thyroid misery

Rosie1983

Hi all

Just wanted to add my two cents to the Eltroxin vs NDT. I was on Eltroxin for 2 years, and honestly I wish I had never started with it. I'm now on Erfa since April of last year, except for about 4 months on Armour last winter when Erfa went out of supply.

The difference between Erfa and Eltroxin is huge, and I can't recommend Erfa enough! I feel so much better, physically and mentally and emotionally. So much more stable, much more energy. If anyone is wondering whether to switch to Erfa or Armour, I would recommend it completely. If you want any more info, you can PM me. I know some people do well on Eltroxin, but if you feel it's not working, or you are curious about NDT, definitely find out all you can and talk to your doctor. My GP was ok but she didn't know ANYTHING about it, so it was the Endo who finally prescribed it for me. Funnily enough I went back to my GP after being on Erfa for about a year (not to see her about my thyroid BTW) and she wanted to know more about it for another patient, so maybe she'll start learning about it, which would be amazing!

Best of luck to anyone still struggling, and always trust yourself and listen to your won body, it always knows what it needs.

lovelystuff

Thanks for you insight on NDT, I'm seeing my consultant today so I'm really hoping she will change me over. Levothyroxine seemed to work on and off over the last few years but I'm having a bad year. Also I'm recently engaged (Yay!) And I really want this sorted before the wedding so I'm not wanting a nap on the big day! Fingers crossed for me today, thanks again!

Rosie1983

lovelystuff wrote: »

Thanks for you insight on NDT, I'm seeing my consultant today so I'm really hoping she will change me over. Levothyroxine seemed to work on and off over the last few years but I'm having a bad year. Also I'm recently engaged (Yay!) And I really want this sorted before the wedding so I'm not wanting a nap on the big day! Fingers crossed for me today, thanks again!

Best of luck today! I really can't recommend the Erfa (or ARMOUR) enough. Hopefully you will be able to get it prescribed and it will work for you too! Congrats on the wedding btw. If you have any other questions let me know.

lovelystuff

Thanks for that! So I'm feeling a bit mixed after this morning. The consultant said that based on my bloods we have probably gone as far as we can with levothyroxine. I asked about ndt, and she is willing to try me on it but wants to try synthetic t 3 first alongside levothyroxine to supplement it and see if that helps. Also have to get a rake of other bloods done Inc vitamin d deficiency etc in case there is another cause. The reason she is reluctant to try me on ndt is because apparently it's not regulated enough for pregnancy (not on the cards for me yet but maybe in a few years). So hopefully the synthetic t3 Will help i don't know much about it. It's constant struggle, I ended up leaving work early as was tired and a bit drained and emotional after this morning to be honest!

handbagmad

Have zero energy. Very bad the last few days today in perticular.
my body just won't go.

Amazingfun

I've never heard that NDT is "not regulated enough" ....for anything. Very strange statement really.

Still, you will most likely feel better with T3 added. Good luck with it and congrats on your engagement!!

cltt97

I am on a combo of NDT and T3. T3 is great, but you have to be careful with it, I split my T3 dose over the day, so the body doesn't get a full hit all at once.

cyning

Actually my endo wouldn't start me on armour until after I had my two babies: I'm not having more for a couple of years if at all! I find no difference between armour and T3/t4 combo or T3 only once my levels settle down. When I was settling on the T3 I would have had hyper symptoms that I never got with Arnour.

And I was worried about needing a nap on my wedding day too

CathyMoran

Cyning - my son and daughter were born on eltroxin but I have been on it for over 20 years as I had Graves when I was 3 and was given radium treatment for same. All of my relatives on my father's side have it.

I have multiple other medical conditions including type 1 diabetes, sarcoidosis and am an 8 year oesophageal cancer survivor so thyoid issues were always on the bottom of my list. I do have chronic fatigue but that had only happened in the past 8 years since I had the oesophagectomy.

lovelystuff

cyning wrote: »

Actually my endo wouldn't start me on armour until after I had my two babies: I'm not having more for a couple of years if at all! I find no difference between armour and T3/t4 combo or T3 only once my levels settle down. When I was settling on the T3 I would have had hyper symptoms that I never got with Arnour.

And I was worried about needing a nap on my wedding day too

I'm definitely a bit worried about my body reacting to t3, as I'm usually a wreck when my levothyroxine is changed even a tiny bit! Hopefully it will be worth the transition though, and the doc also suggested vitamin b and d supplements, only to start after I have every blood test known to mankind next week! I'm hopeful, it's just frustrating at times.

cyning

It is definitely worth it after the transition period. I know when I went on it first (the Feb before I got married) I had a rough few weeks, but really haven't looked back since: baring in mind at the time I was on 500mg of eltroxin and was like a dead duck at the time! That endo left the hosp after my first appt and I was devastated... My GP was great though. Didn't see my current endo until half way through my first successful pregnancy he's great! So important to get your levels right pre pregnancy though otherwise it's pretty tough going.

Catchy just out of interest are your kids monitored for Graves? My two have both been in hospital 3 times and thyroid levels checked each time: but considering they are only 26 months and 7 months I'm hoping no more hosp visits any time soon!

CathyMoran

cyning - I am aware that there seems to be a genetic component to the Graves for my two who are 3 and 4 (less that 14 months between them), while I do not keep an eye on it per say I do know the symptoms and will keep an eye on them in general. My daddy had the thyroid surgery in his early 20's for it and they do still keep an eye on it but he has never needed eltroxin. If they do get it I would rather that they had the surgery than the RAI as I had other health issues in later life that I feel were related to it.

redcatstar

Hi sorry to hear all that. I was in a similar way for the last year ferrtin was very low periods very heavy lasting two weeks sometimes. I went on the mini pill it has helped alot , I had no period for two mts and didnt know myself ( having one at the mo not feeling great or bad but there is a difference energy wise etc) I find vit d. Complex b and selenium have really helped me . Periods though seem to make me dizzy moody no energy etc

Emme

<deleted post>

Have you had your adrenal function checked? That could explain the headaches and unsteadiness, also the struggle to do exercise which you could do no problem before. Your weight is on the low side of normal for your height so you might need your thyroid levels checked to make sure you're not taking too much. Could you see another doctor or an endocrinologist?

cyning

Anyone having difficulties getting armour? The chemist is having difficulties getting it from suppliers: I'm taking 120 a day, so when the only dose they could get is 15mg I'm taking eight a day! Plus it's much much more expensive... The suppliers are expecting it back in in 5-6 weeks but I have a 37.5 day supply left so if there's any delays I'm in trouble, and I'm breastfeeding so I really don't need to be going hypo for my little girls sake either

Rosie1983

cyning wrote: »

Anyone having difficulties getting armour? The chemist is having difficulties getting it from suppliers: I'm taking 120 a day, so when the only dose they could get is 15mg I'm taking eight a day! Plus it's much much more expensive... The suppliers are expecting it back in in 5-6 weeks but I have a 37.5 day supply left so if there's any delays I'm in trouble, and I'm breastfeeding so I really don't need to be going hypo for my little girls sake either

I'm not on Armour but I do take Erfa. I was on Armour for about 4 months from about this time last year though - when Erfa went out of supply for a while. I was very stressed at first, but Armour seemed to work for me. But when Erfa came back into supply, I decided to switch back, as I felt that Erfa had been suiting me better.

Sorry I can't be of more help. I've had no problems getting Erfa in since then. Funnily enough, I had my bloods done about 8 weeks ago and my T4 and TSH had swung under-active again! For no apparent reason. They had been stable for just over a year. I just had them done again last week and they've apparently swung back to a better range, but they're still not "normal". my Endo is recommending that we still don't change the dose and wait another 8 weeks to see if they even out.

Now I'm wondering if the switch back to Erfa from Armour about 6 months ago had anything to do with it, or maybe it's because I've been taking both 30 mg pills together in the morning before breakfast? I discussed it with him today on the phone and we decided it'd be no harm to go back to taking them separately - one in the morning and one in the evening. I haven't done that in about 9 months - to see if my body responds better to it that way.

Very frustrating to be honest, as I'd made so much progress with Erfa in the past 18 months, now I feel like I've gone two steps back... I hadn't made any big diet or lifestyle changes in the past few months, so I can't understand why it suddenly stopped working well. He seems to think that my thyroid gland tends to wing up and down in activity itself anyway...

I hope you can sort out your Armour supply problem.

RoadhouseBlues

Hey folks. Ye have been a great help with all your knowledge and advice. I just wanted to throw another question at ye if ye don't mind. Has any of ye ever got the swelling under the eyes. I do get it under my eyes, but the right one is always the worst. In fact to be honest it does look like someone hit me. And me the quietest man in the land:-). I shouldn't worry about it but it can be a bit embarrassing. I presume this is because of the thyroid. Also just to add, its not sore or anything. Just swelling and no pain.

inocybe

RoadhouseBlues wrote: »

Hey folks. Ye have been a great help with all your knowledge and advice. I just wanted to throw another question at ye if ye don't mind. Has any of ye ever got the swelling under the eyes. I do get it under my eyes, but the right one is always the worst. In fact to be honest it does look like someone hit me. And me the quietest man in the land:-). I shouldn't worry about it but it can be a bit embarrassing. I presume this is because of the thyroid. Also just to add, its not sore or anything. Just swelling and no pain.

I've been having terrible eye problems and wondered too if it was thyroid related. I was/might be again hyper, and for months on and off have been getting a lot of fluid build up under my eyelids and big lumps of it under my eye sockets. Is that similar?

cltt97

I used to get puffy eyes on and off, too. I guess I didn't notice it so much until looking at pictures of myself and the overall swelling of my whole face became more apparent on photo than in the mirror!

Amazingfun

I've been self treating for over a year now and doing well for the most part -but recently my eyes were giving me great bother and I was getting headaches-something quite rare for me. I figured out that I must be needing to drop my dose a bit so I did and not even a week later I look and feel much better It's always a balancing act!

RoadhouseBlues

inocybe wrote: »

I've been having terrible eye problems and wondered too if it was thyroid related. I was/might be again hyper, and for months on and off have been getting a lot of fluid build up under my eyelids and big lumps of it under my eye sockets. Is that similar?

Aye that sounds like mine. Although mine doesn't seem to be going away. Sometimes I wonder do people think I'm just out of bed:).

lovelystuff

Everyone here is always so knowledgable, I was wondering could I post my latest bloods? Thyroid results were all in range but the following were flagged

Bone profile calcium 2.14 range 2.20-2.60

Corrected calcium 2.08. Range same

Bicarbonate 21 range 22-29

lymp 3.6 range 1.5-3.5

Mchc 35.2 range 30.8-34.6

Will be waiting on my Dr til next week and Dr Google isn't being very helpful, any insight appreciated thanks!

RoadhouseBlues

Just to add a bit of humour to the subject. I saw on another thread about someone's cat who wont stop eating, and they were wondering is it a thyroid problem:-):-):-). So its not just us:-):-):-). Also. Cats rock...........:-):-):-)

cltt97

lovelystuff wrote: »

Everyone here is always so knowledgable, I was wondering could I post my latest bloods? Thyroid results were all in range but the following were flagged

Bone profile calcium 2.14 range 2.20-2.60
Corrected calcium 2.08. Range same
Bicarbonate 21 range 22-29
lymp 3.6 range 1.5-3.5
Mchc 35.2 range 30.8-34.6

Will be waiting on my Dr til next week and Dr Google isn't being very helpful, any insight appreciated thanks!

Don't think anyone here would be knowledgeable enough to provide any insight... but the levels are all just a bit over or under the normal range, so I wouldn't get too worried. You might have a bit of an electrolyte imbalance - have you had kidney function tested? Most of us are also Vitamin D deficient, which is needed for Ca absorption, so might be worth having that included in the next blood test. The blood indicators - don't think they are anywhere near high enough to be indicative of anything, probably a reaction to the immune condition, or maybe you've had a bit of a cold or flu recently. Also not everyone always falls into the normal range exactly, so I would not panic quite yet!

lovelystuff

Thanks so much,yeah I was panicking a bit last night because I haven't spoken to my Dr yet but I'm assuming she would have rung if there was anything she was too worried about,so hopefully it's just supplements i need! Fingers crossed!

gastons

I was diagnosed hypothyroid two weeks ago. The results I remember are tsh 87 and T3 2.7. I was started at 50mcg eltroxin for 7 days, that increased to 100 mcg on Tuesday. I started getting palpitations and short of breath, so went to my gp yesterday, we have lowered the dose to 75mcg for the rest of the week, due bloods on Monday. I have read through some posts here. I'm very lucky in that my gp was spot on with diagnosing me. She couldn't recognise me when I visited her with back pain and tiredness. She ordered bloods straight away and said she thinks I'm hypo, and we got the results, she was right. I had two trips to A+E while waiting on the blood results and I saw 3 doctors and not one knew what was wrong with me. I was Un able to walk properly due to severe cramps, even my face was cramping.

Did anyone else suffer with shortness of breath when they started on eltroxin? I feel as though I'm not breathing deep enough, like I have to put my arms above my head to open up my chest to get a good breath? Also my eyes seem to zoom in and out on things, it happens very quickly, almost like I look at something and my eyes pulsate to focus? I'm used to the extreme tiredness at this stage and the burning pain I get in my muscles when I do too much. I have finally got an appointment for a medical assessment, for early December and I'm on the cancellation list. Is there any other tests I should be asking for? I will ask my gp, but it's good to hear from others that are going through it too and that have experienced it and have been through tests. Thanks

Wyldwood

Gastons, you're very hypo at TSH 87, can't comment on T3 result as you haven't given the lab range. Did you have a Free T4 & Free T3 test done? Ask your doc for a copy of the blood results and check what was done and where in the lab ranges you fell, the ranges will be on the report.

You say you were started on 50mcg Eltroxin for 7 days and the upped to 100 mcg, this is far too high an increase far too quickly. I'm completely surprised at any doc doing this. The usual regime is to start low at 25/50 mcg for at least 6 weeks before a small increase is introduced. The palpitations and other side effects are because your body is not used to the levothyroxine and needs to be gradually accustomed to it. Great that your doc recognised your malfunctioning thyroid but you need a referral to an endocrinologist pronto.

gastons

I have bloods due Monday so I'll get a copy of my last results and I'll write them up here. It was a different gp that actually started me at 50 then upped it to 100. My normal gp who I saw yesterday who made the diagnosis said to drop down to 75 mcg which I did today. Thankfully I've had no palpitations today.

Yes I'm very hypo, I suppose I'm at fault because I left it so long to actually get to the doctors with my symptoms. I never once thought it could be my thyroid, I was putting it all down to life in general and just having a bad back, and I kept telling myself to just get on with it!

The burning in my back is quite severe today. It radiates up to my right shoulder.

What would an endo do for me? Sorry if it's a daft question!

Amazingfun

I am not really a great fan of the endo to be honest due to my discouraging experience with one (yes-only one but I've read patient experience with others and their stories were similar). I encourage anyone recently diagnosed to start reading up on hypothyroidism themselves via sites like Mary Shoman's because frankly we need to be our own advocates with this thing:

http://thyroid.about.com/

Also STTM: http://www.stopthethyroidmadness.com/

Gena Lee Nolin's is brilliant too: http://www.officialgenaleenolin.com/thyroid-sexy/

Anyways just wanted to comment on your back pain. Joint pain (and weight gain) were my worst symptoms before diagnosis and treatment. I was so bad that I had got to the stage where I'd been taking Nurofen Plus at massive daily amounts for two years straight just to be able to function at all. Even on eltroxin alone that terrible joint pain was gone within weeks and I was off the nurofen completely. It was almost miraculous and proved that all of it was down to my being hypothyroid.
Hang in there and give the med time to work

cltt97

I experienced the same as you when I started off on eltroxin. I was TSH>100 and they put me on 50mcg and then very quickly onto 100 - I felt spaced out, palpitations, felt really unwell, so dropped down to 75 as well. You have to do it really slowly. I would even recommend that for a while you take 50 one day and 75 the other for a couple of weeks, get adjusted very slowly, otherwise you might run into troubles. I usually compare it to starting a car - you don't go full throttle straight away, little bit of gas to begin with otherwise you'll crash into the wall!
Endos can be good and bad, depends which one you get, some are ignorant and not much better than GPs, others have far more knowledge. Typically the blood tests that you need to begin with is iron, B12, folate, Vitamin D - usually thyroid affects fat metabolism so cholesterol, triglycerides - also kidney filtration, but these things typically improve with improved thyroid condition - vitamins/minerals it depends on what comes back and you might have to supplement. Some people do really fine on eltroxin, others don't and do much better on "natural" thyroid hormone, which is produced from pig's thyroid glands - this contains not only T4 but also T3, T2 and T1 - depends on if you have conversion issues etc, but to start with see how you get on on the T4. Important is not to be impatient, it will takes months for the body to repair. I had terrible wrist pains, dry eyes, dry skin, dry hair, slow digestion, had a bit of a skin rash that wandered up and down my arms - all that went away eventually, but not over night. Whatever you do, don't rush your hormone treatment - these are very active substances and tiny doses - as you've already experienced - can overwhelm the system. But hang in there. Typically they put you on a dose and test again after 6 weeks and then re-evaluate. My endo explained to me that also sometimes the pituitary gland needs to adjust to not having to spit out so much TSH, so sometimes although the reading is still quite high, the situation is not as bad as indicated by the TSH levels. Some of the patient driven webpages are quite good, but they are based on personal experiences, too, so be careful with some of the advice given there also. For example stopthethyroidmadness has plenty of good information, but if I had followed your woman's personal treatment regime (I read her book) I would have probably keeled over - worked fine for her though. Also to note is that you might feel a real improvement on a new dose, but often it ebbs off just as quickly and you think I need more - which you probably do, but slow does it, so again, whatever you do, don't be impatient and don't rush it. All the best!