Can tests be wrong?: Hi, for a number of years... - Thyroid UK

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Can tests be wrong?

4walls profile image
57 Replies

Hi, for a number of years now I've suspected I have an underactive thyroid as I present with so many of the symptoms. I've had significant gut issues for 5 years with tests showing nothing so this has been put down to IBS, yet gastro consultants and nutritionists have scratched their heads a little as I don't present with standard IBS symptoms. I constantly am constipated even though I go every day, eat a good diet, exercise and drink lots of water.

The reason why I started thinking I've a thyroid issue is that on top of the constipation I regularly feel extremely cold - a to the bone chill even if wearing multiple layers and sitting by a heat source when others in the house are perfectly warm, I suffer from exhaustion on an almost daily basis despite getting a decent amount of sleep, I have very heavy periods which are not caused by fibroids, have been having significant SI joint and foot pain which physios can't understand why they haven't responded to treatment (I work out and am fairly fit), and for the past year or so get waves of low mood sweeping over me.

My GP assures me that they have tested my thyroid function and it's normal. My question is are they likely right and I don't have hypothyroidism despite having many common symptoms, or are there flaws in the testing and should I push for further review? Many thanks.

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4walls profile image
4walls
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57 Replies
FallingInReverse profile image
FallingInReverse

Welcome to the forum! First, what country are you in, and also can you share the exact blood test results (including ranges)?

So from a thyroid perspective, and iron as well (heavy periods are highly linked to iron deficiency) A compete picture of your thyroid health comes from these tests:

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7)Vit D3

Consistently test all at the same time, around 9 am is best if you can. Fasting before. No biotin for 3-5 days before.

Also, if you can, these should be tested to see if an autoimmune cause is behind any malfunctioning thyroid issues:

1) TRab

2) TSI

3) TPOab

4) TGab

Finally, an iron panel generally consists of:

-Iron

-Total iron-binding capacity (TIBC)

-Transferrin saturation

-Ferritin (note - also in thyroid panel)

-High Sensitivity CRP (CRP-hs)

If you can reply to above , this forum can provide more relevant info!

jimh111 profile image
jimh111

Get hold of your blood test results and post them here. I was severely hypothyroid with normal blood test results. I have put my story on my website ibshypo.com .

4walls profile image
4walls in reply tojimh111

On my goodness - I could cry from reading your website. So much of what you write about tallies with symptoms I've been putting up with for so long. The fatigue is so crippling I just can't accept that this is any kind of normal tiredness that your average person deals with. I wake up feeling like I've not slept, I'm bloated and uncomfortable throughout the day (getting worse as the day goes on) and I'm completely exhausted at the weekend after keeping going at work through the week. The only way I can describe it to other people is that it feels like the chronic fatigue after a bad bout of Covid.

Regularly (at least once or twice a month) I feel like I'm coming down with a 'flu - not just the tiredness, but excess mucus stuffing up the back of my throat - and then after a day or two it passes by and doesn't materialise into anything. For years I've been noticing a correlation between that and my IBS going mental.

My brain fog has been terrible for several years - I've been blaming it on perimenopause.

I've also been suffering with a lot of puffiness in the inner area of the eye above the upper eyelid (not sure what the medical name for that part of the eye is - upper eye fold?), even though I don't add salt to my food or eat huge amounts of ultra processed food.

The magnesium information is really interesting. I'm very poor at taking the magnesium supplements I have in the house, so I'm going to take these consistently to see if there is any change to my IBS symptoms. I take vitamin D daily as I've had skin cancer and so don't expose my skin a lot to the skin, but have also been cautious about taking too much.

FallingInReverse profile image
FallingInReverse in reply to4walls

All your symptoms are familiar to me, and many here. Def share your own blood tests when you get them.

Your list has reminded me of a couple years ago - the throat mucous! The puffy eyes. Fatigue where I would pass out for a coma-like nap in the afternoon in the middle of a hectic household. Brain fog that made work take 3x longer for even simple tasks.

Also - whatever’s going on with your thyroid, all our hormonal systems are intricately entwined. HPA axis (hypothalamus-pituitary-adrenal) or HPO (mix in your sex hormones/ovarian) and the interplay with your gut health, vitamin deficiencies etc.

You may also consider testing private (like through medichecks) again as 6-12 months is too long ago to really assess what’s happening right now.

If you are perimenopausal, you might start observing which symptoms get worse (or better) through your cycle. Ovulation (even if irregular if still happening) mid cycle is a hormonal flash point, as is day 1 if your period.

Many of us have the double whammy of thyroid issues plus the volatility of peri/menopause. It’s a roller coaster.

Also note - even the amount of blood lost during our cycle can cause/worsen iron deficiency. NEVER supplement iron without a full iron panel and very regular repeat testing. Excess iron is toxic.

All that’s to say - those in this forum have been there-done that and can share our experience in treating it all.

The education you will get here will help you realize you’re not crazy and your symptoms are real… and treatable. It’s not always fast and simple, but it’s possible.

jimh111 profile image
jimh111 in reply to4walls

My hypothyroidism with normal blood hormone levels was caused by PBDEs, flame retardants banned in 2004 (still around) which are endocrine disrupters. They block the action of T3 in peripheral tissues. The pituitary has different receptor types which are not affected and so blood tests are normal.

In hypothyroidism intracellular magnesium levels are lower, blood tests do not reflect intracellular magnesium and so are of no value. As described on my website I used simeticone (WindEze capsules) to eliminate PBDEs. I have since found Enterosgel to be a little better and suggest you give this a try for three months. You only need to take a teaspoonful daily not the large amounts suggested on the packet. This makes it much more affordable. Anyone taking WindEze or Enterolgel should avoid taking it within a few hours of taking thyroid hormone as it will affect absorption.

Judithdalston profile image
Judithdalston in reply tojimh111

Did you do more research on fibromyalgia…can’t see anything after your note 2020?

jimh111 profile image
jimh111 in reply toJudithdalston

No, I got distracted on thyroid issues. I need to update the page and remove my optimistic timetable.

I was interested in the link between IBS and fibromyalgia. I came to the conclusion that both have intracellular magnesium deficiency as a basic underlyiing factor. This casues NMDA receptors to trigger prematurely causing a hyperalgesia of chronic and visceral pain. NMDA receptors also mediate the powerful slow wave contractions in the gut that are associated with IBS. People with IBS are more likely to get fibromyalgia but a much higher proportion of people with fibromyalgia have IBS - suggesting those with fibromyalgia have a more severe form of intracellular magnesium deficiency. There are no useful blood tests for magnesium status.

Fibromyalgia patients have the 'alpha delta sleep anomaly', they wake up frequently and miss out on deep sleep. Indeed when volunteers in a sleep study were woken up as they were going into stage 4 sleep they developed fibromyalgia like pains. Fibromyalgia patients tend to have poor anerobic fitness, there's a thought that this underlies their sleep problems, getting enough oxygen to the brain. So, my thought is fibromyalgia is a combination of intracellular magnesium deficiency and sleep disturbance.

Growth hormone has a role in repairing micro-trauma caused to tissues during the day, most growth hormone is produced during deep sleep.

There are many causes of magnesium deficiency such as excess alcohol or caffeine, stress, kidney problems or diuretics etc. These are associated with worsening fibromyalgia. Hypothyroidism causes a magnesium shift from the intracellular to extracellular space, the kidneys then eliminate the excess blood levels leading to overall deficiency. I can't find a study demonstrating this but take it from a rare book by Prof Jean Durlac who is the top expert. My hypothyroidism was caused by endocrine disrupting chemicals (EDCs), I needed very high doses of hormone until I discovered I would eliminate the toxins by using WindEze or Enterosgel (details in my website).

The late Dr john Lowe treated lots of fibromyalgia patients with high doses of T3. Sadly he died around the time I was making progress on endocrine disruption.

Judithdalston profile image
Judithdalston in reply tojimh111

Wow, it’s complicated! I did have IBS about 35 years ago for about a year , put it down to stress of job plus having to sit driving 2 + hours a day. Within the decade going onto to twin pregnancy, early menopause, diabetes( initially type 2 then type 3c due to pancreas giving up), hypothyroidism ( initially though on 150 mcg levo.FT3 3% in range, tried Dr Lowe’s T3 protocol, then on T4/T3 combo with TSH stuck at 0.02 ish tho frees c.high 40s/ low 50s%), fibromyalgia, and last 5 years Long Covid with high BP at rest and high HR(minor domestic job:150 bpm) , but postural hypotension (PH) making me blackout. Put on 5 hypertensive drugs, until beta blocker removed. Even did private 2 night sleep apnoea test as low oxygen levels waking up ( but too mild to treat). I’ve taken numerous min/ vit supplements as per this forum protocol for years, but more recently been concentrating on the PH as that is really disabilitating. Been using Mg Taurate for heart, but perhaps not high enough dose as not noticed HR reduction( but never had AFib); this last week started a vagus nerve TENS stimulator. I do wonder whether there is something ‘out’ on my renin-angiotensin loop creating many of these problems, but not according to my GP, who loves the diuretic hypertensives! And LC brain fog makes it very difficult to read scientific papers to keep well informed…

jimh111 profile image
jimh111 in reply toJudithdalston

Oh, this is way to complex for me to understand. It's really dificult to extract out what is relevant and what isn't and researchers rarely try.

Edited to replace "ditto" with "difficult to"!

Judithdalston profile image
Judithdalston in reply tojimh111

Yes, so I have learnt!

BB001 profile image
BB001 in reply toJudithdalston

When I researched atrial fibrillation, I came to the conclusion that magnesium glycinate was the best one.

FallingInReverse profile image
FallingInReverse

Also, to answer your post title question - it’s less likely your tests are wrong and most likely they are being interpreted incorrectly.

The root of the issue gets to the lack of understanding of what a blood test “range” is and what it’s not. Being “in range” was never intended to mean “normal” (whatever that is : ) ) and it certainly is not synonymous with “no symptoms.”

Have a read of this eye opening paper here, then let us know your results so we can share our collective experience.

pmc.ncbi.nlm.nih.gov/articl...

arTistapple profile image
arTistapple in reply toFallingInReverse

My thoughts exactly. Need to start with proper testing as above and bring it back to the Forum. Interpretation is the most important issue. Plenty about testing later when the tests are properly done!

helvella profile image
helvella in reply toFallingInReverse

An excellent document!

I link to it in my blog - as well as to a helpful video:

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.

Last updated 10/02/2025

Link to blog:

helvella.blogspot.com/p/the...

FallingInReverse profile image
FallingInReverse in reply tohelvella

It IS an excellent document… I did save it from one of your posts H!

It’s so ridiculously obvious and factual the way it all developed. Where did the bait & switch happen?!!

That paper should be required reading the first day of medical school. Imagine the heartache that could be saved.

Lately I’ve been deep diving on ferritin. That’s an interesting one because even literature says the range “is a continuum.” And the WHO states 30 is threshold for deficiency… and yet the ranges that still starts around 5.

Useless!

helvella profile image
helvella in reply toFallingInReverse

At least the UK's NICE has said something about anything under 30 being an absolute sign of iron deficiency.

(And just to be very clear - ANYONE can copy the information or a literal copy and paste from my blogs and previous posts/replies. No credits necessary! :-) I added reply because I remembered the video more than anything else. )

FallingInReverse profile image
FallingInReverse in reply tohelvella

Well, I’ll say I did not watch the video at first , but your emphasis was well deserved.

If anyone else is still reading, Helvellas blog has a link to this 30 minute very informative and validating presentation on YouTube.

Linked from his blog above, it would be wonderful if it was required for medical students to watch it when learning about thyroid.

Helvella- now that I’ve watched, I’m tempted to point out the story of the lady with 200 rabbits but won’t muddy the waters. 🤣

4walls profile image
4walls

Thanks all. I will find out what my results are next week and post them.

Buddy195 profile image
Buddy195Administrator

Medics frequently use terms ‘normal’ and ‘within range’ when discussing blood test results, but this often differs from OPTIMAL, where we feel most well.

Ask your GP surgery (or search your practice’s on line portal if available) for a copy of all test results and share with us for further advice/ support. If these are unavailable/lacking, look to test privately, as outlined by    FallingInReverse

thyroiduk.org/help-and-supp...

4walls profile image
4walls in reply toBuddy195

Thanks - hope to get them from my GP next week (I'm in the UK). They were taken 6-12 months ago, but will get what I can and find out exactly what was tested.

Jazzw profile image
Jazzw in reply to4walls

Good idea. And as it’s been a long time since you were last tested, some fresh tests might be a good idea. A lot can change in 6m and with hypothyroidism, symptoms can show up long before any evidence appears in thyroid function tests.

waveylines profile image
waveylines in reply to4walls

In that case look on your nhs app. Go to nedical file blood test results. On each result click on history. It should show all the previous results. Mine go back to 2012. It's a bit of a pain because you have to go through each result and click on history.

I just screen shot them.

4walls profile image
4walls in reply towaveylines

I'm in N. Ireland and our Patient Access app for the NHS doesn't seem to offer test results yet. I can only see appointments and repeat prescriptions.

Sharoosz profile image
Sharoosz in reply to4walls

It could well be that tests were not 'correct' if the doctor didn't tell you how to prepare properly for it and when to do it. I spent four years in UK and was shocked by the lack of knowledge of most GPs on basic issues like that. Go in fasting without your daily tablet, do the test early in the morning and cut certain supplements for several days before testing. (you can check on the forum to see which ones). And make them give you a copy of your test results. 🙂

humanbean profile image
humanbean

When I was iron deficient and had very low ferritin (iron stores) I was always cold.

Improving my iron and ferritin definitely made me feel warmer.

greygoose profile image
greygoose

I'm afraid you're not doing yourself any favours being on a low-salt diet. The body needs salt - especially the adrenals need salt. And when the thyroid is failing the adrenals take up the slack by producing more cortisol. And they cannot do that without adequate salt. It's not salt that makes you swell, it's lack of salt because when the water leaves your body, what little salt there is goes with it. And the body doesn't want to lose its salt so it hangs on to the water.

UFU011878 profile image
UFU011878

I had all the symptoms of hypothyroidism for years and was constantly told that my tests were normal and my exhaustion was because I was doing too much for my age. I was in my 50s. In the end, I had private blood tests done and my TSH was 20. I was later told by another GP that my tests had been subclinical for years, and the first GP had ignored them, telling me they were normal. I regret now, just accepting what I was told and ask for a printout of all my test results. The information I've been given on this forum has been invaluable!Ask for the results of your thyroid tests and, if necessary, test privately which I now need to do

Annoynomice profile image
Annoynomice

I would definitely get private tests done. Medichecks (and others), do a discount through the thyroid UK website. The tests have the advantage that they test the vitamins, and all the relevant thyroid stuff. And no need to persuade your doctor.A year is a long time in thyroid systems, your levels may have got much worse.

You should be able to see your test results through the NHS app, if your GP practice has allowed it.

Just so you know, it is your legal right to have access to the test results, they are not doing you a favour and you don't have to explain.

Fluffysheep profile image
Fluffysheep

Do you have the NHS app? Or an online log in for your surgery? If so you should be able to find your test results on those.

helvella profile image
helvella in reply toFluffysheep

I don't think we know where 4walls lives. The NHS app and access to results only applies in England. There is an NHS Wales app but, as far as I know, that does NOT provide access to results. And Northern Ireland and Scotland do not have any NHS apps.

Fluffysheep profile image
Fluffysheep in reply tohelvella

Ah, of course. Was replying sleepily from bed and didn't think about that.

FallingInReverse profile image
FallingInReverse in reply toFluffysheep

 helvella

Signs my brain fog is getting better… I had immediate recall on OPs location:

healthunlocked.com/thyroidu...

UK it is!

helvella profile image
helvella in reply toFallingInReverse

That's good.!

But we still don't know which of the four nations!

FallingInReverse profile image
FallingInReverse in reply tohelvella

My cross-pond knowledge grows every day. 🇺🇸

helvella profile image
helvella in reply toFallingInReverse

Each of the four nations has its own NHS organisation.

There are some bits of the NHS which cover the whole UK but the main structure of GPs, hospitals, etc., are by nation. Some bits look as if they are separate but actually are the same thing. Other bits look like they cover the whole UK but actually are separate.

For example, technical medicine approval is across the UK. But each of the nations can differ in terms of which medicines they will fund...

And we can have situations in which people who live in one nation get seen at a hospital in another nation. And what will be funded for them can depend on which nation they live in. Indeed, it can go lower and we might see a patient who can be prescribed T3 because they live in one area, but another patient, seeing the same consultant at the same hospital, might not be allowed T3.

It confuses us at least as much as anyone in the US!

Stourie profile image
Stourie in reply tohelvella

Should have said I’m in Scotland xx

Stourie profile image
Stourie in reply tohelvella

My surgery does, but no access to blood results. The apps let us order repeats and appointments. Jo xx

4walls profile image
4walls in reply toFluffysheep

Sorry - behind in reading all these great replies. Yes I'm in NI, and we are always about 20 years behind everyone else! We do have an NHS app but it doesn't do much.

TheMudRunner profile image
TheMudRunner

also, GO’s like to tell you you are subclinical when you are highly symptomatic, which is irritating.

Until your TSH is over 5, no GP (NHS) will care to treat you due to NICE guidelines. Many won’t until it’s over 10. I felt like death by the time mine were 4.69 (or “normal” as I had been told yet again)… I wish I’d had my private blood tests done years sooner (I used blue horizons gold thyroid test) and seen a private GP sooner - he took one look at my blood test and said “yes, you need levothyroxine or you’ll never feel better”. I’m now back under NHS care, so it’s not a one way street to utilise private care for diagnosis.

Good luck - you are in good company here (sadly). It shouldn’t be so hard given how common thyroid issues are, yet here we all are…

Realtiger profile image
Realtiger

Completely relate - this was me for at least 10 years with fibromyalgia diagnosis prior to Hashimotos diagnosis in 2020 when hypothyroidism became more overt with positive antibodies. Looking back, my ferritin levels had been dire (less than 11) in nearly every blood test over that time but were only addressed when I became anaemic (frequently). TSH had been hovering at the higher end of normal (between 3 - 4.20) for years. Eventually my TSH was raised but classed as sub-clinical (between 4.20 - 10) - the fact that it was a bit higher at the repeat 6 week blood plus positive antibodies and being symptomatic meant that I ‘qualified’ for a ‘trial’ of Levothyroxine. I still had to push for it.

If Drs understood how wretched you feel when TSH levels are classed as sub-clinical they wouldn’t make you play the waiting game.

I would push for new tests with your GP (in the hope you’ve hit the TSH jackpot to trigger retesting and antibody tests in 6 weeks) and get a full private thyroid panel (TSH, T3, T4, antibodies, iron, B12,+ Vit D) too. Symptoms of B12 deficiency (which I’m now on injections for) also overlap so worth ruling out.

Also, are you on HRT? I was back and forth to my GP for quite a while thinking my Levo dose needed to be increased primarily because I was still feeling so exhausted (but was also anxious, achy, insomniac and dealing with 30+ hot flushes a day). I’d been resistant to taking HRT but it has helped enormously. I was seriously questioning whether I could keep working…

4walls profile image
4walls in reply toRealtiger

Yeah, I am on HRT. I've been putting the constant fatigue down to peri, but with the bad IBS and other symptoms it does make me wonder. I've been on two different types in the past year - I seem to get a lift for a few months after an initial settling in period, but then the tiredness creeps back.

Windmill6 profile image
Windmill6

Hi,I read your message with great interest as I too presented with similar symptoms to a thyroid problem.However after a very l ong time and multiple tests,I was finally diagnosed with Conns syndrome . There are lots of different hormone diseases out there,keep searching for answers.

CoeliacMum1 profile image
CoeliacMum1

Some similarities.

Sij constipation…I have always felt cold until I was put on Levothyroxine… the other two still problematic but not as bad as before my gynaecological investigation and op/injections.

Read my profile …as quite long and complicated to put here and an even lengthier post then 🫣

My SIJ and pelvic, hip issues are most likely gynaecological symptoms, and when things flare I’ve now started with some intermittent IBS type problems too but also get irritated from processed gf food, and the nasties they have in them, I don’t make habit of eating much of these for obvious reasons now…or I’m noticing things more since my op and injections. I know I have endometriosis on bowels (pelvic cavity) apparently superficial with some scar tissue on bowel seen on pelvic MRI. I have Adenomyosis too, I had polyps removed as I had heavy bleeding and intermittent bleeding but polyps wasn’t seen on ultrasound, I’ll add.

I had linked all my issues to thyroid before as my FT3 was my only blood test that wasn’t investigated or helped and was very low, and has been under range - so along my weight gain and possibly some of the constipation I feel this is still thyroid area… but with gynaecological problems and too much oestrogen v progesterone throughout perimenopause it’s been exacerbating things and has made things quite complicated to work out what’s causing what, and I’m classed as having late menopause, which really isn’t helpful!

I’m assuming GP/gastroenterologist have ruled out coeliac disease if suggesting IBS, but you’re not presenting in most common way, this might be ignored (like me)…this needs addressing if they haven’t.

I’m coeliac I was slightly constipated (didn’t even think it was any big deal) with no other digestive issue but no one ever linked it to coeliac disease … I’m diagnosed pernicious anaemia and Hashimoto’s hypothyroidism all can cause constipation… all found out at same time more or less… I was low B12 & vitamin D can also contribute to this, do you know your levels?

Obviously diet hydration is crucial to find what’s right for you as weirdly too much fibre can cause it also… I still have days I don’t go to toilet and I know I get more problems if goes on too long now.

No idea of your age to say if anything menopausal going on but you get can get premenopausal symptoms when younger than 40…as can post menopausal issues later after menopause.

If your thyroid test was a one off I’d get another done, and get access to your results to tests being done and look if any areas you could be better in eg nutritional B12 & D if lower end you might need more … I need my B12 above 500 at least to ward of neurological issues. Being diagnosed with coeliacs is a benefit as I get annual review, so my nutritional status is done, kidney, liver, and FBC bone profile along with bowel cancer screening more often and pneumonia shot more frequently as we can get various problems and had Dexa scan as big area for coeliacs is osteoporosis and is with menopausal women.

Unlike some I felt fine until a back incident I had off scale blood tests results- so severity v symptoms aren’t really correlated nor is comparison to each other, as we all have different stories with different symptoms but same diagnosis… but thyroid is notoriously bad to get right via NHS and their restrictions 😵‍💫

4walls profile image
4walls in reply toCoeliacMum1

Interesting the overlap in symptoms with some of mine. I'd never linked SI dysfunction with constipation before (I go every day but still feel constantly constipated). Coeliac disease was ruled out by my gastro consultant.

I'm 51 so definitely full blown perimenopausal.

Realtiger profile image
Realtiger in reply to4walls

I can relate to much of  CoeliacMum1 ’s experience. I’ve really been working on addressing constipation recently - it’s plagued me for years even though I eat a gluten free, high fibre plant based diet that includes fermented and probiotic foods.

I did a total gut protocol and reset under a naturopath’s care in 2012 (elimination diet, clay, charcoal, herbs, then course of probiotics) which did exactly what it says on the tin - regular as clockwork for years after that until thyroid issues started. Highly recommend.

Latterly it’s become more of an issue - am finding the following are really helping:

1) drinking peppermint tea after breakfast and staying really well hydrated all day long. If I don’t drink at my usual rate constipation quickly returns. I also add electrolytes if I’m working out/during hot weather.

2) Cutting out gluten free bread - it seems to act like glue in my gut!

3) Adding psyllium husk to smoothies / breakfast. I prefer this to chia seeds but well soaked chia seeds also help (build up the quantity gradually as they can have the reverse effect). You have to increase fluid intake to maximise their effectiveness.

Regularity restored and feel like ‘muscle memory’ , motility and tone are returning to my gut so it becomes a virtuous circle. At times it has felt like it had forgotten how to work altogether!

My conclusion from this is that I dehydrate very quickly, and need both a higher amount of soluble fibre in my diet and to stick to my routine. As soon as any one of these things is disrupted by work, travel, lack of exercise, or living in someone else’s rhythm (e.g. visiting family, having guests to stay) constipation is more likely to be a problem.

I’m sure you’re probably doing all this stuff but thought I’d share just in case.

I’m going on holiday abroad soon for the first time in years so that will be the acid test as my gut usually goes on strike on day one!

4walls profile image
4walls in reply toRealtiger

Thanks for this. Yes, I do a lot of what you mention. I find I can only tolerate regular bread / gluten in small quantities, so I stay away from bread and bagels most of the time. Greek flatbread seems to work better for me at lunchtime. Water I agree, and I am pretty good and being consistent about drinking good amounts every day. Chia seeds are a staple in my breakfast. I had tried psyllium husk before but prefer the chia seeds.

I was doing better for a while, but since the start of the year I've started flaring again, and I seem to then get stuck in a flare cycle for quite a while.

Eddie83 profile image
Eddie83

So your GP "tested" but did not tell you what test(s) were done and what results were? VERY suspicious. Most functional medicine types say they want to see 1<TSH<2. I keep my TSH~= 1.5; TSH=4 is NOT good. I have previously been tested for FT3 and FT4 to make sure I am well in-range on both. Also because I had a wasted gut from silent celiac, getting to a therapeutic thyroid dose was difficult because thyroid hormones administered while in nutritional deficiency, causes undesirable side effects like anxiety. Iron, D3, and lots of other things were not where they should be.

waveylines profile image
waveylines in reply toEddie83

Eddie may I ask what a wasted gut is? I have gluten intolerance/ataxia. Took my gut about two years to heal after removing gluten from diet.

Eddie83 profile image
Eddie83 in reply towaveylines

The intestine is lined with a complex system of tiny finger-like appendages called villi. The villi are required for good digestion. When your digestive tract is gluten intolerant, the use of gluten over periods of years destroys the villi. This creates two problems: (1) You can no longer effectively digest anything, esp. protein, so you become nutritionally deficient. (2) destruction of the villi causes your intestine to become "leaky": substances that normally do not get into the blood stream do, such as peptides, and the body launches an immune attack on these substances. That immune attack is what caused by Hashimoto's autoimmunity, which eventually destroyed by thyroid gland. I actually monitored my thyroid antibodies after getting off gluten; it took about 18 months for the antibodies to disappear, but it took much longer to get well because of the deficiencies baked into my body. Rebuilding the villi is a lengthy process.

waveylines profile image
waveylines in reply toEddie83

Thankyou for explaining. Hope you're feeling better now.

NanaFifi profile image
NanaFifi

hi 4walls,

In a simple few words, yes, test results can be flawed. 27 years of an under active thyroid with very steady test results which suddenly went through the roof! No symptoms of overactive thyroid apart from sky high test results.

Long story short, after lots of tests and a thorough examination turns out that my collagen supplement has biotin in it snd it skews results.

Makes me wonder if something you take could do the opposite in your case?

Good luck in getting things sorted out. X 🤞🏼

4walls profile image
4walls in reply toNanaFifi

Interesting. I only take vitamin D and Omega 3 supplements - not aware of anything in those that might skew results? Must read up on it.

BlueKeith profile image
BlueKeith

I had ibs for 25 years with knee and shoulder pain swelling. Doctor did tests when I was 30 and thyroid was ok. I got tested at 45 again I was diagnosed with hypothyroidism. I got put on 50mcg of levothyroxine and my ibs eased. Then it was upped to 75 mcg then 100mcg. Ibs constipation was cured for about a year then it returned and then I got my dose up to 125mcg . My ibs completely went and no more joint pain or chills. It has just returned after 18 months. All my hypothyroidism symptoms have returned but blood test say I’m ok now. Doctor said my tsh levels are fine so he can’t up my dose. It’s frustrating but I can’t make him up my dose. I understand your frustration. Hope you find your cure.

Litatamon profile image
Litatamon

Just want to add that I had a thyroidectomy due to two of my modules being too big and positioned poorly, causing breathing & swallowing issues. All my thyroid panels were 'normal' in range but out came a totally diseased thyroid per the surgeon's words. And the pathology showed a thyroid twice the normal size, an abnormal colour, notes on surface changes & lymphocytic thyroiditis listed (chronic lymphocytic thyroiditis is Hashimoto's). My endocrinologist at the time was 'seen it before, just aging'.sort of nothing to see here. I was and am not that old & the surgeon totally disagreed with her (as best she could with a colleague) and being a surgeon she has seen it all, from all ages.

(In tandem I would also push for a sleep study as many of the symptoms overlap with sleep apnea. Simply to cross it off)

CapnM profile image
CapnM

GP interactions on thyroid especially auto immune disorders can be a disaster, manby symptoms fall into what they call non specific ( I ahet this term) and they do not have the guidelines and tools to help you.

To exacerbate this problem many are time poor now and drawn from a talent pool more inclined to go along with 'universal' guidelines.

This isnt limited to the NHS and is relevant in other countries. Think of thyroid management being where diagnosis was for menopause was 20 years ago or still is in places.

Rather than entertain the notion that their capabiltiies are limited their self confidence leads them to assert that test are ok and thyroid is not a problem which has the horrible consequence of leaving you thinking that you are the problem.

Suggest to work with them but be prepared to push back or go around them (I am not sure pushing back works but its worth a try). Loads of advice and option to progress on this site. I grew from a list of about 3 to 15 symptoms before I made this move, it took a lot of research and trial and error but in the end I nailed it (for now at least!). I read Thyroid for dummies written by a GP from Cambridge, Brilliant book. Everythign you read on this site expect to have to read it several times before it gets into the old noggin. Good luck.

1piglet profile image
1piglet

I had been in a similar situation for years and had three thyroid tests and all my results were "plumb normal" But, like you, I had all the symptoms, so I did a bit of research and discovered Autoimmune Thyroid disease Hashimoto's), I had never heard of it before. I went back to the doctor and asked if I could be tested for that and he said "No, I definitely hadn't got that as it was very rare" (it is actually the most common form of thyroid problems!) I explained that I was leaving for Spain in less than two weeks permanently and I had no idea of the health system there and I felt pretty wretched". So he said "In that case and for that reason only, I will test you" He rang me as soon as the lab report returned to let me know that I had tested positively for Hashimotos!! Hope you get the help that you need. Best wishes.

Lifeisbeautiful7 profile image
Lifeisbeautiful7

I had to diagnose myself and find a doctor who specialised in thyroid because my blood test results looked normal to my GP. Once I was diagnosed and treated the GP came along for the ride (moving areas helped). Now going through some issues relating, I think, to menopause where I went along with the GP and adjusted my thyroxine and it’s caused issues. I’ve gone back to my usual dose and got my usual blood results and they are telling me I’m over treated because my blood test says so. I’m telling them I am fine and back to normal with similar readings that I’ve had for over 20 years. Sadly my original doctor has died so I will continue to negotiate with them!!

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