I was so pleased when my GP prescribed Armour for me instead of Levothyroxine but I just don't seem to be able to tolerate it. I have had several attempts I start to feel better but then get worse again.
The first time I developed a rash, then headaches and now terrible pains similar to indigestion but worse which go right down into my tummy.
Yesterday I took Levo again for the first time in months and I feel so much better today.
I have made an appointment with my GP but I don't know if I should ask for Erfa or another NDT instead. Any suggestions would be appreciated.
Written by
Mouse
To view profiles and participate in discussions please or .
Have you had all the usual tests, such as cortisol, serum iron, ferritin, vitamin B12, folate, vitamin D? It can be quite difficult to tolerate changes in meds if any of these are not optimal.
I was wondering what dose you started on. Did you increase within a few days?
It seems that a lot of people who don't get on with Armour do get on with Erfa so that may be worth a try.
I had a saliva adrenal test which was normal. I have had B12, ferritin and folate a year ago but the lab wouldn't do vit D because they did a bone profile and it was normal.
Ferritin 34 (10-300)
B12 420 (180-1000)
Folate >25.6 (>4.00)
I have made an appointment with my GP so will ask for them all to be tested again.
I was only on 1/4 grain Armour on alternate days as my thyroid results were in the normal range so the GP was happy to just treat the symptoms. I didn't increase because I kept feeling hyper.
I remember your posts from last year, when you were only taking 1/4 grain on alternate days. We seemed to be in similar positions because I couldn't tolerate anything for more than about 3 days before having to give up because I felt so bad. (I had stopped Levo after 12 years because if a bad reaction) - I think it had been creeping up on me because I had been having more hot sweats, sudden attacks of nausea and an itchy bumpy rash on both legs which I'd had for about 3 years. This coincided with the last raise in my levo, but I hadn't connected the two. I'd put all the rest down to stress until I had this massive hyper attack one weekend last March.
At the time I had tried T3 which was prescribed by my endo and didn't get far with that. I had obtained some Erfa - legally but in a very round about way, and felt a tiny bit better for the first 3 days, then bad. Each time I had to stop for almost a week, and so the next time I started feeling bad (headache, sick, dizzy, anxious, etc), I bit the bullet and upped the dose instead - ie half a tablet instead of a quarter (!) and got Dire Rear and those deep tummy pains to add to all the rest. That finished me off where Erfa was concerned, at least for the time being.
I had four goes at getting back on Levo, but even 25mcg gave me the worst migraines I'd ever had in my life, and sudden attacks of dizziness etc. In fact I wondered if I had become intolerant to T4 in any shape or form.
My endo next tried Armour, but the results were much the same as Erfa. With nothing left to try - or at least nothing I could get my hands on (purified levo etc) I decided to give T3 another try. I had managed to raise my ferritin and Vit D a bit, though couldn't shift the B12 much.
I have been taking a tiny crumb of T3 since December - by this time all I was interested in was finding something which at least didn't make me feel worse. I didn't expect any wonderful results, which is just as well, because I didn't get them.
I found that I still had to have a few days off every couple of weeks, but for a while I did feel a tiny bit better. No miracles, but I was able to eat a bit more without feeling sick all the time, which was a major problem before.
But it is very up and down. I have tried to up the dose a bit, but feel worse again, and have to go back to a tiny crumb. I take heart from the fellow member who said it took her a year to work her way up to a whole tablet.
I do feel that I have slid backwards from when I first started to take it, and probably should increase, but what do you do when any increase makes you feel terrible? I know most people seem able to work their way through the bad bits, and this is probably what I should do, but I can't afford to be feeling too ill to eat anything for days on end - I'm so underweight it's just to risky.
So I'm persevering witthe crumb - in hopes that it migt eventually make a difference, but I can't say I feel a huge improvement really.
I was interested to hear you say you were able to take levo again, and felt much better. I would be the last person to sing the priases of levo - the last time I tried it, I really felt so bad I thought I might die - but it would undoubtedly be a lot easier to take a levo pill each morning like I used to, and not be struggling to find a replacement and still feeling more or less awful.
May I ask, how long was it since you stopped your levo, and when you took it again, did you take the same brand as before, and the same dose? And have you continued to be able to take it, or was it a one off? I'm just wondering if intolerances to medications can 'right themselves' after a time, like some food intolerances. I'm probably clutching at straws
I know we're all different - I never felt any different on levo, no better but no worse - until the bad reaction and in hindsight the run up to it. I was diagnosed accidentally, and didn't really have much in the way of Hypo symptoms at the time, 12 years ago. Since then, at least I could function, which is more than I can say at the moment, even with the T3. I don't really think it's doing much for me, but as I say, there doesn't seem anywhere else to go.
Sorry for the long post. Good luck,and I would be very interested to hear how you get on, as in part our problems seem similar.
When I said I felt better after taking levo I had only taken one dose of 25mcg. I took another dose today after not taking any yesterday but feel bad again today; the same problems I used to get- light-headed/dizzy, pains in my right foot and pains in my calfs. I hadn't realised at the time that these pains were as a result of the levo but I haven't had them since stopping a few months ago.
It seems I have to choose which side-effects are the easiest to deal with.
I know what you mean. That was what sent me back to the T3 - it seemed to be the least bad of everything I tried. What a nightmare, having to decide which side effects are the easiest to put up with.
And of course its so difficult to know what other factors may or may not be making a difference. It's a complete minefield.
I'm so sorry the levo doesn't seem to be the answer for you either. I only wish that taking nothing was an option, but after initially feeling great when I stopped the levo, it soon became apparent that that wasn't going to work either.
I guess it's back to the drawing board. I hope you can get something sorted out.
Your ferritin is quite low. Optimal range is above 70-90 for a woman, apparently. It might help to get your ferritin up. It could help with your symptoms. Low ferritin could be part of the reason you are not tolerating the Armour too.
Thanks CarolynB, I have some SpaTone so I will start taking that again
Hi Mouse
I struggled a fair bit at the start of my change over from levo to Erfa but I know now that was because my adrenals were very exhausted and iron/VitD/magnesium were incredibly low. I persisted and improved things as I went along but it was tricky some weeks.
I wonder if you have been becoming toxic with Reverse T3? If you have adrenal issues, or low in the above listed things, the Armour will not be used well and could back up in your blood.
Mouse, if you are having a reaction to the fillers and binders, Naturethroid might be a good choice. If you haven't laid the groundwork per the comments above from CarolynB and laladrew that is an important first step. PR
Is your doctor a private doctor or NHS because my NHS doctor says he cannot prescribe Armour which I am on and it agrees with me. But sorry to hear it does'nt with you hope you find the right one.
NHS. It was the GP's idea even though she said she didn't know how to prescribe it and referred me to another GP in the practice. He laughed and said he had no experience of it either but would prescribe it for me anyway.
This practice also prescribe alternative therapies so they are a bit unusual which is why I changed to them.
Wow, I want to go to your GP Surgery, they sound wonderful and it's so good to hear of GPs responding to their patients' requests and needs for once, it's so rare!
ooh Hello Mouse! I shall have a look at more recent posts to see how you're doing - this one's 10 months old!
To PM - just click on the name or pic(avatar) and you'll see a yellow box on their profile 'Send a message' - or the person asking can send you one first and you'll see a red marker on the envelope on the green bar above (hope you're not colourblind) J xx
That multivitiamin is making your serum blood tests invalid. AND more importantly could be masking pernicious aneamia (PA - B12 deficiency), this is what happened to me. It is vital you figure out your 'true' B12 status.
Watch this... it looks extreme but it explains why PA is missed don't rely on your GP to get to the bottom of this they aren't taught about it..
You would have to comee off the vits for two months to get accurate tests. Ask the gp for a theraputic trial of B12 injections (water soluable vitamin that costs .60P per shot) can do nor harm and you may find you feel immediately better - I did. I should have been treated 10 years ago but better late than never.
Adrenals need attention too but aneamia is serious and very treatable.
The new 'Active B12' test is now beginning to replace the standard serum B12 test.
It's available now through NHS referral, but this may still be difficult to get for a while unless your GP has done a serum test and the result is below the range.
Hi RedApple Thank you for posting about the active B12 test - I too thought it was only available by referral at the one hospital in London.
May I ask if anybody has tried this one, and was it useful - ie showing a difference to the serum blood test and proving that the actual active B12 was low - I suppose I'm trying to ask in a roundabout way if this is the real thing?
Sorry
I did a B12 test last year which showed my B12 was 'in range' at 409 I think it was. It later went down to something like 375 - of course GPs reaction was 'it's normal and you won't get B12 injections until you have Pernicious Anaemia'. But I still feel that B12 would help, judging from past experience in the 90s when I was able to get shots from a naturopath.
I have real trouble taking oral supplements and have got the means of self injecting but haven't worked up the nerve yet - a poor result on the active B12 might give me the courage or my GP a kick up the backside. Or conversely it might show all is OK.
Just wondering if anybody has tried it and what happened. Thanks.
My exhaustion, and numb hands and legs have been getting worse over 10 years. The deterioration is gradual and no one would listens. The trouble is thyroid disease gets blamed and middle age and being female!
I think it is easy to think your thyroid replacement isn't right but other things, adrenal insufficiency and anaemia don't get explored.
Can you arrange to keep off vits (two months at least) and then have an up to date test done?
Your GP shouldn't even insist on this as I said B12 is harmless (water soluable vitamin, just gets excreted in urine if surplus).
I agree with auldreekie here that B12 could be involved. Vegetarians are very prone to having low B12 and the serum test is almost worse than useless. The test you need is MMA and intrinsic factor I believe. There is an Active B12 test but at the moment it's only available in one hospital in London I think.
Mouse, just to put another potential problem into the pot - might you have an allergy to pork, more specifically pig kidneys (allallergy.net/fapaidfind.c.... I had a very bad time after eating pig kidneys and since then I've shied away from the idea of trying Armour just in case porcine thyroid gland may contain these same allergens.
The volume of pig kidney I ate is of course much much greater than the volume of pig thyroid in a few Armour tablets.
I was diagnosed with MS in 2009. In 2011 I accidentally found out that I was B12 deficient (my level at the time was 144 pg/mL) and my GP started me on B12 injections straight away. All my MS symptoms disappeared within a few weeks and I have been symptom free for nearly two years. I believe that I most likely don't have MS but doctors won't confirm - they told me that time will show. These were my symptoms: lack of energy, forgetfulness, muscle weakness, blurred vision and emotional sensitivity. It was my blurred vision which initiated the MS investigation and consequently the MS diagnosis.
There were however two things that changed for me in 2011. The first one was the fact that I was started on B12 injections and the second one was the fact that I slowly started replacing my Levothyroxine meds for Erfa thyroid.
I hope that you will find the right medication for yourself.
Nuffield are doing active B12 without referral needed.
You must make sure you are supplement free for two months at least.
The other problem with the serum B12 test in the UK is the normal range is wrong. (sounds familiar!)
quote
Why is B12 deficiency so under-diagnosed?
B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so-called “normal” levels of B12.
Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency). PS. You can get this test at Guys aroiund £100 along with active B12)
In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.
unquote
Inability to metabolise B12 in Auto Immune Thyroid disease because amoung other antibodiessome of us (25% or more, have antibodies that interfere with intrinsic factor production by the parietal cells - necessary to use B12 (these antibodies can be tested for but I bet your GP won't do it!!).. The you tube clip above says there are 14 enzymes necessary for correct B12 untlisation (GP won't agree with that either!).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feeling like giving up
Giving up..
I give up with everything now. 
Newbie - do I give up?
So confused by results - should I give up?
