Progress - but for how long?

Palpitations, tremor, dizziness, exhaustion, weakness...this is what taking T4 to 200mcg did to me, whilst increasing T3 alternately up to 60 mcg.

Having seen the lovely Dr S again this month, he agrees that T4 is probably not doing me much good and I should try being on T3 only for a while. I am fortunate that my surgery just issues repeat scrips without me having to see the GP.

So, 2 weeks later on 60 mcg T3, and I am starting to feel a bit better! I am waking up by myself in the morning, the tremor has eased up a lot, not so tired and weak, not dizzy - Whooppee!!!! could I be on the right road at last? Dare to hope a little...

And then - I come on here and see that T3 is running out - now I am starting to panic somewhat. I will put a question up about how to get supplies and cross my fingers, but my hope feels crushed. Maybe I will have to look at asking for a trial of NDT.

I bet they would never run out of Insulin, or statins, or betablockers...

Sorry, that last line was a bit sour - but we do at times truly seem to be ignored and not valued, and my heart goes out to all on here who are struggling - Hugs to you all xx

19 Replies

  • No, your last line wasn't sour. It is the truth - will they fund your T3 no matter what dose makes you well? I hope so.

    I am glad you are feeling so much better on T3 and hope it continues.

    Levo was not for me.

    Best wishes

  • Thank you - I will see my pharmacist asap to set the ball rolling, just in case. I wonder how many people suffer on Levo?

  • I think a lot otherwise people wouldn't be searching for info thus the 8,000+ on our site. Many people don't have internet connection either.

    Also doctor's keep some undermedicated so they still have symptoms.

  • Or antidepressants!

  • Dr Lowe says that it is reported that T3 (Cytomel - USA T3) has:-

    "NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.) and

    Below is a list of potential harmful effects of amitriptyline

  • Levo isn't for me either. I'm currently on 175mcg and due to increase to 200mcg in four weeks time. It's had no beneficial effect on me so I'll be asking Dr S for NDT when I see him again. I want to come off Levo completely.

  • I was on Levo only to start with and had to fight the Endo for a trial. Even though I did not feel much difference, I said to him that I did in order to stay on it. He wanted me to reduce the T4 too. Then I managed to see Dr S in January this year, and at long last had a grown-up discussion of a range of options. Fingers crossed for you.

  • Hi Hiphypo,

    I'm sorry you are going through this and I can understand your sour note about other drugs but those that need them they too suffer difficulties getting them, I know I'm one of them!

    I was diagnosed with thyroid cancer following various inconclusive tests and finally a partial thyroidectomy on the 28th February this year. I am now hypothyroid and now need Levothyroxine but my dose doesn't work and it will take time to get it right but I am also diabetic. I was diagnosed with type 2 diabetes on 28th August 2008 and was not supported by my GP. The one that diagnosed me called me fat and said I needed to educate myself with my condition. Her answer was Metformin and I questioned controlling my blood sugar with diet and exercise, no support there! Her response was to get on the meds and I ended up arguing with her and just took the prescription to get out of the surgery. I was angry and in tears at being treated like this but I didn't do the meds. I was then ignored by my GP practice and never received any follow up, I had to chase them. I then saw a different GP who had the same view that meds were the answer even though I'd modified my diet and lost weight. My sugar levels were coming down but not enough. I asked for testing strips and a meter so that I could work out which foods were causing the blood sugar rises and he refused. I bought a cheap kit and started testing and found that my blood sugars were rising very high when I ate unrefined foods and these are not supposed to cause blood sugar rises. Anyway, I couldn't afford the test strips because I'd lost job and job seekers' allowance of £70.00 per week would not stretch to buying test strips that cost £30.00 and did not lost 1 week. I started following a low GL diet and my blood sugar came down further but not within the normal range. I decided to take the Metformin SR tablet provided I could get the test strips and meter and low and behold my GP gave in! Three months later I had a follow up appointment and my blood sugar was nearly in the normal range but I had another blow to encounter. He decided I couldn't have the test strips anymore his reasoning was that they were too expensive and we are in a recession. I had to argue with him and he quoted that the NICE guidelines said that I wasn't allowed them as I was T2. I argued back and said that they do recommend them and he backed down. During the same appointment I mentioned that I still didn't think I was a diabetic because I had had some night time hypos and one at work (I'd just started a new job) and was concerned because the first aiders didn't know what to do. He said that Metformin doesn't cause hypos. I said perhaps I'm not diabetic and it could be linked to my hormones and he said that my TSH was normal. I didn't know that they had tested it and was shocked. Needless to say my so called diabetic nerve pain that I was getting investigated at the same time turned out to not be that and my thyroid cancer was found on a CT scan. If I hadn't pushed to check it out I would never have known and that ticking time bomb would still be inside me. My endo confirmed that I'd had the cancer for 4 years the same time as I developed diabetes. I've since researched and found out that the thyroid can cause a whole host of medical problems if it is not working and I was told 17 years that I had a slight hormone imbalance that wasn't worth treating. I may have had Hashimoto's or some other underactive thyroid issue that put a strain on my thyroid because it wasn't treated and hence thyroid cancer. I just don't know but I'm going to find out.

    Anyway, please don't belittle the efforts of sufferers of other medical conditions. My dad was T1 diabetic on insulin and I saw him suffer before my very eyes. I was a little girl when he was diagnosed and it really affected our family life. It doesn't matter what medical condition you have it is a strain and a worry regardless of whether you can get the meds or not. The supply of T3 is probably due to low production/supply because it isn't normally requested as the first choice of medication by the medical profession and the more lay people like ourselves request it the quicker it runs out.

    Try not to let this get you down, I think I'll need T3 because I'm sure I cannot metabolise carbohydrates and I think it is the conversion from T4 to T3 that is my problem because my blood sugar is through the roof and I'm on the meds. Only time will tell!

    Good luck and fingers crossed for all of us.

  • Hi Thora,

    Thank you for taking such trouble to reply in so much detail to me, you have come through so much, I feel a complete lightweight now.

    I am sorry you thought I was belittling other people with illness, I wasn't at all, it was the incompetent supply system that made me so frustrated.

    I agree it is a huge worry for many people and really does not help anyone with chronic conditions. Thank you for your encouragement and support - I am at a bit of a low ebb.

  • Hi Hiphypo,

    Please accept my apologies for the rant yesterday, I get fed up with people bible bashing diabetics, and I've been treated really badly since I was diagnosed with the condition.

    I now know that the diabetes has been triggered by not having my hormone imbalance treated after the birth of my daughter 21 years ago. After 4 years of investigations following her birth and being told I had a hormone imbalance but "that is wasn't bad enough to treat" and been offered surgical procedures instead, this diabetes and thyroid cancer may never have happened if they'd listened to me. But I didn't have the knowledge nor social standing to question the medical establishment of the time. Things are different now and with the support of yourself and others on this website I am starting to feel empowered!

    Once again I apologise and thank you for being there.

  • No apology necessary, you did not come across as ranting at all, just telling how it is for you, and I thank you for that. I hope you are getting well, or at least getting on the way x

  • Reading your story it's like a mirror of me I get exactly the same symptoms but am on T4 only I have had these symptoms since being hypo and on T4 I am hoping a get a private referral to see an Endo just waiting on the gp now, good luck I hope it works really well for you and get your health and life back xxx

  • Thank you and the best of luck of luck to you too x

  • I have personally experienced shortages of 2 drugs i need everyday, and i know the stress this can bring. Hydroxyzine had shortages for over 2 years, the factory producing it had burnt down. It was a long process with my pharmacist having to source in America. Without this drug i would have been house bound again in great pain and back to peeing every 10 mins day and night. I got hysterical at the thought of this. I asked my urologist if there was an alternative and there wasn't. A few months ago it was gabapentin. I use this for pain relief. What is happening is drugs are being sold off abroad at great profit. It seems we are at the back of the queue when there's money to be made.

  • I have heard a little about this - it is baffling that drugs bought for this country's sick people are then sold off as you say: it should be illegal. So sorry to hear of your difficulties, hope they are now eased x

  • Anything to make a fast buck these days! These are drugs chronically ill people need every day for the rest of their lives. A pharmacist I got friendly with told me even insulin was at that point in short supply. And they wonder why people buy drugs online. With the hydroxyzine it's used in Interstitial Cystitis to dampen down the mast cells which produce swelling and pain. A lot of people were even resorting to the syrup form, we IC'ers were quite honestly frantic for a 2 year period. Of course all the extra stress make the horrible symptoms even worse. The factory that burnt down took ages to be rebuilt, and then the machines that produce the pills then have to be licenced. The NHS was really stupid to rely on one source of this drug, sound familiar??

  • good luck to you I am suffering tremors, really horrid even holding a glass of water. very noticable. headaches, weakness, tired, brain fuzzy. on 150mg throxine GP wont give me t3. wont consider it. We dont do that here. great with they could suffer for 6 months. then wed see

  • This is awful - can you ask for a referral to the Endocrinology dept? That is where the T3 prescription has to come from in the first instance, I believe, not the GP. Please don't give up - best wishes x

  • Hi can i ask how are you now doing on your T3 are your symptoms subsiding x

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