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i am hypothyriod after RAI in 2010 ,i tried all kinds of thyroid meds but nothing suited me untill my Endo put me on Armour Thyroid starting at 60 grains then up to 75 ,felt fine for a short while but then my T4 started to drop ,its was always around 11-to 13.5 never any higher with a ref range (9-23)>I went to see a new endo last week and she changed my meds to Efra ,with a T4 of 11. .iam still feeling cold most of the time and the last 2 days i have started being breathless with a tightness around my chest .my inhalers do not help with this kind of breathlessness but i have trouble explaining this to my GP or endo they think it is because i smoke.I do go for long periods without using my inhalers.Also over the last years since hypo i have had to have 3 9-00am cortisol tests but have never been treated.This Monday i have to have a camera into my stomach as i have awful nausea since last november and weird pains it also swells and feels like my insides are pushing out to the front of my stomach.Hope some one can help me and please for give me as its left me with a terrible memory ..Thankyou sue

54 Replies

  • I am not medically qualified but I think you might well be underdosed. If you were o.k. on Armour why change it to Erfa. The blood tests for thyroid hormones were, as far as I know, introduced along with levothyroxine so our bloods when we are on NDT cannot possibly be the same if we are on T4 only. i.e. NDT as it has all the hormones and if T3 is amongst it (as it is) it lowers our T4.

    I am not sure about your phrase:

    Armour Thyroid starting at 60 grains then up to 75? 60 grains of Armour would be equal to 600mcg of levo. Did you mean:

    Armour One grain is 60 mg (I've taken this from Stopthethyroidmadness).

    Your symptoms sound as if you're underdosed, ie. breathlessness, nausea, etc etc.

    Have you had a recent blood test? If not request a new one and have it as early as possible and leave approx 24 hours between your thyroid hormones and the blood test, take them after. Ask also for a Free T3 blood test, Vitamin B12, Vit D, iron, ferritin and folate.

    If you've only been taking the equivalent NDT of around 100mcg levo it might be too low for you, particularly as you have no thyroid gland at all.

    Get a print-out with the ranges and post for comments.

  • Thankyou for your reply ,yes your right it was 1 1/4 grains and with efra i am taking a 60 plus 30 ,i have had no palps with the Erfra and maybe i should take another 30 ? or should i phone my Endo first >My last blood test was about a month ago she said my TSh was fine and my T4 was 11 ,i am due another blood test in 3 weeks to see how i am doing on the Efra .armour stopped working for me as i felt so hypo cold no energy ect,and the endo would not increase because of palps

  • You need to ask for a copy of your blood test results with their ranges. Sometimes our doctors say they are fine when, either they're not or they could be much better. Either get them in print out firm or take a little notebook with you and write them down at every visit.

    Have you had your Vit D,B12, ferritin and folates checked too?

    On the other hand I have inhalers (a brown preventative one I should use twice a day and a blue one) that I hardly ever used and I often go had chest pains to the extent I felt I must have had heart problems. I was called in for an asthma check last month, got a really good practice nurse who said she thought I was only taking just enough of the brown one to take the edge off my symptoms - I never used the blue one - and kitted me out with an action plan, a peak flo thing complete with a chart to plot my twice daily efforts and told me to do it religiously for a month.

    My results are still lower than what they used to be ( according to a previous best) but I realised last night that since starting to use the inhaler properly as opposed to when I felt wheezy or breathless or when my chest felt 'fizzy' I no longer have all the weird chest pains and I'm beginning to think I might not be suffering from heart failure after all.

  • Sue, it could be that Armour stopped working for you because you needed an increase and didn't get it. That's the way it works : you have an increase - say from half a grain to one grain - you feel great for a while, but then the symptoms start to come back again. That is normal. It means you need another increase. You body was so glad to get some T3 for a while that it felt wonderful! But after a while, it realised that what it had wasn't enough, so started to feel bad again.

    You are only on a smallish dose, pretty certain you need more.

    Don't worry about your T4. It is of no importance and does not mean that the NDT isn't working. When you are taking any amount of T3, the body does not store as much T4. It doesn't need it, because it doesn't need to convert as much to T3 because you are taking T3 ready-made, so to speak. So, the body excretes the surplus T4 and your level is low. It's not a problem. What is important - and what, in their infinate wisdome they do not test for! - is the level of the T3. And that should be up near the top of the range. TSH is irrelevant, also. It isn't even a thyroid hormone, it is a pituitary hormone and very unreliable. See if you can persuade them to test the T3 in three weeks.

    So, your endo wouldn't increase because of palps. Well, that just goes to show how little your endo knows about thyroid. The odds are thatyou had palps because your dose was too low. Low levels of thyroid are very bad for the heart.

    But so is low magnesium. See if you can get a magnesium test. If not, try a little magnesium and see if it helps. Vitamins and minerals are very, very important - doctors just Don't appreciate how important they are. Best to get as many tested as possible, and supplement if deficient.

    Hugs, Grey

  • Grey..the inhalers could definitely be part of the problem, apparently suppressing Cortisol levels. I just read a story about someone who became adrenal insufficient on nasal spray.

  • Frightening thought! Honestly, they dish out these prescriptions without a thought what the side-effects might be!

  • It is criminal what they get away with. I got my son off all inhalers and antibiotics, by changing his diet. I had to take him out of school to save his life..really. He was on anti biotics almost the entire school year,. due to chronic sinus infections and asthma, made worse by stress. They made us take him to counseling, where they we going to put him on anti depressants and sleeping pills. I just pulled him out of the system. He is much better today.

  • Good job he's got you for a mum! Does he have a thyroid problem, too?

  • Thank you..if i can save him from my fate, then that's great! He has no Hashi's but his TSH is nearly 3, the free's, pretty normal...i think it is about inflammation for him. He is very thin, has irritable bowel from the food issues and is damaged from anti biotics. Never went back to that doctor for more advice..he was all about money! Wouldn't even return phone calls, you had to pay him to ask him a question about supps that he ordered for you!!!

  • Don't you just want to line them all up against a wall and...

    I'm sure you will save him. Have faith.

  • ...shoot them? Yes!!!

    Thanks, i will try. He has a very different idea than i did about prescription drugs and doctors.. i trusted them and used the meds and it cost me my health and my life, i am sure of that.

  • Oh, same here!

  • hi grey ,thanks for helping me to really understand my thyroid problem xx My Endo wouldnt even put my levo up from 75 but gave me T3 ,I tried Eltroxin but that put me in Hosptial with severe breathlessness but was told it was my smoking ,when i got home from the hospital i looked at the side effects and the breathlessness was one of them ,I phoned my Doctor and asked for a different tablet ,my breathing eased straight away so must have been allergic to it.

    I had my B12 tested 10 weeks ago but my appointment got cancelled on the last minute so no results >I will ask for all the tests and ask for results . I also suffer with severe cramps and i mean severe ,all over body waist groin back ankles shins hands jaw so severe i feel bruised inside .my heads gone blank now lol

    also with my symptoms at the minute are dry rough elbows same on feet feeling cold (still sleep with my dressing gown on plus blanket and 15 tog duvet ,dry mouth and throat with constant tickle falling asleep about 6-7pm (missing my programs.) lower back pain sometimes can not walk far i either need a dam good endo or shooting .forgot to mention i am 68

  • Well, that all sounds like thyroid. But the cramps could also be due to low magnesium.

    Are you in the UK or the US? If you were in the UK, you were Lucky to get T3! Lots of people would like to have it, but their endos won't prescribe it. And you Don't want your levo put up. Ghastly stuff! You're much better off with T3.

    And just becuase you're 68 doesn't mean you have to feel ill. I'm 70 and won't ever accept the age excuse! :)

  • thanks grey.i am in the UK, think i have been lucky with my endo he has let me try anything i want i also think its the area i live in .its just that he keeps me undermedicated and its such along time between appointments to be feeling so yuk.I have some magnesium should i take it now or ask for tests first ?

    hugs sue xx

  • Well, you might not even get a test, it's expensive. Try some now and see how you go. You'll know if you're taking too much because you'll get diarrhea.

  • thanks again ,will try taking some its folgars that has vit d as well and i am already on vit d with calcium xx

  • Why are you taking calcium? Did you test low? It's really not a good thing to take, you know.

  • when i was in Hospital i tested low for vitamin D i was given Calceos which is calicium plus vitamin D supplement ,i was so low at first i had to take 2 then reduce to 1 a day

  • I've never understood the wisdom of combining the two. Vit D will raise calcium anyway, so taking the two seems redundant. But if you're going to continue to take it, you should at least take vit K2 with it because that will stop the calcium ending up in the wrong place - the tissues (heart) instead of the bones. But doctors Don't know that.

  • thanks for that grey ,will google it .where can i get vit k2 from please

  • Plenty of places on-line - and probably in health shops. Amazon sell it, and so does Biovea. :)

  • thanks grey xx can you take it with clopidogel and omeprozle 2 more tablets i am on

  • Clopidogrel is often restricted to a relatively short period weeks, moths, up to a year.

    If you have been on it for a long period, it might be worth checking that it is still appropriate.

  • omg hevella i have been on for 5 years what is my doctor thinking about .I had it prescribe after i was rushed in hostpital with AF 180 beats ,but i have not got Af now thanks will see GP asap

  • Read the Patient Information Leaflet - have a look here:

    And talk with your doctor. :-)

  • Oh dear. Omeprozle? Really? How long have you been on that? And why? All your vitamins and minerasl are bound to be shot to pièces. That is the most god-awful stuff, and usually totally unnecessary.

    Clopidogel. Have you had a heart attack? Do you know that clopidogel and omeprazole shouldn't be taken together? I think you should ask your doctor to review your medication before you do anything.

  • hi grey ,i have not had a heart attack but i had AF when i was hyper thats when doc put me on them both .i do take omeprazole in a morning and clopidogrel before i go to bed .I will do that grey i hate taking tablets at the best of times xx

  • If a gastroenterologist hasn't diagnosed you and you are hypo, the chances are that you really have low acid rather than high. I take Betaine/pepsin tablets at each meal which makes acid and allows the protein to be dissolved. The symptoms of high or low are so similar but docs are unaware that we hypo are usually low. Antacids reduce the ability of us absorbing B12 which can lead to other problems.

    There is no maximum of T3 unless the Endo is keeping your TSH within range when it should be below 1 or lower.

  • I go in the morning to have a camera down into my stomach and then book an app with my GP over bloods and meds thanks

    shaws xx will let you know tomorrow how i got on

  • So, you've been on omeprazole for five years, too. It really is only meant to be for short-term use.

    I think you should have a very serious word with your doctor. He's being negligent!

  • will do grey ,just get tomorrow over with then will book an app thanks xx

  • There is a Conference in Birmingham in April by senior gastroenteroligists and attendance is free regarding the over-prescription of PPIs. One part is re :

    How can risks associated with long-term use of PPIs be prevented

  • thanks shaws ,wish i could go to that would be interesting but it to far for me to travel xx

  • It is for me too.

  • This might be helpful and it is from the USA site and I think you might find the answer (insufficient medication?)

  • Low ferritin

    coeliac /gluten sensitivity

    inadequate armour dosage .....erfa does not suit everyone plenty of reports about that

  • thanks fedup ,can i get tested for these or will they pick anything up when i have the camera down into my stomach monday

  • You will need to ask your doctor to test separately for




    vit d3


    theres no reason they should refuse since low ferritin or folate can cause breathlessness and stop conversion of levo t4 into t3 and coeliac can be a reason for not absorbing thyroid meds

  • thanks for the reply,will get them as soon as i can .What coeliac ? plus symptoms ? I am so glad i joined this site ,what lovely people you all are thanks

    Will go and jot them down so i dont forget x

  • Coeliac Disease /gluten intolerance often goes hand in hand with thyroid disease

    bloating and diarrohea plus sometimes nausea are main symptoms but a google search will tell you more

  • thanks fed up ,every one is so helpful and i am learning so much ,just off to google thanks xx

  • You must mean 60mcgs or 1 grain!

    My stomach has done the same thing, very distended and i too have low cortisol, i too was nauseated and scoped 3x since this all started. You are undermedicated, which will cause low cortisol. What is you blood pressure like? My stomach and nausea got better with t3 meds. ndt made me worse, stomach too. I have Hashis. I need to have my Pituitary evaluated, but symptoms are better.

  • faith are you being treated for low cortisol ?when i have the camera down on monday will they tell me anything then and should i mention the low cortisol and thyroid problems to them sue xx

  • I tried HC, Pred and medrol...2 of them made me swell and gave me high bp and high Glucose, medrol didn't make me swell, just gave me the other issues. cortisol is a mystery to me.

    You could mention these issues to them. Nausea can be related to both issues. But, i doubt they will understand that. Although, low cortisol under stress and if you were cut/injured..they would need to give you steroids. You need to look into having this insufficiency diagnosed. You may need to carry a medical alert card or jewelry with the condition marked on it.

  • hi faith ,Over the 5 years i have had a thyroid problem i have had 3 9-00am blood tests for cortisol they always come back low and 3 times i have had to go to the Hospital for the scynacthen test ,all i can think of it must have not been low enough to treat ,but i get back pain crusty elbows and the palms of my hands are really wrinkly so i do not know if they are thyroid or cortisol symptoms xx

  • If you have low ACTH and Low Cortisol it is Pituitary, High ACTH and low Cortisol it is Adrenal Gland. You would need further evaluation. But the continued use of Steroids, is most likely the cause. Maybe properly treated Hypothyroidism, would help your breathing. You are going to have weird skin issues with autoimmune disease and steroids. And weird symptoms. You Cortisol will continue to be effected until you come off the inhalers and then you would have to be tested to make sure you recover your cortisol. I don't know what else to say. You need to find another doctor. They are too quick to prescribe Steroids. They really should be only the last resort, when all else has failed. People with Asthma also usually have food sensitivities or allergies, same with Autoimmune Disease. You have both.

  • Thanks faith ,i will let you know how i go on at hospital tomorrow xx

  • i think i told you that i have been scoped 3x and the last time the found Diverticuli, from being constipated. I have a Hiatal Hernia too. Nothing major..but i was convinced they would find Caner..i was so distended and so burnt from Acid..nothing. Again, the doctors had not much clue about thyroid involvement with the G I tract either..we are really all on our own. Good luck and please let me know how it goes!

  • The inhalers may actually be causing this! They are a steroid and that will cause your cortisol to become low!!!

  • thanks Faith ,i feel for your son so glad he has a good caring mum.The inhalers i am on are ventolin and seritide wich is around purple one I believe that it costs £60 and it has steriods in.I can't understand why i have not been treated for low cortisol especially when my 9 am cortisol blood test always come back low then sent for an acth test and still not treated .I think you might be right faith xx

  • I would look at diet..dairy, gluten etc.. and get off of them, wean off, Sometimes this adrenal insufficiency is permanent.

  • what does the ACTH look like?

  • Your T4 levels would be lower when taking T3 as well.

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