Firstly, thanks to everyone who has advised me here, and no thanks to any of the 3 endos that I've paid to see, or my GP in the UK, I am feeling better than I have for years. I still don't feel 100%, but I guess a decade would probably have taken its toll even without an untreated thyroid condition. Anyway, I have gradually upped my dose to 75mcg, and although I still have some symptoms, and some days are much better than others, overall I feel pretty good, and judging by my latest results (taken at 9.15 this morning, 25 hours after last dose, fasting 12 hours) I don't think I should increase the dose again.
TSH: 0.01 mU/l (Range 0.3 - 4.5) -6.90%
FT4: 1.6 Ng/dl (Range 0.8 - 1.8) 80.00%
FT3: 6.06 pmol/l (Range 3 - 6.5) 87.43%
My question is, are there any scientific references to back the tolerance of a suppressed TSH?
I need to see my GP for an update, and I know she's going to go through the roof when she sees my TSH result. I am sure I've read somewhere that the fear of suppressed TSH is based on the outcomes for hyperthyroid patients, but I can't remember where I saw it. Brain fog is one of the remaining symptoms, and I have read so much stuff without taking it in properly! I would love to show something to my doc, although I will be telling her that for me, quality of life is more important than length...
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I asked almost the exact same question a couple of weeks ago. Here is a link to the post - as I did get lots of information. healthunlocked.com/thyroidu...... (not sure if the link works, but you can copy/paste, I think...)
Thanks, that's really useful... and the link works for me. There seems a lot of evidence that low TSH is OK, my endo said that mine is non existent and therefore dangerous.
Residual symptoms may resolve over time especially if you work on optimal vitamins and gut health over time. I’ve felt loads better since D, B12 and ferritin are much much higher, these were my tricky ones.
Keep on keeping on, I’d request a trial to continue and see if those levels settle. It’s great you are feeling better. 🌱
on my last test D finally broke through 100. b12 was top of range, ferritin had dropped back to 40 something (I have fibroids and heavy bleeding so struggle to maintain) but have since been much more on it with Optifer Alpha, liver twice a week, optimising absorption by avoiding tea/coffee/chocolate with or after ferritin supplements and next I’ve ordered 3 Arrows Heme which has rave reviews here on the forum. I played 9 holes of golf yesterday and just spent 4 hours at the allotment. I can tell my levels are up again. Head is itchy where hair is growing back. Energy levels are back where they were 10 years ago . 👏👏👏🌱
Thanks, my only low mineral is zinc, which isn't responding to the high dose supplements I've been taking for over a year .. D could be higher... especially as i live in Greece and spend most of my life outside... but I was advised against supplements as my calcium and phosphorus are super high. Thanks to advice here I'm taking it with K2 ,so will be interested to see if that improves everything
Do you know your level of selenium? You said in your 1st post that you supplemented and then you were told to stop. See my post to Jefner, 4 days ago . I mentioned my experience of selenium and zinc . If you have naturally, up-regulated selenium due to your genetics, or are still supplementing it , it may be stopping your zinc from rising. Your conversion being so good, suggests your selenium may be very high?
Sorry, Wua13262348 I missed this, and that's interesting.... my selection was 130 (Range 70-150), it went down to 99 2 months after I stopped supplements, I continued to eat a couple of Brazil nuts every day, and 4 months later it was back to 120... that was last September. So it's not too high but if it's preventing the uptake of zinc, perhaps I should cut out the Brazils. But then I might not convert so wekl, and I'm reluctant to change anything now I seem to be on the right dose! Gawd it's so complicated! 🙀
Your selenium is within range both when supplementing, and when not supplementing. You are not over-range in all 3 instances mentioned. Looks as if 4 brazil nuts every day might be all you need to stay within range, but near the top of the range.
You would need to test zinc and copper and selenium from the same blood draw to be able to tell if zinc increases and reduces depending on where your selenium level is. Zinc and copper are thought to have a see-saw effect when hypothyroid. Personally, my zinc went up when selenium came down. I don't know what level my copper level was when selenium sky high, as couldn't find a blood test for copper, zinc and selenium together first time round. Slow Dragon mentioned a test after my first test that did all three.
You mention Vit D being hard to increase despite living in Greece, and calcium and phosphorus being super high. From googling on the internet, and not from any informed knowledge on the subject, it looks as if parathyroids could be suspect.
Per the internet "Phosphorus and calcium are interrelated, because hormones, such as Vitamin D and parathyroid hormone, regulate the metabolism of both minerals."
"Vitamin D regulates calcium and phosphate metabolism".
You likely have some kind of genetic metabolic problem, as I think all of us do on the forum.
"Vit D influences zinc absorption and homeostasis by regulating its transporters. Zinc is an essential co-factor to have the desired functions of Vit D."
"Vit D supports the uptake of zinc in the intestines."
" Most cells in the body have Vit D receptors that enable Vit D to influence a host of different genes and intracellular functions. The type of Vit D that we get from sun exposure or supplements is inactive and requires ZINC among other things, to become activated so it can be used in cells." According to healthandscience.eu, " measuring levels of zinc in the blood does not really give an accurate picture of the body's zinc status." "Zinc is crucial for Vit D's function- and vice versa."
Magnesium is also important, but unless a red cell blood magnesium test is done, testing blood magnesium does not give an accurate picture of magnesium status as the body will take magnesium from other places in the body to ensure that blood magnesium is prioritised above all else. Zinc is the same in this respect , per the above stated website, as blood zinc will be prioritised.
That is really useful... I am taking D with K2 now, so I'll see how that affects my zinc, fingers crossed it will give it a boost. Do you know what the red blood cell magnesium test is called? I would love to see where I am with that... Humanbean mentioned the parathyroids too, I've been checked, see my reply below... but will do some more research
Thanks for all that great information, you're a better googler than me!
It is called a red blood cell magnesium test. It is between £100 and £173.00 in the UK, but don't know how much it would be in Greece, or if readily available there. It measures the level of magnesium found in the red blood cells floating in the blood serum.
It is Blue Horizon Essential Trace Elements and it does copper,zinc, selenium and magnesium ( blood serum, not red blood cell). It is not a finger prick test, but vacutainer, so need a professional to do the blood draw. It is £99.
I've been taking for over a year .. D could be higher... especially as i live in Greece and spend most of my life outside... but I was advised against supplements as my calcium and phosphorus are super high.
There are other members of the forum who live in Greece, or who have lived in Greece previously. Marz lived there for years, and she found she had low vitamin D, and so did her husband. They both have Hashi's, as far as I recall.
If your calcium and phosphate are super high, it might suggest a problem with your parathyroid glands (people have four of them). They are nothing to do with the thyroid exactly. They are called the parathyroid glands because they "live next door" to the thyroid - behind the thyroid to be exact.
That is interesting, my second endo checked my PTH, it was supposedly normal, 67 (Range 10-88) but then so was my TSH for years, according to my doc! I will do some studying, thanks for the research and links, it's a great help.
tsh is completely fine to be suppressed. Others in this post I am sure will agree as recent research shows no negative impact of suppressed tsh. You can only be hyper if your t4 and t3 are too high. Tsh is quite irrelevant as we concentrate on the t4 and t3 numbers more
Thanks so much, I will have to have a really good read to make sure I have a thorough understanding of all this information... it looks really comprehensive. Much appreciated
Make sure your selenium level is OK or you won't be converting your T4 to T3 and that will surly have things out of wack! Here in the U.S.A. " health care is wam bam thank you mame "Often times people on this site know more about your ailment than your practitioner . Healthcare is practiced off of symptoms and protocol manuals here in the U.S.A.. Have had some rather cruel wake up calls. Stay positive and keep on cause people do really care cause heck we are all on the same journey and willing to share and help one another when we can!
Thanks, my selenium is quite high, and my results show I'm a good converter, so I won't be trying the T3 I was given by an endo who didn't seem to understand what it was for! It's certainly true that people here know so much more, and also have real life experience. Such an amazing resource...
It’s ridiculous having to defend feeling better. I resent it very much on your behalf. Also I agree with Regenallotment as to symptoms resolving over time. I have been in the position of not changing my meds for nine weeks to try and get stable blood results. This enforced position has allowed me to clarify what has got better and what not. I was surprised to find that my mental state has improved a lot. (Although I put a lot of that down to the forum). Previously my heart stuff (really the first thing) improved enormously. I have been reminded of that - it’s amazing what and how soon one can take things for granted. My fatigue is still not brilliant. My muscle stuff is worse but at least it’s not heart muscle. This insidious position of defending feeling better AND being not believed either way good or bad is just blooming insane!
I do feel my levels are good, and one of my endos said that once I get the right dose I should see huge improvements after 3 months or so, so I'm definitely going to keep taking 75mcg for the time being whatever anyone says... I am so fortunate that I can buy it over the counter here in Greece, and don't have to convince a GP to prescribe. 🙏
I've just read Barry Peatfield's Your Thyroid and how to to keep it Healthy. There is a section in there explaining why TSH is much less important. If you read that section over a few times right before your appointment at least you are armed with your argument if it arises. I know what it's like with brain fog and add in stress - nothing helpful will come out if you are not prepared. You never know, you might get out of there with your 75mg. Worse case scenario you could always buy the extra 25mg as it's fairly cheap but hopefully it won't come to that.
Just ordered it, thanks for the tip. I buy my meds privately here in Greece so don't need to get the prescription, but want to make sure I still have the support of the doc, you never know when you're going to need it!
Given 75mcg T4, and told to come back in 3 months. I started to feel a bit better, and had some really good days, but by about 9 weeks was feeling terrible again... went back and new tests showed:
TSH 0.01
FT4 1.9
2nd endo: said I was on far too high a dose, should have been tested after 4-6 weeks . reduced my does to 50mcg.
6 weeks on 50mcg:
TSH 0.02 (0.30 - 4.50)
FT3 6.41 (3.00 - 6.50)
FT4 1.4 ( 0.8 - 1.8)
Anti-TPO 558.0 (<30) Anti-TG 189.0 ( < 95)
TSI antibodies 2.6 ( < 2.00) ~ ( TSI was checked after decreasing levo didn't raise TSH. However, endo said TSI level was borderline so not to worry about it, and focus on the hashimoto's for now, although Graves will make it harder to find the correct dosage)
So she says that’s great, all good, if I have 3 months like that I will feel fine.
I still didn't feel good though, constantly tired but not sleeping at night, so she ran various other tests, including on my cortisol levels.
I asked for another TSH 4 weeks later:
TSH down to 0.84
So she says, ok, maybe we can lower dose even more, and eventually get you off thyroxine... so skip tabs at weekends, 25 mcg Mon to Fri....
on 25mcg Mon -Fri (none at W/E) :
TSH: 3.53 ( 0.3 - 4.5)
FT3: 4.43 ( 3 - 6.5) 40.86%
FT4: 1.4 ( 0.8 - 1.8) 60.00%
~~~~~~~~
4 weeks later on 25mcg daily (tirosint) .
TSH: 2.92 ( 0.3 - 4.5)
FT3: 4.3 ( 3 - 6.5) 37.14%
FT4: 1.1 ( 0.8 - 1.8) 30.00%
~~~~~~~~~~~~~~
Following advice from forum ~ increased levo
3 months on 50mcg Tirosint. (9.30am, fasting, last dose 26 hours previous).
TSH 0.1 (0.3 - 4.5)
FT3 4.6 (3.0 - 6.5) 45.7%
FT41.3 (0.8 - 1.8) 50.0%
I'm ignoring TSH as I've been on steroid medication, and it looks like my FT4 and FT3 are 50% through range.
~~~~~~~~~
on 75/50 results from March 9th:
TSH: 0.02 (0.3 - 4.5)
FT3: 4.89 (3 - 6.5) 54.00%
FT4: 1.4 (0.8 - 1.8) 60.00%
~~~~~~~~~~~
on 75mcg, and although I still have some symptoms, and some days are much better than others, overall I feel pretty good, and judging by my latest results (taken at 9.15 this morning, 25 hours after last dose, fasting 12 hours) I don't think I should increase the dose again.
TSH: 0.01 (0.3 - 4.5)
FT3: 6.06 (3 - 6.5) 87.43%
FT4: 1.6 (0.8 - 1.8) 80.00%
~~~~~~~~~~~~~~~~~~~~
Sooo.... as for what to say to Endo about your supressed TSH ?
~ You have previously tried the experiment of lowering the dose to get TSH to come up ,and after 6 weeks on 50mcg, it didn't ... it took a significant underdose of 25mcg for a further 7 weeks to get your TSH to shift ....and when it did you felt dreadful . You do not wish to repeat that experiment at the moment since you feel well.
~ The evidence that you actually need to reduce is a bit flaky in your case because :
a)You know you have some TSI antibodies .. it is known that these can sit on TSH levels., and with having Graves antibodies and Hashimoto's together , is to be expected that your results may sometimes fluctuate unexpectedly . (see below)
~b)There is also your intermittent steroid use .. also known to lower TSH for ? how long after use .. who knows .
~ You have had a lot of constant dose changes in the last year .. what the body most craves in thyroid hormone is stability . that is why the body has such a complex system of deiodinases and TSH ~ to keep fT3 stable under all circumstances.. it wants stability .. so ask your endo to allow your body to enjoy some stability for a bit longer while you currently feel well.
So based on all this , and the fact that you currently much better than you have for a long while, you believe it would be more cautious / sensible to wait another 3 months on this dose and then retest before making any decision about lowering dose.
The 'risks' of supressed TSH when FT4 / fT3 are in range are LONG TERM risks ( even if you do believe they are significant) .. your head isn't going to explode if your endo allows a supressed TSH for another 3 months while your T4 and T3 are in range, in order to get a better picture of 'what happens next' in a patient who is known to be a bit unstable.
i don't expect you to understand a lot of this article , but it is fully referenced , so give it the endo and let them use their brain to figure it out .
Just understand that your TSI antibodies are the 'stimulating' form of:
TRab (Thyroid Stimulating Hormone Receptor antibodies) ,this is sometimes written as TSHR antibodies as in this article .
There are 3 sorts of TRab / TSHRab :
~ 'Stimulating' (sometimes written as TSAb ) tested using a TSI test
~ 'Blocking' (sometime written as TBAb ) hard to test for on their own .
~ Neutral .. don't do much so ignore them .
TRab tests ~ measure both Stimulating AND blocking TRab together and can't tell which you have most of .
(TBII tests also measured both stimulating and blocking , but are not used much anymore)
TSI test ~ measures ONLY the 'stimulating' TRab . so you know you have some of these. and therefore you know they have the potential to mess with you TSH level sometimes, and therefore your TSH might be unreliable sometimes , and so your fT4 / fT3 /symptoms should be looked at not just TSH.
Wow, thank you so much for that tattybogle , and for taking the trouble to look back at my history... I can't tell you how much I appreciate that, especially when it's so hard to get so called professionals to listen to the full story! I feel very reassured and confident that I can argue my case with that information. I will test again in 3 months, and hope that I continue to improve.
Having read your biog I can see you've had a much rougher ride than me. You haven't updated since 2020, so I really hope that means you are feeling better these days,
My TSH was 0.01 & without even chatting to me on the phone, my GP just stopped my Levo. I was taking 25mcg of Levo & told him previously that I was supplementing that very low dose with 2 grains of thyroid S. GP relied totally on TSH result, but a previous blood test showed my T4 & T3 were well in range. GP ignored my endo who prescribed 50mcg of Levo. I'm 64 & really can't battle with useless so called GPs any longer. Good luck x
I just don't understand why they make it so hard, there's enough of us that we aren't likely to be their only patient feeling better at that level. Surely quality of life NOW is more important than something that may or may not happen at some unspecified point in the future... especially as both heart and bone density can be monitored quite easily. Wishing you luck, I am so thankful that I am able to self medicate here in Greece, but I need to check in with my UK GP and I know she's going to give me the whole scare story.
I won't be intimidated though. After almost 10 years of telling her that I thought I was hypothyroid and her telling me my TSH was fine, never checking my actual thyroid hormones, I would still be ill if I hadn't seen an endo in Greece.
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Perhaps, just perhaps, the message is starting to get through to Gps!
Does Erfa take a good while to get into your system? 3 weeks in and feeling rubbish
Advice please on next steps or is this as good as it gets?
Getting to the right dose of Levothyroxine
