A bit of Honesty

I went to GP this morning. GP not on duty, but a very nice Locum was and lo and behold he told me a little home truth. Before I had really got started and only mentioned skin problems after having MP Levo, he said that he had three other ladies in nearby locality with the same symptoms after MP Levo. While I was talking he was requesting an urgent appointment with my Endo and said he should be able to do something. I don't suppose for a moment this appointment will be that early, but will keep you all posted when it happens and what the outcome is. Bet I will be fobbed off again!

It was so lovely to be told the truth for once and by a much younger doctor. Wish he was at surgery permanently!

56 Replies

oldestnewest
  • What a change for you to have a sympathetic consultation with a doctor who takes notice of symptoms patients are having whilst on levothyrxone. It is very refreshing.

    P.S. You should complete an MHRA complaints procedure. It's quite easy to do.

  • It was a lovely change and so good to feel as though I was not making it up. I could have kissed him.

    Quite a lot of us on the forum did complete MHRA complaints forms, but nothing was done about it and this insidious med is still being given out, so this post is, in part, a warning.

  • Yellow card scheme - in case needed

    healthunlocked.com/thyroidu...

  • Sent one in a couple of years ago spare. No action taken, the same as many others.

  • What is MP LEVO please 😃

  • Mercury Pharma Levothyroxine. Sorry, I should not have abbreviated this.

  • What are the symptoms to which you refer?

  • Glue-like lumps coming out on skin. Very sore on lips.

  • Yes, what skin problems? I take that brand of levo, so it would be helpful to know, thanks.

  • See answer to Hennerton.

  • Thanks, sounds awful, hope it settles down quickly.

  • Well it's good to know that I am not a hypochondriac! I am hypo thyroid and I had MP levo, maybe 18 months ago which made me feel very unwell. I seem to be fine with Almus/Actavis. Problem is that MP make 25mcg tabs so if you start on 25mcg or move to 75 or 125 you can have problems. I bought a pill cutter at the conference just in case I need a higher or lower dose than my current 100 mcg.

    What a refreshing change for you jbee to find someone who is interested!

  • It was such a relief to know it wasn't something that I had been doing unknowingly. Unless I can get a lot of people to band together I don't really know what to do until I see the Endo.

  • Jbee I'm on MP eltroxin here in Ireland and have awful trouble with spots and little bumps under the skin of my face. Definately think its MP thats causing this ive never suffered with spots if I was a teenager I'd understand but at 52 definately not.

  • Hi Mauds,

    Sounds as though you are going through the same. The trouble is, I now don't know what one I can have and have not managed the one NDT I have tried yet either. Like you I never had teenage spots, so wonder why now, although they arenot really like spots, but as yousay, lumps under the skin,which have broken through in places with me. I look a realmess and with not being able to now colour my hair- even worse. Just when I am at the age when I need all the help I can get!

  • Jbee I really believe that MP Eltroxin is causing problems for a lot of people. Ive friends here in Ireland on it also and they suffer with joint pain, body pain spots. One girl I know not long diagnosed was given Activas and all her pain vanished

  • I am on Actavis at the moment, but as yet not doing too well. Was put on it when Norton went off the market and got stomach pains then, the same is happening, but at the moment I will have to try and see it through.

  • I have a friend who has gone on Actavis and is finding it a lot better than MP Eltroxin. She said she was having awful joint pain on MP but on the Actavis no such problems. It just shows how different we all are.

  • Both you and the other women along with the locum should be filing yellow card reports

    thats the only way the rubbish made by MP will be exposed

  • RFU, quite a number of people filled in yellow cards and nothing more was heard. I have seen about 40 doctors for this problem, 20 local and about 20 in one fell swoop at the Royal London Hospital in a kind of brain-storming session, where they came into the room I was in and all asked questions and took photos. Quite a good way of diagnosing, but at the end of the day no-one had an answer, even the Consultant in charge. Felt he did know what was wrong, but would not say. He did say to keep on taking the Nutri-Adrenal as recommended by Dr BDP, even though my then Endo said he was not happy me doing so.

  • I was very unwell on the brand of levo you mentioned. I had terrible symptoms and felt like i was been posioned and spent alot of money on private blood tests trying to get to the bottom of it. I then changed my brand and those problems faded.

  • Yorkshiregirl, although I have changed brands a few times, none of them seem to be clearing the problem and the locum said that he had one lady who could only have Martindales. What hope of getting that out of GP's?

  • Hello yorkshiregirl44

    Can I ask which brand did you change to?

  • Can someone tell me what the problems with MP are. I have been very unwell with a lot of symptoms? I take a mixture of 25mcg and 50mcg. I dont have a rash though.

  • Annette, as far as I am concerned I only seem to have skin problems, but I do know of others who have had kidney problems as well.

  • Hi all, I had the misfortune to take Mercury Pharma Levo. I felt as if I was losing my mind, awful mood swings, generally feeling really odd and brain fog got worse. My useless endo didn't believe me.

  • Really think MP Levo did not work at all, nor Wockhardt. Both are made by the same manufacturer and when I spoke to a doctor in India (they phone you back when you have phoned the UK number) she said, almost as though she was not talking to me, that she would have to then contact Wockhardt. I really did feel, at the beginning of being put on MP Levo that I was very undertreated with all my old Hypo symptoms, plus the skin problems. My blood levels have risen since then,but the skin problems persist.

  • in my humble laymans view , and I have commented on this before , this could be because of the 'fillers' that ALL manufacturors use [ they are all generally different ] i.e. if you have to have a dairy free diet you will not be able to tolerate lactose -- that some use as a filler in meds -- in essence the fillers NEED to be looked at and checked just as much as the active ingredient of the medication , because all meds AND fillers can react and have a reaction for & against the well being of the person taking them .....alan

  • Yes Alan, I too believe this about the fillers and still keep thinking it is something to do with the Acacia Powder, which according to the Pharmaceutical Handbook does not mix with soap. You have to wonder why they put things in them that can react with everyday products. I can now not wash my hair with shampoo or use any other chemical on my skin. Thank goodness for hot water, although even water has chemicals in it!

  • I take this MPV levo. What skin problems are you having?

  • Joesmum, please see my answer to Hennerton above.

  • I have been on 100mcg of this kind of Levo (Meecury Pharma) for years. I am extremely drug intolerant and prone to allergies. I also have to take many other meds for Rheumatoid Arthritis. I have not experienced any skin changes with this brand of Levo to date. As someone has said its very important to Yellow Card medications you can't tolerate. I will ask my pharmacist if she's had any complaints.

  • I have been on Levo since 1997 and never had this problem before, but it came 2/3 months after the start of MP Levo and I can now not use any that I have tried with the skin problem still persisting. Have sent in yellow card as have many others, but think this is a problem they are hoping will go away. Too many people suffered for it not to have been attributable to MP Levo.

  • I can only tolerate Mercury pharmacy products, I am extremely allergic to actavis products, my symptoms were confirmed as an allergic reaction by yellow card, I ulcerated in the genital and anus area, my eyes were affected too with chronic itching, within 48 hours of stopping actavis thyroxine the itching completely stopped and I started to heal.

  • Kizziemaria, each to his own obviously. I have just about the same symptoms as you, so feel it must be the fillers that are to blame. Either way, I was perfectly treated on Norton, originally, and then Goldshield Eltroxin, even though MP are supposed to have the same ingredients as Goldshield Eltroxin. If I stop any Levo for a couple of days the symptoms begin to fade, but because I had a sub-total thyroidectomy and was only left with 1/10th I cannot go any longer without some form of Levo.

  • Hello kizziemaria,

    Your allergic reaction sounds absolutely dreadful. Very extreme but just proves that these allergic reactions are certainly NOT psychosomatic (spelling?). I'm glad you have recovered.

  • Clearly evryone reacts differently to different fillers etc. I am on gluten and lacto free to get rid of TPO antibodies. I don't worry too much though about the lactose fillers. I believe that MP use acacia powder!! Before my hypo diagnosis i had to avoid chicken, wheat eggs and soya (As diagnosed by allergy specialist) I subsequently discovered that soya and coconut were not good either. So I avoid all those things as well as gluten and lacto! Really great when you go out to eat in some restaurants!!

    On MP I felt nauseous, my guts were not happy and I felt somewhat "out of it" As soon as I went on to Actavis only I felt OK. I did mention it to my GP but no action taken!

    I think the trouble is you have to move on to some other brand, you feel better and then you forget how awful you felt. Also I didn't even mention that I felt unwell on MP until some time after change to Actavis. I had what would be classed as vague symptoms I suppose and trying to see the GP when you are really ill is difficult enoough never mind to let them know about something"inconsequential"!

    Hope you soon find some answers/feel better soon.

  • Crimple, we certainly are all very different in what we can tolerate. Have done exclusion diet under an allergist and only wheat came out of it, so have been gluten free for about 20 years now. Also no problem with lactose. The trouble was, we were assured that nothing could be wrong with MP Levo for so long I began to believe them and was on it for about 2.5 years, also my son, who luckily has not been affected as badly as me. He is now on Actavis and improving. I tried Actavis a few weeks ago and only managed 2 days before my stomach started complaining (bad pains). I had tried Actavis some years ago (between Norton and Goldshield) and the same thing happened, so I hoped that maybe they had changed it in the meantime. Unfortunately this has not been the case for me, so I am sticking with Aliud (self-funded) until I see the Endo (hopefully soon). You were lucky to have noticed other symptoms very quickly, wish I had. Ido know of a couple of others who were hospitalised with problems from it.

  • I was on MP and also Wockhardt, chemist just kept changing them. I felt awful but as also on other Clopidogrel and aspirin from heart attack I presumed it was my heart. I found out that there is colouring in all weights of levo apart from 50mcg Actavis. I changed immediately and a lot of the symptoms cleared up. I can't remember what they are as I still have brain fog!! Although I should be on 25mcg I make a point of only getting 50mcg Actavis and use something sharp to cut it in half, it does have an indentation on it which makes it easier. I have also increased it myself slightly to about 35-40mcg and also take 3 Nutri Thyroid and I feel so much better. I take it at about 7am and then breakfast of a couple of eggs, gluten free fruit bread, banana and an orange along with all my supplements, magnesium I take at lunch time at least 4 hours away from thyroid and I also take it with dinner. My supplements are Ashwaganda which has really helped with my response to stress, D-Ribose which has given me energy, B12 1000mg sublingual and vitamin D3 spray 3000mg, my breathless has completely gone and my friend remarked on it, she was more breathless than me. Zinc, a good multi vit, vitamins B-100 from H&B, CoQ10 200mg Ubiquinole, Krill oil, Brewers Yeast, and vit c time release 3000mg. I also carry around Rescue Remedy in case of an anxiety attack but I haven't had one for months now. I try to be gluten free and don't take sugar. Although I did have an Easter cake, or two, or maybe three!! I might try to go onto NDT at a later stage but I don't want to rock the boat. I did also go to a naturopath who gave me a herbal tincture to help with anxiety, and it really has worked. I also go for 2 good walks a day, even if I don't feel like it, once I am out I enjoy it and I walk fast. I am also making myself lie in the sun, I used to think that the chores were more important, I am more important now and I make time. I drink green tea and I make myself some superfood raw smoothies. Oh and do try and get to bed by 10pm, it has made a difference to me.

  • It is always good to know what others are taking if it improves their heath, so thank you for posting this information Dramlouie.

  • Am perplexed. There is no colouring in any UK levothyroxine or liothyronine medicine.

    (Many foreign products are coloured - e.g. Uni-Pharma and Synthroid and Levoxyl.)

  • I found out that there is colouring in all weights of levo apart from 50mcg Actavis.

    Dramlouie, maybe you were looking at your levothyroxine tablets through rose tinted glasses? All UK brands of levothyroxine are (and always have been) white, regardless of dose.

  • I think I was having a bit of brain fog when I wrote that, I think I was looking on the US site. Mind you, when I told the doctor they didn't know what was in the tablets anyway or point out that I was wrong. Got to go, the sunny garden is beckoning me, got to make the most of it!

  • For my husband and daughter and granddaughters it makes no difference what manufacturer of levo or T3

    They are all synthetic and often have been processed via methylated spirits

    If you are chemically sensitive the minutest amount will cause horrendous symptoms

    and extreme joint pains

    I am not a thyroid patient but the tiniest remotest contact with food that's been anywhere near Aluminium /foil and my symptoms are horrendous so I fully understand the drop in Olympic size swimming pool theory which Homeopathy works on

  • Luckily no joint pains since keeping Vit D3 up to scratch. Everything vitamin and mineral wise seems good,it is just the dreaded Levo and I cannot seem to sort NDT as yet. Have got some Nature Throid on its way, so will keep trying. Think it is going to be very much trial and error with me now. and hoping Endo will be able to help me now, even though he could not in January!

  • Hi,

    My eczema returned when I was MP Levothyroxine but, now I'm on Armour thyroid it's much better. I think the link for me could be the fillers as I'm intolerant to Lactose.

    Good luck with your endo appointment.

    TT x.

  • Thanks for the information TT. I'm not intolerant to Lactose , but have been wheat free for about the past 20 years as this was a problem. Have tried Thyroid-S (not good for BP or strength) and am now awaiting Nature Throid. It is all such a minefield. I did really well on Goldshield Eltroxin and cant believe that Mercury Pharma is meant to be the same. Not for me it wasn't.

  • Hi J Bee,

    I hope you get the Nature Throid soon. My brother-in-law was on Eltroxin for many years until recently when his brand was changed and he's not been the same. He's always tired, feeling cold and lacks the energy to go out, whereas before, he was always out walking and more fun to be with. Big pharma are only interested in profit rather than patients.

    Good luck.

  • The Nature Throid came this morning and at the moment I am awaiting a call-back from the GP as had a bad night last night, with burning, hot and cold and shaking. If he is no help I will have a go with the NT. Such a mercenary lot, Big Pharma and most doctors too nowadays. Wonder what happened to the caring profession!

  • Hi,

    I have those symptoms and I think it's because I'm still under medicated on the Armour thyroid. I take 3 half grains every morning but I know by the early afternoon that I need some more because I start to get the shakes, feeling cold, cannot concentrate and forget everything. Have you had any joy with your GP now?

    TT xx.

  • Hi TT, GP phoned at 8.20pm last night. Said I really need to see Endo and if appointment did not come through within 3 weeks to let him know andn make appointment at surgery. As he hasn't helped me yet, I am not holding out much hope! Feel bit better today, but very weak and wobbly. May try and up the Nutri Adrenal a bit, but haven't been able to in the past.

  • Hi j_bee,

    So, is the GP prescribing anything for your thyroid? Have you decided to take the Nature Throid instead?

    TT x,

  • Hi TT, GP just prescribing Actavis Levo at the moment, as we think it is some sort of chemical problem. Independent Pharmacist will see what he can do. May have to try Nature Throid, but am frightened of change-over of meds as NDT makes my BP high.

  • Have you been overdoing things or been under stress. Maybe you had a bad night or eaten something. I kept having the same thing when I eat out, after numerous doctor visits and a visit to the a&e I worked it out that I had a huge jacket potato before one episode and some gluten bread before another, both about 40 minutes earlier. So reckoned it was a sugar spike that set off an anxiety attack although I wasn't anxious before. I have now learnt to watch what I eat. If I have an episode I make sure I go back to the routine that I know suits me, a gentle walk etc, get an early night and do some meditation. I hope you feel better soon, its such a horrible feeling. I went to a naturopath who gave me some herbal remedy which I take every day and I haven't had a problem since. Good luck. Lou x

  • Hi Dramlouie, No more stress than usual, in fact not so much. Have been gluten free for about 20 years and food is not the problem. No change in diet or timing of meals. This is purely down to change of Levothyroxine and has made me very chemically sensitive. Naturopath sounds good, will give it some thought.

  • I am on 125mg of MP levo and boy has this post just slotted everything into place.I had a job getting my meds higher as some of my practice gps didn't agree with me .But I have never felt well properly since 2006 when I was diagnosed, awful brain fog ,joint pain etc while trying to work full time with small children and GP'S have never mentioned trying different brand .

You may also like...