Thyroid or Thyroxine.

[Ezza_80]

Hi,
I am new to this site, but after reading a few threads from others, it seems quite a few of you are very knowledgeable when it comes to this subject.
I am 31, female, live in UK. I was diagnosed as having hypothyroidism in January, I dont know the exact medical terms, but my results were 12.2, i think the range was 12-22?? sorry this is vague. anyway, when i originally went to the doctors, it was because i was feeling out of sorts, very hard to explain, but something wasnt quite right. i was also feeling ever so slightly anxious, i wouldnt call it anxiety then, as it was nothing close to what i have experienced since, and also i had lost a stone in weight, which i usually only weigh 8st 5 anyway. So they did blood tests and it came back as underactive, so the docs prescribed me with 25mcg levothyroxine, after 4 days of taking it, i was an emotional wreck. my skin felt on fire, especially my face, i was emotional, nervous, experienced frequent anxiety attacks, got signed off work for 2 weeks!!
Anyway that was 4 months ago, i have since had more bloods, my results havent changed much by being on the medication, it has slightly improved, gone to 12.9 I feel like the anxiety has subsided, thanks to help from the therapist i have been seeing. The docs keep wanting to put my medication up, but so far i have managed to postpone this as i still feel nervous most of the time and just not myself, not quite with it. And i am concerned that an increase in this medicine will make me feel much worse.In the last few days, i have been feeling shaky, no energy, cannot sleep at night, achey neck, emotional, brain fog, a bit slurry in speech. This is not the normal me, and i dont know whether all of these symptoms are due to the thyroid or the medicine. I have been to my doc with my concerns, but they arent interested in how i am feeling, just what my results say. I am considering lowering my dose myself to 12.5 and weaning myself off of it, almost to prove a point, that i may feel better without it, as i certainly felt better before.
A lot of you mention armour, how would i get this in the uk? and how much is it??
I would appreciate anyones help with this, and any advise you have.

[Barb135]

There should be a minimum of 4 hours separation, between your thyroid medication and vitamin/mineral supplements, especially, calcium.  Vitamin/mineral supplements can inhibit the absorption of thyroid medication.  

[Ezza_80]

I will write all those factors down, and ask to be tested for them.
I asked the doc if i should be taking any iron supplements and she said supplements may interfere with the medicine, and she couldnt advise on which vitamins to take?!
I brought some vitamin C effervescent tablets as i thought that could boost my immune system, but they are 1000mg so not sure if that would be too much to take, or if it would interfere with the thyroxine.
I have read about the adrenal fatigue, and there are tests you can take for this.
I think sometimes i have symptoms of hypo and hyper, like today for example, i woke up feeling really wired, and jittery, and soooo tired all at the same time, is such a wierd feeling. But its almost that feeling is worse in the mornings than at night. But i take my medication at night so am not sure if that has anything to do with it, I've never been a great sleeper anyway, but if i get 4 hours straight sleep, that is good for me!
Is so refreshing telling people about this, who actually listen to my symptoms, rather than fob me off!

[gimel]

First thing is that I want to also emphasize the importance of testing for Free T3, along with Free T4 and of course the security blanket for doctors known s the TSH test.  It is often very difficult to get a UK doctor to test for Free T3, but it must be done.  Free T3 largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.  Since many hypo patients do not adequately convert T4 to T3, Free T3 must be tested along with Free T4,  to assure knowledge of Free T3 level.

Sometimes a hypo patient will have a reaction to thyroid meds, due to the filler material in that specific med.  Other meds might be fine.  In addition, hypo patients sometimes develop what is known as adrenal fatigue, due to the adrenals trying to compensate for low thyroid levels.  When such a patient starts thyroid medication, there can be an initial reaction.  Yu can read about this on these links.

http://www.bellaonline.com/articles/art44711.asp

http://endocrine-system.emedtv.com/adrenal-insufficiency/adrenal-insufficiency-symptoms.html

Another area to consider is iron deficiency.  Many hypo patients find that their are low in iron.  That causes some well known symptoms which you can read about in the following link.  Low iron can also affect hypothyroidism by slowing the conversion of T4 to T3.

http://en.wikipedia.org/wiki/Iron_deficiency_anemia

So there is lots of testing that most likely needs to be done before really understanding what is causing your many symptoms.  In addition to the Free T3, Free T4 and TSH tests, I suggest Vitamin D, B12, ferritin, and a full iron test panel.  It would also be a good idea to test for cortisol level.  Here we think the best test is a 24 hour saliva cortisol test, or a 24 hour urine cortisol test, rather than a blood test on only one sample.  I have no idea of how difficult it will be to try and get all that done in the UK, but I think it is all important information to be gained toward trying to accurately diagnose you and get you on the road to feeling better.  

[Ezza_80]

Thank you Gimel, again that does give me hope that i will get sorted.
i look forward to your comments :)
Thank you for your reply red_star, i will definately check that out.
It is so frustrating going to your doctor, telling them you feel even more unwell yet theyre not willing to treat your symptoms!!
I dont suppose anybody knows what risks i would be taking if i weaned myself off the levothyroxine do you. and i know you cant come straight off it, or at least that is what i have heard.

[Red_Star]

The 12 - 22 range sounds like a free T4 test to me. My range is 10 - 20 pmol/L which is similar.  The low end of the range is the hypothyroid end.

A good website to checkout is Thyroid UK. I had a read through and found there are no UK manufacturers of desiccated thyroid hormone or synthetic T4/T3 combinations.  Therefore, the only way you can switch to natural desiccated thyroid hormone or the synthetic T4/T3 combinations is through "Named Patient Basis".  This means in certain circumstances your doctor can prescribe a medication because you have a special need for a certain medication.

The following are the non UK manufactured prescription thyroid medications that may be obtainable on prescription in the UK through the "Named Patient Basis":

Natural desiccated: Naturethroid, Westhroid, Thyroid (Erfa), NP Thyroid, Armour Thyroid (Note: all porcine based incase you have a pork allergy)

Synthetic T4/T3 combination: Thyrolar

Synthetic T3: Cytomel, Paddock. (There is already a synthetic T3 available in the UK called Goldshield however)

[gimel]

I fully understand the frustration of many thyroid patients with their inability to get adequately tested and treated in the UK.  One of our UK members that was successful told me this.


"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

I have some other thoughts for you, but I'm pressed for time right now, so will try to post more later.  

[Ezza_80]

Thank you, for your quick reply!!
I have brought a book on thyroid, called 'Your thyroid and how to keep it healthy'. I have read snippets in it, some of the terminology i dont understand, but i am going to read all of it and educate myself better with the subject.
I will ask my doctor to write down my results next time I go.
I asked the doctor if there is any other medication i could take, and she said no. I said about my reaction since being on the tablets, and she basically said thats unfortunate, but is just life!! Well its my life and im not willing to put up with this.
You mention T3, i remember they did test this in my original blood test, but since then they only test me for tsh levels.
Thank you again for your reply, I do feel a little more hopeful now that by being persistent with the doctors I may be able to get this sorted.

[flyingfool]

1st welcome.

2nd you said you are in the UK and others on this site have described issues with the national health care in the UK and getting proper treatment so you are going to have to be VERY patient and persistent and you may have to do a lot of educating of yourself.

Next I would ask if at all possible to get a copy of the blood lab results. In the USA the Dr's must by law provide the patient with a copy but I don't think that is true in the UK.

The medication you are taking is a synthetic (meaning man made) T4 hormone.  T4 hormone is a "storage" hormone,  By that I mean that the T4 remains in your blood and waits to be converted into T3 hormone (mostly in the liver).  Your body's cells ONLY use T3 hormone.

Anyhow the T4 hormone actually takes up to about 6 weeks to stabilize in your bloodstream.  It is not uncommon for people to initially feel worse when stating to take Thyroid hormone.  However your nearly immediate reaction would suggest to me the possibility that you are allergic NOT to the T4 hormone, but rather the fillers, binders or dyes that are used to make up the pill.  Simply changing manufacturers can often times reduce or eliminate this situation as each manufacturer may use different fillers and binders etc in their pills.

Finally you asked about Armour.  Rather than a man made synthetic, Armour and there are a few other brands ( Nature Thyroid & Erfa) are called natural dissected thyroid.  That means that the medicine is made from the thyroids taken (dissected) from pigs.  This is then mixed and manipulated by man to make pills.  Again some binders are used.  The interesting thing is that pig thyroid has BOTH T4 and T3 hormones.  Just like your natural human thyroid.  However pigs have a higher portion of T3 in their thyroid than humans.  This drug has been used for over 100 years however it has fallen out of favor by many Dr's because they do not believe that the dosages are as precise/accurate/consistent as man made synthetic pharmaceuticals.

Also from other UK people who have posted here.  Getting your Free T3 hormone tested is extremely difficult (it's not really that easy in the USA either but much easier it seems than in the UK).  Also I read at least once that stated that it is illegal for a Dr to prescribe a medicine with T3 in it in the UK.  IF this were true, I'm not sure that Armour would even be available in the UK for use since it contains T3 hormone.

That's as far as I will detail now.  I will encourage you to do a lot of reading on this site and educate yourself. You may even want to do some searches to see if you can isolate some UK thyroid discussions.