Thyroid UK
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Difference between feeling amazing and Blood Test result

I was diagnosed as being Hypothroid in 2012 I’ve recently gone cold turkey and taken myself off levothyroxine because I felt a footer coming on. My energy was low and I was gaining weight which in turn made me depressed.

Over a month on I feel the best I’ve felt in 10 years (I’m 60). I wake between 6.30 and 7.00am work 5 days a week doing 10 hour shifts in a busy commercial kitchen yes I feel tired at night who wouldn’t ... I eat well make my own bread eat fermented foods fish chicken wild meat and fresh vegetables. I am starting to go for weekly saunas again after a break due to location, and fall asleep by 10.30pm. So why dies my blood test show a low T4 and high TSH 53.1 ... my Doctor wanted to put me back on levothyroxine right away but why if I feel so good?

I take my basal temperature every morning before I get up that reads around 36.4 and just under 37.My liver is normal my kidneys normal my iron my cholesterol are both normal everything on the blood test is fine I feel fine except for that TSH reading and T4??? Bearing in mind levothyroxine is a T4 medication and in the UK Doctors do not test for T3. I’m trapped I feel worse in levothyroxine yet bloods are not reflecting how I feel ..

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Sometimes we don't feel so bad. My TSH was 100 but by that time I was very ill indeed.

A TSH of 53.1 is informing GP you are on an insufficient dose and you probably felt good after stopping levo as it could have been the cause of you not feeling good. Scientific research has proven most need a combination of T4/T3 to feel well and relief of symptoms.

By not taking thyroid hormones and the fact that your TSH is so high is that the pituitary gland it is trying to flag up more thyroid hormones but your gland cannot.

You have the option of not taking levo but you have put your heart at risk as it and brain needs the most T3. T3 being the only active thyroid hormones which enables our whole metabolism to function. You may not have been converting levo to sufficient T3 and that is what it is supposed to do.

You can get Free T4 and Free T3 tested privately from one of our two labs, Blue Horizon or Medichecks. Medichecks usually have an offer every Thursday.

thyroiduk.org.uk/tuk/testin...

I was always very ill on levothyroxine and I improved when some T3 was added but T3 only has allowed my body to recover. Others find NDT does the same. The original name for hypo was Myxedema and, before NDT was introduced, we died of myxedema coma through lack of thyroid hormones.

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I do wish we could find out why so many people feel either unwell or no different on Levothyroxine.

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I am not medically qualified but believe that some of our bodies don't like synthetic hormones. With levo (T4 inactive)) it has to be converted to T3, so if T3 - being the only Active Hormone - is prescribed it doesn't have to be converted and goes directly into our receptor cells. It also doesn't agree with everyone.

NDT is the very original thyroid hormone replacement and it is made with pigs thyroid glands so it may suit humans better and also contains T4, T3, T2, T1 and calitonin. It was first used in 1892 up till the present day but in the late 50's/60's I believe levo was introduced for the first time along with blood tests.

I have also read that doctors and endos were paid to prescribe levo instead of NDT and gradually, gradually it was also withdrawn from the UK, then T3, so it is T4 only that people will be prescribed when the TSH reaches 10. There is no conscience that patients are suffering through no fault of their own and backs are turned against patients, some of whom are unable to work and have little income to purchase their own.

Before that it was always our clinical symptoms that were the priority but nowadays the professionals know none of them, it appears to me, with the reliance on blood tests alone. Even worse, in the UK we've not to be diagnosed until the TSH is 10 and in other countries it is 3+. A huge difference and many people suffering disabling symptoms but remain undiagnosed.

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OMG my blood is boiling ......... AGAIN! Why are we pawns in such a horribly unfair game? Thank you for this. Those keeping us sick have so much to answer for.

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I know how ghastly I felt when my T stimulating hormone was 6.

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My American Grandmother who has now passed away. Lived until she was 86 quite happily on Armour! I want what she had as I am obviously intolerant to Levothyroxine. I was getting constant headaches, blocked sinuses, itchy nose, gaining weight, fluid retention, lethargy, blurry vision, constant sneezing, my snot was not the normal slimy stuff that runs out of your nose, and my eyes where watering all the time. I continued to get hot flushes even though I am 60 and post menopausal, I had a hysterectomy at 46 due to fibroids. My womb had grown to 8 inches in diameter it was like carrying a baby but it was just matter. Excuse the macabre description but I felt like a zombie. So having stopped the Levothyroxine end of March 2018 and still feeling great there has to be a reason behind it. Blood pressure good, blood test all good its just this T4 which is high and TSH which is low which is confusing....so am taking responsibility for my own health going with my gut instinct following my grandmothers footsteps and pursuing the Armour route, of course all this with my Doctors support. I am sending off for a T4, T3, and TSH blood test separate from my Doctors because the NHS do not do T3 blood tests, and if necessary will purchase Amour online. I just feel so utterly awful with Levothyroxine. Taking more of it is never going to make me feel any better. Love and peace

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PS Sorry I meant T4 is low and TSH is high!!!! typo error

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I feel I am in a similar position to you Shaw’s. I am not convinced that Levo has or does anything for me. To morrow I will ask my Endo to offer me a viable reason as to why I continue to take T4 whist taking T3. I remember when I first began Levo how much worse I felt. My GP had no idea why but since joining this forum I have a much better insight.

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When we complain to GP, we're told levo is all that can be prescribed, so we are on a hiding to nothing. We used to have options of thyroid hormones but slowly, slowly the 'supposed to be professionals' have slowly withdrawn options, the last a few months ago i.e. T3.

One of our advisers (a Scientist/Researcher) sent the following to the BTA and RCoP and despite three yearly reminders sent to them before his untimely death, they never did respond.

thyroidscience.com/Criticis...

You'd think that those who are supposed to have some compassion for patients, seem to me to only be concerned with climbing the 'ladder of success' and we have had experience when reading what certain Endocrinologists state and know they're not on our side. The above Adviser stated that it was due to 'corruption' through monetary incentrives from the pharmaceutical companies that levo became top of prescribing. We are now given no options at all. They insist that levo is 'perfect' for everyone but we know that some people are allergic/sensitive to even some common foods.

If you are in the UK, doctors/endos have been instructed not to prescribe T3 (too expensive - it used to be reasonably priced). Who increased the price - Big Pharma I presume. I think T3 is now around £600 per month when it used to be several £s.

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Yes well Shaw’s I take your point however I live and work in Saudi and also have a home in Mallorca, and still have mega difficulty securing decent Endos. In these places, despite my private med insurance, trying to seek out a range of treatment and source T3 is just as difficult as in uk. There is no vested interest or bias towards Levo here. I accept that in a Muslim country, pig thyroid hormone will not be available.

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There is also another 'natural thyroid hormone' made from New Zealand Cows gland and invented by the above doctor and now run by his widow.

naturalthyroidsolutions.com/

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Really useful to know. I wonder how available it is? This whole discussion is worrying, particularly to those suffering on Levo and have no idea there is a range of treatment available, though it be a fight to obtain. I know of at least four people on Levo still symptomatic and feel they just have to put up with their lot.

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Availablility seems to be fine.

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Quite expensive but I will try this route if T3 does not become more effective in treating my symptoms. It seems ironic that the first ever treatment for Hashi’s is so difficult to obtain nowerdays. Had its nose pushed out by greedy pharmaceuticals. Disgraceful that it has virtually become extinct as an alternative med prescribed by medics. I would think many Endos probably wouldn’t know how to prescribe it now?

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It has been helped by our own BTA etc making False Statements about NDT too. I wonder who pays for their Conferences/expenses etc.

thyroidscience.com/Criticis...

Despite Dr Lowe's three yearly reminders asking for a response they ignored him and Dr L died through an accident. That's why Dr L invented Thyro Gold so it wouldn't need a prescription.

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This is news to me regarding the history of treatment and so sad that Dr Lowe died in such unfortunate circumstances when his work was so necessary and pioneering in the field. The situation regarding treatment is shocking, immoral and unacceptable. I wonder if there are many more conditions that are so manipulated by pharmaceutical companies?

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Gosh and T3 meds cost peanuts in France apparently.

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Never stop taking prescription meds without a chat with your doctor. If your thyroid had stopped working, causing the hypo, you'd be dead! Clearly you're not converting T4 into T3 and the excess T4 is making you ill. You can insist on a T3 test. A UK doc can do that.

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But the OP said her T4 was low. So, how does that work? A UK doc can order a T3 test, but a UK lab can - and probably will - refuse to do it. :)

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Thanks ladies your comments are just as I thought I asked my doctor for a T3 test but she said they don’t do it and wants me back in Levothyroxine what’s the point if I’m going to feel I’ll again and am just storing up T4 but not converting it to T3 I’m cross and frustrated because I feel great but the tests are saying i have an exceptionally high TSH

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Well, you'd only store up T4 to a certain point, and then it would be converted to rT3. And, as you haven't had your FT3 tested, anyway, you don't know that you can't convert. I was converting perfectly well, but levo still didn't suit me.

How much levo were you taking? Do you have a copy of your labs before you stopped taking levo?

It's a well-known phenomena that when people stop taking their levo, they suddenly feel very well. Happens all the time. And they start thinking they never needed it, misdiagnosis, and all that. Been there, done that... But, it doesn't last. Some people only last two weeks before they feel so ill that they have to go back on it. Others can last longer - I lasted for six months. And I didn't feel ill even then, but I'd started to pile on the kilos. When my TSH was tested, it was 45. So, I didn't have any choice.

If levo doesn't suit you, there are alternatives. You can add T3 to your levo, or you can go T3 only, or you can get NDT. But, it's highly unlikely that you'd get any of that on the NHS, so you'd have to start taking charge of your own health. Buy your own T3/NDT, test your own FT3, etc. Just stopping your thyroid hormone replacement, without any back-up plan, is not taking charge of your health.

Why do you need to take it at all? Well, because you cannot survive for long without decent levels of T3. Every cell in your body needs T3 to function correctly. You may be alright at the moment, despite your high TSH, because your thyroid still had some life in it and started making hormone again. But, it won't last forever. That TSH is flogging your thyroid to death. At some point it is going to die. And then all sorts of things will go wrong : heart, kidneys, brain - oh, the brain can go terribly wrong without enough T3. Women used to end up in lunatic asylums because of lack of T3. Happened to a friend of mine, not that long ago. She ended up having electric shock treatment. Incredible that such barbaric treatments are still used in our life-time! Many women went into myxoedema coma and died. All because of lack of T3. So, you may not want to continue with the levo - which I perfectly understand - but you do need a plan B in order to save your life. :)

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Thanks .. I’m just going by what I was feeling before stopping I didn’t do it on on a whim! I was developing a goitre I was piling on the weight feeling heavy lethargic..

my job is super demanding and I need to be focused my brain feels clear as a bell I have more energy than I’ve had in years I’ve lost weight since going off the meds it’s confusing I have more saliva in my mouth no headaches no symptoms ??

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I understand, but it could just have been that you were under-medicated. Doctors rarely give their patients enough hormone to make them well. Developing a goitre would suggest that you were under-medicated.

Don't allow yourself to be confused by symptoms. An awful lot of them cross over from hypo to hyper and back again! Doctors have this fixed idea that hypos put on weight and have low blood pressure, but the opposite can be just as true. That's why we need blood tests as a guide, as well as symptoms. If your TSH is 53 and you are losing weight, then weight-loss is a hypo symptom. :)

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I had the blood test last Tuesday and saw her yesterday she said go back on Levo ASAP I’m having another blood test in 3 weeks to see !! See what I asked if I was going to collapse and does he said no

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Thanks those comments really made me feel supported ... I am not converting to T3 I am just loading up and storing masses of T4 I take my health seriously but I must say your comments were rather upsetting and a bit drastic my Doctor never said any of those things to me .. I’m sure if she thought I was going to crash she would have told me ...

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I imagine this reply is to me, but you didn't click on any of the reply buttons, so I'm just guessing. :)

No, your doctor wouldn't have told you anything about it, because I doubt she knows. I'm sorry if I upset you, but I was only telling you the truth. I think you ought to know before you do anything drastic. The first thing to understand in all this is that you cannot rely on your doctor when you are hypo, because they just don't have the knowledge or the expertise - or even the interest - to deal with it well. But, of course, it won't happen immediately. It's take time to get to such extreme points. It will happen slowly, but probably miserably. It's not something I would wish on anyone - apart from a few GPs and endos!

You cannot load up masses of T4, even if you don't convert, because it just doesn't work like that. At a certain point, any unconverted T4 will be converted to rT3 or excreted. It doesn't just get stored up and up and up, there's not enough room for it. And, as I said, you cannot know that you aren't converting because you haven't had your FT3 tested.

I really think that before you decide on anything, you need to get full tests done privately, if you can :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

If you don't know all those results, then you don't know anything about your thyroid status. There could also be an unresolved problem with your adrenals. But, you've got to start testing somewhere. And, if it turns out that you are a poor converter, and need T3, you can obtain T3 yourself. Don't just write yourself off like that. :)

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Thankyou

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I stopped taking my t4 as a last resort and felt way better but within a few weeks I was falling asleep by lunchtime. My gp referred me to an endo. Now on t3 and living again. You do need to monitor your bloods at a minimum tsh. Mine hit 98 and I think I was heading for a coma but I still wouldn’t have gone back on t4. I felt like I’d stopped poisoning myself.

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Sounds familiar. I am going to ask my Doctor to give me a prescription for Armour and I think this will fix me. :-)

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I would not get off of it without your doctor following you. I got off of it once because I misunderstood my doctor - my eyes got bulgy, I was in a crappy mood, and hair thinned out and hair and nail texture changed. I did go back and my dosage was corrected.

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Hi Sweetpotatoe

I feel very sorry for you, it's awful to be told to take something that you are sure makes you feel worse.

I did the same as you but, I did it because my GP would not believe that I was suffering hypo symptoms because she went by TSH and T4 only, ignoring T3. She said "you don't look hypo" so I showed her that I 'don't look hypo' even when blood tests show I am dangerously hypo. I was lucky though, I already had an endo appointment in place and came to no harm, but I think you need to be very, very careful.

Can you get a referral to an endo who is happy to prescribe T3? That way, even though you may not need it, you'll know the endo would have told you if you did and that whatever they prescribe they are doing so for you personally? It took me 2 years and an appointment with an endo who would have made matters worse, before I saw the second endo who has helped me. Can you keep pressing your GP for an appointment with a good endo? I believe you can choose who you see within reason and that there is a list available from someone on here called something like Lyn Mynott, the Administrators will tell you.

Take good care of yourself and best of luck

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Yes when I go back in a couple of weeks for another blood test I will put the pressure on her. I think if she felt like me she would go the endo way and get armour thyroid which is t3.... I can buy this privately and its really not that expensive thru an online Canadian pharmaceutical ...

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