Sensitive to thyroxine

Hi. I've been hypothyroid for 10 years. Im now in my 30s and have been really battling to regain my health after having my last child (nearly 3 years ago).

I just wondered if there is something else I may be overlooking.

I struggle with increases in dosage of levothyroxine and have to do it incredibly slowly as I get vertigo, migraines, palpitations and panic attacks to name a few of the effects.

I weigh more now than I did when I was at the heaviest point in my pregnancy. The list of symptoms I experience is too long to go into but here are the main ones; fatigue, brain fog, anaemia, hair loss, generalised pains, gluten dairy and chemical sensitivity.

A recent change in the brand of levothyroxine I'm taking has resulted in the symptoms I experience when increasing dosage.

My diet is very clean, I juice 5 days of the week and I try to get out and walk one time twice a week (even though it takes me 3 or 4 days to recover).

Any suggestions to help me regain some health would be greatly appreciated. I'm a single mother of 3 children, each with varying degree of special needs so really need my health to be able to support us all.

17 Replies

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  • It may just be that levothyroxine doesn't suit your body or that the addition of T3 to T4 might suit. There has been research that a combination T3/T4 helps many people. The problem now is that doctors wont prescribe T3 but it might be worth adding your own and see how you get on. If you need information you'd need to put up a new post asking for a Private Message to be sent of where to source as no information is allowed on the open forum for prescrition medications.

    thyroiduk.org.uk/tuk/resear...

    web.archive.org/web/2010103...

    The doctor who wrote the links above would never prescribe levothyroxine, only NDT or T3.

  • Thanks Shaws. I have tried t3 as I had no problem getting it prescribed where I am, but it didn't work. The palpitations and immediate side effects of the medication didn't suit me at all.

  • Sometimes that can happen but it is usually the fillers/binders. Was it UK T3? Thyroid hormones themselves are orthomolecular.

    healthunlocked.com/thyroidu...

  • Hi vwyness

    Sorry to hear your feeling so bad, especially with everything else you've got to cope with.

    I've had a quick read through your previous posts and answers. Have you been tested for vit b12, vit d, ferritin and folate. Because these play an important role in the body regarding utilising your thyroid meds effectively. Also vit b12 & vit d deficiency can cause some of the symptoms you describing.

    In a previous post you said your TSH was 100. Where is that up to now. Do you have any recent test results ? If so could you also include ranges because labs vary.

    Have you had an antibodies test / test for hashimotos ? When I was diagnosed hypo 30 years ago I wasn't tested for hashi's but spent nearly 10 years with crippling IBS ( as diagnosed from the doctor ) which was no doubt due to hashimotos and my reaction to gluten. I found a lot of the symptoms included extreme fatigue and being generally physically in bad condition. I was diagnosed ceoliac nearly 20 years ago ago and a strict gluten free diet has made a big difference. Have you tried going gluten free ? Or doing a food & symptom diary ?

    Regards your meds t4 and t3 what are you taking now ? And what have the doctors said ?

    I'm sure the wonderful people on this forum who know a lot more than me can help you more.

  • Thank you for your reply. I recently had full blood tests and the only thing they came back with was anaemia, which has been a recurring issue for me for many years now.

    My TSH was at 2.4 last time I saw the endocrinologist (Feb of this year).

    I have requested the details of my full blood test but can't collect them until Wednesday so will post them then.

    I've been following a strict gluten free diet for over a year now and whilst I have seen improvements, I feel far from well. Also aware that I cannot tolerate dairy and bloat so much that I look pregnant again! I did request a celiac test from endo but it came back clear, which of course it would!

    I am only taking levothyroxine at 75mcg and the doctors seem quite happy as apart from low iron, my results appear normal.

    The only thing ive not tried is a natural thyroid.

    I also experience serious sensitivity to chemicals now. I use all natural health and beauty products (not the green washed regular products) and am even going so far as to have all my amalgam filling replaced with non toxic ones.

    Really can't think of what else I can do to feel better.

  • I really feel for you.

    If you've had a ceoliac test while on a gluten free diet I guess it would come back negative. But it sounds like a good idea to stick with it. I really feel for you regards dairy, I'm a cheese nut so would struggle to give that up.

    Have you tried the auto immune protocol diet ? Again sounds difficult but perhaps worth a go.

    I think Clutters advice below sounds good. Its amazing the difference a change in brand can make. I've also read else were on here that some people use a liquid thyroxine, because they are allergic to the fillers. Have you tried that ? Again not something I've tried.

    As I'm sure your aware using this forum. Its always worth getting a printout and asking the knowledgeable people on here what they think. As the docs are good at saying something is 'normal', when its far from optimal.

    I hope you get some resolution to your problems soon and start to feel better

  • Thank you.

  • Vwyness,

    Tell your pharmacist about the adverse symptoms you experienced when the Levothroxine make was changed and ask for the original make you were taking to be supplied in future. Check you have the right make before leaving the pharmacy as they may not change it otherwise.

    If the pharmacist is unhelpful insist on the prescription being returned and take it elsewhere to be dispensed. You can also complete a yellow card report to report the adverse symptoms you are experiencing.

    yellowcard.mhra.gov.uk/

  • I collect my prescription directly from the surgery so will talk to the dispensary or even one of the doctors next time I go.

  • That's very interesting Clutter about the yellow card report. My regular chemist recently changed from usual brand to Teva and I've been feeling increasingly ill on them. Thankfully a wonderful poster on here made me realise it must be the teva. Others have also complained about them. I don't think they are fit for purpose. I can't tell you how bad I've felt the last couple of days.

    I've got an emergency prescription to pick upon later and I'll be going to a different chemist.

  • That's interesting as the brand I have is Teva. I'll contact the surgery and see what alternatives there are.

  • You must change ASAP. When I got them I googled them because it said 'new formulation' and it was a brand I've never had before. It said that their tablets had been removed from the market roughly 2 years ago due to lack of quality and chemical stability.

    But it was only when I read a thread on here yesterday that it clicked ( thicko me ! ) that it was the teva tablets that were making me feel so ill. I guess I'm too trusting that the powers that be only provide us with suitable quality medicines. I guess they might suit some people but there are a few members that have said they have felt rotten on them.

    The thread was yesterday and the title was roughly - Anyone had raised TSH on teva tablets.

  • Kitti,

    What is your usual Levothyroxine brand?

  • I usually take actavis

  • Vwyness,

    It might be the acacia powder in Teva which is upsetting you. There is none in Actavis.

  • Thanks. I've just spoken to the doctors and I can collect some activis later. Hopefully that will resolve the current issue.

  • I have almost same symptoms. I don't have thyroid gland and have had levo 5.5 years.

    When we are more and more hypothyroid and sick, food sensitivity or anxiety can be increased. I quit levo from three weeks abut 2 months ago. During the time without levo, I flt better as reduced and less strong heart beats, no sweating, pain & breathing problem was gone but skin symptom did not appear. Anyhow I was not freezing cold any more (especially hands and feet). As I got very hypothyroid (before I quit levo I was on the transition of levo to NDT but I was a little hypothyroid) so I took levo with T3 but on the first day I got more symptoms than before. My blood was constricted causing bad blood circulation and stiff body like paralyzing. So I had to take ativan 2mg which is higher than usual to relieve paralysis.It lasted for 3 weeks but I quit is again and tried another NDT but I was very sensitive to their filer and had side effect that I can't stand. Therefore, I was not able to as the conversion chart is not accurate. Nautre Throid is more effective than Armour or NP but it has lactose. WP thyroid has lactose too. I am allergic to talc in erfa armour so can't bear even low dosage.

    At first, I got weight gain but later weight loss as hypothyroidism and myxedema got serious (swelling is more and more while my skin got hard and heart rate is increased like panic attack) so I got blood test yesterday and the result will come out in 2 days. But myxedema can cause heart arrest and comma I had no choice but to take levo again. Pain is more when more dosage is taken. T3 also caused pain. It did not correct adverse symptoms of T4. Whe I took 20 mcg of I got less pain on thigh but my hip, calves, and butt got stiff and caused some pain. 25mcg of T3 is equivalent of 100 mcg of levo.

    When I got blood drawn out, the nurse had hard time getting he needle into my blood vessel saying the blood is not narrow and I guess it is because my skin is harden due to myxedema.

    Anyways I was advised T3 is strong but cause more fever and heart beat than Levo.

    When I took T3 2 days ago, my heart was beating like it is to explode. Yesterday my pulse was 145. And when I took levo 88 and T3 10 my heart is pounding with pains again and stiffness of my body.

    I read that when patients are on hypothyroid and get more sensitive they should start form low dosage of levo. But I was worried about my myxedema so start a high dosage, not high but I guess at least 100 or 125mcg or more than that might be needed. When I tried 100mcg levo and 30 T3 I got more pain and heart beats.

    Now as I am weak and sensitive I am very intolerant to levo than before. But I have not choice. it also increased blood pressure. I am dizzy again on levo and have fever and ny body is cold while skin temperature is high. My face and head is hot sweating all the time.

    Some oriental doctor told me when core body temperature is low, skin temperature becomes high to maintain body temperature and close skin pore while blood vessel is constricted. This situation cause bad blood circulation as reducing the speed of blood flow and all inflammation, pain problems. He treated myxedema and other allergy or skin disease like eczema. My friend also cure eczema by oriental medicine from another doctor.

    The thing is what makes out inside body cold?

    Levo keep adrenaline and cortisol level high. I sweat a lot on levo but I rarely sweat.

    I heard Adrenaline makes our body cold. To cure our symptoms the oriental doctor says skin temperature should be lowed and open the pore of skin and increase core body temperature. I wanted to be treated by him but he lives in Asia. So I want to see him later.

    If you have blood pressure or heart problem you can take blood thinning medicine or medicine for palpitation (beta blocker or calcium channel inhibitor) which may work for you.

    But I recommend you to try NDT first.

    If you have your thyroid gland you can boost it and quit levo later. I was treated by oriental doctor who is specialized in thyroid so I was recovered from hypothyroidism due to Subacute thyroiditis 12 years ago. It is not easy to meet good oriental doctor too.

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