Good afternoon All,
I am struggling to take any form of Thyroid Medication, even tiny amounts set of a very nasty hyper like reaction.
I have been taking supplements & vitamins but their seems to be know imrpovement in the uptake of the medication.
Does anyone know what I should do, I am so very Ill
Hello Moggie,
Yes of course, sorry. My heart starts pounding, my breathing is laboured, the top half of my body and face starts to burn, goes red and then I start to sweat, It pushes my pulse up, I get Sharp pains in the chest, I get nasty pains in my breasts and I have too much energy. All I am taking at the minute it a quarter of a Cynomel tablet when things get unbearable but this has been going on for so long and yet I can't get anymore in. x
Cynomel is T3 so you it is much stronger and fast acting than levothyroxine, you must act carefully. Do you spread doses over the day? Did you try Facebook group lead by Paul Robinson? ( recovering with T3 only) You should get lots of good advice from there, and of course discuss your problem with a doctor, but I am sure you know that ( hopefully you have a good doctor that listens and know) . I wish you feel better soon . E xxx
Hello Edysia,
Thank you for your reply, I am working through the Paul Robinson Book. I am in the middle of changing doctors. I only take a quarter of a tablet of T3 sometimes only once a week, I do not understand how this can be to much. Things are unbearable - I can't take the medication wether it is T3, T4 or Natural the effects are the same x
Do you get this reaction just with the cynomel or have you tried lots of different tabs with the same effect? I could be that you are allergic to some of the fillers used in the tablets maybe you could ask your doctor for liquid thyroxine to try there are some alternatives to the tablets. The other option is that you cant tolerate thyroxine then the option would be armour or t3 only. You could also try nutri thyroid to boost your thyroid but other people will know about that than me good luck!
Hello,
I have had Nutri Thyroid, T4 & T3 and the effects are the same. I have not tried Armour, do you think I would have a better chance with that?
I really don't know if armour would be better i know they can be built up very slowly in really tiny amounts, there are people with similar problems to yourself that may be better helping you im sorry i cant help you more its such a difficult situation to be in
Thank you - I appreciate your response,every bit of info helps, put all the pieces together and you get to see the whole picture. Best Wishes
Hi What is your TSH, T4 and Free T3? What drugs have you tried? Did you start with a really tiny amount twice a week, then only increase after 2 weeks, etc?Some of the drugs can certainly make you feel like this., especially to start with.
Best wishes,
Jackie
Hello Jackie,
My TSH varies all the time from being really low to being rather high, I do not know what my FT3 or FT4, my doc was very unhelpful. I am in the process of changing my docs. I have had the T4, Nutri Thyroid and T3 but the outcome is always the same. I only take a quarter of a T3 tablet a week - so I don't think the dose is two high, I feel something else must be going on but I do not no what
Hi Are you taking any T4? If Graves it can swing between hyper and hypo. In your place I would first find a really good Endo,( NHS or Privately) then ask for a referral from the GP. Do not rely on GP`s choice. An Endo not a private doctor specialising in thyroid. Louise has a list of a few louise.warvill@thyroiduk.org. If none suitable, I find my consultants myself by researching carefully. If you want to do this get back to me. A good Endo will also do all the tests you need. If privately, on request, they will ask the GP to do specific tests that you need, NHS, drugs from a consultant are always given on their instructions by a GP, unless something not recommended. My GP will not give me my Armour, but happy to give T3. I see a lot of consultant privately all do this, as GP responsible for all meds given to you.
Jackie
Hello Jackie,
I have had no T4 for approx 3 months, just taking the T3. I will e-mail Louise about the endro's. I have seen one endro and he was more unhelpful than my doctor. I have never tried the Armour Thyroid but at the minute I feel it would just do what all the others are doing. The sad truth of it is that I am less Ill off the medication.
Best wishes
Hi The important thing is knowing what your T4 and free T3 are, not good to take any T3 without knowing that. T3 must always be in range for heart. You can use Blue horizon, as I have to now for the 3 thyroid tests, main site on the WEB quote TUK 10 for a discount. Finger prick or venous blood, do not go through a private hospital, even with them. £60-£70 , they are a very well known Lab used by the private hospitals, so if you show the results to a doc they should treat on them. With T3 or armour etc which contain T3,essential to have a blood test before starting and after 6 weeks on treatment, TSH, T4 and Free T3. I would not see any consultant without being sure it is the right one by your own research, like all people vary.Some people find they need T3 without a preservative in, is obtainable with a private script.
Best wishes,Jackie
Hello Jackie,
Many thanks for this, I had the free T3 & T4 done by the NHS endro I saw last month, Is that exceptable? I do not know what the results are but will find out (they seem so secretive over the blood test results) My concern was that taking T3 alone would suppress the TSH function and effect the test results, however the tests never seem to in line with how I feel
Best wishes
Hi Always insist on results, for any bloods, with ranges. It is your blood so you are entitled to, some times a battle. Also keep them. You must have the ranges as they differ, Lab to Lab. For hospital, back the next day, some consultants put them in the letter( GP`s ) make sure you ask for a copy. Otherwise, phone the sec and ask for both.GP always ask the receptionist for them.Often what a doc says is Ok not so for us, all different.The best treatment is considered to be T4 and T3, if bloods show this is right for you.If as sometimes happens your FT3 is high the you would actually be better on just T4. Most people find that best with T4 top third of range, and FT3 just under top of range, but never over. Frequent retests until stable. TSH is a hot subject. Some docs now are obsessed by it, but it was never so.If I had been treated according to my tSH and not my below range FT3, I would never have been treated. When I was overdosed many years ago, it was with armour which as I am sure you know is T4 and T3.as no T3 then and I cannot take any makes of levo. When started seeing my Endo, 10 years ago, she vastly reduced the armour and put me on a little T3, was stable within a year, after lots of struggles. I thought it was just still hypo, private doc, no bloods, no WEB or on line bloods then. Now because of serious heart failure etc I have tests 2 to 6 weeks, depending what else is happening. I keep my FT3 high in range. I hope that helps. It does take a while to get the treatment right with lots of blood tests and alterations in doses, generally up.. If you get your results and wish to put them on the Forum or if you prefer send them on a PM to me, click on my name. makes sure your Endo did all the tests you need, check and get the results + ranges.
Best wishes,
Jackie
Hello Jackie,
Thank you for all this info, you have been very helpful.
I have got a phone appointment Friday with my Doc - something has been picked up from the results done at the hospital, I will get the results and post them. I hope with all that you know & have done that you are now well and not suffering at all. Best wishes
Good, hopefully it will help you. Thyroid been stable years now, it is my other things that are desperate, especially heart. Also PTH, that came out of the blue. If you have corrected calcium over range, you have to stop Vit D, it still over range, 3 blood tests for PTH , then nuclear scan etc.Mine is very bad but too ill for surgery, so hoping for the best.
Hope things improve for you soon.
Jackie
Hello Jackie,
I am so sorry to hear that, Theirs me grumbling on and you are so pooly to. I really hope things improve for you. Take care Jackie and thank you for all you helpful information x
I had exactly this reaction to my first prescription for 100mcg levo . FThe GP and endo said I had to start that high so there was no gradual build. I ended up reducing and reducing but still not helpful. For me main issues were adrenal / very low ferritin and very low vitamin D.
Hello Sarah,
Thank you for your reply. I did read about low doses causing Issues but I's suprsied they started you on 100mcg, I was put on 25mcg and couldn't get an increase. My vit D levels & Iron were very low but that has been corrected. My private Dr said I had Adrenal fatique but I can't take HC anymore coz of the reaction I get from that, so I am guessing that they are functioning better than they were. Their seems to be a reaction to the medication but I do not know why, if the body produces it how can their be such a reaction?
Hi Kitten sorry I was trying to use my phone and the cursor wouldn't curse!?!? (but I did)
I am experiencing really weird reactions when I encounter adrenaline e.g. at the dentist - now have to have adrenaline free anaesthetic and am fine. I was also really whacky last week with symptoms similar to those you describe after a minor minor injury with a tree - so I guess hyper Adrenaline reaction again!?!?
I am on one kidney which might make a differnce and seem to do best with adrenal support via Nutri and T3 only in the form of cynomel. I ma trying to write a letter to my GP and endo at the moment and one of my questions is the same as yours - why such a big reaction to adrenal / thyroid hormones.
I saw Dr BDP when it was really bad and he took me off everythign except Vit C 100mg per day for ten days and I felt great. Thne we started building ain using Nutri thyroid and Nutri Adrenal seemed a gentler way in . Not right yet though! Am now trying to address the autoimmune aspect starting with anti - candida regime.
Will let you know if I am brave enough to send my letter and get a reply.
Hello Sarah,
I have also seen Dr BDP, I never thought of just taking the Vitamin C on it's own, sadly I couldn't have the nutri adrenal or Nutri thyroid - they went straight through the system. Good luck if you do write your letter, I was going to do the same, just to let them know how i feel about the lack to treatment and support. I am now no longer with the surgery but still might to it anyway. I look forward to hearing from you
I had the same reaction to all thyroid meds levo ,armour were all tried...I went toxic ..didn't take anything for some time ( I have written many blogs on this .( my endo knew i had stopped ,dont do the same unless you discuss it with gp or endo) to get to a good base line and feeling less anxious ,sweaty ,surges and funny heart ..I then started the Cynomel in tiny increments 1/8 of a tablet for a couple of months ( following Paul robinsons book) then a 1/4 and so on..I have been on T3 Cynomel for 3years now and I find I'm fine on 1/2 tablet x2 a day ,1/2 in early the morning and 1/2 afternoon...Not everyone needs high dosing take it slowly and small amounts and build up....I did have a blip midway through my build up of dose.and after blood tests found low ferritin ,vit d ,and B12 even though I was taking supplements..so had to up these also ( and infact that was a slow process as I got the hyper stuff going on with supplements also! ) I react to most things even foods! Good luck ,you will get there in the end!
Donna, thank you so much for this - I was begining to think I was the only person having these reactions. I am glad that you are well now and on such a small dose. I am working through Paul Robinsons book too. It sounds like I need o get my Vit D & Iron tested again. Did you have Adrenal Issues, does the T3 just rectify that or did you take HC? You have given me hope x
Donna, how has this evolved for you? Any further insight?
I've gone through considering fillers and trying all different forms of the medications out there. Even tried thytrophin. Reactions are excess brain excitability, physical clutziness and inability to recall short term facts within minutes after they've been stated. I've broken toes twice in kicking corners, all during these trial med situations. I do not suffer clutziness when off meds and the recall issue is much more mild, and easily managed when off meds.
I was tolerant of the same med (Armour) at around the same dose for almost 15 years. Then I started to note having more ADD like symptoms around taking it and it continually got worse.
After 2 years of trialing back and forth, finding progressive improvement off, and progressive intolerance, I'm generally off meds and functioning better.
While I function a ton better off meds overall, labs and the potential connection to heart & vascular challenges leave me concerned still. Still searching for answers w/docs, but the road has been unrewarding, costly, and tediously long so far. The risks that have gone with trialing meds has been that it has notably affected my cognitive and recall functioning as well as physical functioning to the point it's negatively affected my job and day to day operating.
Ps I'm under the care of hospital endo,but Dr P was giving me advice..have seen 3 private Drs since diagnosed seems like a life time ago!i was in such a state and had a TSH of over 60 in the end ... but Dr P (4 dr) was the best..
I think the T3 ( by itself) works the best..it doesn't need converting just goes straight to spot and does its job well..
Xx
hi kitten whiskers my message overlapped yours! Dr did suggest I take HC ...but had bad reaction to that! ( just for a change....) I was then diagnosed with Lupus ( and now a huge bag of other autoimmune stuff) so there was a lot going on in my body that at the time no one could for see .l managed to take Prednisalone ok...( which was a surprise!) prescribed for my lupus ,but i felt good when taking it but even after tapering the dose, I came down with a bang and felt really rough..the adrenals are boosted then are left wanting when the meds are stopped..which is not good..I wouldn't say I was feeling well now ( because of all the other stuff going on ,who knows which box the symptoms come under) but I I'm feeling better than I was..no sweats ,palpations ,surges and anxiousness...result!xx
Hello Donna, I also had a reaction to HC but also Prednisalone - that was terrible for me. Oh dear, do you think we are not going to get better. I don't want to put up with this for the rest of my life. I did wonder if I had Hasimoto's but I've got to find a good GP, I really feel my life is over and at 32 I was hoping for a better future than this x
Hi Kitten whiskers,sorry to hear you couldn't tolerate the prednisalone..I think you should concentrate on your folate B12, vitD levels..as the lack of these building blocks hinder absorption of thyroid replacement meds levo ,T3 and armour..read and learn about your condition ...
You ask will we get better? Who am l to say!Who ever knows what the future will bring them? Best laid plans and all that! s@@t happens and you have get on with it I'm sorry to say!
As you might read my reply to Sarahstevenson below..my labels are rolling in like the tide!They are all Incurable diseases I have ,but some respond to treatment ( if you can tolerate it) which hopefully can hold back the tide in some conditions others you just have to put up with..so many boxes ,which provided only one or two open at the same time I can manage and cope..it can be overwhelming if l let it all creep in my brain the more boxes open the worse l feel! but cant let it all get me down!they certainly alter my body and what i can do but I'm still me! Inside..you can't throw in the towel and give up! You can live well with illness..I certainly do..l take control of me ..what I eat ,how I exercise ( move I mean!) rest ( pacing) how I think ( positively!) No one wants to be in the company of a mishog! I get regular facet joint injections which make me more mobile..which is good ,you have to look for the positive! Always!DONT put your life on hold ,constantly putting off things till you feel better or feel more like doing things .bit like not going out because you feel your to fat..and waiting till you have lost a couple of pounds or stone..you miss a lot of days ,months and then years just WAITING!! This might not be the one you imagined but it is your life!,, ( just without the red book !)
Sorry to go on but things can always be worse! Don't get sad get angry !tears don't help much but crossness and anger in your personal situation give you a bit of oomph! And back bone so you can fight in your own corner...start by sorting out a new GP!,
With very best wishes Donna x
Hello Donna,
I admire your way of thinking and your outlook on life. I understand where your coming from and I have for many years been determind to get well, but I read all these stories and not seeing much evidence of people getting better, and I just feel like I am lieing to myself, I do not want to be in the same boat I am now in five years time, I have really had enough. My life is miserable. I have changed my docs and wilt some luck I will finally get somewhere x
Hi kitten sorry your so down xx just been to the blog and book suggested by Sarah below....it is basically the approach of the 3 private Dr I saw at the Hale clinic in london.he did really help sort out a lot of problems for me...leaky gut,gut diabosis,candida,food allergies food intollerence,border line diabetic....all improved and some cured by diet and lifestyle approach ..he prescribed lots ( pure encapsulation) and my health as mentioned improved...not cured as Hashi's will always be there but it improved my quality of life...he poor man what else was going on at the time when I reacted to all the meds he prescribe..the toxicosis Hindsight is a wonderful thing..if only we knew what we know now!,it was treating someone blind! Not having all the puzzle pieces!
I am a single mother of 2so not loaded with money but was able to remortgage my house to release the money! Can't take it with you when you go! Xx
Hello Donna,
Wow, you do so well - you should be proud of yourself. I have continued working & doing my studys - I have to keep busy. I don't want to give up and I keep hoping for something to make me well. I so often get Toxicosis - on just quarter of a tablet, its ridicous. I did have a look at that Hashimoto's book as well - it looks promising and I will give it ago. I have not been diagnosed with Hashimoto's but It seems to be pointing in that direction. x
Hi Donna and Kitten - mmm might be worth looking at Izabella Wentz - I have signed up for free to her newsletter " Your Thyroid Pharmacist" and have read most of her book "Hashimoto's Root Cause" - seems that thinking autoimmune rather than thyroid can be a way in.
Great you're improving Donna - I think I am too!
Hello Sarah,
Thanks for this, I will look into that, I'm sure I must have Hashimoto's x
Hi Sarah,I do have hashi's , and Defiantly autoimmune stuff going on with me...i will check out the site and book you suggested you cant stop learning when the goal posts are for ever changing !!I have been ill since 15 (54 now) I won't bore you with the history but since endometriosis after my 1st child..then years of CFS/ME( now know that was not the case )and then having a Diagnoses of MS from a top london hospital ..for three years ( not that either) And finally diagnoses of Hashi's 6 years ago (anti TPO of 2,560) l am now the owner of Lupus SLE,Sjogrens syndrome,Hughes syndrome ,Costrochonditis, connective tissue disease,trigger fingers ,arthritis,fibromyalgia,fowlers syndrome( self catheterise ) prolapsed bowel ( use a Peristeen anal irrigation system) have had two lamenectomy disectomy s..multi drug allergies. And now lots of food allergies..AND now awaiting hospital appointment for new clinic ,Possible Behcets disease...ticking all the boxes.
So something is sure happening in my body!,, and probably has been for years ..it's not until the puzzle pieces roll in and viewed with other pieces that have been round a while that the overall picture changes and Drs get a light bulb moment ,the Lupus came about when my malar rash appeared in the winter sun( now can't go in the sun at all) now with the Behcets it wasn't until the genitial ulcers appeared in July that my GP slotted in the puzzle piece!
With bestwishes Donna x
Hi Donna -
wow wonder if you hold a record of diagnoses - my poor mum was similar, went through lots of invasive surgery and sadly never knew why, always questioning whether it was "in her head" - we know that it's not! - I am 56 and have had a few from Rheumatoid Arthritis , Anaemia, ME/CFS etc etc.
My food sensitivities have gone down - I found vega tetsing by a homeopath helpful in identifying some Big Culprits - I'm not sure it's an absolute method but seems to work for a number of patients.
At the moment I am writing a letter to my endo and GP asking :-
Could I be intolerant of the fillers or whether the dose has changed in the T3 I am taking. (Am on T3 only)
Why I have the reaction to adrenaline which catsndogs describes
What's going on with my lowering Vit D despite their prescribing me fultium 800iu
Why I can't keep iron higher even on their Ferrous Gluconate.
Could they PLEASE look at all my Vits and MIns
I am going to wait to send the letter til December as my son has an appointment with the same dept in November and I don't want to influence his first consultation. His Dad is going with him ( in disguise).
The NHS T3 seems to be a bad batch and I am waiting for my overseas order to arrive.
I am finding that Nutrithyroid seems gentler and to fill the energy gap a little - might be worth a shot - or did you say you can't tolerate it?
PS I love your Avatar - My husband was calling me Mrs O for a few months last winter - hoping I wont be that creaky again - acupuncture and a daylight bulb at the ready with ice packs and heat packs to hand!.
X
So sorry to intrude into this conversation ( sorry Kitten-whiskers ) I noticed a comment by sarahstevenson regarding not being able to have adrenalin anaesthetic at the dentist, needing adrenalin free instead. I am the same (makes me twitch, muscle spasms, racing heart, feel very hot and weird) The post said something about hyper Adrenaline reaction, I wonder if this is something to do with me struggling with my Levo medication?
I am sorry to say that I'm struggling to understand what has been written by the fellow posters, my brain won't play ball today! And my knowledge of all this stuff is very minimal.
I so hope that Kitten-whiskers can get on the right track to progress and great health soon ( and everybody else hitting a brick wall )
Thanks.
Hi Catsndogs - what I found weird was the way the dental nurse seemed to know the problem exactly ( more mature lady not the one with the designer makeup ) and yet the dentist said how could I be sensitive to something that is a natural compound - oh yeah !???! He thought I was just wound up about the treatment. However the much more invasive root canal work with same nurse, different dentist and no adrenaline was fine.
Don't know if it links to the levo bit but I am on T3 only now.
Happy Wednesday.
Thank you everyone who took the time to reply to my question, your help & information is greatly appreciated. I will keep plodding along and any helpful information I get from my new GP I will be sure to pass it on. Take care everyone and keep thinking positive xx
I need to check now sarahstevenson what they are giving me, as one dentist ' accidentally' gave me the adrenaline one after instructed not to, I had quite a severe reaction and the fools never let on what they had done, just watched me in some distress twitching, shaking and feeling awful then kicked me out into the street after my treatment. The penny only dropped later what they had done. I am certain he wanted to see what would happen if he didn't give me adrenaline free.
At the time I wasn't on any Thyroid medication, was on a lot of other medication but no Levo or anything. I will try and do a bit more research into this
Best wishes.
I was so sick and was unable to tolerate any of the thyroid meds. I originally was fine with them from 18-34. Once I had my first child, everything went haywire with my body. With each consecutive child my tolerance for the meds were at zero. my blood work would show low but every time I took the medication, I had symptoms of too much. This was the same no matter the type or amount. I tried numerous times but would experience heart palpitations, sweats, chest pains, sleeplessness, agitation. I tried everything from anti-depressents to heart testing to brain scans, etc.. even went to the premier Thyroid specialist at USC. No one had ever known someone who was having these issues. My body was staring to break down and I was desperate. I could barely function, my thinking was cloudy, I had welts and sores all over. Food had a different taste and I forced myself to eat just to get the calories in. I went from 130lbs to 105lbs. I had no facial expressions and a hard time processing simple instructions and conversations. I was no longer able to sleep or take care of the smallest of tasks. I went from an active, successful business woman and Mom to the shell of the person I was. I searched out Acupuncture and Thyroid and your post came up. It was truly amazing as I am in California and this website is in the UK. I went to see Dr. Huang - Agape clinic, and he started treating me. After 6 months of hell, within 3 sessions, I started my way back to myself. I continued for 9 months of treatment, 3x a week, took the herbs he suggested and avoided the foods he said. It took the 9 months to feel back to myself. Within a month of seeing him I was able to tolerate the thyroid meds. I am still feeling good am in the normal range and my endocrinologist is shocked. I will continue to take the meds and supplement with acupuncture. Dr believes that I will be able to one day get rid of the meds if I follow his protocol. I am just thankful and grateful I saw this post. Through your referral and his treatment, I am back to feeling great. With Gratitude.
Awesome!
Good afternoon Shaynahope,
This so positive and I am so glad you are feeling so much better. Can I ask what herbs you take? I did try Acupunture but sadly that did not appear to help, although I went on to try battlefield Acupunture - which was great for the pain, I had that done once a week but then the ears starting getting really sore and bleeding, and getting the little studs out became very painful so I had to stop, a bout six months down the line i tried again but the pain was not as reduced as much and the ears got very sore very quickly.
Best wishes
Debs
Hello - I am in the exact same situation. Years on Armour with no issues, after first pregnancy couldnt tolerate meds and got worse with second pregnancy.
What herbs did Dr. Huang give you? I made an appointment to speak with hik tomorrow.
Thank you!
Tara
His are labeled/made from him, no idea what was in them. I wish you luck, please let me know how it goes. Super interested.
Does anyone know and take soya FREE Hrt? 
How long does it take hashimotos to destroy the thyroid?
Does anyone know why
Stopping thyroid medication
