I have had Hashimotos for 25 years, GP advised that is hypothyroidism, and have been on T4 levothyroxine replacement for 25 years.
Before that I was ok for 2 years
Before that I had raging Graves hyperthyroidism for 2 years ( they gave me 200% recommend dose of carbimazole my resting heart rate went from 46 to 130bpm, and 150% recommend dose of propranolol, I was very fit and healthy all my life before that)
Up to about 17 years ago I was doing fine , then I developed autoimmune Pernicious anemia with parietal cell antibodies and intrinsic factor antibodies.
I am taking hydroxy cobalamin 1mg/1ml I'm injection 2 times a week ( don't tell my GP as in the UK they restrict you to once a month and that is with my haematologist supporting me, otherwise once every 3 months, we are crazy here) and that dose for about 8 years now.
About 2 years ago , after I had my first COVID jab, probably unrelated, I started getting really unwell, all the symptoms I associate with hypothyroidism, cold, exhausted, hair loss, brittle nails, unexplained weight gain but this time with significantly decreased appetite ( max 560cals per day in one meal as I can't keep anything down but also simply not hungry).
I have not had COVID, I have done any never of home tests as am getting one cold after another, all negative.
My GP (UK) did a thyroid test every 6 months and every time came back normal.
Except last time, came back as abnormal low TSH.
Is that possible?
My values are:
Free T4 14.8,
range normal, range 9-19.01
TSH 0.06
Range abnormal, range 0.35-4.9
Is it possible that :
A) my thyroid has finally given up the ghost and just isn't producing TSH?
B) my body has stopped converting T4 to T3?
I am most definitely not showing symptoms of graves ( hyperthyroidism).
A member asked me for the following information, I have provided what I can in case it helps anyone have that lightbulb moment...
Vit D: chronically deficient, I take 5000IU/ day, last 9 years.
Vit B12: pernicious anemia I take hydroxycobalamin IM injections so they don't test for that any more, last 10 years ( 10 with treatment, 17 without as my GP just lied to me and said everything was ok)
Iron/ ferritin: regularly deficient so they have me on tiny iron tablets for the last 3 years, last tested in 2022 on iron tablets for 2 years at that point and ferritin was 36 range normal range 30 - 300, which now I looked it up seems rather close to low given the range.
My platelets are regularly abnormal low but they said not to worry, no treatment offered, and I now bruise and bleed a lot at acupuncture, when I started 10 years ago I didn't bleed.
I am also on estrogen ( sandrena) 1mg/ day with 200mg progesterone ( utrogestan ) per day but only 14 days out of 28.
I have also been taking pain medication for the last 10 years, 3,600mg/ day gabapentin, 800mg/ day tramadol, 10 mg/ day Diazepam.
My GP has referred my to an endocrinologist at my repeated insistance, but next available appointment isn't until next April.
Also, I found that I have to educate myself as I simply can't trust the docs around here ( my Pernicious anemia was clearly shown on a test result in 2010, I had been going to my GP with symptoms as I was very active and noticed things going wrong, since 2006, and it wasn't until I did private tests after becoming disabled in 2013, that my idiot GP insisted he verify with NHS tests, at this point I had joined health unlocked and you guys had advised me I have a legal right to see my tests results, so I got a copy of the NHS results, where the hospital had written in big letters " we told you back in 2010 this patient required immediate treatment" so I know my GP sat on my results and lied to me for years. I have a different GP now but still I would rather educate myself before I attend this Endo appointment.)
So I haven't really kept up with thyroid information because everything in that regard was ticking along nicely, but it definitely isn't but I can't seem to get my head around how someone with Hashimotos ( private tests from 10 years ago had my antibodies off the measurable scale) and hypo symptoms like before I received treatment, yet on 150ug a day dose, is having a normal T4 and low TSH.
Any help greatly appreciated.
I have googled but, you know, there is a lot out there and I would rather take suggestions here, where I know people have helped me before.
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Do you have any other blood results; Vitamin D, ferritin etc?
One of your comments in your post
'...am getting one cold after another....'
I'm asking as whenever my vitamin D levels are low I tend to get any bugs that are going around. You can edit your post and add any other blood results to it.
Weirdly no, although they had previously been test results for
Vit D: chronically deficient, I take 5000IU/ day, last 9 years.
Vit B12: pernicious anemia I take hydroxycobalamin IM injections so they don't test for that any more, last 10 years ( 10 with treatment, 17 without as my GP just lied to me and said everything was ok)
Iron/ ferritin: regularly deficient so they have me on tiny iron tablets for the last 3 years, last tested in 2022 on iron tablets for 2 years at that point and ferritin was 36 range normal range 30 - 300, which now I looked it up seems rather close to low given the range, thank you for making me look this stuff up, I just assumed everything was ok because
My platelets are regularly abnormal low but they said not to worry, no treatment offered, and I now bruise and bleed a lot at acupuncture, when I started 10 years ago I didn't bleed.
I am also on estrogen ( sandrena) 1mg/ day with 200mg progesterone ( utrogestan ) per day but only 14 days out of 28.
I have also been taking pain medication for the last 10 years, 3,600mg/ day gabapentin, 800mg/ day tramadol, 10 mg/ day Diazepam.
I mentioned all meds there, I do take supplements, but there are lots of those, mainly because of the gastric atrophy due to PA, but also to help reduce inflammation due to one of the conditions: Hashimotos, pa, hypercholesterimia ( I can't take stations so take natural stuff " for your cholesterol"), Lyme Disease ...
( which although on the rise in the UK, the UK remain firmly convinced there is no such thing and that 3 positive test results and a spinal tap mean you get 2 weeks of antibiotics and if you test positive after that then you can't possibly have any symptoms because Lyme disease doesn't exist, and they haul gps and specialist up in front of the medical board threatening to remove their license of they dare to cure people using the globally accepted method of 18 months of 2 different types of antibiotics, one for the spirochetes, one for the cystoblast form - see " Breakspeare clinic" , so literally no doc wants to touch you or talk about treatment options, i did with the help of my haematologist and many months of calling every clinic in England, manage to be seen by the head of infectious diseases and he said he would offer me antibiotics but because i am allergic to penicillin and the only one he could prescribe would be in that family he wasn't actually going to offer me any treatment, so i haven't had any other than the initial 2 week dose at the very beginning to which i had something called a Hirscheimer reaction, which apparently is when you have so many bacteria that when they start dying off the toxins they release is so much because there are so many that your body convulses and is violently sick, like being poisoned, because i suppose that is what is happening .
So,
I hope that huge waffle is useful and hopefully shows why I don't seem to have much luck with doctors.
My haematologist, aces, my pain specialist, wonderful - takes on board my wish not to be on a constant morphine drip, but from the surgeon who tore my placenta leaving me bleeding out for months, to the GP who sat on test results stating I required immediate treatment for years, lying to my face every time I brought it up, to just the general medical council who refuse to admit Lyme disease is a thing , bad bad experiences.
I have only really had success in gaining the help I should be getting if I research and I champion myself and I keep on at them, but this "I" is underpinned and massively supported by organisations like thyroid UK, pernicious anemia society, Lyme disease UK, B12 deficiency ( Tracey Whitney is an absolute champion) and more often than not, kind, understanding people like you, like everyone here, who share their time and experience to help complete strangers like me.
Hi, a few thoughts on your post, while others may come along and weigh in on the big picture.
A) my thyroid has finally given up the ghost and just isn't producing TSH?
Once we are on Levo - generally hypo people aim for a TSH under 1.
In healthy people - the pituitary produces TSH, which then stimulates the Thyroid to produce thyroid hormones like T4 and T3 that we store, convert and use.
But when we start taking hormones, the pituitary senses we have enough in our blood and stops sending out the message (ie, TSH) to our thyroid to make more.
B) my body has stopped converting T4 to T3?
Do you have any blood tests with both free T4 and Free T3? As long as you are on T4 only (ie, not taking T3) you can determine whether you are a good converter with blood tests.
If helpful, regards to hypo/hyper blood tests, here’s a cheat sheet I have for myself for all the important things I keep track of:
At least once get antibody tests to check hyper vs hypo autoimmune.
1) TRab
2) TSI
3) TPOab
4) TGab
For a compete picture of your thyroid health test for these together and every time:
1) TSH
2) Free T3
3) Free T4
Plus these vitamins
4) ferritin
5) folate
6) B12
7)Vit D3
Also follow the right protocol for blood tests consistently every time. Stop Levo 24 hours before, no biotin for a week, fast and do test as close to 9 am as possible.
All that being said - yes - doctors somehow know nothing about thyroid issues. Even the basics, much less the more complex multi- issue scenarios. For thyroid and related, this board is the place to learn!
Thank you for that, very informative, I had no idea TSH drops below 1, I suppose the hospital doesn't have a form for " on levo" and the one they used to mark me as the big red Abnormal, is actually supposed to be for those " before" any meds. Also the fact my GP was concerned, concerned me, I suppose she doesn't know that bit about TSH not being produced because the pituitary is a happy bunny once enough T4 is in the blood. I just got worried and thought, how do I feel so wretched, and somehow have the same TSH of a Hyperactive person? And then my brain melted a little more and I decided I would ask as I was here anyway for someone else.
It makes souch sense when you say it, thank you veryuch.
I have done some antibody tests, but I don't think I did four, I had to pay privately as according toy GP " the NHS doesn't test for thyroid antibodies because the presence or lack thereof doesn't change the treatment" so I will check which I did, I hadn't realized there were 4 types, I went with medicheck and did their thyroid bundle but that was years ago.
As for getting my T3 tested, again not available on the NHS and my GP said if I have enough t4 they don't need to test for T 3, but what I have read seems to suggest that if you don't convert then it does matter but it wasn't a peer reviewed article.
Biotin, that is news to me, I knew about taking my 11pm levothyroxine at lunchtime the day before but I hadn't realized biotin might affect the results and I believe it is in the special multi b vitamin I take to compliment my B12 jabs for my PA, thank you for that information, I will try that for my next test, hopefully have one before seeing the Endo in April.
Hi, UK folks on this board (I’m in the US) have TONS of advice on how and where to get the blood tests we need and as economically as possible. If you have new questions when you’re ready to get new blood tests (ie, opinions on which you need right now, which can wait, how to navigate the NHS and which private companies one can use) - def start a new post so your question doesn’t get buried.
First two ab tests are for Graves ( TRab, TSI) other two for Hashis (TPOab, TGab). Since you have had diagnosis leaning towards graves in the past, I’ve listed those. But since it was decades ago for you, and you did say in the past your hashis ab tests were off the charts, I’m not sure whether this is a prioritY right away. Especially since once diagnosed with an antibody test, you don’t need to test again.
Re T3 - in no uncertain terms… WE ALL NEED TO KNOW OUR FREE T3! It’s surprising every time, but doctors somehow are both completely wrong and completely confident in their wrong-ness about it. Search this board and you will find lots of facts and advice in the struggle for T3 test results, as well as treatments if needed.
Multivitamins are generally frowned upon for hypo folks. They usually have too little of what we need and the rest in them we just don’t need.l (or it’s harmful - like iodine). For hypo folks, there are the 4 key vitties/minerals (listed above) that 1) are harder to raise and/or absorb when hypo, and 2) are needed for optimal thyroid function. So you will read a lot on this board about how we all look to bring that short list to optimal (NOT just “in range”). To that point….
ferritin was 36 range normal range 30 - 300
To be 36 with a 30-300 range - that is very low and in and of itself will cause symptoms, lots that overlap with thyroid ones. The most important thing I’ll note before I finish up - make sure you are monitoring both iron and ferritin before/while you supplement. Iron is very slow to rise, but iron is toxic if over range. Here is what is tested for a full iron panel:
-Iron
-Total iron-binding capacity (TIBC)
-Transferrin saturation
-Ferritin
-High Sensitivity CRP (CRP-hs)
If both your iron and ferritin is low, you can supplement. If iron is in range, and ferritin low - you can only treat with an iron rich diet (no supplements).
Im too brain foggy to grasp your whole big picture. There is a lot going on that I don’t fully understand, especially how all the things might interact with each other. The above is from my experience simply being hypo, and on a long journey to figure out what hormone dosing will help me feel well again.
I am glad you’ve found the board! This and many future threads will help you take control, clear up confusion, navigate the healthcare system, and get in the right path to feeling better (maybe not 100pc, but at least “better”!)
Just spoke to my GP today, having requested T3 as well as full thyroid panel before my upcoming Endo appointment ( NHS) and she advised that she literally cannot order a T3 test because.... There is no check box for T3 on the hospital's blood test form.She wrote in the comments section but said she didn't have high hopes because apparently they don't always read the comments section and are under no obligation to carry out tests for which there is no tick box.
How utterly bonkers is that?
She also said that my suddenly tough as old boots skin ( acupuncturist asked me to let my GP know that my skin is getting impossible to penetrate both for my acupuncture needles and my injection ) could also possibly be a sign I am not getting enough thyroxine.
Does anyone have a work around to get my T3 done on the NHS as I can't really afford private tests?
So it appears that my T4 is converting to T3, and the amount is within the normal range.
Any other ideas on why I feel so unwell with what I assumed were all the signs of hypothyroidism ( which I have , but you know, it feels like I am not getting any thyroxine at all)
Ideas welcome please.
My Endo appointment has been postponed due to the strikes, so I have a little time to start digging up ideas and data before I do get to see them.
Also, as well, it is getting difficult to swallow, although that could just be the lump I assume is the normal goitre thing hypothyroidism is supposed to give you, it looks like I have a large Adams apple which is amusing, but mention it in case it means anything to anyone.
I really do wish whatever this is would go away because I am so tired and exhausted and had my hopes on it being T3 because that is easily sorted ( I assume) by just taking T3 instead of t4, but now that doesn't seem to be the problem I face trying to figure out whatever it is before my appointment because if I don't have ideas before I go in, there is zero chance of them actually doing anything other than sending me off saying " come back in 12 months, and I have been waiting on this appointment for nearly 2 years now.
As you can see when you put the results into % you are on the low side and need an increase in T4 (often 70-80% fT4 is a good place) which will hopefully up your fT3 to above 50%
Yes, I think so, as I have both chronic iron deficiency and vitamin d deficiency I take;
the iron from NHS ( ferris numerate)
and my own l-methyl folate
as well as 5000 IU D3,
but the GP only tests iron levels which are in normal range, they won't test folate and they only test vit d once a year, last year was in the middle of the range.
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