I've recently discovered this amazing community, and this is the first time I've posted. I would be so grateful for any thoughts about the thyroid test results I got today.
TSH - 0.07 (0.27-4.2)
Free T4 - 12.8 (12.0-22.0)
Free T3 - 3.7 (3.1-6.8)
I've been struggling since my thyroidectomy in August 2019. In May I started a trial of Armour Thyroid, two and a half grains, and have been on this for nearly 7 weeks. My consultant has agreed to bring my review forward as I'm feeling so rough. I had 3-4 weeks of feeling much better - more energy (although far from back to normal), most amazingly a huge reduction in migraines, which had been daily, and improved digestive symptoms. Unfortunately in the past week or two it's all gone downhill and I feel completely exhausted again. I'm assuming that at the beginning I still had levothyroxine in my system ( I had been on 125mcg levo and 10mcg liothyronine), so maybe my overall levels were higher.
I'm mystified by the almost supressed TSH but lowish T3 and T4.
Thanks so much everyone!
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ParlourPalm
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.
To assess these results we need to know when you took your last dose of NDT before the blood draw. This is because the T4 and T3 in NDT behave differently once you take your dose.
As NDT contains T3 it will almost always suppress TSH on sometimes even a small dose so not to worry about that and better to go on free hormone levels. Some people on NDT just use how they feel to assess the dose that they are on also.
Your FT3 looks on the low side.
Do you take your dose all at once or split it throughout the day?
Have you also had key vitamins checked - ferritin, folate B12 & D3?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Surrey, Sussex, Kent areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.
Hi Jaydee - thank you so much for getting back to me.
Looking through my notes only my ferritin has been tested recently, but some older results are included below. Despite taking gentle iron from Holland & Barrett, my ferritin hasn't changed in two years. I do take supplements for all of these:
27.4.21
Ferritin 64 (30-400)
Vit D 55 (50-174)
Folate 9.3 (>3)
B12 644 (180-999)
1.2.23
Ferritin 64 (30-400)
Thanks for the info about where to get tested - I'll get some up-to-date ones done.
I don't think I had thyroid antibodies - after much digging around I found this pre-thyroidectomy result, which seems to be in normal range:
We shouldn't really supplement iron unless we have done a full iron panel. Generally recommended to use iron rich foods unless you are vegan/vegetarian?
There is another type of antibody that the NHS doesn;t test and that is Tg (Thyroglobulin) antibodies. You would need to buy a private blood test to see that.
Do start a new post with your vitamin results.
To assess these results we need to know when you took your last dose of NDT before the blood draw. This is because the T4 and T3 in NDT behave differently once you take your dose.
Thanks Jaydee. I took the Armour Thyroid after my blood test, which was at 10am - so a gap of just over 24 hours. Will post again with vitamin results. Im not vegetarian, so will try to get more iron into my diet. I'm hoping I must need a dose increase of the Armour Thyroid , but I'm not sure if that will happen with a TSH of 0.07.
Hi greygoose - thank you for replying! My blood tests were taken at 10am and I hadn't taken my medication, so it was over 24 hours - I now realise that was probably the wrong thing to do and I should have taken it the night before. Do you know if that would have had a major impact on my free T3? I hope I haven't messed up the results. I take all my thyroid medication in one go, first thing in the morning.
Taking levo too close to the blood draw would only impact the FT4. It wouldn't make any difference to the FT3 or the TSH. But, you should leave a gap of 24 hours. I don't think your gap was much longer than that, was it?
It's the TSH that is affected by the time of day, so 10 am was a little late, but wouldn't make an awful lot of difference.
I wouldn't say you've messed them up. Let's just say that the FT4 could have been slightly higher and the TSH slightly lower if you'd followed the protocol we recommend. But the FT3 is what it is.
Arrrgggghhhhhhhh So sorry! Didn't notice you were on Armour. I thought you were on levo. In that case the long gap between the last dose and the blood draw would have given you a false low FT3. But, perhaps not that much lower than the reality and you probably need an increase in dose anyway. An increase of 1/4 grain is not likely to do you any harm, so ask for that. Sorry again.
No worries - mine was a bit of a rambling message, so it was easy to miss! I hope low T3 is the reason I feel so tired, otherwise I don't know what's the matter with me. Will definitely request an increase, thanks.
Probably is. But all sorts of things can cause fatigue. Low nutrients for example. Your ferritin is pretty low, low enough to cause fatigue. That plus sub-optimal FT3...
The TSH was originally introduced to help identify a person dealing with hypothyroidism and was never intended to be used once the person was on any form of thyroid hormone replacement, as then monitoring and dosing should be on Free T3 and Free T4 readings and ranges if taking synthetic T3 and T4 .
NDT was the original and successfully used treatment for hypothyroidism for over 100 years and long before we knew of blood tests, ranges or guidelines and you simply dosed to the relief of symptoms, chewing a various slithers of pig thyroid until you found a slither of a size that suited you.
On NDT you blood test results will look different to those from when on synthetics and we tend to track on the T3 - and your T4 will like be proportionately lower but your T3 proportionately higher than when on T4 monotherapy.
Do you have any comparable blood test results from when on T4 only and/or the T3 / T4 combo ?
The T4 will take around 6-8 weeks to fully leave your body and in that time frame it is suggested to start to build up your dose of NDT in 1/4 grain increments weekly/fortnightly monitoring on blood pressure, pulse and temperature twice daily.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels and I know now I need a ferritin of around 100 : folate 20: active B12 75++ ( serum B12 500++ ) and vitamin D at around 100:
A fully functioning working thyroid wold be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 t around 10 mcg + a measure of T4 at around 100 mcg - with T3 known to be around 4 times more powerful than T4.
Some people can get by on T4 monotherapy.
Some need to replace that little bit of T3 lost when they lost their thyroid.
Some can't tolerate T4 and need to take T3 - Liothyronine only.
Whilst others feel their health restored better taking NDT which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Did you do a straight swop to this dose of Armour ?
NDT is a slow build and your core strength vitamins and minerals need a bit of help before you maybe able to find your health and well being restored better on this treatment option.
Hi pennyannie - thanks so much for this really helpful reply. My last readings on T4/T3 were:
TSH - 0.24 (0.27-4.20)
Free T4 - 13.7 (10.8-25.5)
Free T3 - 3.4 (3.1-6.8)
So not wildly different to where I am now on Armour. I was feeling awful at that point, with every hypo symptom and no energy at all - however, because of the TSH my GP wanted to decrease the levo. I'm now paying to see a private consultant, as I can't even get an appointment to see an NHS endocrinologist.
I did a straight swap to Armour on the consultant's instructions. I felt a bit anxious for the first week or so, then had 3-4 weeks of feeling much better and thinking I was on the road to recovery, before going downhill again. I'm guessing my overall levels were higher with levo still in my system when I was feeling better. I'm hoping I can get an increase in dose, but not sure because of the TSH ...... Can I ask if you are on Armour, and if so, how you're getting on with it?
I'm really interested in what you say about the various vitamins and minerals - I do take supplements but never seem to reach the levels you mention. Ferritin in particular seems hard to increase - I wondered how you got yours up to 100? I'm not vegetarian, and any tips much appreciated!
I had a thyroidectomy because of a multi-nodular goitre that was growing into the sternum and compressing the oesophagus.
Was this T3 self sourced and you were being managed by your doctor or introduced by an NHS endocrinologist who was managing your treatment on the T3/T4 combo ?
It looks as though you were being dosed and monitored on just a TSH reading and undermedicated on the T3/T4 combo - as your T3 and especially T4 too low in the ranges, for you to have had any chance of feeling better.
On the T3/T4 combo your T3 is just around 8% and your T4 around 20% through the ranges after I presume around 24 hours from last dose of both :
Ferritin takes ages to build - but so worth it :
When I became very unwell - though told I was fine - my ferritin came in at 22 :
The NHS iron tablets upset my stomach and I was not offered an alternative so purchased my own. I found Gentle Iron was better for me and took a full dose - 3 tablets a day for around 6 months and then I tipped over 45 and started to feel a bit better and just continued building up as I read no thyroid hormone replacement works well until ferritin tips over 70 - n reality any good quality brand of an Iron Bisglycinate supplement will be much ' kinder " on the stomach and bowel.
I also ate liver twice a week and took Spatone liquid iron sachets.
My ferritin is now around 90 / 110 and I keep myself topped up weekly by making a chicken liver pate and taking a spoonful a day and a little dollop of Hellman's helps this medicine go down.
I had RAI thyroid ablation for Graves in 2005 - and became very unwell - you can read my thyroid journey and all my replies on comments by pressing the icon alongside my name.
I was refused both T3 and NDT through the NHS in 2018 and I couldn't afford to go private so I trialled both a T3/T4 combo and then NDT and chose to stay on the latter, and buy without a prescription, the cheapest brand which is from Thailand
Gosh, you had a very traumatic journey - I hope you're continuing to improve. It's scary how little support is out there. My surgeon referred me to an NHS endocrinologist, who never saw me despite chasing and I was eventually seen by a registrar 1.5 years after the thyroidectomy. The liothyronine was agreed following that, but it wasn't possible to keep any consistent follow-up going except with my GP. I was persuaded my symptoms were down to depression and got side tracked by that. Finally I've starting seeing a private endocrinologist and paying for Armour, at great expense.
Thank you for your advice re ferritin. Mine has been very low in the past, so is much better than it was, but will follow your great tips
Thyroid UK - hold a list of patient to patient supportive endocrinologists and thyroid specialists, both NHS and private - it might be worth getting the copy from admin @ thyroiduk.org - many still do video consults so distance need not be an issue.
You can also start a new post asking for feedback on whom you are waiting see - your replies will need to a be by Private Message ( PMs ) as we are not allowed to openly discuss people,
There is a Chat button above - next to the Alert button - looks like a paper plane - this will light up, if and when any one has any information on the person you are planning to see.
Getting either T3 or Armour prescribed as a new patent on the NHS has become something of a post code lottery - due to cost rather than medical need - so hopefully this private endocrinologist has a free hand and able to offer you all the treatment options.
If you go into openprescribing.net and then into analyse - you can see by CCG area or surgery how active the prescribing of both options are :
As I understand things there are some areas in the country where both T3 and NDT are " black listed " to new patients and not available and even patients whose health has been restored by taking these treatment options are being actively encouraged to switch back to T4 monotherapy.
Just put in either Liothyronine or Armour as the drug you are looking at :
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