Thyroid UK
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Confused so very confused!!??

Confused so very confused!!??

Iv been on 100mcg for 7 weeks now, first 3 weeks i thought id turned a corner then boom mental symptoms again (not physical may i add) and these are my latest results...

Im having panic attacks and anxiety which in turn is causing a low mood.. clearly im not overmedicated looking at the ft3 but i am with the ft4!?..

Anyway if i lower any less than 100 tsh goes up ft4 still stays quite good and ft3 drops a bit... and i get really bad breathlessness depression weird horrible symptoms... seeing my new endo tuesday what should i say???....

Just to add my tsh has always been below 1 for 9 years and ft4 slightly above range..

My doctor lowered to 75 when ft4 was slightly ober but tsh was at 8.. then referred me to an endo... and it has continued like this for a year and a half also tried different brands too...

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Thyroid Obsessed

When was your last dose of Levo prior to the blood draw?

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I had the levo about 4 hour before the test, could only get a 12 o clock appointment.. but to be honest iv tried both ways not taking before the test and also taking but doesnt mak a difference for 9 years when i was ok i always took the levo before the test as i didnt know any different back then x

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Your FT4 would be higher than normal. Levo peaks in the blood up to 6 hours after taking it, so the result will be reflecting the dose you took 4 hours prior to the blood draw, not the amount normally circulating.

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So what do u suggest??? My ft4 is always really good but ft3 isnt what should i say to the endo?...baring in mind all my vitamins are great, i have worked really hard over this last year and a half eating really well, also liver once a week which has done wonders to my iron stores... i just hope my endo has answers on tues i cant go on like this.. earlier on today i had a horrible panic attack and it has upset my stomach and i cant eat and im already slim i cant go on like this 😔

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I think you need to do your thyroid tests following the advice we always give here -

Earliest appointment of the morning, no later than 9am

Fast overnight

Leave off Levo for 24 hours

See where your TSH, FT4 and FT3 are then and you will see if you are converting T4 to T3 well enough. IF FT4 is high and FT3 low then conversion is poor and you would benefit from the addition of T3.

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Thank you, however i would find it hard getting a blood test before 9 as i have the school run at 9...

Also as i said i have already tried this procedure but at around 9.30 and ft4 is always high in range ft3 mid range... iv also tried t3 the tiromel from turkey for 2 weeks but made me worse!!.. i was thinking it could possibly be the brand that didnt suit me...

I was thinking if the endo had any common sense he can see clearly im not converting very well and may just may offer some t3 and with it being mercurypharma brand same as my t4 i might be ok...

What should i say to the endo im going to take all my bloods with me.. iv heard on here hes suppose to be the top dog (NHS endo) and mainly specialises in thyroid...

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NHS endos don't work on common sense, I'm afraid. And a lot of them don't believe in poor conversion, and believe that the FT3 level is irrelevant.

But we can't know for sure how well you're converting because you don't have an accurate test for the FT4. But, even if we deduct 20% to compensate for the fact that you only left four hours, it still works out at 19. something. Which is too high compared to your FT3, so that still shows that you aren't converting very well. Plus the fact that your TSH is too high, even at 9.30 am - it should be 1 or under. However, no point in increasing the levo, because that will just make your conversion worse. So, you need to add some T3.

You could always ask your endo to give you T3, but if he's an anti-T3 endo, there's nothing you can say to persuade him. So, the only solution is to buy your own. There's not much else you can do if you can't find an endo to prescribe it. And, in the present climate, the chances of that are very slim.

Just thinking 'out-loud', there. But, I can't see there's anything else that can be said.

I doubt it's the brand of levo that disagreed with you. Some seem weaker and some seem stronger, but apart from that, the majority of people do more or less well on all of them. There doesn't seem to be the variations there are with brands of levo. But, if you really don't do well on T3, how about NDT? I don't suppose your endo would like it, but... You could buy it on-line just as easily as T3 - possibly more easily.

I can't see any mention of antibodies, here. Have they been tested?

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Thanks for your reply...

Last antibodies were 6 points over range so presuming i have hashis...

Baring in mind When i was well my ft4 was always slightly over range and tsh below 1...

Am i right in thinking i could increase to 112.5 and see if i feel better??

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Your FT3 is so low, it's doubtful that 12.5 mcg more will raise it to a healthy level. Most people need their FT3 up the top of the range to feel well.

Besides, it will probably raise your FT4 to a level where it starts converting to more rT3 than T3.

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You have to follow advices SeasideSusie gave to you. The way you did does not show anything! And in this case it is not possible to find the real situation and to give any good advice or treatment...

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Apologies, I am new to all this! Can you please confirm your last point? You state that if ft4 is high and ft4 low? I just started taking 100mg of Levothyroxine and due to have bloods taken again in 2 months time. Just want to be certain when I see my results if I would benefit from T3 in addition to T4.

To confirm, not to have dinner the night before your blood test too?

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Typo, corrected now. If FT4 is high and FT3 low, when TSH is around 1, then that shows poor conversion.

You fast overnight, which means that you have your evening meal as normal, just don't have breakfast until after the blood draw.

Also, if you take your Levo in the morning, delay taking it until after the blood draw otherwise your result will reflect the Levo you took and will show a false high FT4 rather than what is normally circulating.

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Thank you for clarifying :)

I aim to take in the evening. How long do I need to wait after my evening meal before I take it? For my blood test in two months time, do I just not take it the night before? Also there have been two evenings this week where I have forgotten to take it (including last night...) do I just take the tablet as normal this evening and miss a dose?

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Normally we say Levo should be taken on an empty stomach, one hour before or two hours after food. If your evening meal is your main meal of the day then you should leave 3 hours before taking Levo. Water only with, and one hour each side of Levo, no tea, coffee, milk, hot chocolate, etc, as they will affect it's absorption.

When you have your blood test, book the earliest appointment time of the morning, no later than 9am.

Levo peaks in the blood up to 6 hours after taking it. Taking Levo will have an effect on your FT4 rather than TSH, so if you take your Levo in the evening I would aim for 12 hours before the blood draw.

You could take last night's dose now, then tonight's as normal.

You need to get into a routine for taking your Levo regularly. Do you take it at bedtime? If so then leave your Levo box on your bedside cabinet and take a glass of water to bed with you. That should remind you to take it.

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I am so sorry but as I say I am so new to all of this!! So no juice? I don’t drink tea or coffee or milk. I am currently breastfeeding my daughter (she is 15 months old) and she is allergic to cows milk and egg. Thus I am avoiding all milk and egg containing products.

So if I can take the tablet at 9pm and have my blood taken at 9am the next day?

Yes I know... i think because I’m not use to taking medication anymore it’s difficult! Due to my current lifestyle and circumstances, we don’t generally eat dinner until 9/9:30 and I’m usually knackered by the end of the day. My husband works until 6/7 so we get our daughter ready for bed around 7:30/8 so by the time she is in bed we don’t get to eat until 9/9:30 and then as I say I’m knackered so just fall asleep and forget to take it!!

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Orange juice may not be a problem but usual recommendation is water only.

Do you get up in the night to feed your daughter? You could take your Levo then and it will be well away from your evening meal. I take mine in the early hours of the morning when I need a bathroom trip. On blood test day, delay until after blood draw.

Or take it when you get up and wait an hour for breakfast so the days you have a blood test you just delay your Levo until after breakfast.

As I said, taking Levo affects FT4 more than TSH and it's TSH doctors generally dose by. So to get the highest TSH when looking for an increase or to avoid a reducing dose, then earliest appointment of the day and breakfast after blood draw. TSH is highest early morning and lowers throughout the day, it also lowers after eating.

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Have you checked your adrenals ?

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greygoose shaws any suggestions x

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Thanks for putting up your history and you've had a really awful time of it. It should make those professionals hide with shame for permitting sick people to put up with the cruel guidelines and putting a blood test result before people's health and wellbeing. One of our doctors stated that many were put in a parlous situation due to the guidelines and insensitivity.

"Guidelines to what? - optimum health or "leaving people in limbo" unable to work or sometime even to think, as their symptoms are disabling.

I am sorry Tiromel was disappointing. Did you add it to levo or try some on its own? The reason why I'm asking is that if levo isn't improving your symptoms and you add Tiromel, is it the levo and not Tiromel which is affecting you badly? If your FT3 is low, you don't have sufficient in all of your receptor cells and that could be making you feel worse. When I first added T3 to T4, it made a big difference but when I was phoned by hospital after next blood test to stop T3 I disagreed so was told to reduce T4. So that's when I decided to 'do it myself' with the help of Dr Skinner and TUK. I have no idea why they believe a low TSH is dangerous. Who thought that up?

It had come as a huge suprise to me that there were other thyroid hormones that could be prescribed, i.e. NDT or T3.

Some cannot get well on certain thyroid hormones and it could be the fillers/binders in them with affect us as the hormones shouldn't.

How much Tiromel did you add to your Levo. What dose of each? Have you tried Tiromel on its own? If you have a bad effect then take 1 anti-histamine 1 hour before next dose and if you don't have an bad affect, it would be due to the fillers etc. Keep in mind I'm not medically qualified but understand very, very well, what we have to go through to get to the other side and the astonishment that first of all I wasn't diagnosed by professionals, despite clear symptoms.

All of us on this forum know that what we state is true, some cannot recover on levothyroxine and it is not our fault. They used to prescribe NDT (withdrawn) and the same with T3 due to cost. Dr Lowe wrote the truth and it was down to the BTA and RCoP who made the decision re NDT. I know T3 was down to cost and what a perfect excuse to withdraw it too. Leaving only levothyroxine which is not for everyone despite them forcing it upon us and I'm sure if members of their family or themselves were suffering and like Hilary Clinton able to afford NDT that would be their choice.

For me levo was poisonous and will never take it again.

Let's hope you are able to find some inner strength that can help you through this and that you find one that will heal.

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Hello shaws - can I ask are you on ndt - I’ve got to the point I want to try alternative treatment - if you are on ndt can u ask where you buy it from please - perhaps you could reply privately...thank you !

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Agree with you completely, the insistence on going with blood tests first completely dismisses the fact that we are all different and will react to everything in a different way. Unfortunately these guidelines as they call them have to be adhered to by the Doctors even if they don't agree with them. It's all very stupid but there you go, the whole system regarding thyroid treatment is like this as I have found out myself.

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One of our revered doctors (deceased) fought a one-man battle with the authorities. In that he was being referred patients who had mysterious illnesses (after the introduction of blood tests and levothyroxine) who remained undiagnosed which I assume due to the new blood test).

He found that most were actually hypo and treated them thus and they were relieved.

However, as the years went on and his name was passed around patient groups the authorities didn't like him and on one occasion a patient was consulting another doctor and mentioned Dr S's name and the other doctor said to her 'we've got him now'. (She told Dr S who was going to appear before the GMC yet again).

So it was not doctor Skinner's 10,000 patients who wrote to the GMC complaining but they did write to state he had saved their lives. His case was dismissed but Dr S eventually died and his staff and family and patients were bereft.

His staff have spent the last three years collating all of his/their Research and are hopi g to publish when they get the funds they require.

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It's such a shame that they remain so narrow minded. I think it may have a lot to do with finances and it being cheaper to buy Levothyroxin in bulk than try and treat people as individuals and offer NDT as an alternative, which they don't want to licence. Terrible

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Your not converting the T4 in levo into the T3 that every cell desperately needs especially all those connected to mood and anxiety ...have ferritin, folate, b12, vit d3 all been tested because they have to be at least halfway in their ranges for the conversion to occur ......are you also taking at least 2000 mg of vitamin C in divided doses and 200mg magnesium glycinate or malate 3 times a day because they help the body heal

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Yes all vitamins are great and high in Range iv worked very hard over the past year and a half to get my vitamins optimal but they dont seem to make a difference to my thyroid levels...

In fact years ago when i knew nothing about the thyroid, my vitamins were really low in range but my thyroid levels were great and i felt great!

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Hmmm thats worrying ...maybe you need either T3 or try NDT ....certainly my lot simply cannot tolerate levo or t3 but are well on NDT

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Hi im not expert like others above but rang bell with my story- tsh atfour , good t4 levels but t3 lower third of range.....horrid panic and then low mood

Only saying where im up to in case it touches a bell so to speak

Having adrenal support now which has turned me a corner, although i know there are different trains of thought on adrenals, one expert says to heal adrenals to allow thyroid to come into balance and another saying the adrenals will sort out once thyroid ok?

also taking progesterone naturally ( with 1 percent ostregen in it) and constantly doing healing the gut as this seems to be base line for health for all, and flora

Reading about candida and how important it is to be candida free

Also gluten free as it allowed me to drop weight and had a few antibodies in one test, and porous gut lining ( if this isnt healed im reading ut progresses to celiac ibs etc

working too on the vitamins and selenium advised is a must as we know to aid conversion x Sorry if repeating as i havent read all above

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....when i had babies years ago i was worse after births, and it seems progestetone drops loads, this is why some eat placenta as its loaded! Maybe worth checking your levels as iv just discovered mine under range! So its not just thyroid at imbalance ad iv discovered, its the whole thing to tick you over seems to me the thing we strive for

I was so lucky to see dr p and he feels my thyroid will balance when the rest is treated🌸. Shall see, the candida thingy isnt mentioned much but so impirtant, as gut health

Hardest thing to me is no sugar!!!!!🙈

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Levothyroxin if that's what you are on, can give you lots of side effects, agitation and anxiety are very common as insomnia. Some brands are better than others worth a try changing the brands. If nothing helps then swapping to NDT if you can afford it is good. Trying to keep to the blood test levels if you have problems like this is virtually impossible. I've had to just go with what feels right for me as everyone is different. I would ask your Doctor for a different brand Teva has less fillers in it so has less side effects.

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Yes, personally felt worse with teva seemingly changed the fillers and a lot said this, I got rash at this point but it may have been Adrenal hives, so confusing, anyone taking Adrenavive and metavive now, feeling better in a few ways, not quite there, panic al,PST gone, It hasn't measured t3 so feeling way with it x

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I've just started on Metavive. Do you find the Adrenavive is helping? I'm taking Selenium as well as Metavive.

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My heart goes out to you ... I had all your symptoms which started when my son was 8 months old. He's now37!! I agree it looks like you need at least some T3. I personally never managed to get better whilst on any T4 at all...I've been on T3 only for a long time and it certainly helped a lot. However, my mental health symptoms - panic attacks, agoraphobia, depression, anxiety etc. never went away until I started taking a variety of B vitamins. Multi B's didn't help much - I had to take individual B3, B6 for starters. Here's a link to info on all 8 B vitamins.

brainmdhealth.com/blog/how-...

Also our brain is made of something like 80% fat so I started to take Cod Liver Oil high dose capsules, (or Omega 3), also eating cholesterol.

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...i have felt better on three occasions Firstly

At the outset( meaning when I got to TUK a year ago not 40 yrs ago!!). As I then took b12 and D as both below range low and it helped strsight away, such a relief as I'd jut moved area on my own and I thought I was going to pop off I felt so ill

Then the levo I took didn't do much and my head screaming on 50mg, at this point I did read about adrenals and was waiting to see dr p then he was very poorly so I took a bit of t3 and got some relief from it, and still took 25 levo (my t4 was always high range naturally but t3 was in lower third )that changed after t3 as it brought down my t4 and tsh to 3

Then, on dr p advise, I took Adrenavive, I noticed energy improvement almost immediately,

I weaned off levo and t3 and took metavive and now I've gone right down there again, but calmer and not panicky since Adrenavive, still taking it of course,

So at a crossroads now as I've melted down and think I need some t3, the it is, I may I,prove on increased adrenavive

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Rosie I'd think we need selenium 200 ongoing, for the conversion,

As far as I know there is some t4 and t3 in metavive but not measured, do you know of this

Yes, I felt so much better when started Adrenavive, my reflex tests showed up I was struggling. (Drip feed stress for years so figured )

How is the metavive suiting? Is it metavive 1?

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Yes ,Im having butter and good fats much more too and GF and try to be sugar free, as much as poss anyway

Marigold that's interesting about splitting bs. I was saying how lovely it would be for a multivitamin, tongue in cheek! there Are so many to take haha, costs arm and leg, Iv got D and B12 spray, b complex, selenium, magnesium, C, gut healer, Flora balancing, A and E and zinc, I'm buying one for candida now, and started progesterone natural cream phew hahaha I'm sore it can't be right

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Thankyou for link, is it easy to buy them separately ?

Please let me know how you go on. Both x

Keep going 😘

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