Feeling worse before feeling better????

Hi I have been on T3 only for a few weeks, I am now on 75mcg i have had no improvement in symptoms, in fact the pain is worse, I can hardly walk and my hands are swollen with pain in my shoulders, feet, jaw, throat!! Does it normally get worse before getting better? Has anyone else experienced this?? Does anyone know about the protocol Dr Lowe talks about in his book? I can't afford to buy the book so if anyone knows if this information is anywhere else can they please let me know! Thanks in advance! I have tried Levo and Armour over the years but they never got rid of the symptoms! Since being on T3 my pulse is up from 58 to 80 but I'm still freezing, still in a lot of pain, still lethargic, still no weight loss but for the first time in my life ever I have a bowel movement every day! Every cloud and all that!! Thanks for any help you might have! :)

24 Replies

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  • Accunatang, How much T4 or NDT were you taking prior to starting T3? 75mcg T3 is equivalent to 225mcg T4. Perhaps you should have a blood test to check you aren't overmedicated. Overmedication can cause considerable musculoskeletal pain.

    TUK have a lending library. You'll need to check whether Dr. Lowe's book is listed thyroiduk.org.uk/tuk/suppor...

  • Thanks but all the pain was there before I started the T3! My problem is I am deficient in T3 at a cellular level, which means I need more than I was taking before! While I was on Levo and then Armour I was under medicated which is how I had the fibro in first place! I can't be over medicating as there are no symptoms of over stimulation of the tissues! I have been following Paul Robinson book and I'm definitely not over medicating, I don't think I'm at my optimal level dose yet but I just wanted to know if anyone else has experienced this before????

  • I think I have mentioned before on one of your threads - that if your Ferritin - Folate - Iron etc. are not optimal then it can be a problem. Your FT3 reading/result before starting the T3 was quite high in range - so could it be you have increased the T3 too quickly.

    Have you checked your adrenals ? When you are over secreting cortisol it can BLOCK the T3 receptors in the cells....

    So what does Paul Robinson say ? - best to check with him if you are following his protocol.....

  • Ferritin, folate and haem all well in range! Thanks I will have a go of checking with Paul! Thanks

  • Maybe I have increased too quickly or maybe I'm wrong after all and I don't need T3 ? Very frustrating, I have tried everything else! :(. I'm sure it's all linked to my thyroid? So do you think I should reduce the dosage? Could it be that I still have a lot of thyroxine left in my system which takes about 8 weeks to clear???

  • I personally think you have increased quite quickly. I do remember reading on one of your threads - the advice someone else gave you about doses/increases. Think it may have been Clutter - not sure. Maybe helpful to have a re-read of your earlier posts and the answers.

    Did you post your Iron - Ferritin - folate - B12 - VitD results with ranges ?

    Adrenals ?

  • I have re read all my old posts, I spend most of my time reading threads on here, I am seriously desperate!! I started a new business last year but if this carries on like this I will have to stop working, I am single mother with no other income! I HAVE to work!! With all due respect to everyone on here, I have been given a lot of advice but some of it is conflicting! I have bought and read Paul Robinson's book!! I don't follow his protocol to the letter but have been using his advice on increasing dosage, he advocated increasing every 3 to 14 days depending on any symptoms of over stimulation. I have not had any symptoms of over stimulation, I have been spacing out the dosages too,, maybe I need to take it all in one go?

    Ferritin is 120 range 15 to 300

    Folate is 7.3 range is anything above 4.5

    Haemoglobin 130 range is 115 to 165

    B12 238 range is 180 to 900

    For some reason the lab didn't send the vit D result or the cortisol, not sure why, will talk to my doc about it.

    I can't afford to pay for other tests, I have to stick with NHS.

    I am supplementing with Selenium, Vit D, B12 and B complex

    I am desperate, sorry if you think I am doing it wrong, but no one can tell me why not to increase too soon, I read Paul Robinson book and in there he just mentions over stimulation as the main problem so I thought because I have no symptoms of over stimulation then it should be ok?

  • No one has said you are doing it wrong - we are all individuals. It is important to keep detailed records when you are taking T3. Pulse/temps maybe three times a day - but I guess you are doing that. Am presuming that is how you know you are not over medicated. Often thyroid illness takes years before it is detected and does not repair in just a few moments.

    VitD is very important so when you get that result from your Doc it may reveal another part of the mystery. I take 10000 IU's every other day - and I live in Crete ! Your B12 is VERY low considering you are supplementing. Only 10% of that result is available to reach the cells where it is needed. Nearer 900 would be better for you. How much B12 are you taking ? Also How much D ? Better B12 would also help with the pain as it works within the myelin sheath.

    The cortisol serum test is not as reliable as the 24 hour saliva test. However if you are not able to have that test done privately - you could look at http:// stopthethyroidmadness.com. At the TOP is a heading - Adrenal Problems - and within that section are some good home tests you could do - including the temperature one. It may just give you some clues. You do sound a bit stressed to me - if you don't mind me saying.

    I appreciate how difficult it is for you having to work - I have worked all my life with health problems and still do - and I will be 69 in

    September.

    Regarding contact with Paul - you could go to his website - rwt3.com

    Hope you soon feel better....

  • Thanks this info will help loads! I'm not really stressed just in a lot of pain! Can't even brush my own hair! I have lived with the lethargy, cold, no weight loss for years and I don't care as much about those symptoms but the pain is very hard to bear!! I know no one thinks I am doing it wrong but I feel like I am because I have gone backwards!! I think I made the mistake of following Paul's way of doing things when I should have stuck to Dr Lowe! BTW i only started supplementing B12 when i got the low result, taking 1000 per day taking 5000 vit d per day!! Take pulse and temp throughout day and have diary of how i feel and what i take!! Thanks for your help, it is much appreciated! :)

  • ...just give yourself more time and take it slowly....

    Think you would do better on 5000mcg of B12 - do you take the chewable under your tongue one ? Jarrow ? I often take one at night before going to bed to help with pain....

  • Thanks yes I do take chewable one, not same make, only started yesterday! I know I should take it easy but its just the pain restricting me from doing some work stuff! I work weekends on outdoor events, and its the start of the season soon, I'm just panicking about being well enough to go back! Having said that I think I am coming to terms with the fact that I might have to change some of the things I do!! I have decided to increase a single dosage as per Dr Lowe, the spaced out doses have definitely made me worse! Today I took 50mcg this morning and am

    Not going to take my half tab at 11 and another full tab at 4 and I will wait a couple of weeks on this dose then increase! I have to say I feel a bit better this morning having taken 50 together, no lethargy, not so cold! So fingers crossed I am heading in right direction! Thank you for your help :)

  • doctormyhill.co.uk/wiki/Fib...

    Am sure you have come across this amazing website.....

  • Thank you no I haven't, but will look into it today! I am pleased to say that since speaking to you this morning, i took 50mcg today in one dose instead of 75 in split doses! I have decided to follow Dr Lowe protocol as I feel the best I have been for months! I almost feel normal again! The pain has lessened but obviously there is a long way to go but I feel good for the first time in months!

  • Ps How do I contact Paul? Is he on this forum?

  • Yes he is....

  • I just looked for him and he has said he is not getting involved in any private messaging just on here to contribute now and again!

  • Acunatang, how do you know you are T3 deficient at a cellular level? I'm not being argumentative, I'm genuinely interested.

    Do you feel better or worse since starting T3?

  • It's ok I don't mind, I don't know for sure but having read lots of research into my situation, studies done by Dr Lowe, various threads on here, it became quite obvious to me that that was my problem! There are still doubts in my mind but I have read a lot of research papers!! I'm not trying to be clever just trying to get well! No I don't feel better on T3 at the moment because I'm not on the correct dosage! :(

  • Acunatang, Do you feel worse?

    I was very overmedicated on T4 for 7 months with FT4 >34 and it was very unpleasant and painful. I have also been overmedicated on T4+T3 with FT3 considerably over range with very slight tremors as the only hint of overstimulation. Hairshedding and awful nails followed for 7-8 weeks and improved when FT3 dropped into range.

    Hyperthyroid patients experience considerable musculoskeletal pain among other symptoms because of high thyroid hormone levels.

  • My pain started when I was undermedicated! I have no signs of over stimulation whatsoever! I feel better for a short time the day after I increase the dose, but then worse again!

  • I can't really add anything to what others here have said about your thyroid medication, but as Marz has said, you may want to have another look at your B12 supplementation, and make sure it's a sublingual form that dissolves under the tongue, or between your gum and cheek for maximum absorption.

    B12 deficiency is much more common than is usually supposed, especially as the years go by and our digestion becomes a bit less efficient. It can lead to many of the problems you describe. I have PA and I inject the methylcobalamin form every day. My husband is a longstanding vegetarian and we realised very late in the day that it's very easy to become deficient in B12 on such a diet. He tried Jarrow methyl-B12 at 5000mcg but didn't find it effective. He has fared much better on Solgar 1000mcg methyl-B12, which he seems to absorb more easily.

  • Thanks I am grateful for your input, my B12 is under tongue but only started yesterday!

  • Paul Robisoson uses a fairly small amount of T3 split into several doses over the day. He does not have thyroid hormone resistance/reduced sensitivity to thyroid hormone.

    Dr Lowe had thyroid hormone resistance/reduced sensitivity to thyroid hormone and took a single very large dose of T3. The two protocols are completely different as they are treating different conditions.

    If you have thyroid hormone resistance/reduced sensitivity to thyroid hormone then you probably need a much larger amount of T3. I think Dr Lowe took 150 mcg daily. My son takes 200 mcg daily. My son did not feel any improvement until he was above 150 mcg.

    I have compiled information on this and can send it to you by email if you send me a Personal Message with your email address.

  • Thank you yes I realise now that they are both different types of thyroid disease, I am

    Following Dr Lowe from today and after first dose already feel

    Different! I would love the info please, wi send you private message with my email address and thanks very much! :)

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