Hi! So I posted the other day about having raised TPO antibodies and my TSH has just gone above the reference range (I have included pictures of results again) anyway the people who commented on that last thread have been massively helpful and I have learnt a lot from them already and I have been told to purchase a certain book which I fully intend on doing but there are just a couple of things that I need some help understanding?
So I believe I have hashimotos due to the raised TPO antibodies but I have also read that these can be raised in other thyroid conditions like silent painless thyroiditis so how do I know it’s definitely hashimotos and not this?
as you can see in the picture my FT3 level is still really good but if it’s the low FT3 that causes the symptoms why do I have symptoms now when my FT3 isn’t low?
I believe that high cholesterol isn’t caused by diet and it is only ever the symptom of an underlying condition and the high cholesterol that hashimotos causes isn’t dangerous and doesn’t cause heart attack, stroke, heart disease etc but I’m confused because on the NHS website it states that high cholesterol is the leading cause of heart disease and that you can lower it through diet but if diet doesn’t cause it then how is that possible? For example my sister is very overweight and doesn’t lead a healthy lifestyle and her cholesterol is high but she has no underlying health conditions so surely it can only be diet/lifestyle that has caused hers?
I hope all of that makes sense and any help clarifying would be much appreciated x
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Amyflood246
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I have just read through your previous post and all the replies. I believe the answers to most of your questions here are within the replies in that thread, it might be worth you reading through it again, it's a very long thread and probably needs time to go through slowly and be clear about the answers.
I wont repeat anything that was previously said but this struck me:
as you can see in the picture my FT3 level is still really good but if it’s the low FT3 that causes the symptoms why do I have symptoms now when my FT3 isn’t low?
You have high TSH and low FT4, raised antibodies, all of which suggests autoimmune hypothyroidism and your body is struggling to produce enough thyroid hormone naturally. As T3 is the life giving hormone, and every cell in our bodies need T3, your body is doing it's best to produce enough of this for as long as it can so at the moment despite low FT4 your body is striving to produce a good amount of T3.
Also, to illustrate that low FT4 can cause symptoms, I have been diagnosed and treated for hypothyroidism since 1975. For the last 8 years I have been on combination thyroid hormone replacement, ie Levo plus T3. We are all individual where we need our individual hormones when on combo treatment and to be well I need both FT4 and FT3 around 60-70% through range. If my FT4 reduces for whatever reason and goes down to around 40% through range I would be unwell, if it goes lower, say 30%, then that could see me almost bedbound even if my FT3 is still at my normal good level of 60-70%. We are all different and there is no one size fits all.
Thank you I understand what you are saying. I think I am just getting myself in a panic because I have really bad health anxiety and always think I’m dying.
I know that I have autoimmune hypothyroidism but how do I know for certain it’s hashimotos and not the silent thyroiditis because online it says that can cause raised TPO antibodies x
T3 is the active thyroid hormone that every cell in the human body needs. About 20% of the body's total T3 production is produced by the thyroid. The other 80% is produced in other tissues of the body directly where it is needed, e.g. the liver, the heart, the muscles, by converting T4 to T3.
T4 is a storage hormone that is the ingredient required for producing T3 in various tissues of the body, not just the thyroid, and this production of T3 happens as and when required.
A healthy body has lots more T4 than T3.
When people are in the early stages of developing hypothyroidism the body starts to prioritise its production of T3 (the active hormone) over the production of T4 (the storage hormone). Eventually not enough T4 is produced and T3 production will reduce too because the ingredient required for producing it is no longer available in high enough quantities.
It is when T4 and T3 production reduces that the TSH will start to rise to try and stimulate the thyroid to produce more thyroid hormones.
TSH is produced by the pituitary. The pituitary is stimulated to produce TSH by the hypothalamus which produces a hormone called TRH - Thyrotropin Releasing Hormone. Thyrotropin is another name for TSH.
Some people have pituitary or hypothalamus problems and can't produce large amounts of TSH, which makes getting a hypothyroidism diagnosis very difficult since doctors usually only ever test TSH.
Thank you that’s a good explanation. How do I find out if it’s a problem with the pituitary gland or hypothalamus causing mine? Or is that not the case with me because of the raised TPO antibodies?
Also my T4 and T3 seemed to have actually rises slightly since my last test. Last time i was checked my TSH was good at 1.6 but my T4 and T3 were slightly lower which is strange x
I don't think your current results suggest that you have a problem with your pituitary or hypothalamus. Sorry, but you might have to get worse before it really shows itself definitively in your results.
In the meantime, to help yourself to get as well as possible you should get some of the basic nutrients and minerals tested and optimise any which are at low levels. For example, if you have low iron and/or ferritin (iron stores) you'll feel much better if you improve them.
The basic things we suggest testing are :
Ferritin
Vitamin B12
Folate
Vitamin D
Some people extend that to include an iron panel which tests serum iron and ferritin plus some other parameters. Also zinc/copper, and selenium.
After doing at least the first four of those you still don't feel better then it is time to revisit your thyroid hormones again. Also, cortisol levels often get deranged with thyroid disease. But don't worry about cortisol yet.
Another thing to consider is whether or not your doctor has given you a Full Blood Count (FBC). This includes Haemoglobin. If this is low it means you are anaemic. You can be anaemic with or without low levels of iron and/or ferritin and/or Vitamin B12 and/or Folate. But if any of the levels are low you will feel better if you optimise them.
If your FBC has low or high levels of MCV (Mean Cell Volume) i.e. your red blood cells are, on average, small or large, this suggests that you have low iron/ferritin (small red blood cells) or low B12/folate ( large red blood cells)., but if you have low levels of multiple nutrients then MCV is not very reliable and you should measure nutrients directly.
thank you, I am b12 deficient and currently on every other day injections, was folate deficient so on 5mg folic acid… Iron is slightly low so I’m on a course of iron tablets and vitamin D was deficient but I’ve managed to get it to about 90 but still working on that and taking k2 and magnesium to support. Full blood count did show macrocytic anaemia but seems to be improving since the b12 injections and folate… zinc is right at the top end of the range, copper is middle and I’m slightly deficient in selenium x
don’t underestimate just how bad being deficient in b12 and folate can make you feel and the broad range of symptoms - probably worse than having under active thyroid! I’m interested in your comments about cholesterol- any sources for that info? My cholesterol is sky high despite thyroid being apparently well treated. Thx
oh honestly I know how dreadful b12 deficiency can make you feel some days I feel like I’m dying 😩 but I have been injecting every other day now since middle of December apart from taking a 2 month break to get iron up and have only seen little improvements so far that’s why I’m wondering whether some of my symptoms are due to thyroid! It was a lady on here who told me about cholesterol, her name is greygoose I don’t know how to tag you in the comments x
I believe that high cholesterol isn’t caused by diet and it is only ever the symptom of an underlying condition and the high cholesterol that hashimotos causes isn’t dangerous and doesn’t cause heart attack, stroke, heart disease etc
Cholesterol doesn't cause heart attacks or strokes full stop. It doesn't block the arteries. I is there, within the arteries to heal damage done by inflammation. And it's that inflammation that causes the heart attack, not the cholesterol. That's why you're more likely to have a heart attack taking statins, which lowers cholesterol, because the cholesterol won't be there to heal the damaged arteries.
but I’m confused because on the NHS website it states that high cholesterol is the leading cause of heart disease and that you can lower it through diet but if diet doesn’t cause it then how is that possible?
Well, who said that what is said on the NHS website is true? Do you think that they know everything? It's in Big Pharma's interest that everyone believes that because they want to sell their statins. There's a lot of faulty science around, and a lot of down-right lies.
For example my sister is very overweight and doesn’t lead a healthy lifestyle and her cholesterol is high but she has no underlying health conditions so surely it can only be diet/lifestyle that has caused hers?
How does she know she hasn't got any underlying health conditions? Given how difficult it is to get a diagnosis for anything these days, she could have multiple problems. Why is she very over-weight? That could be a symptom of something just like the high cholesterol? I really don't think I would use her as an example of anything. Unless, of course, she has reduced her cholesterol purely by changing her lifestyle?
Thank you. Please don’t think I was disputing anything that you have said because I honestly wasn’t I am just trying to understand it. I have come to realise through having the b12 deficiency that I much more trust people who are living with these conditions over any medical expert! I have horrible brain fog and I find it so hard to take in information and understand it.
So in a nutshell…
1. high cholesterol isn’t caused by lifestyle choices it’s always a symptom of an underlying condition
2. High cholesterol doesn’t cause damage to your arteries it heals damage that is caused by inflammation and it’s that inflammation that causes the heart problems
3. Cholesterol cannot be lowered through diet, only through treating the underlying condition
Is that correct? It’s number 3 that I’m unsure of so a good lifestyle will not lower cholesterol?
Also in our cases where hypothyroidism is concerned is it the damage from the condition which has inflamed the arteries and causes the high cholesterol? X
It's correct to the best of my knowledge. But, of course, there may be more to it than I have so far found out.
Also in our cases where hypothyroidism is concerned is it the damage from the condition which has inflamed the arteries and causes the high cholesterol?
Having Hashi's - and probably being hypo, directly or indirectly - can cause inflammation, yes. But, inflammation does not cause high cholesterol. Having low levels of T3 causes high cholesterol.
ok so hypothyroidism doesn’t cause inflammation in the arteries? So it won’t lead to heart disease etc?
So say you had coronary heart disease, this isn’t caused by the high cholesterol building up it is caused by something that has caused inflammation to the arteries?
What would cause the inflammation in the arteries in the first place though and then where would the high cholesterol come in to it in this case? X
No, that's not what I said. I said it can cause inflammation. And being hypo is one of the leading causes of heart attacks. There's a book written by Dr Broda Barnes - Solved: The Riddle of Heart Attacks - where he explains all that.
What would cause the inflammation in the arteries in the first place though and then where would the high cholesterol come in to it in this case?
Lot's of things can cause inflammation. Like many other diseases, and poor life-style choices, for example, a diet of mainly processed foods. Because processed foods contain things like highly processed seed oil, artificial sweeteners and soya derivatives which are all very bad for you.
But, you don't have to have high levels of cholesterol to find it covering the damaged arteries because that's one of its jobs. It's nature's sticking plaster. Even with normal levels of cholesterol that is what it will do. The protein carriers, hdl and ldl, carry it round in the blood and deposit it where its needed. And it's needed all over the body for growth and repair.
High cholesterol just happens to be a hypo symptom, just like inflammation. But one doesn't cause the other.
Please note that statins were first introduced to a global audience mainly during the 1990s. Before this happened, in the UK the reference range for "total cholesterol" had an upper limit of 7.5. Then it got changed to 5.0 for the non-diabetic. (It's lower still for diabetics.) I have a copy of my GP records and found the wider range in some of my own test results.
By changing the upper limit for total cholesterol the way they did they immediately made it so that huge numbers of people who had previously had healthy levels of cholesterol suddenly had high cholesterol and could be prescribed statins. I can't remember the percentage of people this happened to, but I know it was a lot.
You might find this link of interest too. Notice what happens to overall mortality in women as cholesterol rises.
Goodness - many thanks for this humanbean ! The evidence for women is SO clear cut, it's amazing there's even a debate about it (of course, it's not amazing: money talks $$$$$$$).
'silent painless thyroiditis' is really just another term describing the same group /type of thyroid disease ...... 'post partum thyroiditis' is also in the same group.
ie.
~some degree of lymphocytic thyroid damage :
~ sometimes with no apparent trigger,
~ but often triggered by virus or pregnancy ,
~ often but not always with evidence autoimmune component eg raised TPOab ,
~ which can present with an initial transient hyper phase, followed by a hypo phase,
~ which if TPOab are raised is more likely to become permanent.
the 'silent ' bit is to differentiate it from 'painful ' thyroiditis , eg De- Quervains / Sub Acute thyroiditis.. where the thyroid hurts... these forms can sometimes become permanent too , (and are also more likely to become permanent if there are raised TPOab)
have a look through these chapters in this document : msdmanuals.com/en-gb/profes... professional/endocrine-and-metabolic-disorders/thyroid-disorders/overview-of-thyroid-function
sub acute thyroiditis
silent lymphocytic thyroiditis
hashimoto's thyroiditis
it has fairly good technical explanations of the different forms ... but you do need to keep in mind the definitions of thyroid disease have always been very blurred , and in practice there is a heck of a lot of crossover.
in reality the only way to know the answer to "is it permanent ?" is to wait and see if it gets better and thyroid functions adequately on it's own again without any replacement thyroid hormone . .. or if it can't.
if thyroid hormone has already been started during the hypothyroid phase of De quervains (Sub acute) or Silent thyroiditis , or Post Partum Thyroiditis , then the only way to know for sure if they are permanent is to see what happens if thyroid hormone is reduced and then withdrawn for a few months .
my FT3 level is still really good but if it’s the low FT3 that causes the symptoms why do I have symptoms now when my FT3 isn’t low?
Very Good Question AmyFlood ... and i don't think anyone has ever given a solid answer to it.
My twopenneth ...... an individuals thyroid hormone balance is a VERY finely tuned system when we are healthy , with only very small individual variations in our usual T4 /T3 /TSH levels. (no where near as large as the ref ranges) ... so if their system has started to struggle enough that their TSH is persistently higher than usual and their fT4 is persistently lower than usual , then i'd be more surprised if they COULDN'T feel the difference and begin to feel some degree of symptoms.
i know i was on my knees with TSH only 5.7/6.8 at diagnosis and my T4 was in range (no idea what fT3 was) ,
for me there was no doubt about the autoimmune aspect , and the "is it permanent ? should i stay on levo ?" question had already been answered by GP not thinking to test thyroid for 4 yrs ,,, so , started following a pregnancy/ initial mild hyper phase /followed by increasing hypo symptoms which worsened over 4 yrs/ Tested and diagnosed TSH 6.8 /TPOab >3000
So for me it's "case closed" ~ mine is "permanent autoimmune hypo without a goitre" therefore not technically hashimoto's as strictly speaking it's only classed as "Hashimoto's Thyroiditis" if there is an enlarged thyroid (goitre).
.... another bloke called William Miller Ord gave his name to a form that didn't have a goitre.. so technically those of us with autoimmune hypo but without swollen thyroids don't have Hashimoto's , we have Ords ... but everyone has forgotten about poor old Mr Ord ..... he's here if anyone want's to meet him: healthunlocked.com/thyroidu... (meet-dr-hakaru-hashimoto......)
Hi! So what you are saying is that there is no way to tell if it’s hashimotos or silent thyroiditis and I just have to wait and see if my thyroid normalises?
Say it’s silent thyroiditis and it doesn’t get better and it I need lifelong treatment does that mean it’s turned in to hashimotos if the TPO antibodies are still there or does it not work like that? X
post partum thyroiditis ~ may or may not have positive TPOab ~ in about 50 % of cases , it becomes permanent ~more likely to be permanent if the TPOab are positive .
silent thyroiditis ~ basically the same diagnosis as post partum thyroiditis, just happening at another time , ie. not within a year of a pregnancy ~ outcome same as above ie. may or may not have positive TPOab ~may or may not become permanent , but more likely to do so if TPOab are positive .
it's more or less the same with De Quervains (sub acute (painful) thyroidiitis) ~ usually happens after an infection ~ may or may not have TPOab ~ may or may not become permanent.
if you don't have a goitre then technically it's incorrect to call it Hashimoto's . you would call that Autoimmune Hypothyroidism .
doesn't really make much difference what you call it though .....
.......If it has positive antibodies, then it's definitely 'a form of autoimmune hypothyroidism'
..... it might get bad enough that you need to take thyroid hormones quite soon , or it might take some years before they are needed , or it might never get bad enough for you to need them ,....
.... but regardless of whether it's Silent , or Post Partum , or something else .... having high TPOab 'now' means it's very likely that some lymphocyte damage is going to continue to happen in your thyroid , and as it does, your thyroid will be less able to make enough T4/T3 for your needs over time.
.....as for knowing for sure whether yours will become permanent ... you are correct ....the only way for anyone to know , is to wait and see what happens.
"permanence/ or not" becomes harder to asses once a decision to start taking replacement thyroid hormone has been made ... because the GP then has to decide to take the patient off again at some point to see if the thyroid is now able to function adequately by itself.
....... when they know TPOab are positive , they wouldn't usually bother trying to take someone off. because ongoing damage is likely to be occurring .
... autoimmune thyroid damage can be seen on ultrasound scan if it's bad enough .. so that can be another way to decide it if was worthwhile trying to take someone off if the decision wasn't clear cut ...... ie. no point trying to take someone off if they can clearly see lots of damaged thyroid tissue .
thank you I am going to read up on it all, it’s just like everyone has said I don’t think I will be able to get my GP to take me seriously with my current levels x
Amy you are probably right re your current thyroid levels and GP. A few years back they would've done but not now. What you can focus on though is ensuring the cofactors are all optimum which I can see you are working on. You say you are on alternate days of B12 jabs. Are you taking low basic B complex as well? The B vitamins all work together so it's a good idea with b12 injection to take one.Low B12 causes multiple symptoms and also can affect us mentally until its stabilised so it might be your anxiety is heightened at the moment because of this. It affected my memory and emotions I remember. And gave me physical symptoms too. How long have you been on B12 jabs?
hi! Yes I am taking a b-complex with my injections. I have so many symptoms and I feel terrible but I don’t know which illness is causing which symptoms now! I have been injecting since mid December x
Hi Amy. Have you been on B12d.org website? They also have an online support group. Dr Chandry wrote a book you can download for free from there.Recovering from. B12 deficiency takes years. I've been injecting for four years now. I am much better but I still need twice daily jabs. Xx
Yes Hydrox twice daily. I started with alternate but felt I went backwards on the days I didn't inject so increased to daily... that helped but noticed symptoms increased to wards end of day so went to morning & evening.... then I started to improve. B12 damage takes a long time to heal so don't give up.There's actually quite a lot of people with PA it or b12 deficiency who find they need to inject far more frequently than the so called NHS guidelines.... It's a black hole like thyroid treatment.... Sigh.
B12d. Org also do an online symptom checker that gives advice. It will keep a record so you can see if you are improving in time.
Some hypo symptoms are different such as very dry skin, constipation but they do overlap. All you can do is bottom the b12 with treatment like you are then look at your blood tests for thyroid, folate, ferritin
& vit D. And optimise those too.
That should unravel things somewhat.
Going GF also really helped me. I'm actually gluten intolerant, suspected coeliacs doc said. Some people find dairy free does it for them... Not me.
I do have the very dry skin but always just put that down to b12 deficiency! Is it definitely safe to inject more frequently than every other day? I might try going to once a day and see if that makes any difference… I have been injecting since mid December but took a 2 month break to get my iron up so it’s like 5 months of every other day injections. So far I have noticed the cuts in the corners of my mouth have healed and my bladder issues are starting to stabilise!! All of my other symptoms aren’t budging though-
Muscle weakness, muscle twitches, sore tongue, body feeling heavy like lead, breathlessness, tachycardia, forgetfulness, brain fog, irritability, involuntary movements, muscle cramps, excessive sweating, pins and needles when only slight pressure is applied, watery eyes, shaking internally, general feeling of restlessness throughout body
I think that is all of them. When I first started I was only doing subcut but about a month ago I switched to intramuscular so I hope that helps too xx
B12 is water soluble so your kidneys excrete out what you don't need. There is no toxic level known to have occurred. People with B12 deficiency inject at different rates as everyone is different. Some people are fine on the standard protocol of 3 months, some are OK on 2. months, others weekly, alerternate days, daily and some inject several times per day. For you though you have two conditions going off. So you can't run on symptoms alone as a guide because some are due to your underactive thyroid as well. It's important to remember that. Generally though you can regard neurological symptoms to be likely due to your B12 deficiency. So tingling, numbness, poor coordination, cracked mouth, red sore tongue. Weakness in legs can be thyroid as well as b12 deficiency.So in your case it's also to get your thyroid optimally treated AND keep on top of you b12 jabs.
It's not easy but doable. Keep a daily record of what you are taking, your signs symptoms, blood test results etc.... It will help to keep track.
Afraid so.... Lol....but meanwhile you carry on getting the rest in place and addressed too. Plenty of support on here.... We've all been there sadly.... X
I highly recommend your checking out Dr. Westin Childs website at restartmed.com/ . He is the best I've found so far. I am a follower of Isabella Wentz also,
I reside in the US and have suffering this condition for far too long. The long and short of it is that everybody is different. Our diagnosis and treatment is unregulated and treated differently by the doctor seen and country in which we live. We are an experiment in our medical community, We really need to be our own advocate to inspire, encourage and help each other and our providers.
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