Hi all hope you are hanging on in there with this awful disease.
I have been to see another Endo today not much better than the last one.. Not interested in symptoms only ranges.. She has taken me off of Levo, as I told her I am not going to take it any longer as I am still very ill and I want to die.. [ she was shocked to hear that] but this is my life and i'm not being medicated correctly and left for months on end until they follow me up in clinic.. What's the point taking tablets that are making you worse and not treating this awful disease.. So she has now put me onto Liothyronine Two 5 MCG Twice daily.. I am so scared to take this new medication, please can you guys advise me please any feedback greatly appreciated.. Also does anyone else suffer with numbness.. I have now decided to seek out an Endo professor at Christie's Manchester Hospital, has anyone been.
Thank you all for the advise you have given me over the years..
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How much levo were you taking? Do you have any lab test results to show how well you were converting? 20 mcg T3 might be rather a high dose to start on. If I were you, I would start on 10, and increase by 5 every two weeks. Then when you're on the 20, hold for a few weeks and go back for a test.
Hardly surprising you didn't feel well. You were grossly under-medicated. Your FT4 was very low, so not surprising your FT3 was low. You didn't have enough T4 to convert. Why didn't your endo just try increasing your levo?
Your nutrients were also very low. And that would have added to your feeling unwell. Have you been supplementing them? If they're not optimal your body won't be able to use T3, either.
Hi goose, hope you're well thank you for the reply.. I am still so very ill and have started the T3, and am doing what you suggest taking 5 x daily morning and evening, and will then take the other two like you have advised.. How long does the t3 take to start kicking in, also do you think I should take some Levothyroxine in between.. Yesterday I only took one T3 in the morning and went out shopping in the afternoon, I thought I was going to collapse with awful pains in the stomach and generally feeling so il so needed to go home..extremely hot and so very pale in the face.. Also I have this numbness in my two fingers, thigh and face still.. my gp has sent me today for urgent bloods due the pains in my stomach and urinating every 20 minutes and terrible insomnia.. She is now testing for diabetes and vitamin b12, Folate, c-reactive Protein CRP,
Electrolytes and Creatinine, FBC, hbA1c, Liver,Urea, Vitamin D, surely these should have been done on Monday by my stupid ENDO, whom I am not going back to see ever again, she was totally useless and not interested in symptoms just ranges which were all out of kilter.. I am having also terrible pains in my eyes and ears and cannot think concentrate.. Please can you advise.. MY gp is sending me to see another Endo in Leeds, but to be honest I have lost faith in them all..
Personally, I wouldn't split a dose of only 10 mcg T3. I would take it all in one go. That would flood your receptors better and increase your chances of absorbing a decent amount. When you get to 20 mcg, you can split it if you feel the need, but I'm of the Dr Lowe school of thought and think taking it all in one go is often best.
T3 is rapidly absorbed, and acts almost instantly in some people. But, you have to be taking enough. And, at the moment, you obviously aren't taking enough. BUT hormones have to be started low and increased slowly - the body just can't handle huge doses started all at once, and it would probably make things worse. We have to be patient with hormones, they don't work like aspirin.
So, while you're waiting to find your sweet spot, start getting those nutrients up. That really is an essential part of recovery and healing. Nothing is going to improve if you don't have optimal nutrients.
Hi Greygoose, I hope you are well. So sorry I didn't reply to this post {Brain Fog} I am still feeling so very ill Nov 2019, with awful symptoms from head to toe literally. I do not have my recent blood results yet, cant seem to find them on the EPR system and endo secretary has said I will have to wait to discuss them with my consultant on Dec 2nd.
I am now taking 75 Levo daily and 10 micrograms of Liothyronine twice daily, which I have been taking for 6 months now,but still feel so ill, the latest symptoms are violent headaches, diarrhea with awful stomach pains, numbness still around my face and a numb thigh which has no feeling to the let at all.
I am in a terrible place mentally and have thought of ending my life, as this is such a frightening disease. I feel like I am not being treated adequately from my Endo, as I often ask her questions which she cannot answer them. I am thinking of going to see a Professor Trainer at Christie Hospital Manchester to see if he can help me.
Thank you so much for all the support I have received from you guys on this forum., you really have helped me .
I haven't read your other posts but have you had your calcium levels checked as well as other vitamins, B12, vit D, folate and ferritin? The numbness could be related to low vitamins which can cause neurological deficits or it could be a back problem.
Sometimes nerves travelling through the spinal cord can get pinched. I don't know what age you are but if post menopausal then get your bones checked out. You may have several things going on at once causing the range of symptoms. It might not be all down to your thyroid.
Could you ask your doctor to check things that might not show up in blood tests? Bone and muscle problems can cause a range of symptoms such as you've described. I have numbness as you describe and discovered I have bone problems which are now well managed. You might have to unpick the problems as it could be a mix of things. For example, numbness around face could be low calcium levels or something else.
The Endo is unlikely to look at things holistically as they're only going to be interested in the thyroid bit. You might be best consulting a GP. Could you write down groups of symptoms and take them to the GP to get them to look at the bigger picture and each aspect?
It could be worth getting a good sports band that records continuous heart rate and sleep to help give an idea of what's going on.
Iv posted on here previously and said i have a numb left side and face and I honestly cannot feel my left arm in fact I can pinch myself and cause bruising but still no feeling , my GP is a bafoon and simply said... Oh.... wasn't concerned in the slightest and his only advice was to not wear tight clothes 😳 im 56 I have no desire to wear tight clothes , I kept complaining for months and im now having an MRI of my pituitary gland today what relevance this has on my numbness i have no idea though interestingly my medichecks results last month advised me to see gp regarding referral for a bone density scan as my TSH Levels are on the low side , my GP said this was not necessary and was completely unrelated to the numbness , I wish you luck and will follow this post ,
Wow did you ? My whole left side is visibly fatter than the right side infact theres a huge bulge under my left arm but GP wont do anything shall I ask for a referral ? I dont know how to go about it , thanks for the advice
You need to see a specialist Endocrinologist or Neurologist or both ask your GP to refer you out it's not normal to have numbness in your limbs for apparently no reason and a lump, I was told by neurologist that Low B12 can cause numbness "but" my level of B12 was very high because I have always supplemented it with a Multi-vitamin protein powder and then after a better look my neurologist told me you have Extensor Tendonitis (Tendon) that run from top of big toe through the top of foot to ankle was imflammed (today) that toe is still numb but the inflammation has long since gone away...only to be replaced with Insertional tendonitis. After seeing a Psoriatic Arthritis Specialist just this summer my issues stem from a Psoriatic Arthritis Flare brought on by thyroidectomy. Go figure double doomed.
Why did you stop taking your thyroid meds? I've been reading can't stop once you start.
Oh great....bone scan because of low TSH. I did bone scan last year and I was diagnoised with mild osteopenia and now I battle constantly with Endos over (NOT) reducing my thyroid meds I'm telling you they will try to rip all of your meds down to bare minimum dosage because they think having such a low TSH from taking t3 is the cause of osteopenia and osteoporosis and then try to put you just a T4 medication which I blame for 50lbs weight gain.
Little me history show you the lunacy:
I'm a 48yrs old who had a hysterectomy 15yrs ago (cancer)and was a heavy steroid user for most of my life to treat my severe psoriasis that Ive had since I was 4 yrs old.... I had bone scan in 2010 that also showed I had mild osteopenia (I Had a Thyroid and was on NO Thyroid meds) in 2010. Had bone scan last year that also show mild osteopenia(very little change) from 2010 to last year's results.
My bone health (osteopenia) has nothing to do with my TSH levels in my opinion it's a collection of health stuff over the past 48yrs of my life. Now every visit to Endo ends in a battle over bone health vs. My overall Health.
I was NOT put on calcium supplements, Even though my (bone) health was so important to them. I think it's the way they try to down grade your medication...smoke and mirrors.
Just to reassure you on taking the T3. Go for it. It changed my life from being a slug to nearly a butterfly. I felt like I had taken off a heavy cold overcoat within hours of my first dose of T3. BUT, I think you should still take some T4 so you have some stored in your body as the T3 does not last very long in your body (5 hours half life?) so the T4 will smooth out the lumps if you see what I mean.
As for the numbness, check out Peripheral neuropathy and see if that rings any bells. I cannot feel my feet. Hope you feel better soon.
Your B12 might be low, plus your folate ferritin and VitD. We need all these to be in the higher part of their range in order to use thyroid medications effectively.
Hi just read you lost from a year ago. How did you get on with you facial numbness? Been experiencing it for 3 months. MRI negative & hence sought advice from chiropractor, she suggest it might be the meds. Now exploring Vit deficiency side effects of medication.
Yes I am better now. I have TMS. Check out Dr Sarno’s books such as The Mindbody Prescription. Nervous system became over sensitized and had to get the fight/flight mechanism in my brain down.
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