Just wanted to thank everyone for the amazing advice on this group. As I explained before I've had vertigo/dizziness and lots of other symptoms for nearly 2 years now. With loads of advice from this page with regards getting private blood tests done, pushing my Gp even though they said I do not have a thyroid condition and I do not have low Ferritin. Guess what I have Hashimoto's and very low Ferritin.
So after paying to go private to see thyroid specilist. I've been diagnose with Hashimoto's.
We've done lots of readying but wanted to ask a few questions and if anyone can give me advice.
1. Do you have to medicate with Hashimoto's, I've been recommended 2 differnt medications and unsure which to take.
2. Will I have to be on these forever now?
Can i ever come off them.
3. Do you start to feel better on the medication?
4. Is there anything I need to know about Hashimoto's as very new to this diagnosis.
Thanks so much and thanks for all the advice in getting me to this point. Xx
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Tinkerbell_84
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Only if your thyroid isn't able to produce sufficient hormones. Having a positive thyroid antibody test, indicates a potential for developing hypothyroidism. It doesn't necessarily mean you need medication right now.
'I've been recommended 2 differnt medications'
Please say what medications this thyroid specialist has recommended?
1. I don't like talking about 'medication'. The word implies a substance - drug - that is going to cure something. Levo and Armour are thyroid hormone replacement: levo is T4 and Armour is T4 + T3 (made from dessicated pig thyroid). They replace the hormones your thyroid can no-longer make enough of. So, once your immune system has destroyed so much of your thyroid that it can no-longer function correctly, yes, you do need to take something because you cannot live without thyroid hormone.
2. Yes, you will be on them forever, because thyroids cannot regenerate. Once it is dead it is dead, and you have to get your thyroid hormone from somewhere else - i.e. from a pill.
3. You should, yes, once you're taking enough. But with hormones - all hormones - you have to start with a low dose and increase slowly, giving the body time to adjust after each increase. With levo that means starting on 50 mcg and increase by a maximum of 25 mcg every six to eight weeks. But improvement will not happen in a straight line. There will be ups and downs, good days and bad days. But once you hit your sweet-spot, most symptoms should disappear and you should feel good.
4. Oh there is a lot you need to know about Hashi's! Because I doubt your doctors know much at all. So, here's a very basic run-down of how it works:
- Hashi's is an autoimmune disease where your immune system attacks and slowly destroys your thyroid, mistaking it for the enemy.
- During each attack, the dying cells will leak their stock of thyroid hormone into the blood causing FT4/3 levels to suddenly rise, and the TSH therefore drops.
- Should your doctor happen to give you a blood test during these 'hyper' swings, he won't have a clue what's going on, and will probably accuse you of 'abusing' your thyroid hormone replacement, and he'll slash your dose.
- Therefore, if you suspect a 'hyper' swing, due to symptoms or a private blood test, keep it to yourself. It's usually best to just stop your hormone replacement during that time, until you feel hypo again. But don't let your doctor reduce your dose because once a doctor has reduced a dose it's the devil's own job to get him to raise it again.
- The excess hormone will eventually be used up/excreted and you will become hypo again. Although you might have a euthyroid period on the way down, that could last for some time. Do not let it fool you! Your Hashi's has not been 'cured', or just gone away. It doesn't do that sort of thing. Eventually you will become hypo again.
- These swings are totally unpredictable and uncontrolable. No-one can tell you how often you will have them or how long they will last. We just have to accept them and ride them out.
There are probably a lot of other things I should tell you but can't think of them off the top of my head. Please ask questions if you have any.
This is interesting greygoose how long would you say stopping the levothyroxine/hormone replacement is safe? Days, weeks? Or is it a case of how longs a piece of string? What if your hyper/hypo symptoms are the same? I guess paying for frequent thyroid bloods during this stage is the only way to know for sure what's going on. Only asking as I'm pretty sure this is what I'm currently experiencing. Is it safe to stop and start levothyroxine whenever these hyper swings strike?
All this talk about being 'safe'. What exactly is meant by it? Stopping your levo for a few days/weeks is a lot safer than crossing the road without looking, or driving your car into a brick wall, or trying to cuddle a hungry lion. Stopping your levo whilst having excess thyroid hormone in the blood is safer than continuing to take it.
For how long? As you said, how long is a piece of string? It would be different for everyone. I once stopped my T3 mono-therapy for six months, and it wasn't even due to a 'hyper' swing, because I'm long past those. It's not something I would recommend other people do, but I'm still here to tell the tale, none the worse for wear. The only symptom that made me start it again was weight-gain.
What if your hyper/hypo symptoms are the same?
They wouldn't be. Not at the level we're talking about. If they were, how would you know you were having a 'hyper' swing in the first place?
I guess paying for frequent thyroid bloods during this stage is the only way to know for sure what's going on.
Well, you could. But if you need to do that then your swing isn't really bad enough to bother about.
Alternatively, you could learn to listen to your body, and understand what it's telling you. That's the most important skill you need to develop.
Thanks for the reply, much appreciated. I've started keeping a symptoms diary to try and learn what my body is telling me. I don't seem to fit the usual hypo/hyper symptoms for example when I'm hypo my heart rate tends to be higher rather than lower. And in terms of weight, I've always been on the lower side of normal bmi. I started thinking I may be having a hyper swing due to a few unusual symptoms like pins and needles in my hands, feeling hotter than usual especially in bed, and especially my feet and changes to my periods. Just random things like that which then seemed to resolve. Could be perimenopause symptoms perhaps?
Then my bloods suggested either a hyper swing or slight over replacement, but I'd have a hard time pinpointing anything in particular.
I'm experimenting with doses at the moment so will be keeping a track of bloods and symptoms to try and identify patterns.
I guess I need to accept that this is the nature of the beast at the moment whilst still at this stage of the hashimotos. Does it get easier after the thyroid has burned itself out completely? More stable perhaps?
Have you had your B12 tested recently? Low B12 is often the cause of pins and needles.
Once the thyroid is dead, you will become more stable, and can then find the right dose of thyroid hormone replacement for you. Until then, I think we just have to accept that levels are going to jump around - maybe just slightly, maybe quite violently - but it does make dosing difficult. We just have to do the best we can.
Good idea to start a symptoms dairy. But we have to understand that, as T3 is needed by every single cell in your body to function correctly, symptoms can occur anywhere and everywhere, and every hypo has their own personal symptom list. There are one or two classic symptoms, like weight-gain or loss, depression, feeling cold or hot and hair-loss, but not every hypo has those. And it's probably for these reasons that doctors aren't interested in symptoms - or even know what they might be. So, it's an individual journey for all of us, understanding how it affects us as individuals. And keeping a diary is a good start.
Makes sense, I feel better accepting that it is individual and that highs and lows and dose changes are all to be expected at this stage. I think I was a bit naive in thinking that it would just be a case of take a consistent dose of levothyroxine and that would be that. B12 seems fine, 146 (37.5-188) so think it was probably hormones either a thyroid thing or a perimenopause thing.
That's what doctors encourage you to believe. Whether or not they truly believe it themselves, I've not worked out. If they do then it just goes to show how little they listen to their patients, and how incapable they are of learning by experience!
More likely to be thyroid than perimenopause, I think.
Just wanted to add to GG’s words here which I absolutely agree with Chasing-rainbows
For example, even with my relative short hypothyroid journey so far (just over a year since diagnosis) I have had thyroid levels which are over range 2/3 times already and may be as a result of ‘hashi swing’ for some of those times instead of purely over replaced thyroid hormone. Each time I have preferred to come off the levothyroxine and resume when both levels and symptoms dictate as far as possible. More recently, I have stopped taking my Levothyroxine for almost 3 months now. Again, like GG, this isn’t something I recommend any one do lightly as while some people are OK to stop thyroid replacement abruptly others are not. You can only but try and see. The point it, yes, it can be perfectly safe to stop taking thyroid replacement. The real danger for many is that their prescriber may not represcribe thyroid replacement once levels become too high, so many try and manage swings without involving GP (I am not one of these people….yet). Most prescribers would just lower dose rather than stop treatment altogether but it is possible.
What I will also share is that in my experience my hypothyroid and over range thyroid levels symptoms are mostly the same, but there are a few distinct ones I have learned to watch out for. So learning your distinct symptoms in either under or over range stages including overlaps will be very helpful in your journey.
With regards to blood testing frequency, during my current time off from levothyroxine I am testing every 1-2 months. For me, this is sufficient.
It's funny you say that as I have been worried about 'medicating ' but my husband keeps saying your supplementing it and giving it what it needs. As I do have health anxiety so this is a really hard thing for me to take hormone replacement as I do have reactions to medications when I was trying differnt ones for vertigo so this worries me.
I am leaning towards the Amour as the specilist said it helps all 5 aspects of they thyroid so I thought this may be a good idea. But I did see this is not regulated which concerns me a bit. I just wonder what happens if I either don't get on with it or I do get on with it and I need a higher dose and it gets alot more . I'm worried as at the moment I'm.not on medication and worry if I struggle can I ever stop taking it. As I all my results were boarderline so didn't think I was that bad by my blood results.
Ypubsaid each attack this is where I get confused as currently my tsh is 3.9 and my t4 is 11.2 . Its so much information to taking in so sorry. I don't really underatand it all yet
Can I ask what a hyper swing is lol
I know this sound bad but the cost already has cost me a fortune will I have to keep paying. I have got private medical cover would this condition qualify?
Also can I ask what euthyroid period means 🤔.
Can I ask my ferritin is 13 and Ferritin saturation 22% range 20-50. My ferritin was down as low as 8 after receiving all my blood results from the last 2years can this make all my symptoms really bad, if I go this up to 80-90 would this not make me feel better as I did read that low iron needs to be fixed before considering thyroid hormone replace as everything needs to be optimal? And that low iron can make thyroid bad if its not optimal?
Thanks so much I hope you don't think I'm stupid it is so much to take it and want all the info I can.
but my husband keeps saying your supplementing it and giving it what it needs. As I do have health anxiety so this is a really hard thing for me to take hormone replacement as I do have reactions to medications when I was trying differnt ones for vertigo so this worries me.
Giving what what it needs? You're not giving your thyroid anything, if that's what he means. Your thyroid is not out of the loop, no-longer a consideration. You are giving your body what it needs: thyroid hormone.
Thyroid hormone replacement is not a medication, and you can hardly compare it to a treatment for vertigo, it's not at all the same thing.
I am leaning towards the Amour as the specilist said it helps all 5 aspects of they thyroid so I thought this may be a good idea. But I did see this is not regulated which concerns me a bit. I just wonder what happens if I either don't get on with it or I do get on with it and I need a higher dose and it gets alot more .
What did he mean 'all 5 aspects of the thyroid'? What aspects is he talking about?
And of course it's regulated. That's just a dirty rumour probably spread by Big Pharma so that they can sell more of their synthetic hormones. Every stage of it's manufacture is tightly controlled, so have no fears on that score!
If you don't get on with it - and not everybody does - you just stop taking it and try something else.
I expect you will need a higher dose than the one you start on, that's only natural. With hormones you have to start low and increase slowly to give the body time to adapt. And, in any case, no-one can possibly know how much you're going to end up needing, it's a very personnel thing. You just keep increasing slowly until you reach your sweet spot. And if you need a lot, you need a lot, that's all there is too it.
I'm worried as at the moment I'm.not on medication and worry if I struggle can I ever stop taking it. As I all my results were boarderline so didn't think I was that bad by my blood results.
Oh my goodness! You are a worry-wart, aren't you! Most of it unnecessary.
Of course you can stop taking it - as long as you have something else to take it's place. You cannot live without thyroid hormone, and if your thyroid cannot make it then you have to take it in a pill.
As for being 'borderline', don't get taken in by that malarky! It's like being pregnant, either you are or you aren't. You can't be borderline pregnant, can you. That is just a medical ruse to diagnose as few people as possible, because if there's one thing doctors hate it's diagnosing and treating hypo. Because they just don't know enough about it to feel comfortable treating it. But I can't comment on your blood test results because you haven't posted them.
Ypubsaid each attack this is where I get confused as currently my tsh is 3.9 and my t4 is 11.2 . Its so much information to taking in so sorry. I don't really underatand it all yet
Yes, I said 'each attack', why does that confuse you? If your TSH is 3.9 you aren't having one at the moment. At the moment you are hypo. Can't comment on the FT4 because you haven't given the range - we always need the ranges.
Of course it's going to take you a while to sort it all out in your head. None of us are born knowing all this. We have to learn as we go along. But you have this forum to ask any questions you wish.
Can I ask what a hyper swing is lol
I explained that above, it's where the dying cells in the thyroid, during an immune system attack, deposit their stock of thyroid hormone into the blood causing FT4/3 levels to rise sharply to 'hyper' levels.
I know this sound bad but the cost already has cost me a fortune will I have to keep paying. I have got private medical cover would this condition qualify?
No, it doesn't sound bad, it's a legitimate consideration. But I can't answer your question because I have absolutely no idea. I don't live in the UK.
Also can I ask what euthyroid period means
It means a certain length of time when you are neither hypo nor hyper - normal, I suppose, although I don't like the word - and don't need to take your thyroid hormone replacement for a while.
As for the iron, your ferritin is low because you are hypo, not the other way round. Most hypos have low stomach acid, so therefore have difficulty digesting food and absorbing nutrients. But yes, it will cause all sorts of symptoms on top of your hypo symptoms. You do need to optimise all your nutrients, but optimising ferritin can take a long, long time, so it's not practical to say that you shouldn't start thyroid hormone replacement until it is optimal. You just have to try and optimise it whilst at the same time optimising your thyroid hormones.
What about the other nutrients: vit D, vit B12, folate? Have they been tested?
Specilistvsaid there was 5 types of hormone in thyroid and the armour replace or gives you everything you can have or produce any more . To be honest the appointment wasn't long enough as my self and my husband have so many questions.
Oh thanks so much for explaing that about armour.
Yes definitely can relate to the gp not wanting ro diagnosis hypo. Most months I have had to request they re do my bloods every 3 months so I can keep an eye on it. Its difficult as I have been diagnosis with Vestibular and alot of the symptoms I am having all fit with that so it's so hard.
So with regards you said I'm currently not having an attack as I am 3.9 and I am hypo so what does this mean . So would I be getting symptoms or not if this is the case as the be honest I never not have a rest in symptoms. That's what I don't understand do the attacks cause symptoms or not lol.so much to get my head around.
Serum B12 440 range 180-900.
VIT D 115
Full iron Panel
Ferritin 13
Serum iron level 17 10-30
Serum transferrin 3 2-4
Transferrin saturation index 22.6 20.0-50.0
I have also attached my throid results since August last year.
June 2024 Tsh 3.9 (0.55-4.78)
t4 11.2 (11.50-22.70)
T3 4.4 (3.50- 6.50)
March 2024 Tsh 2.46 (0.55-4.78)
T4 11.6 (11.50-22.70)
Jan 2024 TSH 3.81 (0.55-4.78)
T4 10.5 (11.50- 22.70)
Dec only had TSH 2.87
October 2023 only TSH 2.66
August TSH 2.79
T4 11.1 SAME RANGE AS ABOVE
CORTISOL 500NMOL <450 RANGE
I had 2 anti body's tests TPO
1st results 28.5 private bloods
2nd result 1 week later 1260 NHS
Can these anti body fluctuate by this much. The 1st week I had no choclate the days before the 2nd reading with hight antibodies I had choclate the night before?
How do you lower your cortisol I am a worrier could this be a reason why this is higher than normal . I've always struggled with stress.
Specilistvsaid there was 5 types of hormone in thyroid and the armour replace or gives you everything you can have or produce any more .
Oh dear. A specialist said that???
Well, let's count them:
- The thyroid makes mainly T4, the storage hormone
- It also makes a little T3, and it converts a little T4 to T3 within the gland. But the bulk of T3 comes from conversion in various other parts of the body
- T3 is converted to T2, mainly in the body. If the thyroid makes any at all, it would be a teeny weeny miniscule amount
- T2 is converted to T1, mainly in the body. If the thyroid makes any at all it would be even less that T2
- and the thyroid makes calcitonin, which is to do with calcium control in the body
If the thyroids used to make NDT did contain any T2 and T1 when the animal was alive, it would be unlikely to survive the manufacturing process of pill-making. Calcitonin is also unlikely to survive. So, it is very unlikely that NDT does contain them all, and the quantities would be so small as to be negligable, anyway. If they exist, they would be unquantifyable which is why they do not appear on the label as being part of the ingredients, like T4 and T3. So, whilst having T4 and T3 is often desirable, I think you can forget about the other three.
But it's really not true to say that you can't produce T2 and T1 anymore, because they are produced by conversion from T3.
So with regards you said I'm currently not having an attack as I am 3.9 and I am hypo so what does this mean .
You are not 3.9, your TSH is 3.9. Which is high - should be around 1. High TSH means you are hypo. If you are hypo, it means that your immune system is not attacking your thyroid at the moment, because if it were, your TSH would be low, due to the extra thyroid hormone being deposited in your blood.
So would I be getting symptoms or not if this is the case as the be honest I never not have a rest in symptoms.
Would you be getting symptoms with a TSH of 3.9? Probably, yes. But it wouldn't be the TSH causing them because TSH does not cause symptoms. It is the thyroid hormone T3 that causes symptoms when it is too high or too low. But with a TSH of over 3, you can take it that your FT3 is low - the higher the TSH, the lower the thyroid hormones, T4 and T3.
That's what I don't understand do the attacks cause symptoms or not lol.so much to get my head around.
The attacks themselves done cause symptoms, you can't feel them - although your thyroid might become a little swollen and sore - it is the excess T3 that causes hyper-like symptoms.
Serum B12 440 range 180-900.
That's a little low. It should be over 550.
No folate result?
I'm not very good with iron/ferritin, it's a very complicated subject. I would suggest you repost your iron panel as a separate subject, so that those that know can reply.
CORTISOL 500NMOL <450 RANGE
What time of day was this done? It's not a lot over-range. I wouldn't worry about it, if I were you, but keep an eye on it. At this point you really don't want to go messing around trying to reduce it. It could just come down by itself as you get your thyroid levels sorted.
I had 2 anti body's tests TPO
1st results 28.5 private bloods
2nd result 1 week later 1260 NHS
Can these anti body fluctuate by this much. The 1st week I had no choclate the days before the 2nd reading with hight antibodies I had choclate the night before?
I don't think anybody knows exactly be how much antibodies are capable of fluctuating. But judging by these two results, yes, they can.
TPO antibodies have nothing to do with chocolate, as I said before. But I'm curious to know why you think eating chocolate would affect them???
I find it, umm, interesting that the specialists never seem to mention diiodothyronine (DIT) and monoiodothyronine (MIT).
These are intermediate compounds products in the thyroid as part of the process of making T4 and T3.
(Two molecules of DIT join to make T4; one of DIT plus one of MIT join to make T3.)
I'd be surprised if a living thyroid doesn't have more DIT and MIT than T2 and T1. But it is not the sort of thing that is easy to look up for confirmation.
Almost as if someone, somewhere has confused DIT with T2, and MIT with T1. After all, DIT does have two iodine atoms; MIT does have one iodine atom.
But I really can't imagine any of these specialists falling into such a huge and obvious hole. Surely not. They'd never ever make a mistake like that...
No I was definitely only offered too options. The Levo or Armour. We have got the prescription for Armoyr but we want to do more research our selfs before making such a big decision.
I am very confused by what you said in all honesty. I am very new to this so will take slot of me doing research. ☺️
The thing is my husband and I have done quite alot of reading last few days since finding out. And we have read that low Ferritin level can really effect the working effect of the thyroid. And it does say to get this at optimal levels at around 100 before starting thyroud therapy. It say that if you do this your less likely to get any side effects. And then you can see if its the thyroud making the iron low or the iron making the thyroid not work. The thing is it all started after my Covid booster and my very first period after has been very very heavy ever since so this is why my ferritin I'm guess keeps dropping as I've never had this issues before. And the soecilist did say the booster have now bee proven to effect femal horses and mess with periods.
I just wanted to try every avenue before the thought of taking thyroid therapy for the rest of my life.
My husband think it may be worth retesting my antibodies as the was such a massive fluctuation.
I was not in any way suggesting you would, or even could, be offered MIT or DIT.
It was to suggest one reason that some people claim that Armour contains a significant and usable amount of T2 and T1. That is, a mistaken understanding.
Even if there is some, no-one standardises the quantities so we do not know how much (if any) or how consistent the T2 and T1 content could be.
The thing is my husband and I have done quite alot of reading last few days since finding out. And we have read that low Ferritin level can really effect the working effect of the thyroid. And it does say to get this at optimal levels at around 100 before starting thyroud therapy. It say that if you do this your less likely to get any side effects. And then you can see if its the thyroud making the iron low or the iron making the thyroid not work. The thing is it all started after my Covid booster and my very first period after has been very very heavy ever since so this is why my ferritin I'm guess keeps dropping as I've never had this issues before. And the soecilist did say the booster have now bee proven to effect femal horses and mess with periods.
I just wanted to try every avenue before the thought of taking thyroid therapy for the rest of my life.
My husband think it may be worth retesting my antibodies as the was such a massive fluctuation.
I do not seeing re-testing antibodies as a worthwhile tactic.
If they can go down significantly, well, they can also go up significantly. And we have very little understanding of the rate of change of antibody levels (as detected in tests), nor the factors which actually cause those changes, or how long it takes for a factor to impact on the antibody levels.
And we see people with absolutely confirmed autoimmune thyroid disease (Hashimoto's) who are negative for TPOab. Sometimes they are positive for Thyroglobulin antibodies, but not always.
And also note that while we talk of TPOab and TGab, other antibodies also rise during autoimmune processes. The thing about TPOab and TGab is that they are pretty much uniquely found in autoimmune thyroid disease whereas many other antibodies are found in numerous disorders and do not pin down the issue to autoimmune thyroid disease.
If you actually wait to reach a ferritin of 100 before taking any thyroid hormones, you could make yourself very ill. Some members have spent years and years trying to raise ferritin to 100 (or higher). That would delay treatment - potentially forever.
Further, achieving adequate ferritin seems to be impaired by low thyroid hormone levels.
If someone is wondering if they have a thyroid disorder, and thinking what they can do before diagnosis, then addressing issues like low ferritin is a sensible approach. But not to the extent of deferring thyroid hormone treatment.
Sorry to say this, but I think you've been doing too much reading and not enough understanding. I bet that if you told your doctor you'd read blah blah blah on the internet, his immediate response would be: you can't believe everything you read on the internet. Which is perfectly true. But not in the way he means it! He would mean that everything that disagrees with him is wrong, whereas the opposite is probably true. But you do have to be very careful who you trust. For every 50 articles saying one thing, there are another 50 saying the opposite: all of it theory, none of it proved. The only people who really know about thyroid are those that live with it. So, be very, very careful who you believe, and before doing anything check on here.
Your low ferritin has little to do with your hypothyroidism. You are hypo because your immune system is slowly destroying your thyroid, and now you don't have enough undamaged thyroid tissue to keep you functioning. The low iron is the result of all this, not the cause.
And whilst you do need to raise your ferritin level, delaying starting thyroid hormone replacement to do so would be a huge mistake - I wholeheartedly agree with helvella and said as much above. It can take a long, long time to optimise ferritin, and during that time your whole body will be suffering from lack of thyroid hormone, doing untold damage to organs like your heart and liver.
It never ceases to amaze me how people make such a big deal out of being on thyroid hormone replacement for life. You don't have to be on it for life. You can stop it any time you like. But you would be committing yourself to a slow, miserable death - that is if you didn't end up in a psychiatric hospital first.
In the rare cases where people are mis-diagnosed - and believe me, they are very, very rare because the last thing a doctor wants to do is diagnose hypo! - but in these rare cases, the person has been able to stop the hormone and their thyroid eventually picks up where it left off. But you have not been misdiagnosed because you have high antibodies;
Blood tests don't lie, They might not be 100% accurate all the time but on the whole, they're good enough if you know how to interpret them. And you had a result with very, very high antibodies. That was not a mistake, not to that extent, no. Even if the one before had been a lot lower. That just demonstrates how much they can fluctuate. Even so, that first test was high enough to make Hashi's a distinct possibility. The second one confirmed it. So, what is the point in retesting them? If they come back much lower the third time that does not mean that the second result was wrong. It just means that they've fluctuated again.
You are in denial, I realise that, and clutching at straws. But if you don't start the thyroid hormone replacement now the situation is going to get worse, not better. Sooner or later, you will have to do it, so why not do it now?
Thank you for explaing the process of the thyroid that was very clear and I completely understand now thank you 😊
So you say I'm currently hypo so I'm TSH is 3.9 you said when it gets attacked it goes low what is classed as low as its not dropped lower than 2.46 I think so is this classed as low and hyper. That's the thing I don't understand if this is still not classed as attack then why do I need to take thyroid therapy?
Yes currently taking the oral b12 spray and also taking b complex too.
My folate was 12
Yes regarding Antibodies so the test where I had chocolate the night before. We had read hight level of blood sugar can also effect the thyroid and we just wondered if I had high amounts of sugar the evening before if this might have contributed to the evaluated raise in Antibodies.
Low is below-range to suppressed. So something like 0.5 - 0.001. It doesn't look as if your TSH has ever been that low.
That's the thing I don't understand if this is still not classed as attack then why do I need to take thyroid therapy?
Because you are hypo. Presumably, somewhere in the past, there have been attacks on your thyroid that have damaged your thyroid, leaving you hypo. Therefore you need to take thyroid hormone replacement in order to stay well/alive. You cannot live without thyroid hormones.
The attacks are not constant, they are sporadic. No-one really knows what triggers them, they can just happen out of the blue. But each time they do, a bit more damage is done to the thyroid until it is completely destroyed. Which can take years. But long before that happens, you need thyroid hormone replacement because your damaged thyroid can no-longer make enough hormone to keep you functioning.
We had read hight level of blood sugar can also effect the thyroid and we just wondered if I had high amounts of sugar the evening before if this might have contributed to the evaluated raise in Antibodies.
High levels of blood sugar may affect the thyroid, but the antibodies have no direct connection to the thyroid. They are in the blood, cleaning up your blood. But they are not interested in, nor affected by, sugar. So, no, in no way shape or form did the chocolate contribute to the raised TPO antibodies.
Oh thank you so much you explain everything really clearly. So you say hypo is not my thyroid being attacked. And we don't actually know when it's being attacked.
So how do I know how bad my throid is damaged? If I had an antibody test dome this week and they were back at 25. Would this still mean I need thyroid therapy? As I habe read some people's tpo are high and they takeages to go down so if mine were back at a very low amount what would this indicates.🙈
I really don't think I did say that. I said you are hypo because your thyroid has been attacked at some point, or points, in the past damaging your thyroid so that it can no-longer make enough thyroid hormone to keep you well. Hypothyroidism is the result of the immune system attacks on your thyroid.
And we don't actually know when it's being attacked.
Well, you would know because you would start to develop hyper-like symptoms due to the extra hormone being dumped in your blood. And if you had a blood test at that point, your FT4/3 levels would show very high.
So how do I know how bad my throid is damaged?
Ask your GP for an ultrasound of your thyroid. That would show the damage.
If I had an antibody test dome this week and they were back at 25. Would this still mean I need thyroid therapy?
Of course it would. Thyroid hormone replacement has nothing to do with antibodies. You don't take it because of them and it has no effect on them. You take thyroid hormone replacement because your FT4 and FT3 levels are too low for good health.
As I habe read some people's tpo are high and they takeages to go down so if mine were back at a very low amount what would this indicates.
Nothing whatsoever.
Antibody tests are not about the actual number of antibodies, they are about being positive or negative.
If they are well within the range they are negative and you probably don't have Hashi's.
If they are over the top of the range they are positive and you do absolutely have Hashi's.
The antibodies fluctuate, meaning they go up and down, but whatever their level once you have Hashi's you have it for life. It doesn't go away. Ever.
Which is why once you've had a positive result there is no point in ever testing them again.
Thanks so much there are just so many questions so thanks so much for helping to answer all mine really appreciate ypu taking time out of your day to explain everything to me.
I actually had a ultrasound on my thryoid when I started having all my symptoms and they said my thryoid was all normal just 1 nodule on it . And I didn't need to retest.
Is it worth asking my Dr about having one done again ?
I can't see the point of having another ultrasound. It's not as if your diagnosis is in question. You know you have Hashi's. You know you are hypo. There's not much anyone can add to that.
Try levothyroxine first. You are far more likely to get your GP on board with prescribing that without having to pay privately for it, and the vast majority of people who take it do absolutely fine with it. The ones who don’t tend to find their way to forums like this one, which can give a rather skewed view of effectiveness.
Hello Tinkerbell_84, When I was reading your symptoms in your earlier post of "pins and needles, feeling hotter than usual especially in bed, and especially my feet" I too was thinking, as greygoose suggested to you, that these symptoms could be B12 deficiency.
Autoimmune issues often involve different parts of the body and a number of people have both thyroid and B12 deficiency problems. I would arrange a B12 blood test, if I were you. I would also suggest you post this test result on the Pernicious Anaemia section of Health Unblocked, along with your symptoms for advice.
Your GP may well give you their opinion but as with thyroid problems you cannot beat advice from someone who has already started their journey to better health with similar difficulties as yourself. The excellent support on these two Health Unblocked websites is worth so much. You can make a start on improving your thyroid and follow this up with addressing any B12 deficiency issues as soon as you have your blood test results. Best wishes
Hi Yorkshire girl. Ooo I'm not sure where that is . As I definitely haven't been feeling hot in bed as I am always cold hahah.
Well I went to the Dr as I told the Dr I was low in Ferritin as per my private blood test and thought I might have P.Anemia she completely shut me down and said I don't and also said I didn't have a thyroid condition.
Yes I've had my b12 tests around 5 weeks ago
Serum B12 440 range 180-900.
Full iron Panel
Ferritin 13
Serum iron level 17 10-30
Serum transferrin 3 2-4
Transferrin saturation index 22.6 20.0-50.0
I have also attached my throid results since August last year.
Tinkerbell_84, I am very sorry I had mis-remembered the name on an earlier post. I am sure you don't need me to assign any extra symptoms to you. I think we all have more than enough already. I am afraid I am not sufficiently knowledgeable to comment on your blood test results but am sure others will respond to you. Wishing you well.
B) Armour is extremely expensive and doesn’t suit everyone
C) with very low iron/ferritin starting more slowly on Levo may be better. Standard starter dose is 50mcg and increase slowly upwards over 6-12 months until on full replacement dose and optimal vitamin levels
D). Taking anything that contains T3 (like Armour) will dramatically reduce TSH very quickly and will often suppress TSH. Many medics are unhappy with this
Many of us with Hashimoto’s have very poor vitamin levels as a result of being hypothyroid
This makes it more difficult to tolerate starting on replacement thyroid hormones
anxiety is extremely common hypothyroid symptom
Levothyroxine enables us to start more slowly
Retesting 6-8 weeks after each dose increase
Armour is a manufactured tablet, with fillers
As is Levothyroxine
Armour (or any NDT ) can also sometimes exacerbate autoimmune reaction. If starting on NDT it’s important to retest thyroid antibodies at next 6-8 weeks test to see if antibodies have risen further
On levothyroxine, once at high enough dose to bring Ft4 to good level, and all vitamins at optimal levels …..if Ft3 remains low, then may be time to consider adding small doses of T3 prescribed alongside Levo
Or to consider changing to NDT
But there’s almost 2 million people in U.K. on replacement thyroid hormones
The majority do fine on levothyroxine, prescribed via their GP
This is by far the easiest, cheapest option and the best to try initially
If, a few months down the line you need to reconsider then that’s a step to consider then
Only approx 10-20% on levothyroxine may eventually find they need small doses T3 prescribed alongside levothyroxine or NDT
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Is there a recommended weekday for Medicheck thyroid testing? 
Diagnosed with folate deficiency... and lost a lot of weight 
Thyroid panel blood test results 
Diagnosed with Graves & Hashimoto's but symptoms are Hypo - Doctor useless!!
