I was first diagnosed with hypothyroidism many years ago by Dr Peatfield, and was medicated (Armour) until I emigrated in 2000. At that time I could no longer access meds from Dr P, and could not get diagnosed where I was. Fast forward 17 years (without treatment) and I returned home and started the hunt for a diagnosis etc again. I finally got diagnosed (private doctor) with hypothyroidism over 2 years ago due most of all to the help, information and advice I found here. I need more help, please.
I have been on various brands of Levo and more recently added T3, in a bid to get the dose/brand right. I am currently on 100mcg Levo and 10 mcg T3. Last months blood test results were:
TSH 0.99 (0.4-4.0); (started at 3.9)
T4 10.4 (7-22); (never gone beyond 16 and then only once)
T3 5.0 (3-6.8). (stayed fairly static)
These Tests done by NHS endo department as I was trying to get help with costs, but they are very similar to private tests done a week before except for the ranges used. The Nhs endo has told me to come off all meds for 3 months and then he might consider doing blood tests again - but no promise to treat even then.
My B12 and Vit D are optimal, but I have not tested ferritin or folate for a while. I feel generally tired, slightly breathless and particularly unwell - ie headache, stiff, tired - in the morning. I AM better than I was when diagnosed. My hair and nails have improved, and can stay awake all day most of the time. I am still carrying weight, sadly, and am mentally 'spaced out' but don't have the muscle pain I had previously.
I'm hoping that someone can see where I'm going wrong, or what I need to do to improve my situation. Sorry for the long post, but hope it is enough to go on.
noquitter
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noquitter
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Am I right in saying that you are currently sourcing your own meds or do you have a formal NHS diagnosis?
It can work against you getting diagnosed privately unless your NHS GP/Endo is on board with it. I'm assuming your current NHS Endo is trying to ensure that you do have hypothyroidism and wants to do an actual diagnosis but there's no guarantee that your TSH will rise high enough. Also it would be a huge set back for you to stop meds for 3 months and could take up to a year to get back to where you are health wise today. Personally I wouldn't recommend that unless you feel you have to.
Free T4 (fT4) 10.4 pmol/L (7 - 22) 22.7%
Free T3 (fT3) 5 pmol/L (3 - 6.8) 52.6%
Your FT4 is far too low and your FT3 less than ideal. It does though depend on how you took the test, what time of day and dose timing of Levo & T3 prior to the test. Levo gap should be 24 hours, T3 8-12 hours to show stable blood levels. 9am is best time to show highest TSH. The fact that you have a TSH at all shows you aren't on enough hormone anyway as on any amount of T3 your TSH should be very low/suppressed.
If you're not supplementing folate then I'd recommend getting a private test to check that level, also ferritin in case you need to work on those. We need OPTIMAL vitamin levels for our thyroid hormone to work well.
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, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
My private doctor who diagnosed me prescribes meds which I get from a pharmacy. I have to pay, of course. I have tried twice to get a diagnosis from the nhs (as private so expensive) to no avail. I will not be following his recommendation to stop meds for 3 months - not after so many years of struggling. And I won't be seeking his advice again either.
I took the test at 8.30 am without meds for 24 hours. I intend to test folate asap as has been problematic previously.
The endo and GP are scared of my current 'supressed' TSH, so I am interested that you say that the fact that I have a TSH at all shows that I am not getting enough hormone - that is news to me.
So if you left 24hrs after T3 dose then your result is whats called a false low, meaning it would have been higher had you delayed part of your dose to take 8-12 hours before the test. I would recommend doing this for future tests for more accurate results.
Indeed GP's and most Endo's (not all!) are scared of a suppressed TSH but to feel well on a combination treatment people do need TSH to be below range. Thats just not how doctors are generally taught though.
Given your current results I'd say you need a Levo dose increase.
If you could get Thybon Henning 20mcg tablets (use pill cutter to split them) named on your prescription you might save some money. Cost is 60-70p per tablet and only available on private prescription.
Thank you again. Given what you, and others, are saying, I think will trial a T3 increase first and later a T4 increase.
I will follow your advice re: taking doses prior to a blood test next time. I do now get Thybon Henning 20 mcg tablets - info from this site - so cost is better.
Your FT4 is low-ish because you're taking T3. That is what usually happens.
As to the level before starting T3, depends how much levo you were taking.
From what you've told us, I don't think you're doing anything wrong. But, you could probably do with an increase in T3.
The Nhs endo has told me to come off all meds for 3 months and then he might consider doing blood tests again - but no promise to treat even then.
The man's a sadist! No way would I do that just to satisfy his evil curiosity. And, it just goes to show how ignorant he is about thyroid. No sane doctor would ask you to do that.
My B12 and Vit D are optimal, but I have not tested ferritin or folate for a while.
Have you been supplementing B12 and D? If so, were you also taking their co-factors?
Thank you also for having a rant at the nhs endo - I did the same. I'm not considering doing as he suggests.
Before taking T3 I was on less Levo - 75mcg. I have been supplementing B12 and Vit D plus co factors as they were always low. Ferritin is a concern and i intend to test asap.
I am confused: If the T3 lowers the T4 why do I need more T3 - won't that make the low T4 worse ? Sorry if it's obvious.
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Is this how you did this test
Do you normally split your T3 as 2 or 3 smaller doses spread through the day
Do you have Hashimoto’s, autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Are you on strictly gluten free diet or dairy free diet
You need more T3 because your FT3 could be higher. And, if you're still having symptoms, then it probably should be higher.
T3 is the active thyroid hormone, T4 is basically a storage hormone that doesn't do much until it is converted into T3. So, it's T3 that causes symptoms when it's too high or too low.
That said, it's a very individual thing how much T4 one actually needs. Some people need their FT4 quite high in range to feel well, even when taking T3. Others would be perfectly happy with their FT4 at the level of yours. We have to find out what we need by trial and error. For myself, I'm better off with an FT4 of zero! We're all different.
But, just because you increase the T3 doesn't automatically mean your FT4 will drop again. It will probably just stay where it is - unless you increase your dose of levo. But, in your place, I would try increasing the T3 first.
Glad to hear you're not going to do as the endo suggests. But have to say something because some people would do it, thinking that the endo knows best. He rarely does!
Thank you for explaining. That's very clear. I think I will trial an increase of T3 and leave T4 alone for now, perhaps.
I have never even met the endo in question - just a ten minute telephone call and one set of TSH/T4/T3 blood tests. No other tests mentioned, few questions asked.
'I am currently on 100mcg Levo and 10 mcg T3. Last months blood test results were:
TSH 0.99 (0.4-4.0); (started at 3.9)
T4 10.4 (7-22); (never gone beyond 16 and then only once)
T3 5.0 (3-6.8). (stayed fairly static)'
Presuming those are ‘frees’ then TSH is fine as often drops in the presence of T3 meds.
FT3 is just over half way through range whilst FT4 is 22.6% through range. If this were me I would reduce T3 and increase T4 meds as by doing this you will raise FT3 levels through further conversion.
Many members need both hormones to be at least 50- 70% through range for best conversation and medicating a little T3 equates to more than you are medicating due to an up-regulation in converting enzymes. Some need more T3 meds than others but many require just a tiny amount to get that conversion enzyme up-regulated to use the T4 appropriately.
If this were me I think I would be looking at 125mcg T4 and 5mcg T3. This would give you slightly more thyroid hormone to offset the reduction in T3 and you might have to titivate dose further depending on future labs.
Folate and ferritin are of equal importance as Vit B12 and Vit D. If ferritin is skewed you will need a complete iron panel to assess true levels.
'The Nhs endo has told me to come off all meds for 3 months and then he might consider doing blood tests again - but no promise to treat even then' One day they might laugh at this utterly barbaric suggestion, but meanwhile I wouldn't recommend coming off your thyroids meds.
The O/P has low FT4 (so room to increase her Levo dose), and ok-ish FT3 levels, and unknown iron and folate levels.
Because we don’t know T4 true conversion abilities, taking more Levo could possibly raise enough FT3 without T3 meds, especially if a possible iron and folate deficiency are addressed as both are likely to improve thyroid hormones performance.
However, changes must be done in a sympathetic fashion that’s allows further continuation of T3 reduction (should FT3 suddenly shoot up) or reversal (should FT3 start dropping). Either way an increase in Levo is necessary to raise FT4 independent of what the final FT3 result is, eg establish good FT4 levels and then titivate FT3 with meds.
I'm substantiating my response to the O/P as thought if I just said ‘Yes’ you would then ask 'Why?' 😬, or quote other member's hearsay 'one change at a time', when each case is individual and there should never be a blanket ban.
What isn’t fine is when multiple deficiencies (usually nutrients/iron on this forum) are being addressed, or more than one new med introduced because it would be tricky to decipher the cause of adverse side-effects.
However, it is often suggested we reduce T4 levels when introducing T3 meds, inducing two changes happening simultaneously. Why would you say 'Never change two things together' when there has to be exceptions?
We are all patients sharing info and offering own opinion. I have written “I think I would be looking at 125mcg T4 and 5mcg T3” to invite thought that it is my own opinion. Others might think differently although the general consensus seems drawn to raising O/P’s Levothyroxine.
Question everything you read and invite discussion as I have done by suggesting these changes, but only by offering credible resources can we eliminate hearsay 😬. If I write too much, just scroll on by. I can’t help it 😂.
Thank you Radd . This is very helpful and makes good sense. Better to be cautious and I thought that rule regimental as I have had to reduce one med whilst raising another at the same time. Every one is different,
Ah yes, it's great when it works and often why members including myself find just a little bit of T3 is enough to feel better.
I first noticed it mentioned on page 134 of Dr Peatfields book whilst under his care and when I asked him he said it was why he advocated thyroid glandulars so strongly when T3 meds were not easily available.
There are three positive angles -
The presence of a little T3 up-regulates the type D1 conversion enzyme meaning we end up with higher levels of T3 than the amount we are medicating.
This enzyme also up-regulates RT3 clearance leaving more room for active hormone.
The better excretion of RT3 (and possibly other inactive metabolites) encourages better usage of thyroid hormone around including improved uptake.
Dr P also states on the same page once a patient is correctly medicated ‘a change in status of the thyroid takes place and the pituitary control and thyroid response may improve, making (T3) thyroid supplementation less necessary or sometimes even unnecessary altogether’… This is of course I assume applicable to those without strong genetic impairments, but why I suggested the O/P shows caution with her T3/T4 med doses.
Tania Smith refers to T3 up-regulating D1 in many blogs and also the numerous other intricacies that influence. Here is a taster but there is many examples if you search her webpages and FB . ….
'Low T3 will downregulate D1 enzyme, hindering T4-T3 conversion rate in D1-rich tissues like thyroid, liver and kidney, while higher T3 will do the opposite'.
'D1 is upregulated as T3 supply and T3 nuclear receptor signaling rises. This is because the DIO1 gene expresses “thyroid response elements” (TREs) that receive signals sent from T3 when it is bound to thyroid hormone receptors in the nucleus (Maia et al, 2011)'.
If we switch it around it could be said that FT3 is a good indicator of D1 activity, eg when FT3 is low, D1 function is low. When FT3 is high, D1 function is high. Tanya goes on to explain this is a consequence of T3 and D1 half-lives, T3 clearance rates, and the speed of intercellular T3 transport and exchange in tissues that richly express D1. Some of it goes over my head 😁
But it is interesting that D1 rises in expression and activity during both hypthothyrodim and hyperthyroidism with T3 increases. It is also worth noting it is the enzyme up-regulated in the thyroid gland by TSH stimulus when we are not medicated. This is what we lose out on by the necessary reduction of TSH our meds might cause, and why we need that little bit of T3 added.
So, I take this to mean that Dr. Peatfield was of the opinion that temporary T3 supplementation could lead to permanently higher FT3 levels, even after T3 supplementation is stoppped ? Meaning T3 is just a temporary treatment, and the permanent treatement he advocated was levothyroxine only?
Yep, you got it but obviously only for some people.
Remember this is a small sentence within a large book and the context is meant to evidence small levels of T3 can be used for some people to achieve wellbeing, and some might even be able to discontinue after the HPT axis has righted itself enough. Hence, he advocated the glandulars when T3 wasn't available for the majority who couldn't achieve well being on Levo mono-therapy.
I am an example of this theory as started on 20mcg T3 with 75mcg Levo, but as time went on I became more and more overmedicated on T3 dictating reduced doses and more Levo (which never filled me confidence after 3 years of terrible mono-therapy). Now a days I medicate 1 grain of Armour (just 9mcg T3) and 50mcg Levo, although tend to increase a little in winter.
I certainly found that when I started on T3 having been woefully low for likely many years my body literally sucked it up, for the first 6 months 25mcg worked well but as my body got used to a steady supply with vit and min levels picking up I've had to reduce my T3 to 15mcg and slightly up my T4 which would suggest my conversion has also slightly improved with the better environment 🤷♀️
T3 is powerful stuff and the permutations are a mixed bag for all
Golddust! I have a particular interest in DIO1 as have one rapid converter and one poor as a pairing. Don't want to highjack the post, but when you refer to D1 enzyme, can I regard D1 as being the same as DIO1 without it altering the meaning of the explanation, even if they are 2 different things in reality, if you see what I mean?
They are one and the same, aka as enyzme type 1, deiodinase 1 or monodeiodinase type 1, or iodothyronine 5'-monodeiodinase type I (5'-DI) and probably more.
There are three - D1, D2 and D3 regulated by genes DIO1, DIO2, and DIO3. People refer to the enzymes by any of these names including the genes that encode them. D1 and D2 convert T4 into T3, and D3 converts to RT3 with help from D1 also. All three are involved in further conversions to three types of T2, then two types of T1, then finally T0 (T-zero).
I love learning about the deiodinases because it gives good understanding of how to get/keep our thyroid meds working best. If you like reading, check out Tania Smiths blogs. Here’s one for starters …. thyroidpatients.ca/2021/02/...
Thanks so much for your posts here radd, although I read Dr P's book cover to cover most of it went over my head, now, having read your posts, I feel as if I'm beginning to understand.
Hi noquitter, just a little comment, not meant to bother anyone but it probably will so I apologise in advance. You've said you will not stop your meds prior to the blood test for the endo. I did do that, stopped all, and as a result I am now prescribed T3 with no arguments. Although I did feel ghastly it was worth it for the years since being properly medicated.
The first time I went to this endo, I was undiagnosed and completely unmedicated. He reckoned my TSH (all that counted!) at 3.9, later over 4.0 and a T4 below range was OK. I went again at the suggestion of my GP as she felt things would be different now I was diagnosed and medicated (privately). Things were not different, and I wasn't prepared to lose all the ground I have made up in the last 2 years to satisfy him.
But I take your point in your particular circumstances, and I'm glad it worked out well for you. Thank you for replying.
Thanks for you email. No upset caused. I had already seen the endo 2 years before. He had been totally rude and unhelpful and was a bit of a 'right-fighter' ie not listening and his way or the high way. If - and it's a huge 'if' - there had been the slightest chance that he might have diagnosed and, crucially, treated me, I would have been willing to stop meds and start again, even though I had struggled for literally years to get as well as I was at that time. Right from the get-go (first consultation) he had made it clear that the TSH test was his holy grail, and that mine - at 4.5 - was fine, in spite of me having every possible thyroid symptom.
I had gone to him at the behest of my GP, having already been diagnosed and treated by a private doctor. I also wanted to reduce the cost of my medication, having paid into the NHS for 40 years. I decided to stick with the private doctor who has been a God-send to me, frankly. It seems the we both arrived at the same place by a slightly different route.
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