian or vegan?
Obviously essential to test vitamin D, folate and B12
I've done the test in the morning, more than 24h after the last dose of thyroxine.I'm taking 125 mcg, brand Accord - started with this one around 5 month ago.
The GP has recommended I take iron supplements. I've done that in the past but I don't tolerate it well, it makes me sluggish and heavy. I'm getting fat from it and it takes away all my energy (that I don't have a lot of anyway). I tried getting iron from foods and it is a little better than the last time I had it measured.
Aiming for ferritin at least around 70 .....So you have long way to go
Trying different iron supplements
Suggest you write new post asking for recommendations on iron supplements
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I've taken iron supplements for a while but didn't tolerate them well. They made me gain weight and I was even more tired. Is there a supplement that is better, one that doesn't give constipation?
There are alternatives that your GP can give you. You will have to speak to your GP, iron deficiency isn't something you can sort yourself, you need treatment and regular monitoring.
The accepted conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 - T3/T4 with most people preferring to come in at around 4 or under :
So to find your conversion ratio when on T4 only you simply divide your T3 into your T4 and I'm getting 4.6 showing poor conversion :
This might improve once you get your T4 into the top quadrant of the range as currently you are only at around 58% through with your T3 at around 22% through the range.
BUT if your doctor is only looking at your TSH result which is low/suppressed s/he might well suggest a dose decrease as they will " think " you are now overmedicated and becoming " hyper " - which is quite ridiculous :
If this is suggested please show them these results and just maybe they will see that you are far from hyper - and still hypothyroid. They might not accept these bloods, and suggest they run their own, and that's ok too, and might even suggest a referral to endocrinology if they unable to understand and are " stumped by your TSH " :
The TSH was originally introduced as a diagnostic tool to help diagnose hypothyroidism, and it was never intended to be used when patients were on any thyroid hormone replacement.
However it does seem nowadays to be all that is routinely run in primary care as the yearly thyroid function test but, in reality, used in isolation the TSH is a very unreliable measure of anything.
Your conversion will improve with optimal vitamins and minerals and this may be an area you will have to supplement yourself as just looking at your ferritin - everywhere I've read suggests this needs to be at least over 70 for optimal thyroid conversion.
I guess as your ferritin has nose dived, the other suspects that weren't tested B12, folate and vitamin D may also need supplementing once you have the results.
OK - I've just read your back story and you haven't a thyroid gland due to cancer so that will explain your low/suppressed TSH and it is essential that you are dosed and monitored on your T3 and T4 blood tests.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on and I read T3 is about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function.
Some people can get by on T4 only : some people fid that T4 seems to stop working as well it once did : and some people simply need both T3 and T4 dosed and monitored independently to restore balance and at a high enough level in the ranges to be acceptable to the patient and restore well being.
So whilst your T4 thyroid hormone has been reinstated by medication your T3 thyroid hormone production has not : and in reality this equates to your health having been down regulated by some 20% of your overall well being.
I just think, if there has been a medical intervention and the thyroid surgically removed or ablated with RAI it makes sense to replace like with like and that both T3 and T4 should be on the patient's prescription for if and probably when, both these vital hormones will be needed to give the patient back their health and their " you " ;
Until your vitamins and minerals are restored to optimal levels, no thyroid hormone replacement works well :
There is synthetic T3 - Liothyronine which needs a referral to an endocrinologist to instigate a trial if you meet the criteria for a trial of T3 for 3 months and then your surgery continues the prescription.
There is also Natural Desiccated Thyroid which was used successfully for over 100 years and which is made from pig thyroid dried and ground down into tablets referred to as grains and contains all the same known hormones as that of the human gland.
NDT is still meant to be available on the NHS through a" named person only " prescription.
I had my thyroid ablated way back in 2005 because of Graves Disease and I became very unwell about 10 years later: I was refused both T3 and NDT by my surgery and NHS trust because of my low/suppressed TSH ( don't worry ) and now I self medicate and buy my own medication -
Both adding T3 to my T4 worked - as did NDT which I have chosen to stay on as it feels softer on my body and now in my third year taking this full spectrum thyroid hormone replacement and replacing like with like as best as I can.
I would prefer to be " in the system "as opposed to being out but when you recognise you are not getting the help and push comes to shove you have to do what you have to do.
Sorry - I've now gone on too much and you may now well have information overload - apologies - I just get concerned when there is a solution :
First build up your core strength as this needs to happen irrespective of what happens next.
Thank you for the detailed response. My GP tends to only measure TSH but I got him to also check T3 and T4 and he has agreed to refer me to an endocrinologist. Fortunately this was all done through NHS and I can’t wait to see what the endo says.I’m taking B12, Magnesium and calcium and I’ll soon start with iron (prescribed by my GP).
I’m tired of being tired and I can’t seem to find a brand of thyroxine that is fine. I used to take Euthyrox and I remember being fine with it so I might return to taking it (not from the UK, I couldn’t find it).
I hope the endo understands that as your have had surgery, and lost your own T3 production, the logical solution is to replace what has been lost.
It is still essential that your get your vitamins and minerals up to optimal levels as no thyroid hormone works effectively if your core strength isn't strong and solid.
Cancer patients tend to be " seen " more sympathetically than Graves :
As initially after surgery you need to have a low/suppressed TSH :
Whilst I'm afraid a low/suppressed TSH in Graves after RAI thyroid ablation seems to be seen as a No No and anti depressants seem to be the consolation prize which is, of course, just as ridiculous.
I don't think its that you can't find the right T4 medication, but more a question of a thyroid hormone imbalance and of your having lost around 10 mcg of T3 a day.
The brain takes and uses an awful lot of T3 just to function properly :
Just to say T3- Liothyronine has become a bit of a postcode lottery because of the costs.
A few years ago it was around 600% more expensive to the NHS to buy T3 than anywhere else in the World.
It's a long story, and Thyroid uk, have a petition in Parliament as to the NHS procurement of T3, the overpricing, and local CCGs restricting prescribing of T3 - Liothyronine because of costs.
Thyroid uk do hold a list of " sympathetic endos ' who are known to be supportive of T3 so you might like to see if there is someone on the list you might not have to try hard to convince of your need.
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