I’m at my wit’s end and would very much appreciate help interpreting recent blood tests and symptoms.
I previously posted a few weeks back with details of private tests carried out with Monitor my Health on 24/1/23. They were as follows:
TSH 4.74 mu/L (0.27 - 4.2)
FT4 13.9 pmol/L (12-22)
FT3 3.7 pmol/L (3.1 - 6.8)
TPO antibodies 35 IU/mL (0-34)
I contacted my GP who met with me and agreed to conduct their own tests. She even agreed to start treating me with levothyroxine if the results included raised antibodies. I left the surgery hopeful that I was finally getting somewhere following years of frustration. Had phlebotomy appointment at 8.50am on 21/2/23 having fasted and ceased all supplements for at least 10 days beforehand.
I was beyond disappointed and felt like I was back to square one when the results came back as follows:
TSH 2.67 mil/L (0.35-4.94)
FT4 12.2 pmol/L (9.0 - 19.1)
FT3 not tested
TPO antibodies 26.4 ku/L (0-34)
Ferritin 29ug/L (23-300) has been low for years, I’ve supplemented with ferrous fumarate, no one has ever bothered to investigate why it’s low, insisting that it’s within range therefore unproblematic. I have my own theory: I was hardcore vegetarian throughout my 20s, reverted to eating meat around the age of 30, had the first of 2 children the age of 34, breastfed both extensively, meanwhile exercised regularly including playing 1st team hockey at weekends and foolishly ate a low calorie diet, extremely devoid of meat (I now can’t get enough beef in me!).
So, it’s a classic case of ‘numbers say no’. However, I continue to feel absolutely dreadful. My symptoms include hair loss (one of the earliest symptoms I started seeing my dr about, probably 10 years ago), crippling fatigue which sees me drag myself through each and every day and falling asleep on the sofa every evening and crawling into bed at 8.30/9 (I also had to reduce my hours at work as a direct result. I’m a primary school teacher), breathlessness (I know low ferritin can cause this. I’ve had tests for asthma, heart failure and an echocardiogram- all normal), persistent and widespread pain throughout my body, general weakness/loss of stamina, light sensitivity (wear sunglasses throughout the year), possible hoarseness of voice, recently I’ve been incredibly congested and routinely blowing my nose, I feel as if my face is puffy, I’m irritable (but I think that’s unsurprising given how bad/frustrated I feel), I’m routinely forgetful and need to write everything down, hands and feet often cold, I sometimes get shaky, I can’t go too long without eating (I’m a very healthy eater), a general feeling that I’m unwell.
I’m currently 50, menopausal and have been trying to find a HRT regime which suits. My latest idea is to get the mirena coil fitted to allow me to apply more oestrogen. I’m hoping that this will help with some of the symptoms. Scheduled to have coil fitted next week (currently using Evorel conti patches). Absolutely cannot tolerate oral progesterone.
I’m exhausted and unsure as to what else I can do. My B12 levels are improving, thanks to advice received here. I’ve obtained the list of private practitioners from Thyroid UK website and see that there’s an apparently well-regarded dr in the Ipswich area, which is an hour’s drive from me.
What is the likelihood that I’d get a diagnosis of hypothyroidism privately? I’d sooner not spend money and energy, neither of which I have in abundance, if there’s little chance of ‘success’ (of course there’s always the possibility that my thyroid is not the problem!).
I also wonder whether anyone can explain to me (in layman’s terms, please!) why different blood tests throw up such wildly different results? For further background, I had blood tests back in mid-2021 when my TSH was 5.08 in a range of 0.35-3.5.
I’m sorry this post is so long but I’ve spent the majority of the day in bed and I’m desperate for some clarification as to why I feel so horrible all the time. What’s more, I’m starting to feel progressively worse.
Many thanks in advance.
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J972
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Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
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.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Here’s absolutely excellent reply by @humanbean
on iron and ferritin panel test results for another member
it’s important to maintain optimal vitamin levels at all times
If you stop vitamin B complex in week before blood test, as contains biotin. Then instead during that week take separate methyl folate and separate B12 supplement to maintain GOOD folate and B12. Otherwise folate can drop rapidly
Thanks Slow Dragon, all good advice. But I would note that I feel *significantly worse* of late, whilst my ferritin levels have been poor for years. Haven’t had a period in approximately 4 years.
I’m very much hoping someone can provide some insight into my thyroid levels, coupled with my extensive symptoms. Thanks.
You feel horrible all the time because you are hypo, and you do have Hashi's - aka Autimmune Thyroiditis.
Why do I say that? Because your 24/1/23 TPO antibodies were over-range. Only by one point, admittedly, but what's the point of having a range if it's just going to be ignored?
That said, ranges are only a rough guide, and blood tests should not be taken as individual entities, but the results looked at across the board. But, for that, you need someone who knows how they relate to each other, and how to interpret them. And the majority of doctors have no idea how to do that.
The point is, your antibodies are high. Even in the 21/2/23 result they are high in-range. So, you're more likely to have Hashi's than not.
Add to that the high TSH - and even in 21/2/23 it's high. A euthyroid TSH (i.e. that of someone with no thyroid problems) is around 1, never over 2, and you are hypo when it reaches 3 - regardless of the irrealistic 'range'. And people with a TSH of just two can have a lot of hypo symptoms, because the TSH - not being a thyroid hormone - isn't a good indicator of thyroid status. Especially when you have Hashi's because the levels are bound to jump around due to the nature of the disease.
More importantly, your FT4 and FT3 - the actual thyroid hormones - are very low - much too low for good health. They are still in-range, true, but as I said, the ranges aren't very realistic. Most people, hypo or not, need their Frees to be at least mid-range. T3 is needed by every single cell in your body to function correctly. If they don't get enough, they malfunction, causing symptoms - or else the body shuts down the receptors so they don't get any at all. Which is why hypo symptoms are non-specific because they can happen just about anywhere in the body. The thyroid affects everything. (So, never let a doctor tell you your symptoms are 'nothing to do with your thyroid', because anything and everything can be to do with your thyroid, and probably is!)
Unfortunately, very few - if any - doctors will have any knowledge of all that because they just aren't taught about it in med school (heaven knows why!). And the guide-lines they all follow say... But, the people that wrote them have no idea what they're talking about either. So, whether private or NHS it can be very difficult to get a diagnosis with numbers like yours, despite the way you feel - which, incidentally - and amazingly - doesn't interest them at all!
But, on the bright side - depending how you look at it - your numbers are bound to get worse as more and more of the thyroid is destroyed by the disease. So, eventually they will have to take notice. And, it might just be a question of catching them on the right day because numbers will fluctuate - especially the antibodies. So, all you can do at the moment is be kind to yourself and keep testing. Sorry if that's not what you want to hear, but that's the sad fact of thyroid life in a less than ideal world.
Little wonder you feel unwell you are hypothyroid and need to be medicated!
Let's look at your MMH labs first
TSH 4.74 mu/L (0.27 - 4.2)
FT4 13.9 pmol/L (12-22)
FT3 3.7 pmol/L (3.1 - 6.8)
TPO antibodies 35 IU/mL (0-34)
I immediately look first at your FT3 then FT4 which is not the way medics do things in their infinite lack of wisdom!
T3 is the active thyroid hormone, it must saturate almost every cell in the body to achieve good health, and must be available in a constant and adequate supply.
Low cellular T3 = poor health
T4 is the storage hormone and is converted to T3 in various tissues of the body.
Your Frees are both miserably low, scraping along at the bottom of the ref range when they should be approaching 75% through their respective ref ranges
Results vary depending on the time of day blood is drawn. TUK advises that this should be around 8.30am to give the most accurate results for analysis.
Different test machines are calibrated to different ranges which can also make labs look different.
The best way to compare is to use the %age through the ref range using this link
Medics are wrongly taught that TSH is the gold standard lab which is leaving thousands of patients wrongly ( or not) medicated. If TSH comes back in range they conclude " fine" ...which is rubbish
When correctly medicated/euthyroid TSH should sit close to 1....in both labs your TSH is too high
But many medics will not medicate until result is well over 5....irespective of what the thyroid levels show.
TSH is a pituitary, not a thyroid, hormone and reflects the overall thyroid level in the blood....it does not show the level,of each hormone, which is vitally important.
Your GP's test certainly looked better but it is important that medics also include clinical evaluation( signs and symptoms) and your symptoms are clearly hypothyroid.
It is also crucial that vit D, vit B12, folate and ferritin are optimal to support thyroid function
You almost certainly have thyroid autoimmune disease/ Hashimoto's which can cause your results to fluctuate, as hormone levels fluctuate. A gluten free diet helps many patients
After a calm persuasive discussion your GP should prescribe levothyroxine....50mcg is the starting dose. You will need further increases.
"The relationship between an underactive thyroid and menopause is quite complicated, and there are a lot of factors involved. The symptoms of each of these conditions can be quite similar and sometimes the two interact in a way that can increase their severity."
In your shoes I'd be keen to get my thyroid levels and nutrients corrected as a priority
There is no quick fix I'm afraid so prepare to persist and be patient.
I'm trying to condense a long, complicated story... so hope it makes sense
Thank you for your extremely thorough and kind responses: it’s a huge relief to feel understood and taken seriously, to be honest.
I now need to think about what I do next, although I have a sneaky suspicion that it’ll entail me being assertive and persistent at my GP surgery.
Has anyone had any success persuading their GP to prescribe, based on ‘in range’ levels? Are they likely to be interested in the ‘through range’ percentages? Be intrigued to hear what your approach was…
Like yourself, I am waiting to be for my GP to put me on Levothyroxine.
I was diagnosed with autoimmune thyroiditis (hashimotos) in November 2021 but had symptoms for many years prior.
I have had one TSH result above 5 - and was told it has to be above 10. Then the next result was 4.12 sigh...
I also keep having low ferritin and vitamin D, not sure about B12, but I have been supplementing B12 due to tingling symptoms.
My TPO anitibodies are high, and following advice on here, I quoted the NICE guidelines to my GP (tactfully).
This didn't help.
I was due a GP blood test last week, but postponed it the day before because I knew I was having a 'hyper' spell, and my TSH would no doubt reflect that and be lower.
So I have re scheduled for around 2 weeks time.
My symptoms are numerous - like you, and I am completely fed up.
One thing I have picked up from numerous posts on here, is the importance of us keeping our vitamin levels optimal, otherwise it suppresses/lowers your TSH.
So I would suggest you do the same, particularly watch your ferritin levels as you say you are inclined to be low, but do first follow Slow Dragons advice, and get a full Iron Panel Test to see if you are anaemic.
So maybe like me, concentrate on getting your vits to optimal levels - then hopefully our TSH will rise.
It is ridiculous that we are essentially hoping for this condition to get worse so we can be treated.
I was tested for celiac and was negative, however, I clearly have a sensitivity which causes me to have scalp blisters, and arthritic type joint pains.
If I accidentally have any gluten now, these symptoms come back with a vengeance.
It is pretty rubbish missing out on some of the good foods, but honestly it is worth it to not suffer the side effects!
How interesting, I didn’t realise there was such a strong correlation between diet and arthritic joint pain. I’d be interested in finding out more about this, can you recommend any books or websites? Thank you.
Hi For years - before my Hashimoto's diagnosis, I knew I was reacting to foods, and would try to cut out/down on them.
Thing was it was a bit half hearted, as I wasn't definite what was making me feel so rubbish.
However, once I joined this forum, someone mentioned a condition called 'dermatiis herpetiformis' that is associated with gluten sensitivity, which matched my scalp symptoms.
As for the joint pain, all I can say is if I accidentally consume gluten, it comes back, and I am hobbling around.
It seems a lot of people with thyroid problems benefit from going gluten free, I'm not altogether sure why this is but it has definitely improved things for me.
As for information/books, most of my learning has come from this site, and also Izabella Wentz's articles have been helpful - thyroidpharmacist.com/artic...
My initial diagnosis was straightforward.... high TSH 10.57 with levo prescribed.
Unfortunately it wasn't so straightforward there after.....that's all in my bio.
We should not be in this position where numbers are seen as the criteria....and limited numbers at that.
This quote is from the link attached below link....it says it all
Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment
"Time for a reassessment of the treatment of hypothyroidism"
John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann
The first author is a TUK advisor and posts as diogenes His team produced the first commercial FT3 test as well as FT4!
Also, a quote from Dr Thierry Hertogh, "the clinical condition of the patient (complaints and physical signs) should predominate in the choice of the treatment as they are the expression of what is really going on inside the cells.
These are medics/ scientists who know what they are talking about, they are emminent in their field. Their words can hardly be argued against by medics with limited thyroid knowledge....but that's what is happening.
Do you think these examples might help to convince your medics that they should be taking your symptoms very seriously?
Or, are they prepared to sit back and let you suffer and wait for further test results that will inevitably catch up and show what is already clear...you are hypothyroid and need to be treated
They need to treat patients as human beings who are all very different....not as machines that can be calibrated to a set point.
If they are worth their stethoscopes they should sit up and listen....and correctly diagnose and treat you.
Well informed persistence is the name of this battle against ill informed medics and their ideas about thyroid treatment.
Thanks DippyDame, that’s incredibly informative. I’ve read your bio, you have every right to rant! I’m enjoying the benefit of your’s and others’ wisdom, gleaned from a long and probably harrowing journey of medical indifference at best, to complete arrogance at worst. Keep ranting.
Hi J972 - I don't know an awful lot about thyroid hormones but, like you, I was struggling along until I found some really great advice on here. I'm not the same as you as my TSH keeps dropping rather than rising but the results are the same - low frees. I've now consulted 5/6 medics who have diagnosed me with a variety of things, and only one said 'Thyroid - reasonable' - at least he was showing some integrity, but reasonable it is not.
My point is, it's likely you'll meet a lot of negativity with medics, so be prepared and come back here when you feel at screaming point, because you will. You'll get great and reassuring advice on here because you WILL feel like you're going mad, your body and mind are regressing, results are low and every medic is telling you it's menopause/all in your head.
One small point about menopause, this is an area I do know quite a bit about - every medic will blame your symptoms on this, they'll tell you to get onto full replacement HRT therapy and that probably won't work because estradiol reduces tsh and lowers frees. I know this, because it happened to me, even with transdermal HRT, it lowers my thyroid hormones and I feel hypo within a very short space of time sometimes hours, sometimes days. I've done almost 3 years of testing on myself to realise this, so my advice to you would be to try to optimise your thyroid hormones before commencing HRT. Please don't misunderstand, I'm NOT anti HRT, far from it, I had some very good years using it, but if your thyroid hormones aren't optimal, the HRT will make you feel worse, please watch out for this. Doctors will tell you that's nonsense - it's not.
I've been given the name of a thyroid doctor who is apparently more open to discussing and treating borderline results and I'm happy to pm you the details of his website, I haven't consulted him but he does seem very approachable and comes recommended.
Lastly, monitor how you feel with the Mirena, it made me very depressed (I've tried it 3 times) as it's a highly androgenic progestin, medics will tell you it's not systemic and only acts locally in the uterus - that's also nonsense it absolutely works systemically, so be careful some women become very depressed using it. I'm not saying that will happen, but you won't be told this by medics as they're desperate to get women using it (they call it gold standard) because it makes their lives easy ie. once fitted it's 3 years of not seeing you. You might be fine and some women absolutely love it and being period free, but if you see big changes in your mood, keep this in mind.
Good luck and always come back here when it all feels a bit much.
Hi Jamima and thanks for your thoughts, I found them extremely interesting. The help and expertise available on this website is nothing short of miraculous. I’m especially interested in what you say about HRT. I’m fully aware that many of my symptoms have not be alleviated one jot by the various HRTs I’ve experimented with over the past 3-4 years. I’ve yet to meet a healthcare practitioner who impressed me with their knowledge and advised me accordingly. I have tried stopping HRT a couple of times and the main thing I notice is my sleep deteriorates. I’ve recently read Sarah Myhill’s latest book and she too is wary of the interaction between HRT and thyroid function. I’m all for personal experience, and it looks as if you’ve monitored things very closely, but, I wonder whether you have heard of any research which supports your ideas?
As for details of the sympathetic endo, please go ahead and PM me - many thanks 🙏
Hi J972 - good to hear you’re getting support on here, I don’t know what would’ve happened if I hadn't found this site, I’d probably be on anti-depressants and barely leaving the house. Below is some research on oestradiol and thyroid function. It’s worth pointing out that you’ll also find some articles which state that oestradiol does the opposite but, most articles and experience I’ve come across from women actually using hrt and thyroid hormones indicate they have to increase thyroid hormone when using hrt. Some say it’s only oral hrt which causes the problem , but I’ve found it happens with transdermal too, and if you think about it, why wouldn’t it? The oestradiol is systemic when transdermal and will therefore affect all the other hormone feedback loops. Apparently it increases thyroid binding globulin and will therefore impact but obviously in a dose dependant way. Personally I’ve had to stop HRT entirely even a 1/4 conti patch causes problems. I don’t have a problem returning to it when my thyroid hormones are increased somewhat but atm, it just makes things worse. Conversely, progesterone, is a thyroid ‘helper’ but I’m talking about bio identical progesterone such as utrogestan or transdermal/transbuccal progesterone. I’ve found bio identical progesterone cream helpful in small amounts 10-20mg per day, but you need much larger amounts to protect the uterus if using oestrogen hrt alongside. It’s also worth noting that the progestin in your patch is also androgenic and is responsible for some negative side effects in some women. There’s a couple of good menopause websites available and a menopause board on here too. It might be worth posting a question on hrt and thyroid and seeing what responses you get and searching for the same as I’ve read some helpful posts on here. I’ll pm the details of the endo.
Just an addition as I missed out something you said - SLEEP! So important and so elusive at times. I’ve found 10-20 mg of transdermal bio-identical progesterone allows me to sleep really well, without hrt and without optimal thyroid levels. Might be worth doing some research on that too.
No problem, I hope some of it helps, it really is a difficult path to navigate, but adding or removing just one thing at a time will help to keep a clearer picture. Good luck.
Great and helpful thread Your initial post was very similar to mine although I have "better" TSH/T3/T4 & "worae" antibodies... Utrogestan was VILE for me and the thyroid Dr I spoke with today seemed unsurprised but I don't yet know why (I'd have thought I was in a minority on this, so give it a try but look out for worsening brain fog); Siberian Ginseng seems to help me a lot with sleep, hot/cold flushes and night sweats but makes constipation and tiredness a bit worse, I take it only 3 days a week and that seems to give a manageable balance... caveat is I don't know why it works though!! Have you looked at Adrenal function and gut health? I'm looking at Super Guts at the mo (seems very promising) and swear by Dr Barry Durant-Peatfield's book. I'll reply to your DM in a moment about the private GP
I’m in agreement with you on Utrogestan - completely vile! Tried both routes of administration, if you get my drift.
I’ve been off HRT for a good 2 weeks and the only classic menopausal symptom I’m experiencing is night sweats, and even they’ve been manageable. I strongly believe that the menopause has been a red herring, where the vast majority of my symptoms are concerned. Joint pain has improved and I have more stamina since starting on Metavive, adopting a gluten free diet and focusing on optimising vitamins. It feels strangely liberating not to be pumping my body with HRT on a daily basis, to be honest. Also, following the advice of a fellow forum member, I’ve bought natural progesterone and estriol creams (brand name Biovea). They literally arrived today so can’t comment on their efficacy yet. I’d also highly recommend the cheesily-titled book, What Your Dr May Not Tell You About Menopause’ by Dr John Lee as it makes a compelling argument for natural progesterone. There’s also quite a bit about thyroid health too.
Yes I've wondered myself if the menopause issues are a red herring and felt similar relief getting off the HRT, although my "gut feel" is that some oestrogen would help. I'll definitely look into Dr Lee's book, that sounds really helpful. I've just also ordered Dr. Myhill's book - just need the time and brainpower to read them all now!!
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Your initial post was very similar to mine although I have "better" TSH/T3/T4 & "worae" antibodies... Utrogestan was VILE for me and the thyroid Dr I spoke with today seemed unsurprised but I don't yet know why (I'd have thought I was in a minority on this, so give it a try but look out for worsening brain fog); Siberian Ginseng seems to help me a lot with sleep, hot/cold flushes and night sweats but makes constipation and tiredness a bit worse, I take it only 3 days a week and that seems to give a manageable balance... caveat is I don't know why it works though!! Have you looked at Adrenal function and gut health? I'm looking at Super Guts at the mo (seems very promising) and swear by Dr Barry Durant-Peatfield's book. I'll reply to your DM in a moment about the private GP 
Help interpreting results
Help interpreting private blood test results
Help interpreting results
Help interpreting blood results?
Is 10+ years of elevated thyroid antibodies with normal t3/t4 harmful?
