Is this Medication ever going to be right for me?

Hello everyone,

I am now on Liquid T4 (after trying Levo, T3, Westhyroid Pure & Nutri Thyroid which all went toxic on tiny doses)

I was over the moon when I started this liquid T4, no signs of becoming Toxic and improvements very quickly on tiny doses - unil I got to day nine - pulse though the roof and a horrible sensation around the chest - ended up being put on lots of Betablockers to calm things down, did ease the pulse but now it keeps rising and burning sensations, Was told to stop the medication - 10 long days of misery, no improvements at all but the amount of stress that caused was unbelievable, the whole of my body is still so painful to touch, when ever I move I creak and if you press on my skin it feels very lumpy underneath. It is still to painful to do any yoga - after all this time.

Now if I stop the medication it does seem to cause massive stress, I guess it is because it is doing some good but why is my pulse so high, I don't think the docs will give me a higher dose of betablockers.

Is it safe to continue & will the body just settle down over time and except it?

But if those symptoms were caused solely by the medication - wouldn't they go when I stop it.

Thank you


26 Replies

  • Kitten, have you ever posted your blood test levels? I've checked your previous posts but if the information is there, I haven't found it.

  • Hello Gabkad,

    Did post some back in October last year, but since then have not had many done, most recent just said my TSH is only a little high but my FT3 & FT4 were in range

  • Kitten, is there a possibility that you should not take any thyroxine because something else is big time off and any increase will just make you sick? It sounds like you get a major adrenline surge. They should check your adrenals for abnormality and not just the cortisol. People do get tumours in the adrenal which will churn out adrenaline and cause super high heart rate. Have you had a CT or MRI of your kidneys done?

  • Hello Gabkad,

    I did have Adrenal Fatqiue - picked up by Dr P (not by a normal GP) as they seem to think all is fine. The Endo did test adrenal Corticoids (with a blood test) and I was told all was ok - and through the blood they told me back in October my Kidneys and liver were fine.

    If all is fine, why am I so Ill and why am in such pain.

    I have had stomach problems for years along with what appears to be Candida - Although the docs say it isn't - both these flare up when the thyroid meds goes wrong and ease if I manage to get a little medication in - so their is a connection their somewhere not that the doctor will ever make the connection.

    Best wishes

  • Gut issues.... I think you answered the questions right there. Inflammation in the gut results in lots of inflammatory cytokine production which causes pain everywhere.

    It's like if you are coming down with a virus infection: everything hurts.

    Stomach problem or gut problem? H. pylori - checked? Hiatus hernia? Esophageal reflux? Colonoscopy? You use a 'generic' term ... stomach... which can mean anything or definitely something.

  • Morning Gabkad,

    I was checked for H Pylori not along ago, but years and years ago I was told I had acid reflux, Leaky Gut and tares in my gut lining - I was given tablets for Acid reflux but it never done anything. The years passed and I just learned to put up with it. Now looking deeper I think maybe intolerance's are the culprit - This is why I will be cutting out Gluten, Diary, Caffeine & Soya - See if I get can some relief .

    My breathing went through the roof last night - well into the hundreds only lasted about 10 mins, then went down to 88bpm - I am really feeling bad. Got a docs appointment this morning but it is with the GP that doesn't like me - He took real exception that I went to see Dr P a few years ago - everything is against me it seems

  • Possibly you should not be taking NDT. Or any thyroid med. Have you ever been seen by an internist? (specialty here, not sure what it's called in the UK)

  • Hello Gabkad,

    No I haven't seen a Internist, docs here don't seem to think much about Intolerance's, however after seeing the GP today - I did bring up the food intolerance Issue and I asked "If I had an Intolerance which was causing my stomach problems/inflammation, would it also effect the uptake of the Medication" His reply was yes - so maybe that is where my problem lays. He said the symptoms I was describing were not down to the Thyroid. I also asked what Damage is this Thyroid Medication doing to my heart, he said none.

    Maybe sorting out the intolerances, will mean I can have more Thyroid meds

  • Don't know how this might apply to you, but back a few years ago I decided to get the H1N1 vaccine because of the elderly people I deal with. I don't think getting the flu would kill me but it might kill them.

    But this vaccine really did a number on me. My finger joints swelled up and were painful. And my guts went nuts. I won't get into how horrible this was but when I went to the doctor she denied it was the vaccine. Of course of course....

    I'm not a 'squeaky wheel' and avoid the doctor as much as possible. (TMI alert!) The really awful explosive, stinky diarrhea and swollen joints started 2 weeks after the vaccine. It was already 9 weeks into this by the time I went to the doctor. The diarrhea was not every day. More like every other day and it was to gag for. I made sure I left a generous explosion in the doctor's office toilet! I don't think anyone could have gone in there without throwing up for at least 2 hours, but too bad. I had no choice.

    So I thought, how can I get my guts to normalize? I thought about zero roughage diet high in fat and protein: therefore, believe it or not, I ate only fatty fish for 2 weeks. (Sure I drank my cup of tea in the morning but it was tuna, salmon, mackerel, sardines and stickleback.) I figured the zero roughage and 100% absorption plus omega 3 would give my guts a rest but still give me energy. No carbs, no nothing, just fish. A person can survive on this easily for a couple of weeks. Yes it was boring but it worked. I think the vaccine screwed up my gut bugs big time.

    Haven't had any trouble since.

    I think if someone is going to do a restricted diet, at least make sure it's ultra nutritious. Eating only fish, the volume of food was low, the calories were high and the nutrients were also high.

    I HAD to do something. Clearly whatever happened was not unhappening.

  • Hello Gabkad,

    That is very impressive - well done you, have you thought of becoming a doctor?

    That must have been a dreadful experience for you to say the least and as normal the docs are not much help.

    I normally avoid docs but with the heart rate I have had to help - I say help, that is clearly the wrong word - they try to mask the problem.

    Do you have a special Diet? I am a veggie - so never touch meat or fish, I take Flaxseed oil to get my omega intake, even if I wasn't a veggie - I couldn't stomach fish, the sight of it turns my stomach, Even if my Partner is eating Fish I have to go in another room - Always been like that.

    I have ordered some Perm A Vite Powder to help with the Gut Lining, that and changing my diet I hope will make a big difference - I am so fed up with being so Ill all the time

  • Sorry Kitten, the only experience I've had with vegetarian (lacto-ovo) was when I was in my late teens. That was when my thyroid became a goitre. Whether this was the thing that started it or not, I don't know. But I was not well eating that way.

  • It is a possibility, They do say Soya does upset the Thyroid, my GP said Soya is poison - this is another ingredient to avoid for me. - Such a restricted diet but If it makes me well then that's what I have to do - after all this I should be a great cook : >

    I also have a multinodular goitre.

    We have to keep fighting and doing things differently til something works

  • Maybe you still have the residue of levo in your blood. Tablet form levo takes about 5/6 weeks to leave your body if you stop taking it. I don't know about liquid form.

    Have you tried taking an anti-histamine tablet in case it is a lingering reaction to the medication.

    Next time you begin your dose and I would take a lower dose, take an anti-histamine 1 hour before you take meds. If you still have a reaction to the medication it's the medication which is the cause.

    I don't know why you would have a reaction to Nutri Thyroid as it is hormone free but it could be the fillers/binders in it. You could also try Nature-throid which is slightly different to WP thyroid although from the same company. Or some of the other NDT's - one hopefully will work. Maybe you need a very small dose of whatever you decide to try next. It's not a solution yet until you do find a suitable alternative.

  • Hello Shaws,

    Thank you for this great advice - I will certainly do that.

    I am really taking a very tiny amount of liquid T4 - 1.25mcg not even daily now - that done enough to send my pulse into orbit and create pressure around my heart.

    I think something else must be going on as I have had a reaction to them all - they make me so ill but being without them isn't an option either.

    Do you think it is taking tiny amounts that is causing the problem, maybe if I tried a bigger dose it might not react so much?

    Best wishes

  • I am not sure but taking one dose may be better than smaller ones but not if it makes you unwell.

    If nothing works for you your GP will have to give you a trial of Naturethroid which is hypoallergenic and may work for you. He would have to give you a prescription on a 'named basis' . Maybe any NDT would be o.k. with you as they are more synergistic with the human body than synthetics.

  • Hello Shaws,

    It is difficult to explain just how dreadful I feel but I am getting worse. I have had yet another increase in betablockers - the GP said that my Symptoms are not Thyroid ones and that my FT3 was in range at 4.9 just the tsh was high (these results were back in Oct)

    The endo has said the complete opposite to the GP i saw yesterday and said it isn't the medication but the Thyroid and they are going to do a blood test - a blood test isn't going to make me feel any better.

    The endo & GP refused Natural Thyroid - They said because you don't know what you are getting - so it is T3 or T4.

    I am trying very hard not to get annoyed with these so called professionals but it is getting very difficult with all the pain I am in and feel plain awful and getting worse, something is very wrong here and I told the GP that yesterday and he asked me what I thought - so I told him - he did actually agree about Intolerance's and said if I did have intolerance's then that would effect the uptake of the medication - maybe that is the issue - I am praying

    Maybe I should try taking the T4 at night

    Best wishes


  • Well Debs, the doctors and specialists really don't know too much. Regarding natural dessicated they make False Statements in order to prevent us even having a trial. Considering this was used from 1892 with a pigs thyroid gland and then gradually improved into the pills we get today. I doubt any death has ever been reported through taking it as it would have been removed immediately and not allowed to be manufactured/sold. The first woman was cured and returned to good health in 1892, so why cannot it be done in 2014? I know exactly how unwell people can feel - we rely on the doctors. Unfortunately they know absolutely nothing at all about metabolism or that the Master Gland of the human body is the Thyroid Gland which must have sufficient hormones for us to function normally. Some of us cannot tolerate synthetic hormones or maybe the fillers/binders used but we are more or less told 'get on with it' levothyroxine is the only thing prescribed. I know about the pain, I too couldn't walk, only shuffle,couldn't comb hair everything was pain, pain, pain. I couldn 't step on a pavement - I didn't know the blazes what was going on and when I was in a hotel, I got into the bath easily enough but 'by God' I couldn't get out. Arms had no power, neither could knees bend so the only way 'without calling staff' was for my husband to drag me out of it.

    So many recover their health with NDT as it is more synergystic with the human body but again it's trial and error to find the one that suits. Some on levothyroxine also find that some T3 added to the T4 is an improvement.

    I had more visits to the A&E and also by ambulance a few times.I also was prescribed b-b's. The pain disappeared when T3 was added but the palpitations ended when I stopped levo.

    It's no wonder we get angry when we finally recover our health.

  • Thank you Shaws, you really have been through it as well, well done on getting well - that is a real achievement in it's self.

    Do you take NDT ? I did try nutri thyroid & westhyroid pure but no Joy either. I will be having a bigger dose of T4 tomorrow and see once and for all what is causing the problem, I agree with you - it's the T4 causing such horrible palpitations and pressure round the chest - I asked the doc what damage this is doing to my heart - his reply was "none"

    I think I would have more joy seeing a vet

  • At least they would know what they are doing.

    After a few weeks on levo, ask for some T3 to be added for a reduced T4. I felt better on this that on T4 alone.

    I do fine on Naturethroid and on T3 alone so am fortunate.

    I hope you find a solution too.

  • Thank you Shaws, I am sure with the great advice and this wonderful site I will get better - I am determind to get my health back.

    Do you know if the Liquid T4 is Lactose free, I couldn't see anything on the bottle or instructions, the reason I ask is because after I take it, I always have to rush to the toilet?

    Best wishes


  • I don't know but this link may be helpful.

  • Thank you Shaws - you have been a great help : >

  • I seem to remember you haven't got any results to share...? I think something else is going on. This is just an observation, but most times when people really struggle to take even a tiny amount of thyroid medication it's because something else is out of whack, most often iron. I think when you finally get to see your endo that you need to see of you can get him to do a ferritin test (a full iron panel would be even better), Vit B12 and Vit D. Something's getting in the way here.

  • Hello LilyMay,

    I completely agree, this isn't a normal reaction at all. The Endo did test Vit D and said that was fine, It was very low years ago though. On my test results from Oct my Iron was slightly high and so was my Vit B12. The Endo isn't to keen on doing any tests but it's not her that is suffering.

    I will be ringing the surgery tomorrow to see if just for a change they could try being helpful.

    Do you think maybe taking the medication of a night would be worth a try?

    Best wishes

  • I have the same problem and can't increase above 2.5mcg! I am seeing an endo in two weeks' time but am not holding my breath. Otherwise, I will go down the route of herbal medicine. It seems to be an immune system/ adrenal problem but nobody seems to know how to fix it.

  • Morning Vienna2010

    I am sorry to hear you are in the same boat as me. I did try lots of herbs but never really powerful enough. Just started the exclusion diet as gluten/ intolerance's can cause things to flare up.

    I have just down loaded a book onto my kindle called The Thyroid Alternative - Renew your Thyroid Naturally by Dr Nikolas Hedberg?

    Best wishes

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